Family Empowerment Program

bs_bs_banner Nursing and Health Sciences (2015), 17, 387–394 Research Article A family empowerment program for families having children with thalassemia, Thailand Chintana Wacharasin, RN, PhD, Maneerat Phaktoop, RN, PhD and Siriyupa Sananreangsak, RN, Dr.PH. Faculty of Nursing, Burapha University, Muang, Thailand Abstract The purpose of this quasi-experimental design study was to examine the effectiveness of a family empower- Key words ment program (FEP) on family functioning and empowerment among 56 families having children with thalassemia. The 26 families in the experimental group received the FEP and usual care, while 30 families in the control group received usual care. Data collection occurred through family functioning and empowerment questionnaires. Between-group differences were tested with t-tests and analysis of variance. The result revealed that family caregivers who participated in the FEP had significantly increased family functioning and empowerment scores over time. The FEP can be used as a powerful intervention for assisting families and children with thalassemia and the education of health professionals. children with thalassemia, family empowerment, family functioning, Thailand. INTRODUCTION Literature review Thalassemia is a chronic disease caused by genetic Children with thalassemia suffer physiologically (acute and hemoglobinopathy contributing to a chronic illness in chil- chronic hemolytic anemia, infections, deformed bones, dren. The incidence of thalassemia is highest in developing hepatospleenomegaly, growth retardation, iron induced heart countries, specifically in Southeast Asia (Weatherall, 2011). failure), psychologically (low self-image from bullying by In the eastern region of Thailand, 13% of children were peer groups), socially (isolated and absent from school), and diagnosed with thalassemia, which is ranked as the second spiritually (powerlessness, hopelessness, and worthlessness) greatest health problem among chronically ill children due to the severity of thalassemia, long-term treatments, and (Wacharasin et al., 2008). The occurrence of this chronic con- the level of care that families are able to provide for their dition might relate to labor migration from northeastern children (Issaragrisil et al., 2001; Weatherall, 2005). Family Thailand. caregivers often lack information about advanced effective treatments and thalassemia management, experience defi- Thailand healthcare services recognize the challenges and cient support from other family members and healthcare consequences of thalassemia and have set the protocols for professionals, have financial difficulties, and must manage thalassemia prevention and controls as a national agenda with inefficient healthcare services (Prasomsuk et al., 2007; (Englezos, 2013). Childhood and infant mortality have been Wacharasin et al., 2008). reduced due to improved public health measures and treat- ments, but large numbers of children still suffer from The health of family members is affected by caring for thalassemia due to inappropriate health care. The treatments children with thalassemia and reciprocally influences the include health education, daily regular treatments of folic illness of the affected children (Wright & Bell, 2009; Wright acid, high protein and low iron diet, iron chelation, routine & Leahey, 2013). The mothers taking care of children with health checkups, lifelong packed red cell transfusions, and thalassemia experience emotional distress, fear of death, dif- sometimes a spleenectomy and stem cell transplantation. The ficulties in managing personal feelings, and inadequate avail- care of children during and following these treatments ability of supportive nursing services (Sapountzi-Krepia requires a high level of empowerment and functioning et al., 2006). Family caregivers also experience stress and among family caregivers. anxiety, low self-esteem, and financial burdens (Wacharasin et al., 2006). Families had increased positive relationships Correspondence address: Chintana Wacharasin, Faculty of Nursing, Burapha Uni- (Wacharasin et al., 2008) that might be associated with their versity, Muang, Chonburi 20131, Thailand. Email: [email protected] rejoicing in their children having stem cell transplantation Received 5 June 2014; revision received 3 December 2014; accepted 3 December (Manookian et al., 2014). 2014 Family’s functioning and empowerment levels when pro- © 2015 Wiley Publishing Asia Pty Ltd. viding care for children with thalassemia can be very challeng- ing. Family functioning refers to family communication, cohesion, behavioral control, and child-care management. doi: 10.1111/nhs.12201

388 C. Wacharasin et al. Family functioning influences childrens’ adjustment to Participants chronic illness resulting in either well-being (McClellan & Cohen, 2007) or suffering. One study found that 13–36% of Participants were families with children with thalassemia families with chronic illness had unhealthy levels of family who were recruited from an outpatient department within a functioning (Herzer, 2010). However, family functioning in general hospital in an eastern region of Thailand. Inclusion Thai families of children with thalassemia was found to be no criteria were primary family caregivers that provided care for different from other families with similar characteristics at least three months, could communicate in Thai, had no (Thanarattanakorn et al., 2003). Details of family functioning history of a neuro-psychiatric disorder, and were willing to level and the intervention to improve functioning are still participate. Participants were excluded from the study if their unclear. Family empowerment refers to the ability to realize children received stem-cell transplantation. the family reality, make decisions related to child and family problems, manage child care, and confidently control family The sample size was determined via power calculation situations.However,30% ofThai families having children with based on the mean scores of the pilot study. As a result, the thalassemia reported low empowerment (Wacharasin et al., sample size consisted of 30 families per group (experiment 2006). Family caregivers, especially mothers of children with and control). At the outpatient hematological department, thalassemia, had insufficient information on how to solve child researchers invited the eligible family caregivers to partici- health problems and provide the best child-care and child- pate in the study and replaced the families who refused rearing practices (Prasomsuk et al., 2007). Mothers have the until the sample size of 30 families was reached for each most responsibility to care for their children, have the poten- group. In the recruitment process, three families in the tial to promote positive and proactive interactions with fami- experimental group refused to participate due to time con- lies, and can promote independence and the acquisition of straint, but none in the control group. The experimental thalassemia care skills. Often, many mothers are not empow- group received the FEP and the usual care, while the ered to do these tasks.Therefore, families having children with control group received only the usual care. Four families in thalassemia need specific interventions that promote optimal the experimental group withdrew from the study since they family functioning and family empowerment. changed their place of employment and missed the last day of the session. All sessions of the FEP were conducted in a Previous nursing interventions for these families focused on private room at the Faculty of Nursing, Burapha University, offering various types of education programs; counseling with Thailand. individual and group families (Weatherall, 2010); and a family- centered empowerment model to promote knowledge, sense of Instruments control, ability to make decisions, and provide care (McCarthy et al., 2002; Allahyari et al., 2006). A family-centered empower- The research team developed two specific instruments for the ment model has been shown to increase awareness and study based on theory and research synthesis. The instru- knowledge about thalassemia care and the quality of life of ments included demographic data, Thai family functioning, school-aged children with thalassemia (Najafi et al., 2011). and family empowerment questionnaires. The family empow- Moreover, cognitive behavioral family therapy has been found erment questionnaires were examined for item content valid- to increase the compliance with chelation therapy in ity index (I-CVI) and scale content validity index (S-CVI) by β-thalassemic children, but not for the family caregivers three experts in the areas of family nursing, pediatric nursing, (Mazzone et al., 2009).The existing interventions were effective and instrument development. Internal consistency reliability in reducing family stress (Atkin & Ahmad, 2000) and increas- was tested on 20 family caregivers with characteristics similar ing knowledge and awareness about thalassemia management to the study participants. The family empowerment question- and compliance with medical treatment but could not meet the naire, the I-CVI and S-CVI average was 0.70 to 0.84 and 0.85, demands of Thai families of children with thalassemia in order respectively. Cronbach’s alpha coefficient was 0.74. The to enhance family functioning and family empowerment. family functioning questionnaire, the I-CVI, and S-CVI average were 0.70 to 0.94 and 0.81, respectively. Cronbach’s The effective interventions should fit with the family alpha coefficient was 0.78. bio-psychosocial structures and a multifaceted treatment approach. It appears that a fundamental tenet of nursing Demographic data form was used to obtain descriptive interventions for families having children with thalassemia is characteristics of family caregivers and children with adopting a family empowerment process. The purpose of this thalassemia. study was to examine the effect of a family empowerment program FEP on family functioning and family empower- A Thai Family Functioning Questionnaire was developed ment in families with children with thalassemia. based on the McMaster Model of Family Functioning (Epstein et al., 1993) and a research synthesis specific for METHODS this study to measure the family functioning of a family caregiver in providing care for a child with thalassemia. This Design 34-item self-report instrument is composed of six subscales: providing physical–psychosocial–spiritual care for child A quasi-experimental design with two-group, pre-post tests, with thalassemia, family communication, family cohesion, and a follow-up design was conducted due to the inability to allocating child care resources, managing time for a child, have full control over extraneous variables. maintaining family interaction, modeling for a child, and assisting a child to be part of a society. Examples of items © 2015 Wiley Publishing Asia Pty Ltd.

Family empowerment program 389 include “My family provides high protein diet for my child food every day,” “I am confident that my family can detect everyday”, “I and other family members consult and support my child health problem,” and “I am confident that my each other in providing care for my child,” and “My family family can manage medical care for my child.” Its rating practices compassion, endurance, and scarifying as a scale ranged from 0 = “never” to 4 = “almost always.” A total modeling for my child.” Possible responses for each item score was calculated which ranged from 0 to 100. Higher ranged from 0 = “never practice” to 4 = “almost always prac- scores suggested a better level of family caregiver empower- tice”. A total score was calculated which ranged from ment. Cronbach’s alpha coefficient for the actual study was 0 to 136. Higher scores suggested a better level of family 0.79. functioning for family caregivers. Cronbach’s alpha coeffi- cient was 0.82. Intervention description A Thai Family Empowerment Questionnaire was devel- The FEP was developed based on an empowerment process oped based on a process of empowerment (Gibson, 1995) (Gibson, 1995), psychosocial management (Schmall et al., and a research evidence synthesis for this study to measure 2000), and family beliefs and experiences related to child care. family empowerment in managing care for children with Interventions utilized in the FEP were primarily adopted from thalassemia. This 25-item self-report instrument includes the Illness Beliefs Model (Wright & Bell, 2009) and the seven subscales: routine care, nutrition and elimination, Calgary Family Intervention Model (Wright & Leahey, 2013). activity and rest, safety, medical care, reducing stress, and The FEP was composed of five stages (See Table 1). The emotional support. Examples of items “I am confident that my family can manage care for my child to have appropriate Table 1. The family empowerment program (FEP) and the usual care FEP/Usual care Activities The FEP 1) Building a trusting relationship between the researcher and the Stage I: Searching realities and exploring hope and illness beliefs group of family caregivers and children with thalassemia about thalassemia 2) Exploring the families’ expectations about child health Aim: To realize family realities in caring children with thalassemia 3) Discussing their illness beliefs and experiences in caring for children Stage II: Considering and making decisions related to the families’ with thalassemia problems and needs, children’s emotional responses, and impact 1) Inviting the group to discuss family problems and needs as well as of thalassemia on children and their families the needs for healthcare services Aim: To exchange experiences and feelings and encourage social 2) Encouraging the group to exchange their responses to children’s support among group members emotions Stage III: Developing ability to manage care by sharing information 3) Commending their abilities in making decisions related to family and experiences and learning from other families about family functioning, family management, and family relationships problems and needs linked with children’s coping and management of the disease Aim: To develop ability to manage child care 1) Asking interventive questions 2) Offering new facilitating beliefs about the family’s functioning Stage IV: Strengthening confidence in controlling family situations 3) Providing updated information about treatment for thalassemia in managing child care effectively and effectively participating in 4) Reassuring the families about their competencies and resources usual daily life activities when caring for their thalassemia children and themselves 1) Reducing personal stress by observing stress symptoms, discovering Aim: To strengthen confidence in controlling family situations in cause of stress, changing beliefs related to stress, and practice managing child care and to reduce personal stress, communicate self-care and relaxation techniques effectively in challenging situations, and make tough caregiving 2) Expressing feelings, personal needs, and problems effectively by decision practicing communication skills, 3) Communicating effectively in challenging situations by asking for Stage V: Evaluating the FEP help about thalassemia child care, talking to the doctor about children’s treatments The usual care 4) Making tough caregiving decisions during transitional phases Aim: To provide information about thalassemia and child care at 5) Creating family network 1) Reflecting about changes in family care and confidence the outpatient department 2) Offering reflections about observed changes and discussing additional plans or new ideas related to child-care practices that the family would like to try at home 1) Offering health education related thalassemia by health-care professionals at each visit 2) Arranging genetic counseling for each family by hematologist 3) Discussing families’ ability in taking care of children with thalassemia © 2015 Wiley Publishing Asia Pty Ltd.

390 C. Wacharasin et al. researchers served as facilitators who listened intentionally between experimental and control groups. One-way repeated with a nonjudgmental attitude to the families’ expressed measures anova was conducted to compare family function- illness beliefs. Respect for the family as experts about their ing and family empowerment scores in each group, at base illness experiences was shown. line, one month, and three month follow up after the inter- vention. Mauchly’s Test of Sphericity indicated that the Intervention for the experimental group assumption of sphericity had not been violated, χ2(2) = 0.003, P = 0.998 (family functioning) and χ2(2) = 4.813, P = 0.090 The participants received the FEP and usual care and were (family empowerment). divided into three groups with 10 families per group (12–15 participants per group). The FEP was conducted for each RESULTS group over four days. The first FEP session lasted two days and the second session of two days was offered two weeks The majority of children in both groups had thalassemia later. The principal investigator and co-researcher who at moderate levels of illness severity. All children with conducted the FEP were doctorally prepared nurses, who thalassemia received oral drugs and blood transfusions regu- conceptualized the reciprocal influence of illness and family larly. The duration of their illness experience was in the range dynamics that would ensure the program’s integrity. 1–11 years, with the majority being less than six years. In the experimental group, children with thalassemia ranged in Intervention for the control group age from 2.6 to 14 years and consisted of 23 females and 3 males. In the control group, the age range was from two to The participants received only the usual care at the outpa- 14 years and consisted of 26 females and 4 males. In both tient department of the general hospital. The usual care was experimental and control groups, the majority of primary offered during meetings with a doctor for monthly health family caregivers were females and ranged in age from 30 to check up and treatment such as blood transfusions and medi- 44 years. The majority of family caregivers were mothers cations, and sometimes health education by nurses. (73%) caring for their children. Family caregivers spent 6.7 to 6.9 h per day taking care of their children. The predominant Ethical considerations religion was Buddhist (98%). All the family caregivers had received at least elementary school education. There were no The ethical review committee of Burapha University significant differences in characteristics of primary family approved this research project. The procedures of the study caregivers and children with thalassemia between the experi- were fully explained and informed consent was obtained mental and control groups (see Table 2). from each primary family caregiver prior to participation in the study. Anonymous and confidential procedures were per- As shown in Table 3, the mean differences in family func- formed to record the sample information and data were kept tioning and family empowerment were significant between private with access only given to the research team. the experimental group and control group after receiving the interventions at base line and one month (d¯1) and three- Data collection procedures month follow up (d¯2). The mean differences in family func- tioning and family empowerment were not significant The participants were verbally informed of their right to between the experimental and control groups after receiving withdraw from the study at any time or choose not to answer the interventions at one month and three month follow up any research questions without any implications for receiving (d¯3). Family functioning and family empowerment scores clinical services. Informed consent was obtained. One increased significantly after receiving the FEP and were co-researcher took part in the process of data collection. The retained at one month and three month follow up. self-administrated instruments for baseline assessment (pretest data) were distributed. After completion, partici- For the experimental group, after receiving the FEP, the pants were placed into groups and scheduled for the inter- family functioning scores and family empowerment scores vention. At one month and three months after completion of increased significantly over time, whereas those in the control the interventions, participants in both groups were given the group did not significantly change. The analysis of differences self-administered questionnaires for the post-test and between scores, at each point of measurement in each group, follow-up data. These sessions were arranged for times when demonstrated significantly increased family functioning and the families were taking the children with thalassemia for family empowerment scores in the experimental group over monthly health check ups at the outpatient department of a time, while the scores in the control group did not change general hospital. (see Table 4). Data analysis Examination of multiple pairwise comparisons, between each point of measurement in the experimental group Descriptive statistics and chi-square test were performed to revealed that family functioning and family empowerment analyze the demographic data and compare characteristics scores increased significantly from baseline to one month and between the experimental and control groups. Independent at the three month follow up, but did not significantly change t-test was conducted to compare the mean difference in the control group. These results indicated that the FEP group had sustained family functioning and family empow- © 2015 Wiley Publishing Asia Pty Ltd. erment for three months. However, the findings revealed no

Family empowerment program 391 Table 2. Baseline clinical and demographic characteristics of children with thalassemia and primary families caregivers Demographic and clinical characteristics Control group (n = 30) (%) Experimental group (n = 26) (%) P-value 0.364 Children with thalassemia 16 (53.3) 16 (61.5) 0.960 Gender 14 (46.7) 10 (38.5) 0.977 Female (M = 7.3, SD = 3.6, range 2–14 years) (M = 7.6, SD = 3.7, range 2.6–14 years) Male 0.851 Age (years) 4 (13.3) 4 (15.4) – <3 10 (33.3) 7 (26.9) 4–6 16 (53.3) 15 (57.8) 0.582 7–14 (M = 5.0, SD = 2.8, range = 1–11) (M = 4.8, SD = 4.89, range = 1–11) 0.963 Duration of Illness (year) 12 (40.0) 9 (34.6) <3 8 (30.7) 0.819 4–6 9 (30.0) 6 (23.1) 7–8 5 (16.7) 3 (11.5) 0.962 9–11 4 (13.3) 0.954 Severity of illness 10 (38.5) Mild 10 (33.3) 15 (57.7) Moderate 18 (60.0) Severe 1 (3.8) Treatment 2 (6.7) Oral drug 26 (100) Blood transfusion 30 (100) 26 (100) Iron chelation therapy 30 (100) 4 (13.3) 3 (10.0) Primary family caregivers Gender 26 (86.7) 23 (88.5) Female 4 (13.3) 3 (11.5) Male (M = 37.9, SD = 9.4) Age (years) Range 24–61 years (M = 38.9, SD = 11.63) 6 (20.0) Range 23–62 years 23–29 19 (63.3) 4 (15.4) 30–44 4 (13.3) 18 (68.2) 45–59 1 (3.3) 3 (11.5) > 60 1 (3.8) Education level 3 (10.0) Illiteracy 13 (43.3) 3 (11.5) Elementary 13 (43.3) 12 (46.2) High school 1 (3.3) 11 (42.3) Bachelor Relationship to the child 22 (73.3) 0 Mother 4 (13.3) Father 4 (13.3) 19 (73.1) Grandmother (M = 5.4, SD = 2.96, range 1–11) 3 (11.5) Duration of child care (Years) 11 (36.7) 4 (15.4) <3 8 (26.7) (M = 6.8, SD = 3.9, range 1–11) 4–6 7 (23.3) 8 (30.8) 7–8 4 (13.3) 8 (30.8) 9–11 7 (26.9) 3 (11.5) interaction effect between the two interventions and the time and empowerment could be the effect of the FEP. The FEP of measurements (see Table 5). was conducted with the context of a trusting relationship with family caregivers, understanding family suffering and ability DISCUSSION of child care management, accepting family beliefs and expe- riences without judgment, and offering commendations. The Findings demonstrated that the FEP increased family func- FEP intervention was a group process focusing on exchang- tioning and family empowerment at one month and three ing caregiving experiences and knowledge, enhancing deci- month follow up, whereas the usual care did not. The charac- sion making, and providing psychosocial support (Paterson, teristics of children and primary family caregivers were not 2001; Pibernik-Okanovic et al., 2004). This intervention significantly different between the experimental group and changed the perspective about illness, improved child-care control group. Therefore, the improving of family functioning abilities, enhanced confidence in managing family situations, © 2015 Wiley Publishing Asia Pty Ltd.

392 C. Wacharasin et al. Table 3. Comparison mean differences of family functioning and family empowerment scores between the experimental and control group at each point of measurement d¯ (SD) Variables Control group (n = 30) Experimental group (n = 26) T d.f. P-value Family functioning 1.10 (11.56) 11.23 (13.1) 3.065 54 0.003 Baseline and 1 month (d¯1) 1.76 (11.79) 13.42 (12.78) 3.546 54 0.001 Baseline and 3 months (d¯2) 0.66 (11.44) 2.19 (13.30) 0.461 54 0.646 1 month and 3 months (d¯3) 1.46 (5.48) 7.38 (10.09) 2.775 54 0.008 Family empowerment 1.60 (7.26) 7.34 (8.35) 2.753 54 0.008 Baseline and 1 month (d¯1) 0.13 (6.08) −0.03 (6.28) 0.104 54 0.918 Baseline and 3 months (d¯2) 1 month and 3 months (d¯3) d¯ (SD) = mean (SD) of baseline minus mean (SD) of 1 month, 3 months follow up, and mean (SD) of 1 month minus mean (SD) of 3 months follow up. Table 4. Mean differences, at each point of measurement, in family functioning and family empowerment Variables d¯ (SD) F P-value d¯1 d¯2 d¯3 0.351 0.705 Family functioning 1.10 (11.56) 1.76 (11.79) 0.67 (11.44) 10.468 0.000 Control group 11.23 (13.17) 13.42 (12.79) 2.19 (13.30) Experimental group 0.732 0.484 1.46 (5.48) 1.60 (7.26) 0.13 (6.09) 12.105 0.000 Family empowerment 7.38 (10.09) 7.34 (8.35) −0.03 (6.28) Control group Experimental group d¯1 = d¯ at baseline and 1 month; d¯2 = d¯ at baseline and 3 months; d¯3 = d¯ at 3 months and 1 month. Table 5. Multiple pairwise comparison of family functioning and family empowerment scores between the experimental and control group at each point of measurement Variables Base line (1) Mean (SD) 3rd month (3) 1 vs. 2 P-value 2 vs. 3 1st month (2) 1 vs. 3 Family functioning 89.66 (9.04) 90.76 (9.35) 91.43 (5.91) 0.607 0.409 0.755 Control group 89.88 (12.8) 101.11 (14.16) 103.30 (4.66) 0.001 0.000 0.488 Experimental group 66.56 (6.00) 68.03 (4.83) 68.16 (6.11) 0.320 0.278 0.928 Family empowerment 66.42 (6.55) 73.80 (7.42) 73.76 (4.28) 0.000 0.000 0.982 Control group Experimental group 1 = base line data (pretest data), 2 = the one month data (post-test), 3 = the three months data (follow up). and helped families balance the ways they accomplish family interventions increased awareness and knowledge about care needs and improved family communication and thalassemia care (Najafi et al., 2013) and enhanced family attachment. functioning in terms of providing holistic care for the child with thalassemia, allocating child-care resources, and manag- The data from this study supported the idea that primary ing time for the child. family caregivers of children with thalassemia experienced a psychological burden due to long-term care (2–14 years) of Importantly, the FEP trained the family caregivers to com- children. They faced many difficulties in the management of municate effectively, make decisions, develop abilities to the child, family and self-care. Using interventive questions manage child and family care, and strengthen confidence to helped families explore personal feelings and beliefs as control family situations. These strategies allowed families well as child-care practices (Wright & Leahey, 2013). The to understand transition, be able to manage realistic © 2015 Wiley Publishing Asia Pty Ltd.

Family empowerment program 393 expectations, accept change, maintain family interaction, and CONCLUSION increase family empowerment in providing child and family care. A unique contribution of the FEP was the psychosocial edu- cational support. The present study suggests that a FEP can Children also experienced suffering and emotional distress be utilized as an additional nursing intervention to improve from the difficulties in the management of thalassemia as family functioning and increase empowerment in families of they suffered from invasive procedures of blood transfusion children with thalassemia. With the specificity of the inter- and continuous desferoxamine infusion for iron chelation. ventions described and employed, nurses can contribute to The FEP encouraged the family caregivers to realize the knowledge development about interventions for this popula- children’s emotional responses to their disease as they tion of families. The FEP could be useful to raise the con- exchanged experiences and gained psychosocial support sciousness of nurses and other healthcare professionals to from the group. Offering commendations and encouraging become more aware of the importance of enhancing family goal setting helped families assess their children’s health, functioning and empowerment when managing a serious personal problems, and needs (Knafl et al., 1992). The FEP chronic illness. Although further research about family inter- interventions contributed to reducing emotional distress ventions with this population is needed, family caregivers of (Gibson, 1995; Limacher & Wright, 2006; Wacharasin, 2010), children with thalassemia in this study were satisfied with our improving compliance to chelation therapy (Mazzone et al., best practices. 2009), and strengthening coping strategies for a more inte- grated daily life. The effectiveness of the FEP intervention is ACKNOWLEDGMENTS consistent with other investigations of family caregivers showing enhanced abilities to manage situations, make deci- This research was funded by National Research Fund Thai- sions, and provide care for children (Paterson, 2001; Kmita land. The authors would especially like to thank the families et al., 2002; McCarthy et al., 2002). Creating a network among with children with thalassemia who participated in this study families of children with thalassemia was a useful strategy and for the lessons learned. Special appreciation is offered to to expand the family resources and provide psychosocial Dr Lorraine M. Wright, Professor Emeritus of Nursing, Uni- support. versity of Calgary, and Dr Sharon Denham, Professor Emeri- tus of Nursing, Ohio University for their encouragement of However, one limitation of the study was the short period this clinical research project and their critique of this report. of time conducting the intensive intervention. Findings of this study need to be interpreted with caution since the partici- CONTRIBUTIONS pants were not randomized into groups. Study Design: CW. Implications for nursing practice and research Data Collection and Analysis: CW, MP. Manuscript Writing: CW, SS. This FEP intervention enhanced family functioning and family empowerment in families of children with REFERENCES thalassemia. For nurses to be successful in the implementa- tion of the FEP, a healing context needs to be created. A Allahyari A, Alhany F, Kazemnejad A, Izadyar I. The effect of trusting relationship between the nurse and family is an family-centered empowerment model on the Quality of Life of important element throughout the program. Viewing the school-age B-thalassemic children. Iran. J. Pediatr. 2006; 16: 455– family as the unit of care can assist nurses to focus on the 461. family interaction, understand the impact of illness in the family, and recognize family competencies. Exploration Atkin K, Ahmad W. Family care-giving and chronic illness: how of the family’s illness experience with compassion can enable parents cope with a child with a sickle cell disorder or thalassae- families to feel respected, accepted, and comfortable to mia. Health Soc. Care Community 2000; 8: 57–69. doi:10.1046/ discuss their problems and needs. Nurses need to understand j.1365-2524.2000.00211.x. the family’s illness beliefs about thalassemia, the suffering of families and their children, and recognize the reciprocal Englezos P. Thalassaemia. International Federation – Activity Plan impact of illness on family dynamics. Nurses can affirm the 2013. [Cited 6 June 2014.] Available from URL: http:// family’s decision making relevant to families’ problems and www.thalassaemia.org.cy. needs, and their children’s emotional responses. Child-care management abilities and confidence to control the family Epstein N, Bishop D, Ryan C, Miller L, Keitner G. The McMaster situation effectively can be enhanced by nursing guidance. Model: view of healthy family functioning. In: Walsh F (ed.). The FEP has been shown to increase family functioning and Normal Family Process (2nd edn). New York: Guilford Press, 1993; empowerment. Further research is needed to conduct a lon- 138–160. gitudinal study with the FEP in order to further understand its usefulness. Revisions to the program may need to be made Gibson GH. The process of empowerment in mother of chronically to sustain the change for families coping with a child with ill children. J. Adv. Nurs. 1995; 2: 1201–1210. thalassemia. Studies applying the FEP with families of chil- dren with thalassemia in the transition to adolescents also Herzer M, Godiwala N, Hmmel KA, Driscoll K, Mitchell M, Crosby need to be conducted. LE, Piazza-Waggoner C, Zeller MH, Modi AC. Family functioning in the context of pediatric chronic conditions. J. Dev. Behav. Pediatr. 2010; 31: 26–34. doi:10.1097/DBP.0b013e3181c7226b. Issaragrisil S, Siritanaratkul N, Fucharoen S. Diagnosis and management of thalassemia: Thailand as a model. Hematology: American Society of Hematology Education Program Book 2001; © 2015 Wiley Publishing Asia Pty Ltd.

394 C. Wacharasin et al. 1: 479–498. [Cited 5 May 2013.] Available from URL: http:// Prasomsuk S, Jetsrisuparp A, Ratnasiri T, Ratanasiri A. Lived expe- asheducationbook.hematologylibrary.org/content/2001/1/479.full. riences of mothers caring for children with thalassemia major in Kmita G, Baranska M, Niemiec T. Psychosocial intervention in the Thailand. J. Spec. Pediatr. Nurs. 2007; 12: 13–23. process of empowering families with children living with HIV/ AIDS – a descriptive study. AIDS Care 2002; 14: 279–284. Sapountzi-Krepia D, Roupa Z, Gourni M et al. A qualitative study Knafl K, Breitmayer B, Gallo A, Zoeller L. Parents’ views of health on the experiences of mothers caring for their children with care providers: an exploration of the components of a positive thalassemia in Athens, Greece. J. Pediatr. Nurs. 2006; 21: 142–152. working relationship. Children’s Health Care 1992; 21: 90–95. Limacher LH, Wright LM. Exploring the therapeutic family inter- Schmall V, Cleland M, Sturdevant M. The Caregiver Help Book: vention of commendations: insights from research. J. Fam. Nurs. Powerful Tool for Caregiving. Portland: Legacy Caregiving Service, 2006; 12: 307–331. 2000. Manookian A, Nasrabadi AN, Asadi M. Children’s lived experiences of hematopoietic stem cell transplantation. Nurs. Health Sci. 2014; Thanarattanakorn P, Louthrenoo O, Sittipreechacharn S, 16: 314–320. doi:10.1111/nhs.12103. Sanguansermsri T. Family functioning in children with Mazzone L, Battaglia L, Andreozz F, Romeo MA, Mazzone M. thalassemia. Clin. Pediatr. 2003; 42: 79–82. Emotional impact in β-thalassaemia major children following cognitive-behavioural family therapy and quality of life of Wacharasin C, Phaktoop M, Sananreangsak S. Research report on caregiving mothers. Clin. Pract. Epidemol Ment. Health 2009; 5: 5. empowerment program development for family caregiver of chroni- doi:10.1186/1745-0179-5. cally ill children: Thalassemia. Faculty of Nursing: Chonburi, 2006. McCarthy MJ, Herbert R, Brimacombe M, Hansen J, Wong D, (In Thai.) Zelman M. Empowering parents through asthma education. Pediatr. Nurs. 2002; 28: 465–473. Wacharasin C, Phaktoop M, Sananreangsak S, Teerarungsikul N, McClellan CB, Cohen LL. Family functioning in children with Tunsawad T. Evidence, problems, impacts, and empowerment in chronic illness compared with healthy controls: a critical review. family caregiver of chronically ill children. J. Public Health Nurse, J. Pediatr. 2007; 150: 221–223. Faculty of Public Health, Mahidol University 2008; 22: 25–39. (In Najafi K, Borhani F, Rabari E, Sabzevari S. The effect of family- Thai.) centered empowerment model on the mothers’ knowledge and attitudes about thalassemia disorder. Iran. J. Pediatr. Hematol. Wacharasin C. Families suffering with HIV/AIDS: What family Oncol. 2011; 1: 98–103. nursing interventions are useful to promote healing? J. Fam. Paterson B. Myth of empowerment in chronic illness. J. Adv. Nurs. Nursing 2010; 16: 302–321. 2001; 34: 574–581. doi:10.1046/j.1365-2648.2001.01786.x. Pibernik-Okanovic M, Prasek M, Poljicanin-Filipovic T, Weatherall DJ. The challenge of thalassemia for the developing Pavlic-Renar I, Metelko Z. Effects of an empowerment-based countries. Ann. N. Y. Acad. Sci. 2005; 1054: 11–17. psychosocial intervention on quality of life and metabolic control in type 2 diabetic patients. Patient Educ. Couns. 2004; 52: Weatherall DJ. The inherited diseases of hemoglobin are an emerg- 193–199. ing global health burden. Blood 2010; 115: 4331–4336. doi:10.1182/ blood-2010-01-251348. Weatherall DJ. The challenge of haemoglobinopathies in resource- poor countries. Br. J. Haematol. 2011; 154: 736–744. Wright LM, Bell JM. Beliefs and Illness: A Model for Healing. Calgary: 4th Floor Press, 2009. Wright LM, Leahey M. Nurses and Families: A Guide to Family Assessment and Intervention (6th edn). Philadelphia, PA: F.A. Davis, 2013. © 2015 Wiley Publishing Asia Pty Ltd.