A Community participation approach to enhance QoL among Mothers with Thalassemic Children in Thailand

Suksiri Prasomsuk Ph.D. Jitrapee Buranasak MA. Siam university, Thailand

ABSTRACT : This study aims to address the lack of specific services in the Thai health system for families who care for children with thalassemia major by using participatory action research to promote thalassemic health education. Fifteen mothers with thalassemic children from Udornthani province, Northeastern Thailand participated in focus groups. We analyzed the resulting qualitative data using reflexive and dialectical critiques through a reiterative process and identified dominant themes. In response to the identified knowledge gaps of these participants, we trained mothers in the cause, transmission, treatment, and prognosis of thalassemia, as well as providing psychosocial support. Maternal scores for knowledge and attitudes increased significantly after 12 months of training, and depression indices decreased following 12 months of psychosocial support. The project activities empowered participants to create and share knowledge, which improved the well-being of mothers caring for children with thalassemia major. This model could be applied in other patient groups. Search Terms: participatory action research, health promotion, thalassemia

Introduction Thalassemia is a genetic disease. It is a major health problem in South East Asia, especially in Northeast Thailand. It has become the most visiable disease about 1 percent of the Thai population are suffered from the disease. Thailand was found to have 600,000 cases of thalassemia. About 40 percents of the population are carriers and these people may have the possibility of transmitting thalassemic disease by giving an abnormal allel through each chromosome of 11th or 16th pair chromosome. The phenotypes mostly express by autosomal pattern of Mendelian law (Fucharoen et al., 1991; Panich et al., 1992, Weatheral et al., 2001). Thalassemia major is characterized by both uncontrollable genetic and biological factors and controllable factors such as therapeutic and lifestyle choices. Moreover, there are also additional factors such as environmental and psychosocial issues (Naidoo, 1994). Literature and empirical findings in western countries indicate that thalassemia major as a chronic illness bring negative impacts on the quality of life to the family with thalassemic children (Caro et al., 2002; Goldbeck et al., 2000; Zahed et al., 2002). Thalassemia poses a heavy burden on unaffected family members, particularly mothers, who struggle to keep up with healthcare needs of their children. This situation is especially true for rural families. However, there are no specific services in the Thai health system to assist such families or mothers. These mothers also have

high levels of anxiety and misconceptions about possible transmission to siblings (Prasomsuk et al., 2005; Prasomsuk et al., 2007; Sapoumtzi-Krepia et al., 2006). Effective health promotion includes attention to family systems as part of the chronic illness model, which requires psychological adjustment among both child and other family members to the disease in question (Holden et al., 1997). Therefore, for the well-being of the entire family, we need to concern ourselves with both physical and psychological health (Bishop, 1994; Sarafino, 1998). In a nurturing family, individuals are able to attain levels of self-efficacy that are beneficial in the maintenance of good health (Rockhill, 1992). One strategy that could help families with thalassemic children is to promote good health practices in the home This is in line with the emergence of the health promotion movement within the past decade, which has led to an awareness of quality of life (QoL) as a broader and more pertinent concept for determining impact of care-giving on family members (Renwick, Brown, & Nagler, 1996). Very few of these studies have involved participants drawn randomly from the general population and fewer still have used community participation methods in formulating and implementing the intervention. Community participation have been recognized as a key elements in successful programs elsewhere in Thailand (Duongsa,2003). The central feature of participatory action research (PAR) is the principle of a group activity and participants involvement in the research process (McTaggart, 1991). The participants are full partners in the research process, while the researcher serves as a facilitator. PAR intends to produce knowledge that can change individuals as well as the culture of the groups, institutions, and societies to which they belong. In Thailand, Hirunchunha (1998) used action research to develop a care model for caregivers of stroke patients at home. The research process was based on a mutual collaboration approach among the researcher, 15 primary caregivers and their families, and the health team. The findings revealed that the suitable care model for caregivers of stroke patients at home consists of caregivers transformation process, promoting care at home, care-related factors, caregivers caring competencies, and caring outcome. Using this approach, this project aimed to help create knowledge that can lead to action regarding better health promotion practices in rural areas. Framework The study was guided by the participatory action research model. PAR is a research method in which a group of people come together to work on a thematic concern through the self-reflective spiral, (a spiral of cycles of planning, acting, observing, reflecting, and then replanning) (McTaggart, 1991; Street, 1997). The most central feature of PAR is the participation of the community/research subjects themselves in the research process (Small, 1995). The participants are full partners in the research process, while the researcher serves as a facilitator of the process. The participatory action research intends to produce knowledge that can change individuals and culture of the groups, institutions, and societies to which they belong. There are viewed as a process for personal empowerment, emancipation, and social transformation, which mean that the political change can be achieved and sustained (Figure 1). It had the following three stages: planning, implementation, and evaluation. The result process was one whereby community groups assumed responsibility and developed the capacity to contribute to their communitys development. Rifkin (1990) stated that community participation is concerned not with advanced medical technology but rather than applying tried and tested health care procedures. These procedures must then be applied to their problems of the poor and

underprivileged living in rural areas of developing countries. It believed that only if those who must need health care participate in its delivery will there be any impact on the diseases afflicting them. Moreover, only community involvement can ensure that culturally acceptable care is available to those who are at present underserved.

Study setting This study site was located in Kumpa-wapee District, Udorn-thani Province, which is 560 kilometers Northeastern Thailand. The participants consisted of 15 mothers of 15 thalassemic children aged 2-14 years. The inclusion criteria included families who had a mother whose age ranged from 25-50 years and had taken care of hemoglobin (Hb) Eb-thalassemia major for at least one year. They were interviewed by in-depth interview, and signed a consent form. All the mothers were the primary caregivers of the children. They also have had the experience in thalassemia management for more than 1 year. Their level of education ranged from elementary level to secondary school level (14 elementary, 1 secondary). The ages of their children when diagnosed ranged from 2 to 10 years. The children were diagnosed by Hb typing as having Hb Eb-thalassemia major problem. At the start of implementing the model, conferences were necessary to identify and discuss problems of their participants.

Protection of human subjects Ethical approval for the study was gained from the the ethics committee of the faculty of Medicine, Khon Kaen University, Thailand, and individual informed consent was gained from participants. They were assured of confidentiality and their right to withdraw from the study at any time. They were informed that they could refuse to answer any questions or withdraw from the participant anytime. All data were treated as group information, with no personal identifiers. Direct quotations from participants were ascribed anonymously. Informed consent was also obtained from participants as researchers planned to use some photos in an article for publication. Study Methods This Participatory Action Reearch (PAR) was conducted between June and December 2006 in one rural community district in Udorn-thani province, northeastern Thailand. It followed a mutual collaborative approach among 1 researcher, 2 health care providers, and 6 community leaders. Because of PAR, a new thalassemic education training program for thalassemic housewives group was designed, implemented, and evaluated. In this PAR, the researchers were concerned with how participants in their communities actually felt, how they approached problems, and the need to solve their own problems. To enable people to learn these skills, participation is necessary at every step, from identifying problems to solving them. The steps in this study were divided in to three stages: planning, implementing, and evaluating. The details of each step are as follows: Step one involved a meeting between the researchers and health care providers to confer over the thalassemic situation in the chosen community and discuss who should be involved in the Thalassemic training program. From the meeting the work party identified community health leaders who would be a key to the successful implementation of the program. Another meeting

was held with twenty community health leaders to discuss who should participate in the program. At the end of the thalassemic education program, there was 6 community health leaders interested in the health education program. During step one, community health leaders analyzed Thalassemic problems in their community and determined strategies to solve these problems. In addition, techniques such as lectures, group discussion, demonstrations, role play, games and reading assignments were utilized to increase both the knowledge ,attitude and psycho-social support for the people who have children with thalassemia. Moreover, community health leaders underwent training to increase their self-confidence to be better able to advise community members. After this, community health leaders were ready to begin step two. During step two, the 6-community health leaders designed the thalassemic education training program. They subsequently conducted thalassemic education by making 15 home visits to thalassemic housewiveshome and advising them regarding thalassemic education. For step three, the outcomes of the thalassemic education training program were evaluated. Questionnaires were used to collect information regarding three distinct areas. The first part collected participantsdemographic characteristics such as age, marital status, education level, occupation level, income and number of children. The second part assessed housewives thalassemia related knowledge. It consisted of 20 items and had dichotomous scale of yes and no. Total scores ranged from 0 to 20. The last part was used to assess the attitude of housewives relating to thalassemia. It consisted of 20 items; each item was worded as a statement, which had to be rated according to agreement of disagreement on a four-point Likert scale format.Each item was summed for a total score ranging from 20 and 80. Five experts reviewed the questionnaire for content validity. Then, it was tested for reliability. The result showed the alpha coefficient of the knowledge, attitude and depress components of the questionnaires were 0.82, 0.78 and 0.76, respectively. The evaluation phase of the project, all participants, including researchers, health care providers, and community health leaders had group discussions and personal reviews to discuss problems. They shared their experiences, and solve any problems during the thalassemia education program for housewives. Data analysis The analysis process involved gaining familiarity with the data during transcription and translation, coding the transcripts, developing conceptual categories by looking for commonality of ideas across transcripts, and interpreting categories. Results Thalassemic training program. The participants emphasized the need for involvement and support from the local health center. The important thing that can provide self-confidence to sufferers is knowledge about their condition and things that they could do to assist themselves. This study found that thalassemic knowledge of these participants was at a moderate level with mean score of 10.8 and a range of maximum and minimum was 14, and 8, respectively. Moreover, some of participants stated that they did not know how to care themselves. The researcher took on the role of a teacher who could provide information for them, while health professionals in a community hospital trained the participants and the other training tool used

was the handbook on self-care for thalassemic patient. However, one participant indicated that she could not read, while some cases indicated that they could not remember the contents. Consequently, participant liked to consult on a one problem at a time basis and that they had the researcher provide this for them with one by one. After, twelve months all of participants were tested on their knowledge again. The findings showed higher level score with a mean average 13.9 and 10.8, respectively. Given the small sample size and that result from the Kolmagorov Smirnov Goodness of fit test showed that scores did not fall within a normal distribution; the Wilcoxon matched pairs signed rank test was to analyze the data. The result shown in Table 1 indicate significant improvements on the measure of knowledge of thalassemia (Z= -3.424, p< 0.05), attitude (Z = -3.046, p<0.05) and depression (Z = -3.329, p<0.05). This finding suggests that the training programme was successful in enhancing their thalassemic knowledge.

Measure Knowledge Attitude Depression

Pre-test Mean 10.8 31.7 41.6 SD 1.37 4.11 9.40

Post-test Mean 13.9 38.4 35.5 SD 1.19 3.04 9.64

Z-value -3.424 -3.046 -3.329

p-value 0.001 0.002 0.001

Learning process of the participants This study, the group leader had an important role to empower the group members and organized activities, but the work would be slow and lacking confidence. The group members tried to learn together and shared their ideas, their obstacles and problems they had faced in their lives. The participatory learning process was provided new information to them about the operation and outcomes of their efforts. There were exchanges of knowledge within the group on how to build up a profession. This activity was an important mission that entered the communitys professional development. Because of our findings, the participating program had also adopted some changes after thalassemic housewife group setting for 1 year for prepare helping other families to initiate thalassemic knowledge dissemination to their community. As for exchanges and sharing of the knowledge on thalassemia, the members would like to invite a thalassemic person that succeeded in life, at present he is the principal of a school, he lives in Pakoo village, to come and talk to the group. A group member guided other members on this matter as follows: I would like to put up a board on information, problems, cause for thalassemic people, and information on some professions. Some of our members may not know much about thalassemia, the problem it causes, the cause of it and how to treat it. We have not given much information on it. We have just learned about it while we were in the group. This was a new program for further research having been identified and the thalassemic group leader planned to submitt a proposal to the sub-district committee to carry out these

program. Thus, a short term outcome of this study had been to improve fundamental practices in community economic development to enhance their lives. Reflection on the process In the thalassemic housewive group meeting, giving information had been almost the end of the process. Participants were asked or even ordered to do what had already been decided. In each meeting, information was provided to participants for the further discussion and the sharing of their perspectives toward the issues before their decision making. It was more informal and relaxed to meet in a small group, for example, when there was a discussion among the core team members. In these circumstances, participants felt more comfortable to speak out and shared their perspectives. However, often meetings among a large number of participants were also needed to seek a consensus. A meeting allowed the members to practice speaking, presentation, and facilitative skill. It was not easy to encourage the members to practice their skills. They were encouraged to practice by answering the researchers questions about their perspective. Leading questions were sometime useful. At the beginning participants might only smiled and said yes or no. For the core team, discussing issues before presenting to a large group provided them more confidence. Expressing their opinions about what they had experienced became mor easy for them. For the researcher, facilitation was often difficult to practice. Often, researcher found it difficult to manage the discussion of the issues and conclusion in the limited time available to them. The time limitation put pressure on the researcher because it had to confirm that everyone participated in the process of decision making. The researcher also found that, as an educated women, the core team members, the klum maebaan thalassemia committee and other participants placed high expectations on the researcher. It was not easy to change the beliefs that nobody is perfect. The group members tended to want to listen to the researchers opinion before they made decisions. The researcher always gave information to the members, because of lack of knowledge, they needed to be in the group to obtain close to a perfect performance. However, participants continued to expect the researcher to do better, to know more, and to make no mistake. There were many factors ,which being contributed to the development of the group members skills, capacities and confidences. These factors included access to useful and correct information, a chance to practice speaking at meetings and the guidance and support of a facilitator and other members of the core team. It would be true to say that their confidence had developed through their collaboration in the processes of planning acting, observing, reflecting and re-planning. Since they were involved in this research at the outset, they consciously observed what happened, what was going on, and what was the intended activity. As this study was the first involvement in PAR, the researcher expected to contribute much pressure in bringing improvement. This pressure in turn contributed to a concentration on the context of sustainable change and improvement of the community rather than just doing a research. It took quite some time for the participants, particularly the core team members, to realize that they could not expect everything from the others and most importantly, they should strongly by themselves.

Later they agreed to practice facilitating discussions and the meetings. As there was the group of the klum maebaan thalassemia, the circumstances forced her to learn and practice facilitation. Through a long process of learning and reflecting from mistakes, and being criticized and supported by the community committee, health care providers later could facilitate the klum maebaan thalassemia discussion more effectively. The researcher believed that, if participants had a change to learn and practice by themselves, they later could come to depend on themselves instead of outsiders. Discussion and implication Thalassemic housewife group was gradually formed and accepted by the community. It needed authorities to organize the group activities. Motivating climate was the key for involving thalassemic families and their neighbor in community to participate in the group.The benefit and willings of participation led the members to change their opinions on thalassemia that affected their families and children. Thalassemic prevention and control, occupational development, and dissemination of thalassemic knowledge to young students were effectively involved by thalassemic housewive group and the community leading to the understanding about thalassemic knowledge and quality of life of the thalassemic group in their community. As a result, confidence of the thalassemic housewive members in collecting and collaborating to participate in any activity. According to the suggestion by Meissen GJ (1994), family self-help group, which developed through all levels of community helped to create a sense of community. Relationship and sense of shared purpose were critical elements in sustaining change efforts of human resources. The predominant stuctures of thalassemic housewive group development was decentralized reponsibility and participation, which was considered by the participants. Family members, family nurses, primary health care workers, community committee and local community organizations worked toward roles and goal, aimed to enhance their life quality of these families. The decentralized responsibilities of stakeholders at all levels were primarily to their daily lives because they had not much time to particularly concern group development. In this study, thalassemic housewive group development carried out about one year. The first two months were used to study the thalassemic family context. Periods for self-help group development took approximately six months. Output, impact, and outcome evaluations carried out for three months. The group activities could not be actively. It was gradually developed and waited for the appropriate time until it was accepted by group members as partnerships and mutually responding among stakeholders. According to the PAR (Street, 1997), it was the process of adult learning and community development approach, involving facilitating and enabling factors in community participation. Stakeholders became consciously involved in their own behaviors through a partnership, accepted greater responsibility for well being, and increased the level of sustaining interest and enthusiasm among them. Factors determining the success of the model Several important factors, indicators, and dimentions of thalassemic housewive group were used to determine the success of their activities in this study. 1. Member of thalassemic housewive members

The quality of group members was an indicator of group success. The more members the group had, the more numbers of participants were emerged. Although some of those refused or ignored to help others at the beginning of group setting, the group process gradually socialized them to adjust their behaviors or discarded them from the group. Additionally, group members who were role model could attract others to increasingly join the meeting. Capabilities, skills, knowledge, thought, and power of members were the qualitative indicator of thalassemic housewife group development. These qualities affected on experience learning of members. The members who had high level of capabilities, skills, knowledge, thought, and power often had more confidences to work and advocate other to join them, lead others to develop their capabilities. 2. Quantity and quality of group activities The numbers of activities, especially the successful and the progressive activities, affected the motivation of group members. They aided them to work toward the group goal. Activities of group members progressed in the same direction. Group activities were determined task of participants in the individual level. The new activities created by group members indicated their potential, and resource, place, and time management. At the beginning of meetings, group activities were initiated by the researcher and health care sectors. The activities in the last period were preceded by health care providers, family members, and community committee. In addition, some activities organized by family members during crisis were the indicators of group maintenance. For example, the resources allocated by local authorities for developing to maintain the group was sufficient, group members agreed to sacrifice their budget and sought for the help from other sectors. 3. Networks of the self-help group It was noticeable that family self-help group in their community had the dimensions of self-reliance and mutual help among networks. Self-reliance dimensions from self-help members who mutually practiced self-help activities to achieve their goal. The participants of members were group networks who predominantely help community to have the capability in collaborating, negotiating, and accessing external resources. Also, the numbers of sectors participated with group indicated the quantity of networks and the charactors of networks pointed to the quality of family self-help group. 4. Status of thalassemic housewive group in the community This indicator was assessed from the external reference. It was different from the three indicators mentioned before which assessed from group members in community. After family self-help group had more members, it was gradually participated, negotiated, and ran by its members. These members were accepted by stakeholders in the capabilities of group collection, negotiation, resource mobilization, and community development. Family self-help group in community gradually developed their own power and freedom in order to determine the direction of development. They shifted or enhanced their capabilities on the control of the uncontrollable capability, influencing people to participate in the self-help activities to the capabilities of prevention of thalassemia in the community. Consistent with the recommendation by Wattana C. (1997), the maintaining of group activities depended on the capability in modifying its status to have the effective function in responding to community need under the changed environment.

In summary, the most important element in the thalassemic housewive group development was the increased consciousness of occupational promotion and thalassemic prevention. As a result, the family and the commuity had increased their competencies in managing these activities, their collaboration with local organizations in planning, implementing, and evaluating based on the community need, learned by participatory research. Conclusion This study showed changes among the participants through PAR. The finding indicate the relationship between empowerment and health, namely, that self-understanding and selfconfidence empower individuals and communities, and that empower in turn enhances health promotion. PAR would appear to be a valuable approach in facilitatating this outcome, striving to balance the goals and objectives of research with action. Implication for health personal practice It was found that the principles of health promotion for these participants in this study which could be concluded and proposed as suggestions for health promotion practice to overall health services. Policy level. Every health care center should formulate thalassemic policy concerning empower program for thalassemic patients and thalassemic families. The management of psycho-social problem in thalassemic families should be included in the guideline of thalassemic impact management. Action level. Workshop on thalassemic training should be held and revised regularly for medical health team workers, especially health educators, nurses in order to provide appropriate techniques to the thalassemic children and their families. Promotion of relation participation learning in health promotion of thalassemic families. It was found from this study that participation in group setting among thalassemic families would yield positive effects on these participants. They gained more appropriate thalassemic knowledge, skills, attitudes toward preventing thalassemic occurring in their community. At the same time, they should gained the skills of participatory learning in order to provide adequate and continuous social support each other leading to enhance their quality of life in the near future. Recommentation for further study The further study such as design and development of health promotion model for thalassemic families would be conducted in different area of the province. The exploration of quality of life among families with children thalassemia should be designed to generalization to other area. Limitation of this study The study was undertaken in one specific area with a small sample size, thus the model might only be appropriate for this group. The time for implementing the programme might be shorten to evaluate their quality of life among thalassemic families. It should be taken a long duration at least 3 years to follow up their activities. Resource planning in this research was limited such as financial support, human resource should be available reserved source available in case of urgent problem happenning. Limitations of the potential for this model to be replicated

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