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Principles of Social Psychiatry

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Description: This second edition ofPrinciples of Social Psychiatry
appears more than 15 years after the first one, and even
a cursory comparison between the contents of the two
editions clearly documents that the scope and the
impact of the social component of our discipline and
profession have remarkably increased during the past
few years.
There is now a more widespread awareness of
the role of social risk factors even in the aetiology of
mental disorders that had been traditionally perceived
to be mostly biological in their causation. Schizophrenia is a good example. The research evidence concerning the association between some social factors – such
as urbanicity and a history of migration – and the
likelihood of developing a psychotic condition is now
quite robust, and there is also some evidence of a
synergy between these factors and familial liability in
the causation of the disorder.
Also increasing is awareness of the impact of social
factors on the identification and the diagnosis of
menta

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EATING DISORDERS 283 11. Russell, G. (1970) Anorexia nervosa: its identity as an 24. Smith, J. and Krejci, J. (1991) Minorities join the illness and its treatment, in Modern Psychological majority: eating disturbance among Hispanics and Medicine, vol. II (ed. J. Harding-Price), Butterworth, Native American youth. International Journal of Eat- London, pp. 1131–1164. ing Disorders, 10, 179–186. 12. American Psychiatric Association (APA) (1993) Diag- 25. Davis, C. and Katzman, M. A. (1998) Chinese men and nostic and Statistical Manual of Eating Disorders, women in USA and Hong Kong: body and self esteem Revised, APA, Washington, DC. ratings as a prelude to dieting and exercise. Interna- 13. World Health Organization (WHO) (1992) The ICD10, tional Journal of Eating Disorders, 23, 99–102. Classiﬁcation of Mental and Behavioural Disorders: 26. Nasser, M. (1997) Culture and Weight Consciousness, Clinical Description andDiagnostic Guidelines,WHO, Routledge, London. Geneva. 27. Nasser, M. (2000) Gender, culture and eating disorder, 14. Palmer, B. (2003) Concepts of eating disorders, in in Women’s Health, Cotemporary International Per- Handbook of Eating Disorders, 2nd edn (eds J. Treas- spectives (ed. J. Ushher), The British Psychological ure, U. Schmidt and E. Van Furth), John Wiley & Sons, Society, London, pp. 379–387. Ltd, Chichester, pp. 1–10. 28. King, M. and Bhugra, D. (1989) Eating disorders: 15. Dancyger, I. and Garﬁnkel, P. (1995) The relationship lessons from a cross-cultural study. Psychological Med- of partial syndrome of eating disorders to anorexia icine, 19, 955–958. nervosa and bulimia nervosa. Psychological Medicine, 29. Nasser, M. (1995) The EAT speaks many languages. 25, 1018–1025. Review of the use of the EAT in eating disorders 16. Lucas, A., Beard, C., O’Fallon, W. and Kurland, L. research. Eating and Weight Disorders, 2 (4), 174–181. (1991) 50-year trends in the incidence of anorexia 30. Nasser, M. (1994) The psychometric properties of the nervosa in Rochester, Minnesota: a population based eating attitudes test in a non-Western population. Social study. American Journal of Psychiatry, 148, 917–922. Psychiatry and Psychiatric Epidemiology, 29, 88–94. 17. King, M. and Mezey, G. (1987) Eating behaviours of 31. Szabo, C. P., Berk, M. and Tlou, E. et al. (1995) Eating male racing jockeys. Psychological Medicine, 17, disorders in black South African females. A series of 249–253. cases. South African Medical Journal, 85, 588–590. 18. Weight, L. and Noakes, T. (1987) Is running an analo- 32. Le Grange, D., Telch, C. F. and Tibbs, J. (1998) Eating gue of anorexia? A survey of the incidence of eating attitudes and behaviors in 1,435 South African Cauca- disorders in female distance runners. Medicine and sian and non-Caucasian college students. American Science in Sports and Exercise, 19 (3), 213–217. Journal of Psychiatry, 155, 250–254. 19. Orbach, S. (1986) Hunger Strike: The Anorexic Strug- 33. Abu-Saleh, M., Younis, Y. and Karim, L. (1998) Anor- gle as a Metaphor for Our Age, Norton, New York. exia nervosa in an Arab culture. International Journal 20. Williamson, I. (1999) Why are gay men a high risk of Eating Disorders, 23, 207–212. group for eating disorders? European Eating Disorders 34. Nabakht, M. and Dezkhan, M. (2000) An epidemiolo- Review, 7, 1–4. gical study of eating disorders in Iran. International 21. Rathner, G. and Messner, K. (1993) Detection of eating Journal of Eating Disorders, 28 (3), 265–271. disorders in a small rural town: an epidemiological 35. Nasser, M. (1986) Comparative study of the prevalence study. Psychological Medicine, 23, 175–184. of abnormal eating attitudes among Arab female stu- 22. Hoek, H., Aaad, I., Bartelds, M. et al. (1995) Impact of dents at both London and Cairo Universities. Psycho- urbanisation on detection rates of eating disorders. logical Medicine, 16, 621–625. American Journal of Psychoanalysis, 152 (9), 36. Nasser, M. (1994) Screening for abnormal eating atti- 1272–1285. tudes in a population of Egyptian secondary school 23. Nasser, M. and Katzman, M. (1999) Eating disorders: girls. Social Psychiatry and Psychiatric Epidemiology, transcultural perspectives inform prevention, in Pre- 29, 88–94. venting Eating Disorders, A Handbook of Interven- 37. Ford, K., Dolan, B. and Evans, C. (1990) Cultural tions and Special Challenges (eds N. Piran, M. Levine factors in the aetiology of eating disorders: evidence and C. Steiner-Adair), Brunner/Mazel, London and from body shape preference of Arab students. Journal New York, pp. 26–44. of Psychosomatic Research, 34 (5), 501–507.

284 SOCIAL DETERMINANTS 38. Fichter, M., Elton, M., Sourdi, S. et al. (1988) Anorexia 50. Krch, F. (1994) Needs and possibilities of prevention of nervosa in Greek and Turkish adolescents. European eating disorders in the Czech Republic. Presented at IV Archives of Psychiatry and Neurological Sciences, 237, InternationalConferenceonEatingDisorders,NewYork. 200–208. 51. Rathner,G.,Tury,F.,Szabo,M.etal.(1995)Prevalenceof 39. Apter, A., Shah, M., Ianco, I. et al. (1994) Cultural eating disorders and minor psychiatric morbidityin Cen- effects on eating attitudes in Israeli subpopulations and tral Europe before the political changes in 1989: a cross hospitalised anorectics. Genetic Social and General cultural study. Psychological Medicine, 25, 1027–1035. Psychology Monographs, 120 (1), 83–99. 52. Catina, A. and Joja, O. (2001) in Emerging markets: 40. Mumford, D. B. and Whitehouse, A. M. (1988) submerging women, in Eating Disorders and Cultures Increased prevalence of bulimia nervosa among Asian in Transition (eds M. Nasser, M. Katzman and R. school girls. British Medical Journal, 297, 718. Gordon), Routledge (Taylor & Francis Group), London 41. Lee, S. (2001) Fat phobia in anorexia nervosa: Whose and New York, pp. 111–127. obsession is it?, in Eating Disorders and Cultures in 53. Gordon, R. (2001) Eating disorders East and West: a Transition (eds M. Nasser, M. Katzman and R. Gor- culture-bound syndrome unbound, in Eating Disorders don), Brunner-Routledge (Taylor & Francis Group), and Cultures in Transition (eds M. Nasser, M. Katzman London and New York, pp. 40–66. and R. Gordon), Bruner-Routledge (Taylor & Francis 42. Suematsu, H., Ishikawa, H., Kuboki, T. and Ito, T. Group), London and New York. (1985) Statistical studies of anorexia nervosa in Japan, 54. Nasser, M. and DiNicola, V. (2001) Changing bodies, detailed clinical data on 1,011 patients. Psychotherapy changing cultures: an intercultural dialogue on the body and Psychosomatics, 43, 96–103. as the frontal frontier, in Eating Disorders and Cultures 43. Mukai, T., Crago, M. and Shisslack, C. (1994) Eating in Transition (eds M. Nasser, M. Katzman and R. attitudes and weight preoccupation among female high Gordon), Brunner-Routledge (Taylor & Francis school students in Japan. Journal of Child Psychology Group), London and New York, pp. 171–194. and Psychiatry, 33, 677–688. 55. Lee, S. and Lee, A. (1996) Disordered eating and its 44. Ohezeki, T., Haanaki, K. and Motozumi, H. et al. psychosocial correlates among Chinese adolescent (1990) Prevalence of obesity, leanness and anorexia females in Hong Kong. International Journal of Eating nervosa in Japanese boys and girls aged 12–14 years. Disorders, 20, 177–183. Annales of Nutrition and Metabolism, 34, 208–212. 56. Rathner, G. (2001) Post-communism and the marketing 45. Pumarino, H. and Vivanco, N. (1982) Anorexia ner- of the thin ideal, in Eating Disorders and Cultures in vosa: medical and psychiatric characteristics of 3 Transition (eds M. Nasser, M. Katzman and R. Gor- patients. Revista Medica de Chile, 110, 1081–1092. don), Brunner-Routledge (Taylor & Francis Group), London and New York, pp. 93–111. 46. Nunes, M., Bagatini, L. and Salvador, C.( (1991) April) What to think of anorexianervosain Brazil, a country of 57. Nasser, M. and Katzman, M. (2003) Sociocultural hunger and undernourishment? Poster presentation at theories of eating disorders: an evolution in thought, the International Symposium on Eating Disorders, in Handbook of Eating Disorders, 2nd edn (eds J. Paris. Treasure, U. Schmidt and E. Van Furth), John Wiley 47. Meehan, O. and Katzman, M. (2001) in Argentina: The & Sons, Ltd, Chichester, pp. 139–151. Social Body at Risk in Eating Disorders and Cultures in 58. Skarderud, F. and Nasser, M. (2007) (Re)ﬁguring iden- Transition (eds M. Nasser, M. Katzman and R. Gor- tities: my body is what I am, in The Female Body in don), Brunner-Routledge (Taylor & Francis Group), Mind. The Interface between the Female Body and London and New York, pp. 146–171. Mental Health (eds M. Nasser, K. Baistow and J. Treasure.), Routledge (Taylor & Francis Group), 48. Szabo, P. and Tury, F. (1991) The prevalence of bulimia London and New York. nervosa in a Hungarian college and secondary school population. Psychotherapy and Psychosomatics, 56, 59. Shapiro, J. R., Bulik, C. M., Reba, L. and Dymek- 43–47. Valentine, M. (2005) CD-ROM and web-based CBT treatment for BED and obesity. Paper presented at the 49. Warczyk-Bisaga, K. and Dolan, B. (1996) A two stage Academy of Eating Disorders International Conference epidemiological study of abnormal eating attitudes and on Eating Disorders, Montreal Canada, April 27th to prospective risk factors in Polish school girls. Psycho- 30th, 2005. logical Medicine, 26, 1021–1032.

22 Social factors that influence child mental health Nisha Dogra Greenwood Institute of Child Health, University of Leicester, Leicester, UK As with adult mental health problems, the mental these are covered elsewhere in this book. The general health problems of childhood and adolescence usually impact of such variables in adulthood can be assumed have a multifactorial aetiology. Problems tend to to extend to childhood. develop from a combination of biological (e.g. In this chapter the term ‘young people’ is used to genetic), psychological (e.g. individual factors such refer to children and adolescents up to 18 years of age. personality type, temperament) and social factors (e.g. The term ‘child’ is used to refer speciﬁcally to young familial and school). Here, the focus will be on social people under 12 years of age and ‘adolescent’ is used factors, particularly the family and school, that inﬂu- to refer to those between 12 and 18 years of age. ence the development of mental health problems in Having deﬁned theseterms, it is important to acknowl- children and young people. Families and schools are edge at the outset that ‘childhood’ and ‘adolescence’ fairly universal factors that young people are exposed are social constructs; in different contexts and for each to and are important features in their lives. However, gender they may be given very different meanings [1]. there is a need to remember that this is always just part In turn, the meaning of childhood and adolescence of the whole picture. Broader political and cultural may inﬂuence parenting styles, as parents raise and inﬂuences (e.g. homelessness, poverty and the wider respond to their children in culturally and socially social environment) will be dealt with more brieﬂy, as prescribed ways. 22.1 SOCIAL CONTEXTS AND EXPERIENCES Social factors are, to varying degrees, of undoubted inﬂuences is not easy. Despite the investment importance in the prevention, development and main- in genetic research, we have learnt relatively little, tenance of mental health problems. As Jenkins [2] especially in how the new information can be used to highlights, disentangling genetic from environmental offer more effective treatment strategies. This may be Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

286 SOCIAL DETERMINANTS unsurprising given that most mental health disorders wider local community such as the neighbourhood. are multifactorial. It is unlikely that genetics will ever The macrosystem is usually more remote, butmay still explain the whole picture. be a major social inﬂuence, e.g. through socioeco- Bronfenbrenner’s [3] model of layered contexts is nomic policy on child rearing, education and health a fairly widely used model. The layers are the micro- policies, and wider social and cultural contexts. It is system, mesosystem, exosystem and macrosystem. worth noting that different factors may be important at The ﬁrst layer (microsystem) is at the level of the various stages of the child’s life. Some adverse family relationships in which the child is actively involved, factors may be mitigated by external factors that come e.g. with parents, siblings and peers. These interac- into play as children get older (e.g. peer support). As tions inevitably depend on context and the child’s noted, broad social and cultural contexts are not characteristics (or personality). The mesosystem covered in detail in this chapter, but readers interested describes how the different components of the in pursuing this may ﬁnd the following references microsystem come together. The exosystem is the useful [4–6]. 22.2 FAMILY ENVIRONMENTS There are many social factors that play an important the norm, as it ﬁts with notions of the primacy of the part in children’s lives but the most important is collective (versus the individual), which emphasizes almost certainly the role of the family. While the responsibility to others, obedience and dutifulness. In precise make-up of families may be culturally vari- contrast, ‘Western’ cultures are perceived to be more able, the concept of the family is universal. In this individualistic, encouraging children to be more self- section I will address the aspects of family that may reliant, assertive and independent. have a signiﬁcant impact on young people’s mental However,asnoted,thelikelihoodisthatwithinthese health. broad categories, different styles of parenting can be identiﬁed. McLoyd et al. [9] argue that apparent dif- ferences in child-rearing practices among different 22.2.1 Parenting ethnic groups may reﬂect the lack of rigorous research rather than real differences; there may be much more The role of parenting is to nurture the child adequately diversity within than between ethnic groups. The and prepare them for adulthood (whether that is child’s perception of discipline and the parent may independent living or living in an adult role within also be relevant in the way these styles play out. an extended family). Parenting styles are of course Further facets of parenting styles can be delineated strongly inﬂuenced by broader cultural and political that may impact on mental health and development. factors. There are widely accepted to be four different Figure 22.1 summarizes the level of control and types of parenting styles, which bring with them emotional warmth that are assumed to feature in each different advantages and disadvantages. Baumrind [7] of the parenting styles noted above. Each of these identiﬁed authoritative, authoritarian and permissive styles in considered in more detail below. parenting styles. Macoby and Martin [8] divided permissive parenting into two subtypes – neglectful and indulgent. 22.2.2 Authoritative parenting Using this typology to identify the most common parenting styles across cultures inevitably involves Stereotypically, authoritative parents make demands generalizations and no doubt obscures important var- that ﬁt with their children’s ability to take responsi- iations within cultural groups. This caveat aside, some bility for their own behaviour. Children, it is useful insights can be gained. In ‘Eastern’ cultures suggested, subsequently learn that they are competent authoritarian parenting may more often be considered individuals who can do things successfully for them-

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH 287 High control High control High warmth Authoritarian Authoritative Permissive neglectful Permissive indulgent Low control Low warmth High warmth Figure 22.1 Parenting styles selves, which then fosters high self-esteem, cognitive that does not mean that young people are less development, and emotional maturity. Characteristics stressed [11]. of authoritative parenting include: emotional support, clear bidirectional communication; ﬁrm limit setting, reasoning and responsiveness [7]. Warm supportive 22.2.3 Authoritarian parenting parenting aids child development and helps children to regulate their own emotions and behaviours. It may In contrast, authoritarian parenting is described as also be protective in adverse circumstances. Because punitive and directive. Again stereotypically, parents parents are responsive to their children and there is who use this style are unlikely to discuss rules and will bidirectional communication, children are more emphasize discipline and obedience [7]. The views of likely, according to this framework, to learn to express young people are deemed to be of little importance their perspective in a constructive socially accepted irrespective of age. It is implied that this style is not way. This type of parenting requires a secure attach- responsive to young people’s emotional needs; how- ment with the primary caregiver, a positive relation- ever, in practice this may not be the case. Punishment ship between the parent/child and age-appropriate and is associated with improved compliance in young consistent disciplinary practices; for example, reason- people but, as its impact may be dependent on many ing with a younger child may be inappropriate in variables, it is a less reliable factor [10]. For example, the context of the child’s development. Bradley and physical discipline predicts higher levels of aggressive Corwyn [10] conclude that parental stimulation and behaviour in children of white European-American responsiveness are consistently associated with child parents than in children of African-American par- adaptation and well-being irrespective of the culture. ents [11]. This suggests that physical discipline may However, relationships are dynamic and parenting be more detrimental if it is not the norm within the styles may change over time and be different for wider culture. Nonetheless, there is evidence that different children. Authoritative parenting is asso- young people who experience this type of parenting ciated with positive psychological adjustment but are more likely to be anxious. Woodward et al. [12] the fact that this comes from a particular cultural found that disciplinary aggression was a strong pre- perspective cannot be ignored. Authoritative parent- dictor of hyperactivity in school-aged boys, indicating ing is not associated with good academic performance that parenting styles can inﬂuence how neurodevelop- for African- and Asian-American children; however, mental disorders manifest themselves.

288 SOCIAL DETERMINANTS 22.2.4 Permissive parenting the mental health of Arab adolescents. The gendered nature of the relationship between permissive parent- Both permissive styles of parenting – neglectful and ing styles and psychiatric disorder in boys, moreover, indulgent – make few demands on children, with may be a function of the complex relationship limited boundaries. In the case of neglectful parenting between family, gender and wider culture. A study there is reduced care or supervision [13] and, in with an Egyptian sample, for example, found that in extreme form, there is a lack of responsiveness to the rural communities parents were more likely to use needs of children, emotional or otherwise. Indulgent authoritarian styles with boys and authoritative styles styles may also be problematic as again there are with girls, whereas in urban areas the authoritarian limited boundaries – the child is just given every- style was more commonly used for girls [17]. Female thing [7]. There is evidence that ‘overindulged’ chil- adolescents had more psychological disorders in rural dren show poor emotion regulation (underregulated) and urban communities with urban females showing and rebel when they cannot have their own way. more conduct disorder than their rural female counter- ‘Overindulgent’ parenting may be used to avoid hav- parts. It is difﬁcult to be clear if the parenting ing to deal with the conﬂicts that may arise or to style causes or is a response to conduct disorder. manage parental separation and hostility. Parents may feel that the urban environment presents In general, research has tended to compare author- more risk to females, so parenting styles may change itative and authoritarian parenting styles and this may to mange the perceived risk. This study demon- reﬂect the generalization that these styles are the norm strates that gender and cultural contexts are highly in Western and non-Western cultures respectively. The inﬂuential. The study further found that authoritative effects of neglectful parenting that does not culminate parenting did not lead to individuation, as in Western in abuse appear to be less clear, but it is likely that samples, and again it highlights the likely complex young people do not develop trust, manage their interactions that lead to speciﬁc outcomes for young emotions effectively or achieve their potential. There people. is, moreover, evidence that ‘overindulged’ children are more likely to engage in risk-taking behaviour (such as substance misuse), as they further challenge 22.2.6 Parental illness (mental and push limits [7]. and physical) A recent detailed review in the UK found that, during 22.2.5 Cross-sample variations early and middle childhood, parenting styles (assessed using a parenting score derived from various mea- Querido et al. [14] found that in African-American sures) did not vary systematically according to the families with preschool children authoritative parent- age, educational level or ethnic group of mothers or ing styles were most predictive of fewer child beha- fathers [18]. In this review, it was further found that viour problems. The authors argue that this adds to the deteriorations in ﬁnancial circumstances were asso- literature that authoritative parenting is ‘good’. Heider ciated with reductions in parenting scores but, at the et al. [15] found that across six European countries same time, increased ﬁnances did not necessarily lead adverse parenting (lack of care, overprotective) was a to improved scores. Deteriorations in maternal phy- risk factor for anxiety disorder, as well as psychiatric sical or mental health were associated with a reduction disorder in general. in parenting scores. In contrast to all other variables Dwairy [16] found that in a Palestinian sample reviewed, improvements in maternal health predicted permissive parenting was associated, in boys, with increases in parenting scores. If both parents have poor negative attitudes towards parents, lower self-esteem mental health, the outcomes are worse for young and increased identity and anxiety, phobia, depressive people, especially boys. It may also be that the affect and conduct disorders. However, there was no in boys is more easily measured and the impact on clear relationship between authoritarian styles and girls may be longer term. Poor maternal mental health

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH 289 appears to be associated with an increased risk of 22.2.7 Family function and parental developmental delay and both externalizing and inter- discord nalizing disorders, with boys again being more vul- nerable. Poor paternal mental health was also asso- Parental discord and disharmony impacts on chil- ciated with poor cognitive development and perhaps dren’s mental health in many ways. Jenkins and an increased risk of behavioural problems. Smith [23] found that children being raised in homes This reinforces a widely established risk factor, and with high conﬂict showed more disruptive behaviour Foreman [19] summarizes that maternal illness can act than those being raised in homes with low conﬂict. as an aetiological factor in child mental health pro- The effects of conﬂict could be mitigated by having a blems. Equallytheremay be factors related tothechild close sibling or a relationship with grandparents. It is that inﬂuence maternal mental health. Parental mental usually through parental conﬂict and parental unavail- illness, especially maternal mental illness, can impact ability that separation and divorce most impacts on signiﬁcantly on young people. Postnatal maternal ill- young people’s mental health. ness may affect child–mother attachment and, if unad- dressed, lead to later problems. The impact may be mitigated by factors that offset these disadvantages, 22.2.8 Abuse e.g. an effectivealternate caregiverstepping in. Mater- nal mental illness may also impact onthechild directly Abuse within the family context can lead to a number because of how it impacts on maternal behaviour and of problems. In younger children it may lead to the maternal ability to parent. The World Health Orga- behavioural problems. Early experiences of physical, nization [20] argues that prolonged and/or severe sexual abuse and/or parental neglect are risk factors parental mental illness can, for example, lead to less for suicidal behaviour in adolescents as well as depres- sociable behaviour and responsivity to others in chil- sion [24]. Abuse (physical and sexual) has also dren aged under ﬁve years. Development in all areas been linked to a host of adverse adult outcomes (see may be delayed, especially speech in boys. In older Chapter 13). children, there may also be delayed development and higher rates of school and behavioural problems. Adewuya et al. [21] found that infants of depressed Nigerian mothers were more likely to have had breast- 22.2.9 Sibling illness and/or disability feeding stopped earlier and to have more infectious illnesses, over a nine-month follow-up period. It While it is generally accepted that children with a seems highly plausible that any maternal illness is disability (physical or learning) or chronic illness are likely to have an impact on their children. The dif- at increased risk of mental health problems (e.g. see ference in different cultures may be whether the Reference [25]), it is now increasingly clear that negative impact is mitigated by protective factors. An siblings of those with a disability/illness are also at additional stress may be that theyoung person takes on signiﬁcant risk of experiencing mental health pro- the role of carer for their ill parent. blems. Mulroy et al. [26], for example, described a Mental illness among young people may also study on the impact of having a sibling with Down’s or impact on the parent–child relationship. Dietz Rett’s syndrome using a questionnaire completed by et al. [22], for example, found that mother–child parents. Parents identiﬁed major disadvantages to interactions in depressed youths were marked by siblings around parental and personal time con- maternal disengagement and less positive interac- straints, relationships and parental emotions and bur- tions, which may not improve even when the child den of helping. Major reported beneﬁts were related to recovers. However, they could not disentangle personality characteristics. The authors argue for whether the relationship problems preceded the onset these ﬁndings to be incorporated into any discussion of depression or were in fact a consequence of depre- on the impact of illness on the family. However, a ssion in the young person. major limitation is that parental perspectives may

290 SOCIAL DETERMINANTS differ quite markedly from those of the young people There is thus strong evidence that disability or themselves. For reasons of their own, parents may illness in a sibling can have an adverse impact on need to identify beneﬁts that are not a reality for the other children within the family. sibling(s). There may also be a need for siblings to repress their own responses to live up to the expecta- tions of the adults around them. Sibling organizations 22.2.10 Religion (e.g. see Reference [27]) argue that support for sib- lings is crucial to minimize negative impacts by, for There is some evidence that attendance at religious/ example: spiritual programmes is associated with several aspects of child well-being, above and beyond parent- . acknowledging siblings, concerns and enabling sib- ing styles. One study, for example, found that family lings to have typical feelings (e.g. not to minimize attendance was associated with greater child well- anger or frustration against the index sibling); being, including fewer internalizing behaviours [28]. However, where parental belief drives certain types of . setting some expectations for the child with special parenting it may actually have a negative impact with needs as this may help reduce resentment or a sense more externalizing behaviours and hyperactivity. It of unfairness; may also be that this becomes an area for potential conﬂict during adolescence when young people start . entitlement to a safe environment. developing their own ideas. 22.3 SCHOOL ENVIRONMENTS After home, school is where young people spend most promotion [31]. As yet there is limited evidence to of their time, so it is unsurprising that school environ- demonstrate what difference this has made. ments and experiences are an important factor when As Zins et al. [32] state, intrinsically schools are considering the mental health of young people. social places and learning is a social process, so it Schools can have a very positive impact on children comes as no surprise that schools can help young and mitigate some of the negative impacts of other people develop self-esteem and learn the language to social factors, including aversive home environ- acknowledge and address emotions (both positive and ments [29]. However, for some young people they negative) [32,33]. Young people do not on the whole can be a considerable source of stress, worry and learn alone. In the best case scenario they do so in unhappiness, particularly if bullying is experienced. collaboration with their teachers, in the company of In this section we consider what can help create an their peers and friends, and with the support of their environment that promotes good mental health. families and the wider cultural and political system. Elias [30] has argued that schools are most successful There has also been some pressure in the UK for in their educational mission when they promote aca- schools to be more socially inclusive ([33], p. 45). demic, social and emotional learning. What this However, while the intent may be laudable, the reality clearly recognizes is that emotions can facilitate or for young people may be that mainstream education hamper young people’s learning. fails to meet their educational needs and can lead to It has been long established that there are certain considerable disaffection with the educational system. types of schools that are associated with fewer mental The lack of academic success can lead to poor self- health problems [29]. Some schools have perhaps esteem, behavioural problems and marginalization. always considered more than just academic learning. As Mortimore [29] identiﬁed, where young people are However, over the last decade in the UK, there ‘committed’ to the school through their peers and has been an increasing political emphasis on staff, they do better academically. Where schools giving schools responsibility for mental health are unsupportive with poor relationships, there are

SOCIAL FACTORS THAT INFLUENCE CHILD MENTAL HEALTH 291 problems with absenteeism and depression for staff success is interdependent), individual accountability and students. for their role, promotion of each other’s success and Weare [33] argues that there are many reasons that development of interpersonal and small group skills. mental health issues have become even more impor- However, society as a whole may challenge these tant for schools, citing the breakdown of social struc- aspirations. It is not communities but individuals who tures and increased pressure on the young. However, are judged for jobs and rewards. Successful schools do perhaps the most important reason is that schools are not only have an internal sense of community, they where young people are legally required to spend so also develop partnerships with the families of young much of their time. There has been an increasing people and the wider community [36]. amount of evidence to indicate that schools do better While teachers may state that they frequently when they create a particular kind of environment than recognize mental health needs among children and when they focus on teaching about mental health in young people, and would welcome training to develop isolated parts of the curriculum [34,35]. their capacity to make a difference, in practice this is Weare [33] summarizes the four key elements that not usually borne out [37]. Weare [33] and Zins have been shown to be crucial for schools to deliver et al. [32] highlight key issues that schools may need academic effectiveness and for them to ensure that to address in order to tackle this issue. their pupils are emotionally healthy and socially Much has been talked about the impact of bully- appropriate. The four elements are supportive rela- ing, and the media has speculated that it leads to tionships, a high degree of participation by staff and suicide. While this is often exaggerated, there is no pupils, the encouragement of autonomy in staff and doubt that bullying can have a signiﬁcant impact on pupils, and ﬁnally clarity about rules, boundaries and the mental health of young people. Bond et al. [38] expectations. It is worth noting how this compares found that bullying was associated with later anxiety with ‘authoritative’ parenting. It is hardly surprising and depression, especially for girls. It can also lead that warm and supportive relationships help young to school avoidance. For young people the way people learn better and perhaps also create a more schools tackle the problem can be an important productive working environment for teachers. factor. It will become obvious that schools that meet Johnson and Johnson [36] present a framework and the criteria for generating positive academic envir- demonstrate how schools can promote social and onments are more likely to successfully deal with emotional learning through creating a cooperative such issues. community, constructive conﬂict resolution and It is worth ﬁnishing with a comment from young civic values. A cooperative community is effectively people themselves. When asked what made them feel created where there is a strong sense of positive good, a common response was ‘doing well at interdependence (i.e. a sense of believing each other’s school’ [37]. 22.4 SOCIOECONOMIC CONTEXTS More brieﬂy, I now turn to broader factors (covered in psychiatric disorder were strongly associated with detail in other chapters, e.g. Chapters 6, 14 and 27). poverty, maternal psychiatric illness and family vio- Here, some illustrative research speciﬁc to young lence [39]. The authors cautioned against concluding people’s mental health is outlined. that social adversity always leads to children’s beha- vioural problems. They suggest that the children’s problems may evoke maternal depression or harsh 22.4.1 Poverty discipline. They do, however, state that tackling pov- erty as well as other factors is likely to help improve In a community sample of Brazilian children and child mental health. This example is illustrative, and adolescents aged 7–14 years, higher rates of probable the principle extends to all contexts.

292 SOCIAL DETERMINANTS 22.4.2 Neighbourhoods may have been biased by the inclusion of large numbers of mothers with a mental disorder. The There is good evidence that between 5 and 10% of the authors concluded that a longitudinal study is needed variance in emotional and conduct problems can be to understand better the impact of residential instabil- attributed to deprived neighbourhoods [40,41]. Again, ity on children’s mental health. However, those with however, it is rarely a single causal factor. Socio- residential instability almost invariably also experi- economic disadvantage is in itself a risk factor for both ence poverty, which emphasizes the interconnected- parental depression and childhood mental health ness of these factors. problems. 22.4.3 Homelessness 22.4.4 Life events In one study, while maternal homelessness in itself did Further, life events such as bereavement, parental not have a signiﬁcant association with emotional separation, accidents and the like impact on some problems, it did not impact on school enrolment and children more than others. Emotional disorders such attendance [42]. However, effects may be indirect, in as anxiety and depression are more likely in this that the consequent lack of attendance may impact on context, although these may be expressed through the child’s ability to develop socially. Children’s behavioural problems at home and school [43]. How- emotional health, in this study, was however affected ever, it can be difﬁcult to know which children are at if homelessness was compounded by poor maternal greater risk as it is usually a culmination of factors. health and exposure to trauma. There is a need for There is some evidence that openness with children caution in interpreting these ﬁndings, as the sample may help them cope with the changes they face. 22.5 SUMMARY In this chapter we have looked at social factors and 2. Jenkins, J. (2008) Psychosocial adversity and resili- their relationship with child mental health problems. ence, in Rutter’s Child and Adolescent Psychiatry, 5th However, it is important to remember that rarely is edn (eds M. Rutter, D. Bishop, D. Pine, S. Scott, J. there a direct cause and effect relationship; invariably Stevenson, E. Taylor and A. Thapar), Blackwell Pub- lishing, Oxford, pp. 377–391. it is the interplay of social factors with biological and psychological factors that determine whether a child 3. Bronfenbrenner, U. (1979) Contexts of child rearing: problems and prospects. American Psychologist, goes on to develop mental health problems or not. That 34, 644–850. said, children and young people are perhaps at the 4. Dogra, N., Vostanis, P. and Karnik, N. (2007) Child greater mercy of social factors and have less power to and adolescent psychiatric disorders, in Textbook inﬂuence their social world. Consequently, under- of Cultural Psychiatry (eds D. Bhugra and standing how social environments affect mental K. Bhui), Cambridge University Press, Cambridge, well-being and, more importantly, how we can inter- pp. 301–313. vene to lessen these effects is imperative and gives 5. Karnik, N., Dogra, N. and Vostanis, P. (2007) The urgency to ongoing research and intervention efforts. management of child and adolescent psychiatric dis- orders, in Textbook of Cultural Psychiatry (eds D. Bhugra and K. Bhui), Cambridge University Press, REFERENCES Cambridge, pp. 471–483. 6. Vostanis, P. (ed.) (2007) Mental Health Interventions 1. Walker, S. (2005) Culturally Competent Therapy: Working with Children and Young People, Palgrave and Services for Vulnerable Children and Young Macmillan, Basingstoke. People, Jessica Kingsley Publishers, London.

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23 Social determinants of late life disorders Robert Stewart Section of Epidemiology, Institute of Psychiatry, King's College London, London, UK 23.1 WHAT IS SO SPECIAL ABOUT `LATE LIFE'? The practice of including a chapter on ‘late life’ in allowed to focus exclusively on that age group. With general textbooks incurs potential risks and it is worth people in post-retirement age ranges comprising ever taking some time to consider the need for such an higher proportions of most nations’ populations, this account before embarking on it. Specialist considera- approach is conceptually ﬂawed as well as tion of‘early life’ ismuch more easily justiﬁed because being inequitable and unethical. On the other hand, in syndromes of mental distress occurring in childhood consideringsocialcausationofmentaldisorders,itmay are self-evidently different in their aetiology and man- be entirely appropriate to treat ‘late life’ as a minority ifestations compared to those occurring in adulthood, subject since the majority of late life disorders, even although there are undoubtedly strong continuities those arising de novo in late life, are likely to have between the two life stages. These differences are determinants that stretch back across the life course. much less evident for late compared to earlier adult Important issues to emphasize at the outset are life – older people develop depressive disorders, psy- therefore that late life can in many ways be considered chotic disorders, anxiety disorders and so on in much as a continuation of earlier life with the same risk thesamewayasyounger peopledo.Evendementia can factors and outcomes but that these interrelationships occur at any age, although clearly is a more common need to be conceptualized as occurring over a much consideration in later life. Although there are some longer period and therefore as incurring added com- differences in the ways in which mental disorders plexities (which unfortunately have not been manifest and in the salience of particular risk factors, adequately captured by the relatively simple research these are not substantial and differences between designs to date). However, having emphasized groups within the ‘late life’ range are probably more (qualitative) similarities in the aetiology and mani- marked than those between late and earlier adult life. festations of mental disorder from early to late adult The principal danger arising from specialist con- life, there are important (predominantly quantitative) sideration of ‘late life’ is that the remainder of a text- differences that probably form enough of an argument book is assumed to apply only to younger adults or is for specialist consideration: Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

296 SOCIAL DETERMINANTS 1. Organic brain syndromes, principally disorders the workplace also clearly undergo potentially causing dementia, clearly become substantially dramatic changes following retirement, as the more common with increasing age. These are maintenance of networks beyond family ties relevant for this chapter not only because they becomes increasingly an individual’s personal represent mental disorders with substantial, though responsibility, particularly in more isolating urban often underappreciated, social determinants but environments. also because they have important social impacts, and therefore are themselves social determinants 5. The concepts of social class and socioeconomic of other disorders – both for the person affected and status also change. Income levels after retirement for those providing care. are obviously strongly inﬂuenced by prior occupa- tional status, but may become subject to more 2. Most chronic somatic disorders become substan- diverse and less predictable inﬂuences – from the tially more common in later life and have an performance of a savings scheme to costs incurred important inﬂuence on the social aetiology of through ill-health, housing and caregiving duties. mental disorder – both through direct effects of For better or worse, an individual’s available disablement on the individual, which may modify capital becomes increasingly predetermined with the importance of the social environment, and steadily more limited opportunities for wealth through the effects of disablement on the social creation or borrowing. environment itself (e.g. through the need for care provision). 6. The inﬂuence of the built environment may alter for those people who develop physical disabilities, 3. Related to somatic disorders, but with distinct with ease of access becoming a more salient issue features in its own right, ‘frailty’ becomes more and unwanted social isolation becoming a more salient in later life, particularly from the ninth serious risk. At later ages, or with more severe decade onwards. This concept, while intuitive, disability, there are important and very difﬁcult remains poorly understood. Chronic somatic dis- choices to be made between maintaining indepen- orders, functional mental disorders and organic dence at the risk of more social isolation and brain syndromes are important components of moving into an environment that is more suppor- frailty, but there may also be more generic age- tive but that entails a reduction of personal related physiological changes (such as weight loss autonomy. and loss of skeletal muscle) underlying its mani- festations. The impact of frailty on the social 7. A key difference between earlier and later adult life determinants of mental disorder is similar to that with respect to manifestation of mental disorder is of disability, described above. in the inﬂuence of the years of life experienced up to that point. As described earlier, manifestation of 4. Important changes occur in the social environment a disorder later in life implies a potentially longer in later life. There are obviously pronounced struc- period over which risk factors may have been tural changes in social networks, around mid-life operating, and a potentially more complex causal for most people, with the loss of parents and the model. However, it also has implications for the preceding generation. Later, there is a growing disorders or risk factors themselves. For example, reliance on younger generations as mortality and although ‘personality’ continues to exert an inﬂu- disability reduce same-generation support net- ence in later life, people who have lived this long works in those who survive to more advanced old have had a longer opportunity to adapt (or adapt to) age, linked to a social expectation (which may their social environment, and it is likely that those represent a considerable hurdle) that the older with more extreme traits will have found ways person switches from a care-providing to a care- either of modifying the traits or of ﬁnding a social receiving role. Social networks derived from milieu or life-style that minimizes earlier adverse

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS 297 inﬂuences of such traits. Personality disorder there- disorder is strongly inﬂuenced by the likelihood fore becomes much less prevalent in later life – but of surviving long enough to develop it. This is the extent to which this reﬂects a diminution in particularly true for dementia and it is still unclear strength of personality traits or in their impact on the extent to which dementia, with sufﬁcient long- social/occupationalfunctioning is notclear (and the evity, is inevitable. Surprisingly, despite this two are not necessarily distinguishable). potential bias, most risk factors for late life mental disorders (particularly dementia) are also risk 8. Survival is an important factor for all research in factors for mortality. This complicates conclu- later life although its inﬂuence remains remark- sions about preventing a given outcome through ably poorly understood. Most mental disorders modifying the risk factor, if doing so also become more common in more advanced old age improves survival and, therefore, the chances of and therefore the absolute risk of a late life developing the outcome. 23.2 WHAT IS `LATE LIFE'? As can be inferred from what has been considered so quently higher reliance on formal or informal care- far, ‘late life’ is a broad term and difﬁcult to deﬁne. givers). Probably the only justiﬁable reason to use a Statutory retirement age is often used as a cut-off point ‘65þ ’ cut-off for epidemiological research is simply to separate ‘mid-life’ from ‘late life’. This may suit because it has most often been used before – that is, so clinical service models, where a strict criterion is that results can be most easily compared with those helpful but has little intrinsic usefulness for research. from other samples. It is rarely justiﬁed by speciﬁc ‘Retirement’ is a culture-bound entity, not being an hypotheses or research questions. Studies of dementia option for the majority of the world’s population, and are much better focused on older age groups, since the ages of retirement are likely to become substantially majority of any ‘65þ ’ sample will be within the ﬁrst less statutory with political and economic responses to decade of that range, where the prevalence of demen- demographic ageing in high-income nations (and the tia is unlikely to be above 5%. Studies of mood most commonly used ‘65þ ’ cut-off has of course disorders, on the other hand, are better focused either always been a male-oriented deﬁnition). ‘Post-retire- on samples aged 50–70 years, to reﬂect the period ment’ populations include a very wide spectrum of around retirement as an important life-transition, or individual characteristics and social worlds from else on samples aged 80 years and above, to reﬂect the recent retirees, who can expect to be in good general period when physical ill-health and frailty become health with no signiﬁcant disabilities (and who may salient issues. indeed still be caring for parents or other members of The remainder of this chapter will focus particu- the preceding generation), through to survivors in larly on the social aetiology of dementia, as a disorder their 90s or above with much higher levels of frailty, of particular importance in late life, followed by a high (although by no means universal) prevalence of consideration of other disorders, particularly late life dementia and with social networks substantially depression, where the differences with earlier adult restricted by bereavements and disability (and conse- life are more in extent rather than nature. 23.3 THE SOCIAL DETERMINANTS OF DEMENTIA Because of the distinction made between ‘organic’ disease, social determinants have received substan- and ‘functional’ mental disorders, and because of the tially less attention. However, there is no good scien- huge volume of neurobiological and genetic research tiﬁc justiﬁcation for this perspective since it is well into the causes of dementia, particularly Alzheimer’s established that there are important environmental

298 SOCIAL DETERMINANTS determinants of risk of dementia and the most salient the US where linguistic ability in early adult life of these – education and vascular disease – are known (estimated from written material prepared at entry to to have very strong social determinants. Before con- the order) was associated with a lower risk of Alzhei- sidering late life, it is worth pointing out that the most mer pathology in post mortem brain donations [5]. common cause of dementia in earlier adult life, HIV A variety of other mechanisms may also have a role. infection, can be said to be almost entirely socially For example, people with higher levels of education determined. are likely to lead healthier lives, in particular with respect to vascular risk factors (discussed further below), which may account for at least some of the 23.3.1 Education and early life protective effect on dementia risk. There is also some disadvantage evidence that higher education may modify in a protective manner the impact of vascular risk factors The protective effect of higher education on risk of on cognitive function [6,7]. dementia is widely recognized but the reasons for this Education, whether measured by duration of are still not fully understood. Probably the most schooling or qualiﬁcations obtained, is strongly inter- popular explanation is the ‘cognitive reserve hypoth- related with socioeconomic status, both at the time of esis’. This proposes a mechanism whereby people education and after schooling has been completed, with higher levels of education are able to sustain a and may be simply a marker of a complex entity that higher level of neurodegeneration before they develop reﬂects both a social milieu and an individual’s what would be called ‘clinical dementia’ – i.e. before response to it. At least part of the effect of education cognitive decline has reached a point where it is on late life dementia may be mediated through the interfering with daily activities. In a sense, this is social status achieved by the individual in the inter- purely an artefact of the way in which dementia is vening period. Although social status tracks strongly deﬁned (i.e. in common with other deﬁnitions of across the life course, there is also the possibility that mental disorder, the requirement that the syndrome individuals may counter that trend. It is quite possi- is not merely present but is severe enough to affect ble, for example, that protection against dementia daily functioning). This hypothesis predicts that peo- may be conferred by educational interventions in ple with higher education, when they develop demen- mid- and even late life, regardless of earlier disad- tia, will have a more aggressive clinical course vantage. Whether this reﬂects the actual interventions (because of more advanced brain pathology at the or the personality of the individuals who are sufﬁ- point of diagnosis). There is a reasonable amount of ciently self-motivated to seek them remains to be evidence to support this, with the combination of determined. higher education and dementia being associated with Other aspects of early life social environments may morerapidcognitivedecline[1,2],highermortality[3] be important beyond education but have received and more advanced disease suggested by neuroima- much less attention. Growth and brain maturation are ging ﬁndings [4]. examples. Several studies have found associations Although the cognitive reserve hypothesis has face between smaller skull circumference and dementia [8] validity and empirical support, it may not be the only and have implied that smaller brain volumes may explanation for the association between higher educa- inﬂuence risk and expression of dementia through tion and lower dementia risk. One interesting possi- cognitive reserve effects. However, studies have found bility is that there may be aspects of brain structure associations with other measures of skeletal growth that allow both higher educational attainment (or that (shorter leg length in particular) that are independent possibly are even determined by this) and that also of both skull circumference and education [9–11]. confer protection against neurodegenerative disorders These skeletal dimensions are, of course, determined much later in life (i.e. inﬂuencing the disorder rather in childhood and adolescence and then remain stable than its manifestations). This mechanism is suggested throughout the intervening period. Associations with by an inﬂuential ﬁnding from a study of elderly nuns in dementia suggest potentially wider manifestations of

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS 299 early life social disadvantage than educational attain- 23.3.3 Other social determinants ment alone. of dementia There has been a moderate amount of interest in 23.3.2 Cardiovascular factors associations between the social environment in late life and risk of dementia. Interpretation of research in A signiﬁcant advance in dementia research over the this area can be problematic because most conditions last decade has been the appreciation of the important causing dementia have a very long period of devel- role of vascular disease and vascular risk factors in opment (10–20 years) so that it is often difﬁcult to the aetiology of dementia, both vascular dementia determine whether a characteristic that is associated and Alzheimer’s disease [12]. A variety of mechan- with an increased risk of dementia, even over a reason- isms have been proposed for this that are not directly able follow-up period, is causal or an effect of earlier relevant to this chapter but which divide, like those neurodegeneration. Also, most ﬁndings have been for education, into direct inﬂuences on neuropatho- derived from observational research and, by their logical processes (e.g. cerebrovascular damage to the nature, are difﬁcult to evaluate further in clinical trials. blood–brain barrier stimulating Alzheimer pathol- In common with research into vascular risk factors, ogy) and effects on the clinical syndrome (e.g. the most of this research suggests that generally healthier observation that people may exhibit a ‘clinical and more active people are less likely to develop dementia’ syndrome at an earlier stage of Alzheimer dementia. ‘Active’ in this case appears to include all pathology if cerebral infarction is also present [13]). aspects from physical activity [14] through social Vascular risk factors can reasonably be considered as support [15] to speciﬁc cognitive activities [16]. The the most important environmental risk factors for relationship between dementia and social activity is dementia, both because of their high prevalence in complex, however, and is rarely adequately disen- many populations and the potential for preventative tangled in conventional research designs. Early neu- intervention through risk reduction. Vascular risk rodegeneration may of course lead to reduced social factors also have substantial social determinants. A activity (e.g. as a person becomes aware of difﬁculties detailed discussion of the complex pathways linking with memory they may begin to avoid social situa- social disadvantage with vascular outcomes are tions); alternatively, social support may mask the beyond the scope of this chapter. However, these effects of neurodegeneration (as seen, for example, occur across the life course and include the ‘Barker in the ‘sudden’ manifestation of dementia sometimes hypothesis’ linking in utero exposures to much later after bereavement). The wider social milieu may play outcomes, the observed ‘tracking’ of vascular risk an important role in determining the deﬁnition of status (e.g. blood pressure, lipid proﬁle, adiposity) dementia itself. For example, in cultures where less from childhood, the development of adverse risk is expected of an older person, neurodegeneration may behaviours (smoking and diet in particular), the role have reached a much more advanced stage before any of the workplace (with both direct cardiovascular cognitive deﬁcit becomes noticeable or could be said effects of stress and indirect effects through peer- to be causing functional difﬁculties. group attitudes to risk behaviours) and later ability or Social activity may have opposing inﬂuences on the willingness to adhere to preventative interventions presentation and course of dementia. Social activity (e.g. antihypertensive treatment, diabetes manage- that places higher expectations on the affected indi- ment) once risk factors have been identiﬁed. It is vidual may heighten the effect of early cognitive therefore quite logical to consider dementia aetiology impairment whereas activity that provides support within a broader context of social disadvantage – may mask this. The perceived disability associated however, this type of model has rarely been applied with cognitive impairment may also have positive and and epidemiological research in dementia is still negative outcomes – while one individual who per- predominantly focused on ‘downstream’ rather than ceives their difﬁculties early may seek help and ‘upstream’ risk factors. receive a more prompt diagnosis, another may react

300 SOCIAL DETERMINANTS less constructively with social withdrawal, depression highly pertinent issue and the ‘ideal’ outcome will or denial. naturally vary according to the extent towhich demen- tia has manifested before death. For example, one ‘ideal’ would be to die without having developed 23.3.4 Social determinants of dementia dementia at all, or at least only having developed it course and prognosis to a mild extent with minimal quality of life impair- ment. If dementia does develop and the person sur- The interactions just described between the individual vives to later stages, the alternative ‘ideal’ becomes and their social milieu at an early stage of dementia are one more akin to that sought in palliative care – i.e. a likely to be important for later outcomes. While distress-free death at home supported by family mem- dementia is caused by ‘organic’ disorders and the bers and good-quality nursing care. As described decline in brain function is likely to be driven pre- above, the social context is a strong determinant of dominantly by biological pathways, the overall course the nature of care of dementia (and therefore of its and prognosis are inﬂuenced by many other factors course and outcome). However, there is of course no besides the neurodegenerative process, and the social objective standpoint from which care arrangements milieu is very important in this respect. The social can be compared between cultures and judged to be structures throughwhich care for dementia isprovided more or less satisfactory. As a guess, it seems likely vary widely between nations and cultures and tend to that the best quality care arrangements are likely to lie exist on a spectrum between formal and informal care. somewhere between the two societal extremes At the one end of this spectrum are societies where described: where family structures are maintained there is little or no state provision of care and where all and allowed to lead care provision but where there of this is provided by family members; frequently are also appropriate levels of formal (and wider infor- these systems are also combined with societal expec- mal) support for this process. The problem is that this tations of the caregiver and a stigma associated with assumes that a cohesive and supportive family struc- relinquishing these responsibilities, even when an ture is present in the ﬁrst place. The quality of support alternative means of care provision is available. At that an individual with dementia is likely to receive the other end are societies with higher levels of state from their family (and/or wider social network) will provision; these invariably include institutional care be determined by a life history of individual relation- but also, ideally, include support at home for those less ships in addition to overarching societal/cultural severely affected. These systems generally are com- expectations. These in turn are likely to have an bined with more relaxed assumptions about the role of inﬂuence on formal service provision. On the one the family in care provision, although rarely to a hand a higher level of state-funded support services degree where this can be relinquished without at least may have arisen in a particular nation because of some guilt or perceived stigma by the caregiver. enlightened thinking by policy makers seeking to Although difﬁcult to prove empirically, it is reason- support informal care arrangements; on the other hand able to assume that a satisfactory care arrangement for it may have arisen because of the collective refusal or someone with dementia will lead to a better quality of inability of informal support systems to take on this life for that person, despite the fact that neurodegen- role – in turn, potentially a product of individualistic erative changes continue to occur and present chal- societies where family ties are subservient to eco- lenges for maintaining life quality. Survival becomes a nomic and migratory necessities. 23.4 DEPRESSION AND OTHER MENTAL DISORDERS IN LATE LIFE As stated earlier, dementia can be considered to be of course not unique to late life and by no means characteristically a late life mental disorder, although particularly common in post-retirement age groups

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS 301 until more advanced old age is reached. Other mental 23.4.3 Physical ill-health and disability disorders occur across the full adult age range, both relapses in pre-existing conditions and onset of new Although not strictly social determinants of mental ones, and differences in late life tend to be more subtle disorders, chronic somatic disorders are very impor- and quantitative in nature. These will be considered tant risk factors for depression in particular and (as below in terms of the social exposures of most described for vascular disorders with respect to salience. dementia) frequently have strong social determinants themselves and so can be seen as a mediating pathway between life course social disadvantage and late life 23.4.1 Income and social class mental health. Although some disorders such as stroke and Parkinson’s disease may have direct effects on Not surprisingly, and in common with younger popu- depression, and chronic pain may be a factor for lations, manystudies of late life depression have found others, a large part of the effect of physical ill-health higher prevalence/risk to be associated with relative on depression risk appears to be mediated through impoverishment [17,18]. As described above, the disability with very little further impact of individual concept of social class is more difﬁcult to measure disorders [20]. There is therefore a rationale for con- in post-retirement age ranges, apart from as a histor- sidering physical ill-health as one of many life stres- ical characterization of previous occupation. The sors, although as one that is likely to be a chronic issue effect of income on risk of mental disorder in late for many disorders depending on the nature of dis- life may also reﬂect much longer lifelong interrela- ablement and the extent to which this can be modiﬁed. tionships since those with lower income levels are In those prospective studies that have sought to dis- more likely to have experienced higher levels of life tinguish incidence and maintenance of depression in stressors over a long period and, quite possibly, pre- community samples, higher levels of disability appear vious episodes of mental disorder occurring in to be more predictive of new onset of depression rather response to these. Physical health is also strongly than on the chances of recovering once depression has associated with income levels in late life – both the developed (which appears to be more strongly inﬂu- risk of new illnesses occurring and the efﬁciency with enced by social support, as discussed below [21]). which existing ones are managed – which in turn may Relationships between speciﬁc physical disorders be an important factor in relationships with mental and speciﬁc mental disorders can also be considered health [17]. under this heading. These include the affective and psychotic symptoms that are features of Parkinson’s disease, the association between deafness and late- 23.4.2 Life stressors onset psychosis, the frequent coexistence of chronic respiratory disease and anxiety disorder, and the As with income, stressful life events have continued association between poor eyesight and Charles importanceinthe aetiology of mental disordersin later Bonnet syndrome. life. Naturally the pattern of stressors changes, with age, bereavements and physical illness events becom- ing more common in older people. An analysis of 23.4.4 The geographic environment British national data, which compared strengths of association between recent life events and mental The built environment is likely to be an important disorder across age groups, found an increase in these factor in late life mental health, but has been the focus fromearlytomid-adultlifefollowedbyaslightdecline of very little research. One study found that the in older people, although the upper age of the sample interior condition of older people’s habitations was was 74 years, which missed the period of life where more strongly predictive of depression than the frailty and bereavements become most salient [19]. appearance of the area in which they lived [22].

302 SOCIAL DETERMINANTS However, clearly there are likely to be important imposed on an individual who would prefer a smaller interfaces between the nature of the area in which one, just as the imposition of a comprehensive care someone lives and their level of disability (inﬂuencing package or a move to a care home may represent a ease of access, services available, etc.), and in turn on substantial stressor for an older person who values the degree to which a given level of disability affects their independence and privacy. The personality and the level of social support. As well as this, the quality preferences of the individual are therefore important, of the environment in which someone lives will have although often unmeasured, modifying factors. been determined at least to some extent by that Furthermore, the degree of social support in late life person’s social status and mobility, and will determine is a construct that has evolved over a lifetime, inﬂu- the social milieu in which they ﬁnd themselves. enced by the individual’s capacity and need to form Particular to late life in developed nation settings are relationships and their previous relationships with the specialist built environments for people with family members (particularly with members of the higher levels of care needs, such as the British systems younger generation who represent their potential of sheltered and special sheltered housing, residential future caregivers), as well as by external factors such homes and nursing homes. These both determine the as bereavement, disability, poverty and housing. social environment and, at least partly through this and While substantial research has investigated the the speciﬁc interactions an individual makes with it, evolution of mental disorders and their social corre- the risk of mental disorder. lates from childhood and adolescence through to adulthood, there is asubstantial paucity ofinformation on the further evolution of these factors from mid- to 23.4.5 Social support late life. Along with physical ill-health and disability, social isolation ranks as the most important correlate of late 23.4.6 Modifying factors – response life depression, widely found in most if not all com- munity studies [21,23]. Studies that have considered to stress, delayed onset physical ill-health and social isolation together have and absolute risk found interactions between the two with respect to predicting the onset of depression, with a buffering Social isolation is also a key aetiological factor in late- effect of higher social support on risks associated with onset psychosis, in combination with other factors disability (i.e. the inﬂuence of disability on risk is less imposing this, such as deafness. Why isolation should marked where social support is higher [23]). On the result in depression in some people and psychosis in other hand, considering the likelihood of recovery others is unclear, although the link with psychosis may (in naturalistic follow-up studies of community sam- be modiﬁed by previous personality and by other ples), disability appears to play little or no role stressors speciﬁcally predisposing to this reaction. In (as described earlier), with social support the principal this respect, interestingly, there is some evidence that predictor [21]. late-onset psychosis shows similar associations with ‘Social support’ in studies of this kind appears at the minority ethnic groups in the UK as the pattern seen in outset to be a relatively simple construct, although can early onset forms (higher risk in African-Caribbean be quantiﬁed in a variety of ways (which may have migrants [24]), suggesting that there may be shared more or less salience to different individuals), includ- aetiology. The clinical manifestation of psychosis ing the size of a person’s social network, their social does not differ substantially between early- and activity (i.e. the degree to which they utilize their late-onset forms except that formal thought disorder network) and the quality of the most important is very rare or absent in the latter and, generally, there relationships (incorporating both practical and emo- are higher levels of personality preservation. These tional support). As stated above for dementia, larger similarities suggest that there may be, at least to some networks are not always positive, particularly if extent, a common syndrome with modiﬁcation of the

SOCIAL DETERMINANTS OF LATE LIFE DISORDERS 303 phenotype depending on the age at which it likely to recall episodes of mental disorder (particu- becomes manifest. An interesting but unanswered larly if mild and/or late onset) in relatives and/or older question with both late-onset depression and late- generations may be less willing to report these. A onset psychosis is why these disorders have not recent study of elderly Koreans was able to replicate manifested earlier in life. Either they are distinct the interaction between the 5-HTTLPR genotype and disorders with age-dependent determinants (which stressful life events as predictors of depression, which appears unlikely from evidence to date) or else had been previously described in much younger popu- there may be protective factors in late-onset cases lations [25]. Subsequent ﬁndings in the same sample that have prevented the occurrence of the syndrome of similar interactions with other environmental risk earlier in life. These protective factors could factors (stroke and number of physical disor- include both internal individual characteristics such ders [26,27]) further suggest that genetic factors retain as personality and genotype but could equally well their inﬂuence in late life and are important factors to consist of external factors such as the absence of consider in understanding the social aetiology of stressors earlier in life or higher levels of social mental disorder. support. In general, social research into late life mental Considering genetic factors, there is a growing health has focused excessively on the negative awareness that these may be important modiﬁers of aspects such as disorder categories and has tended environmental stressors so that a boundary between to ignore perhaps the most important question, which ‘social’ and ‘biological’ considerations becomes stea- is why so many older peoplewith substantial levels of dily less tenable. It has generally been assumed that adversity remain mentally healthy. The concept of familial factors become less inﬂuential in late life ‘resilience’ is still in its infancy but, if allowed more compared to early life mental disorder. However, for prominence, may well yield important ﬁndings upon depression, this may simply have arisen through which interventions to improve mental health can be measurement error since older people may be less based. 23.5 CONCLUSIONS The social environment is as important in late life as in REFERENCES earlier adulthood, if not more so. Key differences are that these exposures have developed over a much 1. Hall, C. B., Derby, C., LeValley, A. et al. (2007) longer period, quite possibly across the whole life Education delays accelerated decline on a memory test course, requiring a higher level of complexity in in persons who develop dementia. Neurology, 69, modelling and analysis, which unfortunately has yet 1657–1664. to be achieved by the majority of research in this area. 2. Wilson, R. S., Bennett, D. A., Gilley, D. W. et al. (2000) Furthermore, there is a growing need to dispense with Premorbid reading ability and patterns of cognitive the distinction between ‘biological’ and ‘social’ fac- decline in Alzheimer disease. Archives of Neurology, 57, 1718–1723. tors. Research that restricts itself to biological path- ways will underestimate the importance of social 3. Stern, Y., Tang, M.-X., Denaro, J. and Mayeux, R. (1995) Increased risk of mortality in Alzheimer’s dis- inequalities as a common underlying factor. However, ease patients with more advanced educational and research that is restricted to social factors may not occupational attainment. Annals of Neurology, 37, adequately characterize the important biological cau- 590–595. sal pathway factors and effect modiﬁers. Continuing 4. Stern, Y., Alexander, G. E., Prohovnik, I. and to investigate each separately will only lead to impo- Mayeux, R. (1992) Inverse relationship between edu- verished understandings of the conditions in question cation and parietotemporal perfusion deﬁcit in and may fail to identify the most appropriate targets Alzheimer’s disease. Annals of Neurology, 32, for intervention. 371–375.

304 SOCIAL DETERMINANTS 5. Snowdon, D. A., Kemper, S. J., Mortimer, J. A. et al. factors for depression in old age. The Gospel Oak (1996) Linguistic ability in early life and cognitive Project V. Psychological Medicine, 27, 311–321. function and Alzheimer’s disease in late life. Journal 18. Woo, J., Ho, S. C., Lau, J. et al. (1994) The prevalence of the American Medical Association, 275, 528–532. of depressive symptoms and predisposing factors in an 6. Elias, M. F., Robbins, M. A., Schultz, N. R. et al. (1987) elderly Chinese population. Acta Psychiatrica Scanda- Clinical signiﬁcance of cognitive performance by navica, 89, 8–13. hypertensive patients. Hypertension, 9, 192–197. 19. Jordanova, V., Stewart, R., Goldberg, D. et al. (2007) 7. Stewart, R., Richards, M., Brayne, C. and Mann, A. Age variation in life events and their relationship with (2001) Vascular risk and cognitive impairment in an common mental disorders in a national survey popula- older, British, African-Caribbean population. Journal tion. Social Psychiatry and Psychiatric Epidemiology, of the American Geriatrics Society, 49, 263–269. 42, 611–616. 8. Borenstein Graves, A., Mortimer, J. A., Bowen, J. D. 20. Begum, A., Tsopelas, C., Lindesay, J. and Stewart, R. et al. (2001) Head circumference and incident (2009) Cognitive function and common mental disor- Alzheimer’s disease: modiﬁcation by apolipoprotein ders in older people with vascular and non-vascular E. Neurology, 57, 1453–1460. disorders. A national survey. International Journal of 9. Huang, T. L., Carlson, M. C., Fitzpatrick, A. L. et al. Geriatric Psychiatry, 7, 701–708. (2008) Knee height and arm span: a reﬂection of early 21. Prince, M. J., Harwood, R. H., Thomas, A. and Mann, life environment and risk of dementia. Neurology, 70, A. H. (1998) A prospective population-based cohort 1818–1826. study of the effects of disablement and social milieu on 10. Kim, J.-M., Stewart, R., Shin, I.-S. and Yoon, J.-S. the onset and maintenance of late-life depression. The (2003) Limb length and dementia in an older Korean Gospel Oak Project VII. Psychological Medicine, 28, population. Journal of Neurology, Neurosurgery and 337–350. Psychiatry, 74, 427–432. 22. Stewart, R., Prince, M. J., Harwood, R. H. et al. (2002) 11. Kim, J.-M., Stewart, R., Shin, I.-S. et al. (2007) Asso- Quality of accommodation and risk of depression. An ciations between head circumference, leg length and analysis of prospective data from the Gospel Oak dementia in a Korean population. International Journal Project. International Journal of Geriatric Psychiatry, of Geriatric Psychiatry, 23, 41–48. 17, 1091–1098. 12. Stewart, R. (1998) Cardiovascular factors in 23. Prince, M. J., Harwood, R. H., Blizard, R. A. et al. Alzheimer’s disease. Journal of Neurology, Neurosur- (1997) Social support deﬁcits, loneliness and life events gery and Psychiatry, 65, 143–147. as risk factors fordepression in oldage. The Gospel Oak Project VI. Psychological Medicine, 27, 323–332. 13. Snowdon, D. A., Greiner, L. H., Mortimer, J. A. et al. (1997) Brain infarction and the clinical expression of 24. Reeves, S. J., Sauer, J., Stewart, R. et al. (2001) Alzheimer disease. Journal of the American Medical Increased ﬁrst-contact rates for very-late-onset schizo- Association, 277, 813–817. phrenia-like psychosis in African- and Caribbean-born elders. British Journal of Psychiatry, 179, 172–174. 14. Rovio, S., Kareholt, I., Helkala, E.-L. et al. (2005) Leisure-time physical activity at midlife and the risk of 25. Kim, J.-M., Stewart, R., Kim, S.-W. et al. (2007) dementia and Alzheimer’s disease. Lancet Neurology, Interactions between life stressors and susceptibility 4, 705–711. genes (5-HTTLPR and BDNF) on depression in Korean elders. Biological Psychiatry, 62, 423–428. 15. Fratiglioni, L., Wang, H.-X., Ericsson, K. et al. (2000) Inﬂuence of social network on occurrence of dementia: 26. Kim, J.-M., Stewart, R., Kim, S.-W. et al. (2007) BDNF a community-based longitudinal study. Lancet, 355, genotype potentially modifying the association 1315–1319. between incident stroke and depression. Neurobiology 16. Wilson, R. S., Bennett, D. A., Bienias, J. L. et al. (2002) of Aging, 29, 789–792. Cognitive activity and incident AD in a population- 27. Kim, J.-M., Stewart, R., Kim, S.-W. et al. (2009) based sample of older persons. Neurology, 59, Modiﬁcation by two genes of associations between 1910–1914. general somatic health and incident depressive syn- drome in older people. Psychosomatic Medicine, 71, 17. Prince, M. J., Harwood, R. H., Blizard, R. A. et al. 286–291. (1997) Impairment, disability and handicap as risk

Part Four Social consequences and responses

24 Responses to the onset of mental health problems: issues and findings from research on illness behaviour and the use of health services Bernice A. Pescosolido Indiana University, Bloomington, Indiana, USA In 1966, Kasl and Cobb [1] deﬁned illness behaviour have been diagnosed (sickness behaviour, e.g. follow- as what individuals do when they notice that there is ing doctor’s orders or ﬁlling prescriptions)? something wrong with their health (e.g. getting extra Different theoretical models sometimes reﬂected rest, calling a help-line or seeking out a physi- these distinctions early in their development. For cian [1,2]). More simply, it targets how people react example, the Health Belief Model [3] and Theory of in the context ofillness. Illness behaviour incorporates Reasoned Action, when applied to health [4], focused reactions that may be psychological or social, and seen heavily on whether individuals engaged in preventive as good or bad, adaptive and maladaptive, irrational or health behaviours, looking to their intentions to rational, traditional or modern. The need for distinc- engage in ‘positive behaviours’ (e.g. quitting smok- tions among illness behaviour, health behaviour and ing, going for routine physicals). The Sociobeha- sickness behaviour arose, perhaps, as individuals con- vioural Model [5,6] focused on health service use, in tinually confused the object of their research, practice both type (hospital, physician) and amount (number of or policy efforts. Were they interested in how indivi- visits per year). However, just as often as not, these duals maintain their health, prevent disease or catch it models were used interchangeably by their developers early in its course (health behaviours, e.g. regular and others to cut across the landscape of prevention, mammograms)? Were they focused on individuals’ utilization and adherence/compliance. coping styles regarding ill-health and how they access Returning to the speciﬁc meaning and nature of the formal institutions of health care provisions (ill- ‘illness behaviour’ is critical because we have for- ness behaviour as deﬁned above)? Or were they con- gotten some of the insights of Kasl and Cobb’s [1] cerned with what individuals do or do not do after they conceptual clariﬁcation. Illness behaviour leads us to Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

308 SOCIAL CONSEQUENCES AND RESPONSES consider and compile our stockpile of knowledge depending on the individual, on the cultural context regarding the full scope of what individuals do when and on the resources available in the community. The confronted with mental health problems. It involves purpose of this chapter is to review what we know the recognition of and response to symptoms, includ- with regard to illness behaviour, broadly deﬁned as ing coping and health service utilization. More what individuals do when mental health problems importantly, it reminds us that actions are taken occur. 24.1 THE CURRENT STATE OF AFFAIRS: COPING AND THE UTILIZATION OF HEALTH SERVICES Despite inconsistencies that arise from different the- onset of serious symptoms, or display illness beha- oretical and disciplinary approaches, data sources and viour that is avoidant, passive and emotion- populations, a set of ﬁndings on health and illness focused [11,12]. This body of research tends to ﬁnd behaviour have emerged from research investigations low mastery among groups traditionally deﬁned as that began as early as the 1920s and continue to be a having less social power (women, those with low central concern [7]. While this review draws from education, minority groups [11]). research done globally, the fact is that many of the ﬁndings are based on results from the US, where research interest regarding the use of formal and, 24.1.2 Finding 2: illness behaviour more recently, informal health behaviours has been involves health `advisors'; i.e. consistent and where nationally representative studies individuals often turn to many have been most prevalent. As Rogers, Hassell and behaviours and individuals to cope Nicolaas [8] point out the assumption of universal with mental health problems, access in the National Health Services did not initially combining them into unique result in a heavy emphasis on illness behaviour. patterns of response 24.1.1 Finding 1: coping resources and Too often, illness behaviour narrowly targets the use coping styles shape the initial of formal health care services. Generally, modern medical practitioners with respect to mental health response to the onset of mental are divided into two broad categories (see Table 24.1): health symptoms (1) specialized mental health care – professionals including psychiatrists, psychologists, psychiatric Deﬁned best by Lazarus and Folkman [9], ‘coping’ nurses and social workers, as well as specialized refers both to cognitive and behavioural attempts to hospitals, inpatient psychiatric units of general hos- manage situations that exceed an individual’s ability pitals and outpatient mental health programmes – and to adapt. While coping resources generally refer to (2) general medical care – including primary care individuals’ psychological or social psychological practitioners, community hospitals without specia- characteristics, coping styles tend to target the actions lized psychiatric services and nursing homes. that individuals take [10,11]. For example, ‘feelings of Even within these sectors, there is considerable mastery’, including having a sense that one can man- variety in the scope, nature and quality of the clinical age problems as they arise (i.e. internal locus of resources available to ill individuals and to the pro- control) or are beyond one’s ability (i.e. external locus viders who care for them. of control), shape whether individuals are likely to However, as Table 24.1 indicates, coping with have an active, problem-solving reaction (including mental health problems often depends on three other ‘help-seeking’) to problems, from daily stress to the sectors – the lay system of care including friends,

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS 309 Table 24.1 The range of choices for medical care and advice Opinion Advisor Examples Modern medical practitioners MDs, osteopaths (general practitioners, Physicians, psychiatrists, podiatrists, specialists), allied health professions optometrists, nurses, midwives, opticians, psychologists, druggists, technicians, aides Alternative medical practitioners ‘Traditional’ healers Faith healers, spiritualists, shamans, curanderos, diviners, herbalists, acupuncturists, bonesetters, granny midwives ‘Modern’ healers Homeopaths, chiropractors, naturopaths, nutritional consultants, holistic practitioners Nonmedical professionals Social workers, legal agents, clergymen, Police, lawyers supervisors Bosses, teachers Lay advisors Family, neighbours, friends, co-workers, Spouse, parents classmates Other Self-care Nonprescription medicines, self-examination procedures, folk remedies, health foods None Source: Bernice A. Pescosolido, Carol A. Boyer and Keri M. Lubell (1999) The social dynamics of responding to mental health problems, in Handbook of the Sociology of Mental Health (eds Carol S. Aneshensel and Jo C. Phelan), Kluwer Academic/Plenum Publishers, New York, pp. 441–460. family, co-workers and an increasingly visible set of acupuncture or homeopathy), theorists questioned the support or self-help groups; the alternative or folk utility of business-as-usual in understanding illness system of religious advisors and alternative healers; behaviour [14,15]. and the human/social service system, which includes While much of the rich detail of illness behaviour police, clergy, teachers and social welfare providers. pathways has been captured by in-depth, qualitative Together, these sectors of care form a complex web of studies (e.g. see Reference [15]), Figure 24.1 provides community resources to treat and manage mental an example of a newer approach using survey data. health problems [13]. The ‘image matrix’ here suggests six pathways or Historically, the research focusing solely on formal patterns. Four patterns are singleton strategies, i.e. health care service options was solidiﬁed after World only one type of care (pattern 2, 17.5%, directly to the War II and in Western societies. The use of alternative, mental health sector; pattern 3, 31.5%, directly to the indigenous and even informal sources of care was left general medical sector; pattern 4, 15.3%, the clergy to anthropologists, with their investigative lenses alone; pattern 5, 23.6%, only family or friends). More trained on non-Western societies and unique cultural importantly, two complicated patterns involve formal subgroups, or to social psychologists who studied care; these are more characteristic of the illness social support. However, by the 1970s, as disparities behaviour of those with the most serious mental health for growing immigration and ethnic populations came problems. In pattern 1, individuals talk to family and to light, as self-help and advocacy groups became friends, consult clergy and go to a general medical more visible and as industrial societies experienced practitioner (7.9%). In pattern 6, individuals also talk the resurgence of other forms of ‘help’ (e.g. to family and friends and go to the general medical Complementary Alternative Medicine (CAM) like sector; in addition, they use the mental health sector

310 SOCIAL CONSEQUENCES AND RESPONSES Figure 24.1 Density and image matrices for utilization choices in Puerto Rico (N ¼ 365). (Adapted from Bernice A. Pescosolido, Eric R. Wright, Margarita Alegria and Mildred Vera (1998) Social networks and patterns of use among the poor with mental health problems in Puerto Rico. Medical Care, 36(7), 1057–1072.) (4.1% [16]). In sum, as Leavey et al. [17] note for support. However, there has been a direct increase in Turkey, ‘... help-seeking is seldom linear’ (see also the resort to active coping strategies and seeking out Reference [18] on Iran). informal health care ‘advisors’ (see Table 24.2). 24.1.3 Finding 3: the resort to different 24.1.4 Finding 4: only a small percentage coping strategies has changed of individuals in `need' actually over time receive formal medical or mental health services (see also Chapter 8) Research on coping tends to be cross-sectional; however, Swindle and his colleagues [19] were able In the US, from the earliest community-based studies to reanalyse data from two of the most signiﬁcant (e.g. the Midtown Manhattan Study [23]) to the most nationally representative studies conducted over time recent (the National Comorbidity Survey Replica- in the US and compare these to newly collected, con- tion [24]), the existence of a ‘treatment gap’ has been temporary data. The Americans View Their Mental consistently documented. Current NCS-R estimates Health studies were conducted at the University of suggest that only one-third of individuals who met Michigan in the 1950s and 1970s [20,21]. In 1996, criteria for a mental disorder received treatment a parallel set of questions was asked by the General in the health care system. Even Mechanic [25], Social Survey in the MacArthur Mental Health Mod- who is sceptical about the way ‘need’ is estimated in ule[22].AsshowninTable24.2,whenindividualswere community studies, agrees that treatment rates are asked whether they had ever thought they weregoing to notoriously low (e.g. 3.5% of those who meet criteria have a ‘nervous breakdown’, little change is seen in for serious mental illness receive speciality care [26]). the resort to avoidance coping strategies or to formal Thus,accordingtothe‘servicegap’[27]orthe‘clinical

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS 311 Table 24.2 Participants’ coping response to ‘nervous increased amongst those deﬁned as having a disorder breakdown,’ US national studies (20.3–32.9%), even though the prevalence of mental 1957 1976 1996 disorders in the US did not change over the 10-year period from 1990–1992 to 2001–2003. Similar Approach 12.5 20.1 31.6 increases in treatment rates have been documented: Avoidance 27.8 24.4 29.0 for depression, in the National Ambulatory Medical Informal support 6.5 12.4 28.3 Care Survey; for individuals with serious mental Formal support 48.1 49.8 42.0 illness, in the American Community Tracking Survey; Source: Ralph Swindle, Kenneth Heller, Bernice A. Pescosolido and for children with mental health problems, in the and Saeko Kikuzawa (2000) Responses to nervous breakdowns in Dutch population [32,33]. America over a 40-year period: mental health policy implications. Not surprisingly, increases did not occur evenly American Psychologist, 55 (7), 740–749. across the spectrum of informal and formal advi- iceberg model’ [8], most individuals who have mental sors. In the NCS-R, the jumps were seen in general health problems do not engage in illness behaviours medical services (2.59 times higher in the later that result in the receipt of formal medical care. period), psychiatry (2.17 times higher) and other mental health services (1.59 times as high) [32]. 24.1.5 Finding 5: the public's With regard to ‘nervous breakdown’, the reliance understanding of mental health on informal supports, such as family and friends, problems has become somewhat showed the strongest increase over the past 20 more sophisticated over time, years, particularly among the youngest age groups. recognition being key to engaging In fact, while using formal sources of help remained essentially unchanged overall, the role of in formal and informal illness both physicians and psychiatrists declined, while behaviours the reported use of counsellors, social workers and psychologists rose from 0.6% in 1957 to 18% in In the US, Phelan et al. [28] report that the public’s 1996 [19]. view of what constitutes mental illness has broadened somewhat over time. Further, most individuals (over 60%) with mood, anxiety or substance abuse disorders 24.1.7 Finding 7: `need' is an important recognize their own mental health problems [29]. and consistent predictor of the use While research tends to focus on the mainland US, of services, but it is not sufficient to there is supporting evidence from other places. For understand the complex response example, in a study of Puerto Rico [30], over three- to mental health problems or the quarters of individuals with ‘deﬁnite mental health long delays that accompany entry need’ recognized they had a mental health problem. Those who did recognize their situation also reported into treatment higher levels of service use (46%) than what is typically seen in population-based studies (see As McAlpine and Boyer [34] note in their review of Reference [30] and also Reference [31] on Singapore). service use, individuals with the greatest impairment are most likely to receive speciality mental health 24.1.6 Finding 6: there seems to be treatment. While it may be reassuring to know that improvementinthe use ofservices– those with the most serious problems do get into care, both the formal and informal there may be a long delay, even for serious psychoses. In the US, delays averaged from 6 to 8 years for mood advisors to which individuals turn disorders and even longer (9 to 23 years) for anxiety disorders [24,35]. Further, the association with need, According to data from the US National Comorbidity though almost always in evidence, tends to be Survey Replication (NCS-R), the rate of treatment modest [32].

312 SOCIAL CONSEQUENCES AND RESPONSES Part of the reason for this may lie in the complex respondents did not meet the criteria [32,41]. The pathways that individuals with serious mental health resulting debate centres on whether treatment problems travel. In a population-based study in Puerto resources should be focused on serious disorders, or Rico, those with the most severe illness reported whether illness behaviours that address mild disorders multiple contacts. While the results show this and subthreshold syndromes avert cost and suffering expected ﬁnding – individuals assessed with ‘deﬁnite in the long run. In particular, given recent attention to need’ were more likely to travel successful pathways prodromal schizophrenia and theories of brain plas- (versus do nothing) – they were also more likely to ticity, the issue of ‘appropriate’ illness behaviour, in travel failed pathways, or to be rejected or referred on terms of the use of societal resources, is far from by mental health specialists [13]. A ‘successful settled [42]. pathway’ (17%) ended in the use of a speciality mental health provider with no subsequent search for alter- 24.1.9 Finding 9: illness behaviour, even native ‘advisors’, except family and friends. ‘Failed pathways’ (40%) are sequences of illness behaviours the use of formal care, is not simply that never result in access to mental health providers, `help-seeking' though a number of lay, folk and formal advisors may be used. ‘Success with referral or rejection’ pathways While not unique to the area of mental health, issues of (5%) end up in speciality health care but are followed involuntary commitment and forced medication make by subsequent use of advisors in the lay, folk and/or the consideration of different pathways regarding ill- general medical sector (37% of individuals did ness behaviour obvious. ‘nothing’). Prior research has addressed this issue from two These ﬁndings challenge the power of ‘need’ to different perspectives; however, they rarely, if ever, explain illness behaviour and the use of services, since come together. Both utilization research and research ‘need’ was signiﬁcantly and nearly equally associated on legal coercion (e.g. see References [43–45]) con- with choosing any pathway beside the null one (see ceptualize entry into formal care. The former tends to Refernce [8] on Britain, References [13,36,37] see entry into care as ‘choice’; the latter explores how on France, Reference [38] on East London, people with mental illness are forced into the treat- Reference [39] on Cambodia and Reference [40] on ment system by the actions of police, judges and Malaysia). In fact, in a comparison with standard family members. approaches that simply conceptualize ‘use–no use’ Figure 24.2 presents the frequency distribution for with this more complex pathways approach, the results the classiﬁcation of stories of choice, coercion and reveal more complicated inﬂuences of social and cul- ‘muddling through’ (i.e. where individuals neither tural factors. In sum, ‘need’ does not drive the utiliza- resist nor seek treatment) from a study of the entry tion of speciality care; it drives all of illness behaviour of ‘ﬁrst timers’ into mental health treatment [36]. In in ways that are complex and often inefﬁcient. fewer than half of the stories (45.9%), respondents indicated that they came into care through a ‘decision’ where they played, in full or in part, an active and 24.1.8 Finding 8: `nonneeders' do receive positive role. Almost one-quarter of respondents care, and the use of services is not (22.9%) told stories of active resistance. They came into the mental health system against their will, necessarily tied to a scale of brought in by the police or under pressure from family, severity friends and co-workers. Almost a third (31.2%) of respondents reported stories in which they played no In the studies reported above, the data also indicated active role in seeking out or resisting treatment. that treatment was provided to patients without diag- Generally, those that ‘muddled through’ either vacil- nosable disorders, although the estimates vary. For lated about seeking treatment or told their story as example, the NCS-R found that about half of the bystanders to the decision-making process.

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS 313 Figure 24.2 Percentage of individuals reporting different accounts of initial entry into the mental health system, INMHS 1990–1994 (n ¼ 109). (Adapted from Bernice A. Pescosolido, Carol Brooks-Gardner and Keri M. Lubell (1998) How people get into mental health services: stories of choice, coer- cion and ‘muddling through’ from ‘ﬁrst- timers. Social Science and Medicine, 46 (2), 275–286) 24.1.10 Finding 10: illness behaviour is shaped, facilitated and US and many Western nations, mental hospitals served as core locations for the treatment of persons thought to constrained by the time and be mentally ill. Beginning in the late 1950s, an initial place in which mental health deinstitutionalization of patients from the hospital problems arise becameabroad‘transfer ofcare’ [47–49] thatproduced acomplexsetoforganizations(e.g.acuteandlong-term The mental health system, while global, is embedded hospitals,daytreatment,treatmentteams,grouphomes, in a social and cultural context. As Kessler et al. [32] nursinghomes,communitymentalhealthcentres,alter- point out, the results of the early Epidemiological native care and peer-operated systems), all engaged in Catchment Area studies, the ﬁrst to do population- thecareofpersonswithmentaldisorders[50].Thus,the based studies, and even the original National Comor- range of speciality care that might be included or bidity Study, cannot adequately describe illness beha- sequencesinillnessbehaviourintheUSisverydifferent viour for mental health problems because of the fromthoseinsomecountriesintheformerSovietUnion, dramatic changes in the US health care delivery Asia or Africa, where institutional care and the absence system. of psychiatrists shape pathways with a near total depen- AsGoffman[46]remindedus,theillnesscareeristwo denceonprimarycare,alternative/indigenousproviders sided,shapedbybothindividualsandinstitutions.Inthe and the family [51].

314 SOCIAL CONSEQUENCES AND RESPONSES 24.1.11 Finding 11: sociodemographic groups are less likely to receive formal treatment, characteristics are not consistent despite similar rates of disorder [54]. Even in Britain, predictors of illness behaviour a lack of access for some population groups radically and the use of services undermined the presumption in the NHS of universal and easy access [8]. What the inconsistencies in socio- demographicﬁndingsdosignal,however,isthatunder- While most studies attempt to, and often ﬁnd, the standing illness behaviour requires examining what inﬂuence of sociodemographic characteristics on ill- individuals do, given the social context in which they ness behaviour, the view across studies is not cumu- experience mental health problems, and exploring the lative. It is not surprising that older individuals tend to actual network resources available to them [16]. report receiving mental health care in the general medical sector [52]. However, the ﬁndings from one study to another, perhaps due to different samples, 24.1.12 Finding 12: mental health targeted groups or methods, produce discrepancies in profiles and sociobehavioural the results. Even among those characteristics, like gender, income or race/ethnicity, that have been seen factors work together to shape as the most stable correlates, Alegr ıa and her collea- illness behaviour gues [41] found that, in contrast to the dominant expectation, poor women were just as likely to receive The debate over the role of needversussocial,cultural or mental health care as men. In addition, as they point organizational factors on illness behaviour is scientiﬁ- out, some studies have found underutilization of men- cally obsolete. For example, in the study of different tal health services by Hispanics, while others have not pathways into care cited above [16], the interaction of (seesimilarﬁndingsontheMaoriinNewZealand[53]). networks (i.e. large networks) and type of symptom Even the increases in the use of formal services in the proﬁle (i.e. bipolar disorder) together shaped the coer- NCS-R were independent of need and the sociodemo- cive or involuntary pathways to treatment (see also graphic characteristics of the respondents [32]. References [16] and [55]). At the same time, to under- This does not mean that systematic disparities are stand illness behaviour, McAlpine and Boyer [34] argue not evident in illness behaviour and service use. that the social causes of illness behaviour need to be Despite different ﬁndings from past research, there is separate from the social causes associated with mental evidence thatindividualsbelongingto racial and ethnic health problems or psychiatric illness. 24.2 EXPLAINING ILLNESS BEHAVIOUR: THEORETICAL MODELS, PAST AND PRESENT As noted above, Rogers, Hassell and Nicolaas [8] The dominant tradition in quantitative, typically contend that recent NHS developments such as overt representative approaches has been described as a set rationing and cost containment have only relatively of rational choice models. In this tradition, individuals recently exposed disparities in care and increased stand at the centre of illness behaviour, making a attention on health service use. As a result, they argue cost–beneﬁt analysis that weighs their attitudes and that little of the theoretical development of models of beliefs (e.g. the Health Belief Model [57]), their illnessbehaviour has taken place inhealthcareresearch predisposing characteristics or their perceived/actual in Britain until recently. Rather, the intense effort to access (the Sociobehavioural Model [5,6]). However, conceptualize illness behaviour has been located, for there has always been a parallel tradition in which the most part, in the United States, where issues of qualitative, in-depth studies have followed a selected access and inequity have always been part of health group of individuals, detailing illness beha- care research and policy. In fact, there is no shortage of viour [58–60]. Both the advantages and disadvantages theoretical models (see References [7] and [56]). of these diverse traditions have been described; in fact,

RESPONSES TO THE ONSET OF MENTAL HEALTH PROBLEMS 315 the attempt to bring the best of these together char- continuing cross-disciplinary evidence of the central- acterizes the most theoretically oriented work in ill- ity of lay networks in deﬁning illness etiology, con- ness behaviour and utilization [7]. As Uehara [15] ceptions of cure and acceptable treatment) clearly summarizes: indicated the need for a more medically pluralistic and dynamic conception of what transpires in the event of illness (p. 519). In recent decades, research on illness and help- seeking has moved away from static, psychologistic Pictured in Figure 24.3, the Network-Episode models of medical decision-making toward those that Model (NEM) represents one of the efforts to synthe- conceptualise help seeking as a dynamic and inex- tricably social phenomenon. Social structural inﬂu- size illness behaviour, service use and outcomes ences, in-so-far as they were the focus of interest, through conceptualizing illness as a career [8]. While were conceptualised in terms of the categorical attri- it takes a transdisciplinary approach, drawing useful butes of the individual (e.g., race, gender and socio- ideas and methods from past research, it sets the economic status). By the mid-1970s, a number of structure and context of social ties as the mechanisms important trends (including the shift in public health underlying the recognition and response to the onset emphasis from acute to chronic illness and the of mental health problems, and as an integrating Figure 24.3 The network-episode model. (From Bernice A. Pescosolido, Carol A. Boyer and Keri M. Lubell (1999) The social dynamics of responding to mental health problems, in Handbook of the Sociology of Mental Health (eds Carol S. Aneshensel and Jo C. Phelan), Kluwer Academic/Plenum Publishers, New York, pp. 441–460)

316 SOCIAL CONSEQUENCES AND RESPONSES mechanism connecting environmental levels. these networks hold in terms of experience, attitudes Depending on what kind of social networks indivi- and knowledge creates the trajectory. Sociodemo- duals have, they will be predisposed to talk to infor- graphics matter if they shape the size and cultural mal advisors, seek professional care or see a need for character of networks [61]. For example, a large other social services. The NEM begins with the social network means a reserve of people to assist assumption that individuals are pragmatic, dynamic in informal care and to offer a good deal of social and inherently social in response to mental health pressure. If they are Kadushin’s [62] ‘friends and problems, although in some cases and under parti- supporters of psychotherapy’, individuals will be cular circumstances, they can be rational or they can likely to use formal services and they are likely to be calculating individualists. come with less delay. Conversely, if their network ties As depicted in Figure 24.3, the entire illness are sceptical of the mental health or medical care career, rather than any decision to seek assistance, system, these community ties will provide care, delay becomes the focus; i.e. the timing and sequencing of the use of services and suggest resort to the formal key role exits and entrances across an entire episode system only when the situation has exhausted net- create patterns and pathways. The response to illness work resources. is a social inﬂuences process that works through the This approach offers distinct intervention and pol- mechanism of networks, whether in the community icy advantages. Social networks, unlike individuals’ (top stream) or the treatment system (bottom stream). race or income, provide a place to direct change While the size of an individual’s network calibrates because they are subject to educational and therapeu- the degree of the ‘push/pull’ into or out of care, what tic forces. 24.3 CHALLENGES TO UNDERSTANDING ILLNESS BEHAVIOUR IN FUTURE RESEARCH McAlpineandBoyer[34]echoDavidMechanic’s[63] points, can provide additional insights into illness early and insightful concern that continuing to accu- behaviour. mulate studies that correlate variables with entry into treatment holds only limited value in improving our understanding of how individuals respond to mental REFERENCES health problems. Such accountings have a value for organizational and policy purposes because they track 1. Kasl, S. V. and Cobb, S. (1966) Health behaviour, illness behaviour, and sick-role behaviour. I. Health units of service. However, they are less useful in and illness behaviour. Archives of Environmental helping us understand illness behaviour. At each level Health, 12, 246–266. of society (the policy level, the mental health system 2. Mechanic, D. (1961) The concept of illness behaviour. level and the individual/consumer–provider level) Journal of Chronic Disease, 15, 189–194. inﬂuences at work create pressures and cross-pres- 3. Rosenstock, I. M. (1966) Why people use health ser- sures that require more complex, dynamic theory, vices. Milbank Memorial Fund Quarterly, 44(3), multimethod approaches and the development of 94–106. analytic tools more suited to these complex- 4. Fishbein, M. and Ajzen, I. (1975) Belief, Attitude, Inten- ities [8,15,34]. Currently in revision, the NEM-Phase tion, and Behaviour: An Introduction to Theory and III answers the call for an integrated health sciences Research, Addison-Wesley, Reading, Massachusetts. model where social network inﬂuences are not devoid 5. Andersen, R. (1968) A Behavioural Model of Families’ of the individual variation in personality, biology and Use of Health Services, Report, Research Series 25, genetics that individuals bring to them [64]. Other Center for Administration Studies, University of theoretical approaches, which offer different starting Chicago, Chicago, Illinois.

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25 Gender and reproductive health Louise Howard Section of Women's Mental Health, Health Service and Population Research Department, Institute of Psychiatry, King's College London, London, UK Reproduction is an integral part of being human. Most This is despite professionals’ concerns about parent- men and women have children, including people with ing difﬁculties and the removal of child custody in mental health problems. There is a complex relation- a signiﬁcant proportion of these families. Even in ship between societal norms and attitudes, reproduc- people with less severe mental disorders there is a tion and mental health, which has changed over time clear impact of social factors on reproductive and continues to evolve. Historically, social norms did and mental health. For example, the impact of having not allow the severely mentally ill to be parents, and to fulﬁl multiple roles in society (e.g. mother, wife, parenting outside marriage was considered to be carer and employee) is seen as a major determinant of deviant enough to lead to incarceration in psychiatric the increased prevalence of common mental disorders asylums in the nineteenth century [1]. More recently, in women [3]. In addition, women are more likely although there has been increasing recognition of the to live in poverty and experience sexual and desire of people with severe mental illness to fulﬁl domestic violence. This chapter focuses on the their ‘normal role’ and be parents [2], the response of response of society to reproduction in those with society to parenting in people with severe mental mental health problems and on how social factors disorders remains characterized by ambivalence, with impact on mental health during the reproductive very limited support available for parenting needs. period. 25.1 ABORTION AND MENTAL HEALTH The response of society to abortion in people with risk to a woman’s mental health [4]. Mental illness or mental illnesses or those perceived to be at risk of risk of mental illness is therefore used by society to mental health problems is an area where the impact of justify the use of abortion. However, it has also been culture and thewider society have a profound effect on claimed that abortion itself can lead to an increased health. 94% of abortions in the UK are carried out risk of mental illness (e.g. see Reference [5]). Such because continuation of the pregnancy would involve data has been used by pro-life activists in testimony in Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

322 SOCIAL CONSEQUENCES AND RESPONSES support of a law that would ban abortion in South single elected ﬁrst trimester abortion than if they Dakota (except for those in which the mother’s life deliver that pregnancy [9,10]. While longitudinal was in danger), though such measures have been research has been published by researchers who con- defeated in recent US elections [6]. Nevertheless, the clude exposure to abortion accounts for 1.5–5.5% of South Dakota ‘informed consent to abortion law’ mental disorders (e.g. see Reference [5]), such studies mandates a discussion between the physician and the can never adequately adjust for the psychosocial woman seeking abortion, on what the law calls the factors that led to abortion or fully distinguish the risks of abortion, including depression and suicide, effect on mental health of not having an abortion and despite limited evidence of such risks (see Refer- continuing with an unwanted pregnancy. There is also ence [7]). The scientiﬁc literature on any association some evidence that women reporting pregnancy loss between abortion and mental health is therefore inﬂu- are at a higher risk of affective disorders and substance enced by this highly charged sociopolitical context, misuse irrespective of whether the loss was due to with publications in highly respected journals being abortion or miscarriage [11]. It is clear that the cir- tainted by the lack of declared conﬂicts of interest by cumstances that lead to an unwanted pregnancy, and pro-life and pro-choice authors (see Reference [8] previous psychiatric history, are important determi- and subsequent correspondence in the British nants of the mental health status of women after the Medical Journal). abortion. Current evidence highlights the importance Clearly, unwanted pregnancy and abortion do not of identifying risk factors for adverse mental health occur in a social vacuum and the current sociopolitical outcomes after an abortion, including pre-existing climate of some countries such as the United States of mental illnesses [10]. America stigmatizes some women (e.g. the teenage Nevertheless, it is likely that societal attitudes will and unmarried) who have pregnancies, as well as continue to inﬂuence both research on abortion and women who have abortions and the nurses and phy- mental health, and clinical services providing abortion sicians who provide them [9]. A review of the litera- where the assessment of mental health is often central ture on the mental health consequences of abortion is for clinicians assessing women seeking an abortion. beyond the scope of this chapter, but the most recent While some commentators have concluded that abor- critical and comprehensive reviews of research in this tion should not be a psychiatric issue at all but a moral, area have concluded that among adult women who legal and ethical one [12], abortion is likely to con- have an unplanned pregnancy, the relative risk of tinue to be associated with psychiatry while the law mental health problems is no greater if they have a links abortion and mental health. 25.2 PREGNANCY AND MENTAL HEALTH PROBLEMS Traditionally pregnancy has been perceived as a time major depression found a prevalence of 12.7% during of particularly good mental health with an idealized pregnancy [15]; it is also now increasingly recognized picture of women blooming in pregnancy. Women are thatpostnataldepressionoftenbeginsantenatally[16]. expected to be fundamentally content at the prospect Postnatal depression itself is one of the commonest of being a mother [13], though there is a clear accep- adverse consequences of pregnancy, with a prevalence tance in Western culture that mental ill-health occurs, between 10 and 13% [17]. Nevertheless, society’s with this frequently being cited as a reason for termi- views of pregnancy and motherhood as a time of nation of pregnancy (see above). Recent studies happiness and fulﬁlment may mean it is particularly have also shown that in women who continue with difﬁcult for women to admit to mental health problems their pregnancy mental health problems are far from during the perinatal period; the stigma of mental rare. For example, Evans et al. [14] reported that levels illness may therefore be even more pronounced in of depressive symptoms were higher in the third the perinatal period compared with other times in a trimester than postnatally and a meta-analysis of woman’s life [18].

GENDER AND REPRODUCTIVE HEALTH 323 Perinatal mental illness is associated with similar raise prolactin it is likely that fertility will continue to risk factors for mental illness that occur at other increase in women with psychotic disorders. Women times in a women’s life, including lack of social sup- with schizophrenia are less likely than women with port [19–23], stressful life events [20,24], marital affective psychosis to have stable relationships and conﬂict [20,22,24,25], younger maternal age [26] and this is likely to reduce fertility in itself. However, a history of psychiatric problems [17]. However, the recent epidemiological studies have reported that impact of mental illness during the perinatal period is around two-thirds of women with chronic psychotic notonlyonthewomanherselfbutalsoonherinfantand disorders have children at some point in their the rest of her family. There is a large body of evidence lives [38,39]. suggesting that postnatal depression is associated with Women with severe mental disorders who become adverse infant developmental outcomes [27–30], par- pregnant are at an increased risk of obstetric compli- ticularly in developing countries [31], and there is also cations including low birth weight, intrauterine now a growing literature on the adverse effect of growth retardation, pre-term birth, stillbirth and peri- schizophrenia and other major mental illnesses on natal death [40,41], and are therefore particularly in mother–infant interaction [27,32,33]. Recent research need of optimal antenatal care. The increased risk of has also focused on the adverse impact of antenatal complications is likely to be due to a number of disorders on child outcomes (e.g. see Reference [34]), factors, including genetic susceptibility, psychotropic This research literature has been widely disseminated medication and lifestyle factors, e.g. smoking, sub- and has an impact on women’s attitudes to psycholo- stance misuse, poor nutrition and poverty [36], and gical problems, possibly making it more difﬁcult for there is also accumulating evidence that severe psy- themtoseekhelpformentalhealthproblemsduringthe chological stress during pregnancy has an adverse perinatal period (see Reference [35]). effect on foetal development [42]. These issues are most pronounced for pregnant Psychiatric disorders arealsonow aleading women with severe mental disorders. Before the cause of maternal death during the perinatal period advent of community psychiatry many patients with (pregnancy and up to one year postpartum) in indus- severe mental disorders were incarcerated on long- trialized countries [43,44]. Recent National Institute stay wards in asylums with very limited opportunities for Clinical Excellence guidelines in the UK high- for relationships. If any such relationship resulted in a light the importance of detecting and treating psy- pregnancy the child was inevitably removed from the chiatric disorders during pregnancy, but it is clear woman’s care. Studies of fertility at this time found that the stigma of mental illness continues to prevent low fertility in women with schizophrenia, though women with a history of severe mental disorders these studies usually only included hospitalized from openly disclosing their psychiatric history. It patients and did not examine reproduction over the also prevents professionals responding appropri- whole reproductive period [36]. An increase in ferti- ately, even to pregnant psychiatric professionals lity was reported in several countries in the 1960s and with a history of severe mental disorder. This tra- 1970s, though rates continued to be lower than in the gically led to infanticide and the suicide of a UK general population. More recently, a study using a young psychiatrist with bipolar disorder [45]. This larger primary care data set reporting on the general mayalsobe whywomenwithpsychiatric disorders fertility rate, a more accurate measure of fertility are less likely to access adequate antenatal care than than previously used, found lower fertility rates in other women [46]. women with nonaffective psychoses compared with Women are at increased risk of relapse of mental controls matched for age and general practice [37]. disorders in the perinatal period, partly as a result of However, reduction in fertility in women with psy- discontinuation of medication during pregnancy [47]. chotic disorder is at least partly explained by prolac- Such discontinuation is often due to understandable tin-raising antipsychotic medication (which can lead fears of the effect of medication on the growing to anovulatory cycles or amenorrhoea); with increas- foetus, often also reﬂecting friends and families’ con- ing use of newer antipsychotic medications that do not cerns [48]. Since the thalidomide scare in the 1960s,

324 SOCIAL CONSEQUENCES AND RESPONSES ambiguous (usually alarmist) stories in the media have Women suffering from an acute exacerbation of not infrequently appeared regarding the safety/risk of their mental disorder during the immediate postnatal psychotropic drug exposures during pregnancy. period, or with an episode of postnatal psychosis (a Although the impact on the public of this type of particularly severe form of affective psychosis), reporting is unclear, specialized centres have reported often need admission to a psychiatric unit. The adverse effects of these misleading sources of informa- current recommended management of mothers with tion [49]. Drug discontinuation may not be clinically postpartum disorders, in the UK at least, is to keep advisable for women with a history of severe disorders the mother with the baby whenever possible, as the illness itself can lead to poor outcomes for the although this recommendation is relatively recent. mother and the infant [50]. Women with a history of In the ﬁrst half of the twentieth century separation of bipolar disorder are also at particularly high risk of mother and infant was considered to be best practice, relapse in the early postnatal period [51]. whether the mother was cared for in the home or an Although many women with severe mental disor- asylum [53]. It was only in the late 1950s that ders are able torear a familysuccessfully(see below),a practice began to change and the ﬁrst facilities to substantial proportion of women with mental disorders allow joint psychiatric admission were established in do have parenting difﬁculties. As a result, health and the United Kingdom. Since this time the type and social services are often asked to consider, during number of facilities has varied [54], ranging from a pregnancy, whether a pregnant woman with a severe single bed on a general psychiatric ward, where a mental disorder should keep her baby postnatally. At baby may also be accommodated, to large separate present services do not always make parenting assess- wards with dedicated staff (mother and baby units). ments optimally – in a study of mothers in a psychiatric These units appear to be valued by patients, but their mother and baby unit in south London where there had availability is patchy, even in countries such as the been pre-birth concern, pre-birth planning (in the form UK where they are recommended [54]. There have of a case conference and arrangements for residential been few evaluations of mother and baby units and assessment where appropriate) occurred in less than no randomized controlled trials investigating their half the study population [52]. effectiveness [55]. 25.3 MOTHERS WITH SEVERE MENTAL DISORDERS Thereis now aconsiderableliteraturedescribingthe larly those with a diagnosis of schizophrenia, are not wish of women with severe mental illness to fulﬁl the primary carers of their children [58]. their ‘normal role’ and be parents, and their fear of There is clearly an association between severe being stigmatized as parents because of their psy- mental illness and parenting difﬁculties, but the chiatric diagnosis [56]. The female desire to bear risk of severe mental illness is higher in individuals children can be so great that it continues despite with low income, low levels of education, lack of repeated losses of previous children to the care support and life stressors [59]. These factors also system [57], and many women with severe mental increase the risk of parenting stress and dampened disorders see the role of motherhood as the normal- parenting nurturance [60,61], so these risk factors ization of their otherwise limited lifestyle [56] – can be just as important in leading to poor parent- parenthood can potentially overcome the isolation ing outcomes in parents with severe mental illness. and stigma that are associated with long-term mental The complex interrelationships between these illness [2]. Indeed, the majority of women with various risk factors, severe mental illness and severe mental disorders, i.e. chronic psychotic dis- parenting difﬁculties, are likely to be multidirec- orders, have children [38,39], but fears of custody tional, and interventions to mitigate the effects of loss are of frequent concern. These concerns are such risk factors may lead to improved parenting understandable as a signiﬁcant proportion, particu- outcomes.

GENDER AND REPRODUCTIVE HEALTH 325 The actual percentage of mothers who manage to difﬁculties they experience [67,69], and leads to fear retain primary custody of the children has been that people will treat them and their children differ- reported with remarkably variable rates, with differ- ently if they know about their mental illness [66]. ences depending on the setting, research methods and Parents who have gone through a divorce often report sampling techniques used [57]. However, many having their diagnosis used against them while ﬁght- women are able to rear a family successfully despite ing for custody in the courts [70]. We do not know if the presence of severe and enduring psychoses – parents with a severe mental illness such as schizo- parents within any given diagnostic category can have phrenia are discriminated against in such cases but parenting skills ranging from excellent to maltreating, stigmatizing attitudes, knowledge and behaviours are and social factors inevitably impact on patients’ par- found in health and social care professionals as well as enting capabilities. Most clinical and research litera- the general public [69]. Research is needed to estab- ture focuses on the potential adverse impact of the lish whether the child protection system carries out illness on the child, while neglecting the needs of the discriminatory practices as a result of inaccurate mother [62], even though addressing these needs knowledge and beliefs. could improve the ability of the mother to parent her The pain of losing custody of a child can be severe child. These include the presence or absence of effec- and lifelong. One qualitative study involving focus tive social support, poverty, domestic violence (which groups of mothers with severe mental illness and is more commonly experienced by women with severe professionals reported that a mother described the mental disorders than women in the general popula- effect as ‘my heart is in chains ... the pain never tion) and other sources of stress, including any special completely goes away’ [71]. The trauma of losing needs of the child. Recent UK policy has tried to custody of a child or the perceived threat of this address the fact that women with mental illness are occurring is likely to exacerbate symptoms, and pro- often mothers [63,64] but the complex needs of this fessionals ﬁnd it painful and difﬁcult to support these group remain frequently unaddressed [65], and in women [72]. The most recent UK Conﬁdential many cases the parenting status of mental health Enquiry into Maternal Deaths highlighted an apparent patients is not even recorded in case notes [66]. greater risk of women’s deaths following child pro- The trauma of hospitalization is a major concern tection conferences [44]. As some have pointed out, for mothers with severe mental disorder [67] as outcomes for parents with mental illness who cannot mothers often feel that inpatient units are inappropri- care for their children, temporarily or potentially ate places for children to visit them [67]. However, permanently, could be improved by rethinking ser- treatment at home by intensive home treatment teams vices [73]. For example, the provision of family- during acute exacerbations of illness can also be orientated supported housing that provides space for difﬁcult for these families as the needs of the children children to visit would make parents more likely to are difﬁcult to meet [68]. Such issues can lead to accept rehabilitative support [73]. By addressing delays in contacting services, with the subsequent risk losses experienced by parents who lose custody of of worse outcomes. children, clinicians may help the parents prevent Concerns about stigma can also prevent mothers ‘replacing the children’ repeatedly, with inevitable with mental illness from talking openly about the multiple losses as a result. 25.4 DOMESTIC VIOLENCE Thereisincreasingrecognitionofthehighfrequencyof in up to 20% of women [74]. Domestic violence is violence against women and its profound effects on associated with depression, anxiety disorders, post- mental health, particularly during the reproductive traumatic stress disorder,substancemisuseand suicid- period. A systematic review by Gazmararian ality [75], and exacerbation of psychotic symp- etal. [74]foundthat violenceduringpregnancyoccurs toms [76]. Domestic violence often starts or increases

326 SOCIAL CONSEQUENCES AND RESPONSES in severity during pregnancy and there is increasing mental disorders are at a higher risk of domestic awareness of the impact of domestic violence on poor violence [78], possibly due to social and cognitive health outcomes for the mother and adverse develop- deﬁcits secondary to the illness, which makes it more mentaloutcomesforthechild[77].Womenwithsevere difﬁculttonegotiateoravoiddangeroussituations[79]. 25.5 THE LEGAL AND PSYCHIATRIC RESPONSE TO INFANTICIDE Infanticide(thekillingofaninfantatorsoonafterbirth) during a vulnerable time. A review of the types of andneonatacide(thekillingofaneonatewithintheﬁrst mental disorders associated with infanticide is beyond 24 hoursofbirth)inmanycountriesisseenasaseparate the scope of this chapter, but for further details see the category from other forms of child killing – Oberman discussion by Spinelli [81]. Some societies, e.g. the [80] has estimated that speciﬁc statutes governing United States of America, have not adopted such a infanticideoccur in29countries.Inthe UK,theBritish medical model for understanding infanticide, and this Infanticide Act 1938 deﬁned a separate category for has led to high-proﬁle cases of women with severe women who kill their infant as a consequence of a mental disorders who have killed their infants being disturbance in the balance of mind from the effects of incarceratedinprison[81].Thispresumablyreﬂects,in childbirth and lactation. The degree of abnormality of general, differing cultural attitudes towards murder mind in these cases is less than that needed to prove and, in particular, attitudes towards infanticide, the psychiatric abnormality in most insanity defences issue of diminished responsibility and the conceptua- and provides for diminished responsibility of mothers lization of perinatal disorders. 25.6 CLASSIFICATION OF PERINATAL MENTAL DISORDERS There has been considerable debate on the classiﬁ- patients [54,82] and of research in this area. On the cation of perinatal mental disorders, and inevitably one hand, similar risk factors are associated with psychiatric classiﬁcations reﬂect prevailing causal mental disorders during the reproductive period as at models and clinical and research priorities. The other times in life, but there is a clear increase in current ICD and DSM classiﬁcations provide a risk of psychosis during the early postnatal period. postpartum onset speciﬁer rather than categorizing The implications of a mental disorder during the perinatal mental disorders separately. ICD-10 reproductive period are profound. The decision on recommends the use of postpartum categories only the classiﬁcation of perinatal disorders by the ICD- when they do not meet criteria for disorders classi- 11 and DSM-V expert groups will be an interesting ﬁed elsewhere. This failure to classify perinatal reﬂection on whether perinatal mental disorders are disorders separately probably partly contributes to again seen as relatively minor or disorders of pri- the relative paucity of speciﬁc services for these mary importance. 25.7 FATHERS AND MENTAL DISORDERS Women with severe mental disorders are more likely and social care needs. However, recent epidemiolo- than men to have children [83] and this is partly why gical research has conﬁrmed that the increased risk of there is a dearth of research on fathers with mental severe mental disorders found in mothers in the post- disorders. There is far less known about the prevalence natal period is not found in fathers [51]. However, and of parenthood among fathers with mental illness, not surprisingly, social factors impact on paternal predictors of their ability to parent, and their health mental health – lone fathers are more likely to have

GENDER AND REPRODUCTIVE HEALTH 327 a common mental disorder than other men [84,85]. than mothers with severe mental illness [88], but Paternal mental health problems are also associated clinicians often admit to knowing less about fathers with poorer child outcomes (e.g. see References and fathers’ needs than mothers. There is also little [86,87]). Fathers with severe mental illness are more literature on how the stigma of mental illness affects likely than other men with severe mental disorders to fathers, or how society and services respond to the be or have been married and live in noninstitutiona- needs of fathers with severe mental illness. This lized settings [88]. They are perceived by clinicians neglected area urgently needs more research and to be in greater need of parenting skills training clinical attention. 25.8 CONCLUSION Women, particularly pregnant women and mothers, 4. Department of Health (2004) Abortion Statistics, are at increased risk of mental health problems during England and Wales, 2003. Department of Health. the reproductive period, whereas men do not experi- 5. Fergusson, D. M., Horwood, L. J. and Boden, J. M. ence such an increased risk. Women are more likely (2008) Abortion and mental health disorders: evidence than men to be parents, but social factors can impact from a 30-year longitudinal study. British Journal of on the mental health of both mothers and fathers. Psychiatry, 193, 444–451. Societal and cultural factors have a profound impact 6. Curfman, G. D., Morrissey, S., Greene, M. and Drazen, J. M. (2008) Physicians and the ﬁrst amendment. New on mental health in the reproductive period, by England Journal of Medicine, 359, 23. increasing the risk of mental health problems, inﬂuen- cing the legal processes associated with terminations 7. Lazzarini, Z. (2008) South Dakota’s abortion script – threatening the physician–patient relationship. New of pregnancy and infanticide, and leading to stigma, England Journal of Medicine, 359, 2189–2191. which is associated with inequities in accessing 8. Reardon, D. C. and Cougle, J. R. (2002) Depression services and maternal and child outcomes. Mental and unintended pregnancy in the National Longi- health problems in pregnant women, mothers and tudinal Survey of Youth: a cohort study. British fathers therefore cannot be addressed without a clear Medical Journal (Clinical Research Edition), 324, understanding of the role of social factors in their 151–152. development and how social factors impact on the 9. American Psychological Association (2008) Report of response by professionals and wider society to mental the APA Task Force on Mental Health and Abortion. health problems in the reproductive period. 10. Charles, V. E., Polis, C. B., Sridhara, S. K. and Blum, R. W. (2008) Abortion and long-term mental health out- comes: a systematic review of the evidence. Contra- REFERENCES ception, 78, 436–450. 11. Dingle, K., Alati, R., Clavarino, A. et al. (2008) Preg- 1. Leff, J. (1991) The evaluation of reprovision for psy- nancy loss and psychiatric disorders in young women: chiatric hospitals, in Social Psychiatry, Theory, Meth- an Australian birth cohort study. British Journal of odology and Practice (ed P. Bebbington), Transaction Psychiatry, 193, 455–460. Publishers, New Jersey, pp. 247–264. 12. Oates, M., Jones, I. and Cantwell, R. (2008) Abortion: a 2. Apfel, R. J.and Handel, M.H. (1993) Madness andLoss psychiatric issue? Invited commentaries on ... Abor- of Motherhood, American Psychiatric Press, Washing- tion and mental health disorders. British Journal of ton, DC. Psychiatry, 193, 453–454. 3. World Health Organization (2000) Women’s 13. O’Keane, V., Marsh, M. and Seneviratne, G. (2006) Mental Health: An Evidence Based Review on Mental Mental illness and pregnancy, in Psychiatric Disorders Health Determinants and Population, Department of and Pregnancy, Taylor & Francis, Oxford. Mental Health and Substance Dependence, WHO, 14. Evans, J., Heron, J., Francomb, H. et al. (2001) Cohort Geneva. study of depressed mood during pregnancy and after

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26 Stigma and discrimination 1 1 2 Graham Thornicroft, Nisha Mehta, Elaine Brohan and Aliya Kassam 1 1 Health Service and Population Research Department, Institute of Psychiatry, King's College London, London, UK 2 School of Medicine, King's College London, London, UK 26.1 INTRODUCTION Stigma (plural stigmata) was originally used to refer to attribute, trait or disorder that marks an individual as anindelibledotleftontheskinafterstingingwithasharp being unacceptably different from the “normal” people instrument, sometimes used to identify vagabonds or with whom he or she routinely interacts, and that elicits slaves [1–4]. Recently stigma has come to mean ‘any some form of community sanction’ [5–7]. 26.2 UNDERSTANDING STIGMA There is now a voluminous literature on tinction between the mainstream/normal group and stigma [5,8–19]. The most complete model of the the labelled group as in some respects fundamentally component processes of stigmatization has four key different; (iv) status loss and discrimination: components [20], which are: (i) labelling, in which devaluing, rejecting, and excluding the labelled group. personal characteristics are signalled or noticed as Interestingly, more recently the authors of this conveying an important difference; (ii) stereotyping, model have added a revision to include the emotional which is the linkage of these differences to undesirable reactions that may accompany each of these characteristics; (iii) separating, the categorical dis- stages [21,22]. 26.3 SHORTCOMINGS OF WORK ON STIGMA Five key features have limited the usefulness of stigma upon schizophrenia) have made relatively few theories. First, while these processes are undoubtedly connections with legislation concerning disability complex, academic writings on stigma (which in rights policy [23] or clinical practice. Second, the ﬁeld of mental health have almost entirely focused most work on mental illness and stigma has been Principles of Social Psychiatry, second edition Edited by Craig Morgan and Dinesh Bhugra Ó 2010 John Wiley & Sons, Ltd.

332 SOCIAL CONSEQUENCES AND RESPONSES descriptive, overwhelmingly describing attitude sur- shown, for example, in lower rates of ﬁnancial invest- veys or the portrayal of mental illness by the media. ment in mental health services. Second, the quality of Very little is known about effective interventions to information that we have is relatively poor, with few reduce stigma. Third, there have been notably few comparative studies between countries or over time. direct contributions to this literature by service Third, there are clear links between popular under- users [24]. Fourth, there has been an underlying standings of mental illness and whether people in pessimism that stigma is deeply historically rooted mental distress seek help or feel able to disclose their and difﬁcult to change. This has been one of the problems [38]. The core experiences of shame (to reasons for the reluctance to use the results of research oneself or to one’s family) and blame (from others) are in designing and implementing action plans. Fifth, common, although they vary to some extent between stigma theories have de-emphasized cultural factors cultures. Where comparisons with other conditions and paid little attention to the issues related to human have been made, mental illnesses are usually more rights and social structures. stigmatized, and indeed this has been called the Stigma can be seen as an overarching term includ- ‘ultimate stigma’ [9]. Finally, the behavioural con- ing three elements: sequences of stigma (rejection and avoidance) appear to be universal phenomena. Nevertheless, this litera- . problems of knowledge (ignorance or misinfor- ture says little about a core issue: how such processes mation); affect the everyday lives of people with mental illness. Most research on stigma and mental illness consists . problems of attitudes (prejudice); of attitude surveys, investigating what people would do in imaginary situations or what they think ‘most . problems of behaviour (discrimination) [6,20,25]. people’ would do, for example, when faced with a neighbour or work colleague with mental illness. This Stigma produces changes in feelings, attitudes and work has emphasized what ‘normal’ people say rather behaviour for both the person affected (lower self- than the actual experiences of people with mental esteem, poorer self-care and social withdrawal) and illness themselves. It also assumes that such state- for family members [16,26–30]. ments (usually on knowledge, attitudes or behavioural In recent years there have been early signs of a intentions) are linked with actual behaviour, rather developing focus upon discrimination. This can be than assessing such behaviour directly. In short, with seen as the behavioural consequences of stigma, some clear exceptions, this research has focused on which act to the disadvantage of people who are hypothetical rather than real situations, shorn of emo- stigmatized [23,31–33]. The importance of discrimi- tions and feelings [39], divorced from context [40], natory behaviour has been clear for many years in indirectly rather than directly experienced and without terms of the personal experiences of service users, in clear implications for how to intervene to reduce terms of devastating effects upon personal relation- social rejection [41]. In this context, discrimination ships, parenting and child care, education, training, is understood in this chapter to mean: ‘an unjust work and housing [26]. Indeed, these voices have distinction in the treatment of different categories of said that the rejecting behaviour of others may people, especially on the grounds of race, sex, or age’. bring greater disadvantage than the primary condition However, there is now a growing body of qualitative itself. evidence that considers how mental health service Generally consistent ﬁndings have emerged from users subjectively experience, describe and cope with assessing stigma in Africa [34], Asia [35], South stigma. This has allowed an enhanced understanding America [36], in Islamic countries of North Africa of: the scope and dimensions of stigma; the personal and the Near East [37], and in Europe [14]. First, there consequences of stigma; mental health service users’ are few countries, societies or cultures in which people views on antistigma campaign priorities; and the with mental illness are considered to have the same impact of stigma on the family, along with the devel- value as people who do not have mental illness, as opment of related scales to measure stigma [42].

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