Participatory action research: Promoting partnership between a social work team and mothers of hemophiliac children

Abstract

This article focuses on a participatory action research project as a process for improving social work practice and empowering mothers with hemophiliac children. Four stages of the action research are presented in this study. The research played a critical consciousness-raising and capacity-building role facilitating the mothers’ transformation from passive victims to active subjects. In addition, participatory action research contributed to identifying the emerging needs of families with hemophiliac children and improving the quality of social work services. We concluded that participatory action research is an effective way to empower disadvantaged people. This research methodology also facilitates social work practice in a non-traditional field. It is argued that participatory action research as a way of empowering the vulnerable also entails risks as attempts to redistribute power may earn further stigmatization and discrimination, especially from those whose existing power is challenged. Social work, as a profession committed to a more just and equal society, should be wary of this further stigmatization and insist on principles of social justice, human rights, collective responsibility, and respect for diversity. The article concludes by examining the limitations of employing participatory action research and makes recommendations for future programs.

Keywords

Participatory action research social work mothers with hemophiliac children self-help organization

Introduction

Rare diseases are an important medical and social issue (Schieppati, Henter, Daina, & Aperia, 2008). However, little research has examined their social aspects. In Europe, a disease or disorder is defined as rare when it affects fewer than 1 in 2000 citizens (EURORIDS, 2019) and in USA, when it affects fewer than 200,000 at any given time (Rare Diseases Day, 2019). There is no official definition of rare diseases in mainland China at present (Li & Lu, 2014). Hemophilia is an X-chromosome linked and recessive bleeding disorder in which a decreased level of clotting factor activity in the blood may lead to spontaneous hemorrhages in muscles and joints. This disease is quite rare. Worldwide about 1 in 10,000 people are born with it (World Federation of Hemophilia, 2019). Recurrent bleeding into joints results in progressive damage and long-term arthropathy which greatly reduces patients’ physical health-related quality of life.

Besides medical issues like bleeding (Carlos Rodriguez-Merchan, 2016; Warren, Blades, Smith, Wang, & Manco-Johnson, 2016), treatment risks, incorrect diagnosis (Rodgers & Duncan, 2017), related social problems, including the interruption of schooling and negative body image (Mao, Ye, & Chwo, 2005), socioeconomic burdens (D'Angiolella et al., 2018), social or behavioral difficulties (Trzepacz, Vannatta, Davies, Stehbens, & Noll, 2003), and employment difficulties (Forsyth et al., 2015) have all been discussed in the literature. Hemophilia also poses considerable problems for patients’ families such as financial burdens (von Mackensen et al., 2019), psychosocial stress (Cassis, Querol, Forsyth, Iorio, & HERO International Advisory Board, 2012), and family relationship tensions (Bordeaux, 2003). However, mothers are reported to experience more stress due to their role as primary caregivers and, for some, as hemophiliac gene carriers in transmitting the disease to their children (Kang, Kim, Jeong, Kim, & Yoo, 2012; Lee, Mao, Chen, & Shen, 2000; Myrin‐Westesson, Baghaei, & Friberg, 2013; Saviolo-Negrin et al., 1999). The few studies on mothers with hemophiliac children mainly focus on individual and/or familial endeavors in response to the rare diseases. Although patients’ organizations have become a major feature of the medical landscape because of the promotion of patients’ autonomy, institutional reforms of the healthcare system that improve user participation and acknowledgement of patients’ claims for their specific expertise (Huyard, 2009), few studies discuss self-help organizations established by mothers with hemophiliac children. A rare Korean study on the effect of a self-help program claims that it enables these mothers to improve knowledge, child care self-efficacy, their own quality of lives, and reduce depression and parenting stress (Kang et al., 2012).

Few studies have attempted to explore social workers’ roles in respect of rare diseases. For example, Taylor (2004) confirms that the crucial roles of social work in hemophilia care include clinical practice, hepatitis C virus management, family decision on treatment, advocacy, and policy and program development. To these, Allen and Kachalsky (2010) add other roles like ongoing and consistent education, problem-solving and emotional support. Although these studies have identified the distinctive functions of social work in hemophilia, the roles of social work in chronic illness and rare disease are still not clearly defined (Findley, 2014). A few studies based on clinical practice provide valuable insights for social workers searching for an identity in this field. For example, Fu (2015) provided social group work for parents of children with Duchenne muscular dystrophy and articulated that group work can provide emotional and information support instead of instrumental support (i.e. material and social support) to these parents.

In a systematic review of methodologies employed in studies on psychosocial aspects of patients with hemophilia undertaken between 1997 and 2011, Cassis et al. (2012) reported that the majority were questionnaire-based that collected data during hospital treatment. That is, conventional academic studies were conducted on the researched by the researchers, rather than with them (Bradbury & Reason, 2003). In contrast, the current study is funded by the Hong Kong Keswick Foundation that incorporated a participatory action research approach (hereafter PAR) that sought to explore the following research questions: (1) how can PAR facilitate the social work team’s efforts to improve their practice in a non-traditional and challenging field in health care? (2) how do mothers with hemophiliac children transform their roles from that of passive victim to active subject via PAR?, and (3) what are the limitations when applying PAR to facilitate empowerment in social work practice in the field of rare diseases?

Background to the project

Hemophilia patients and their families are a vulnerable group in China. Besides inadequate medical treatment, they tend to have low self-esteem and a weak social network. The initial project’s aim¹ was to establish multi-disciplinary team cooperation and train social work students to provide services for patients with rare diseases and their families. However, this aim was revised in practice as guided by PAR. The original impetus for the project derived from the author’s personal care for people with disabilities. The leader of W² Hemophilia Patients Association (hereafter W Association), who was disabled due to the long-term effects of the condition, introduced himself to the author following a lecture, seeking an opportunity for cooperation. W Association had integrated a group of stakeholders including, volunteers, psychologists, doctors, and pharmacologists. Its primary focus is to ensure access to clotting factor, which is infused intravenously and helps to prevent bleeding (Nikisha & Menezes, 2014).

Research methodology

PAR as a research method

This study employed PAR as the research method in order to develop practical, theoretical and methodological contributions by undertaking research with, rather than on patients with hemophilia and their families (Bradbury & Reason, 2003). PAR focuses on changing practitioners’ specific practices (Kemmis & McTaggart, 2007), which can contribute to the exploration of an unfamiliar practice field. In addition, PAR focuses on subject participation and aims at generating ‘locally-relevant’ knowledge capable of addressing real-life issues (Baldwin, 2012). Hughes (2008) summarizes three modes of action research in healthcare among a rich diversity of approaches: (1) technical action research or action experiments; (2) action research in organizations or workplaces, and (3) emancipatory action research or community-based participatory research. The differences between these three modes lie in the underlying assumptions and worldviews of the researchers and participants that lead to variations in the ways projects are designed and who makes the decisions (Grundy, 1982). This study was emancipatory action research that aimed to raise consciousness, encourage participation, and improve the capacity of disadvantaged individuals. PAR is a living, emergent process that cannot be pre-determined but changes and develops as those engaged in it deepen their understanding of the issues to be addressed and cultivate their capacity as co-inquirers, both individually and collectively (Reason & Bradbury, 2008). It was eminently suitable for this particular study that presented a number of uncertain issues in an unfamiliar practice area. The study started from a general idea of exploring the possibility of social work practice for hemophiliac patients and their families and kept searching for specific research questions which could further guide practice in the process of action. The social work team includes the research team in this study, with the former mainly takes responsibility for social work service and the latter focuses more on how to improve social work service through the research.

Data collection and analysis

The research team comprised six mothers with hemophiliac children, 12 social work students (four with undergraduate qualifications and eight with master’s level), 1 full time social worker, and 1 PAR facilitator.³ Mothers participated in the research in a variety of roles ranging from passivity, through interactivity to mobilization (Graça, Gonçalves, & Martins, 2018). Social work students who were interested in PAR were encouraged to join the research team. The overlapping roles as social workers and researchers trigger some identity issues for us as PAR novices. However, it also provided an effective learning process for understanding PAR as a methodology to bridge the gap between theory and practice, and between social workers and the vulnerable. The methods of collecting data varied according to the requirements of different stages, including informal interviews, participatory observation, in-depth interviews, life-story interviews, and focus groups.

Data were recorded in ways in which participants feel comfortable and familiar. For mothers who felt more comfortable, and for whom it was convenient and less time-consuming, oral data were recorded by audio equipment with verbally informed consent and transcribed later for further analysis. Other participants were encouraged to write critical reflections in field diaries. Data were analyzed thematically using visualized and simple methods like jigsaws, problem trees and mind mapping. We did not use software to analyze the data since we intended to demystify the research process, enabling the mothers to understand data analysis and encourage their participation. We generated key themes from the data and developed the service in response to these themes. In this way, the mothers were involved in matters that concerned them.

It was impossible to secure formal ethical approval for this study since formal systems in social work for obtaining such approval remain rudimentary in mainland China. However, in addition to strictly adhering to general research ethics principles, such as obtaining verbally informed consent and later confirming this with text messages from all research participants and guaranteeing their free choice of participating or not, we remained reflective and mindful of the power dynamics throughout the research process. We were fully aware that the issues and people associated with social work services are often loaded with social and political implications, systemic power imbalances, and stigmatized statuses (Shaw & Holland, 2014). Thus, research on social work practice is consequential and ethically charged (Sobočan, Bertotti, & Strom-Gottfried, 2018). We were sensitive to ethical imperatives throughout the research process.

This study comprised four stages, including the five steps of planning, action, observation, reflection, and replanning. However, the recursive relationship between these five steps makes it difficult to provide clear-cut distinctions between them.

Stage 1: Building rapport and identifying the co-inquiry participants

The social work team accessed the research arena via a gatekeeper (the leader of W Association) and gained opportunities to become acquainted with hemophiliac patients and their families. Participation is affected by the quality of relationships (Reason & Bradbury, 2001). It was time-consuming because social work, as a profession in mainland China, still lacks public awareness (Li, Han, & Huang, 2011). These families and other stakeholders could not understand what social work was and how it could help them. The social work team was therefore confined to a marginalized status in the so-called multi-disciplinary team where doctors are interested in medical treatment, W association focused on financial support, and psychologists provided low-paid counseling.⁴ When the social work team became more familiar with these families as the result of frequent interactions, they were defined as, in the words of one father, a group of warm-hearted people. Although dis-satisfied with this identification, the social work students were at least accepted by these families and began to build rapport with them.

The social work team used conventional academic methods ways of questionnaires and informal interviews to assess the needs of hemophiliac patients and their families. Indeed, employing quantitative research methods (mainly questionnaires) to justify its professionalization and providing a way of distinguishing itself from other stakeholders reflected the social work team’s struggle to survive in the healthcare field. Unfortunately, this attempt failed when the results revealed that the most urgent issues for which the parents needed help were obtaining clotting factor and financial support, both of which were beyond the social workers’ remit. PAR thus contributed to re-identifying problems with which the social work team could assist and identifying potential co-participants.

Our observations revealed that the mothers of hemophiliac children were the most active of all the stakeholders. This probably resided in their roles as main caregiver and their high motivation to participate in issues relevant to changing their life. Three-months’ participatory observation revealed that the main strategy of W Association to obtain public donations was telling tragic stories of raising hemophiliac children. For example, a mother with two hemophiliac sons frequently narrated her story in public and she usually choked with sobs during her story-telling. However, social work, as a profession that seeks to empower people, confronted the value conflict inherent in this disempowerment of the disadvantaged. A Masters student could not control her anger after she had heard the same story repeatedly:

The first time I was touched by her story. The second time I could accept it as a way of getting resources. However, the third time when I heard it, I felt that it was more like a sort of performance. (M1)

PAR opens communicative space between participants as a process of mutual inquiry aiming to reach intersubjective agreement, mutual understanding of a situation and unforced consensus about what to do (Kemmis & McTaggart, 2007). In order to facilitate better understanding between hemophiliac mothers and the social work team, an informal discussion with 22 people, consisting of the supervisor, the social worker, 10 mothers and 10 social work students, participated in the discussion to achieve an empathic understanding. The mother mentioned above was invited to express her feelings about repeatedly recounting her story. She responded: “I am telling my own story. It is a true story. If my story can help to change the life situation of this group, I am willing to repeat my story any time” (MH3).

On the basis of this mother’s further explanation and face-to-face communication with other mothers, the Masters student mentioned earlier (M1) reinterpreted her understanding of the tragic narrative as a vulnerable group’s limited choices with weak social networks and fragile social support. It is obvious that the roles of the researchers and the researched, social work students and clients, interchanged through further communication and thus there was a mutual development of knowledge and learning to understand people’s problems (Swantz, 2008). During the focus group discussions, the social work team also recognized that their lack of maternal experience and of raising a child with a rare disease were barriers to empathizing with these families. Therefore, how to understand these mothers became a precondition for a qualified social work service. Collecting life stories of families with hemophiliac children proved an effective and quick way for the students to achieve better empathic understanding. In addition, several mothers expressed their feelings of embarrassment at being presented in public as pitiful and dependent. They had already realized that they were constructed as victims due to their frequent tragic narratives. These mothers articulated that their resilience in the face of a rare disease should also be integrated in their stories.

As a result, collecting the life stories of families with a hemophiliac member was conducted with three purposes: (1) cultivating empathetic understanding between social work students and mothers with hemophiliac children; (2) continuously assessing the needs of these families; and (3) identifying resilience embodied in their life stories, which can contribute to reconstructing their stories of misery. Fifteen students and two mothers participated in the activity and visited 21 families between 2014 and 2016. A monthly group discussion was arranged to discuss and analyze themes emerging from these stories. This process was quite time-consuming due to geographical remoteness, children’s bleeding episodes, and mothers’ busy work schedules. With the development of life-story interviews, the lives of mothers with hemophiliac children became a vivid and concrete image full of hardship, tears and even fear, rather than an abstract idea for the social work students. During feedback, one student said that she finally empathized with these mothers:

What she described to me was completely out of my imagination and experience in daily life. Can you imagine extracting teeth will become a disaster, even like a horrible movie for a hemophiliac child? Her son used all the paper tissue, sheets and anything he can access to block his nose bleeding. In the end, he felt exhausted and just used a basin to let the blood flow. I started to understand their tears in public, not only for fighting for charitable support, but also for expressing their internal pains. (B1)

Another mother confirmed that what the student heard was a very common life scene for them. They usually suffered panic unexpectedly due to children’s bleeding, accidently or spontaneously. After collecting 15 life stories over a six-month period, another focus group was arranged to discuss how to transform the narrative from an individual to a collective level and ensuring a positive perspective to these stories. Five mothers and 10 students participated in the discussion and decided to write the following poem, A Rare Mother, in an attempt to change the stigmatized image.

A rare mother⁵

Do you remember

When you were a child

You asked

“Mum, can I want to go out for playing?”

I have to told you tenderly,

“No, my dear child.”

You asked, “Why?”

I responded you in this way,

“Because you are a rare but fragile ‘glass child’.”

Since then

You knew that you were a glass child

Although you might not know the meaning

You understood what to do and what not to do

You grow up with unbearable pains due to hemophilia

I usually wake up at night and found you were always awake

I am not sure whether you cannot fall asleep or you just wake up

At this moment

You would ask many simple or strange questions

I know it clearly

What you want is not the answers, but to transfer your attention from the pain

Hemophilia tortures you, however, what you can only do is to suffer

What I can do is to stroke your thin and weak body

What I want to do is to comfort your fragile heart

and suffer the pain instead of you

however

I never have such a chance

Once I complained the unfairness of the fate

Why did the rare disease fall down on you

Why did the misfortune occur to my family

Why did not others provide assistance

I felt extremely lonely and helpless

Who can come to help me

Who can bring hope for me

Who can comfort me

Day by day

I begin to understand

When a child with rare disease was born

a strong mother is destined made

Now

I will confront the hardship

and embrace the light of the life.

The poem was read to families with hemophiliac children in the study and all participants agreed it presented a collective narrative of resilient mothers caring for hemophiliac children. We were so excited when we had our first opportunity to present this poem at a provincial charity donation exhibition. However, the result frustrated us. Little public knowledge of hemophilia resulted in zero donations. One mother’s empathy of the public’s attitudes towards them partially explains this:

Our need for clotting factor seems like a bottomless pit. The public will not donate because there is no immediate change. Additionally, hemophilia is an invisible disease that cannot be identified at first sight. Nobody can imagine how terrible it is when our children have bleeding episodes. Thus few people except ourselves can understand how painful the life of nurturing a hemophiliac child is. (MH5)

This failure made us transfer the focus to other thematic issues generated through the life stories and interview scripts which identified more psychosocial needs of these families. These included domestic violence, financial burdens, marital conflict, peer exclusion at school, poor school performance due to frequent bleeding, the ethical dilemma of informing or not informing others of the disease and a lack of appropriate information on medical treatment and relevant social policies. We worked together to categorize and prioritize them. As a result, the mothers confirmed that their greatest priority was how to provide day-to-day care of hemophiliac children. They suggested the social work team could organize an informal and sustainable platform enabling them to meet regularly and share their experiences of nurturing hemophiliac children. The first meeting was thus designed according to this suggestion on how to care for hemophiliac children in different life stages.

Reflection during this first stage focused more on PAR as a methodology to facilitate better social work practice. At the very beginning of the project conventional academic research methods used as tools to assess clients’ needs shaped a subject-object relationship between professionals and their clients. It prevented clients’ participation and limited the possibility of cultivating their agency. PAR facilitated social work practice and encouraged voices from all participants. It allowed social work students to confront real difficulties in their practice, like barriers to empathy and their inability to meet patients’ financial and medical needs. As for the mothers, participation in the research process allowed them to experience the possibility of a subject–subject relationship with professionals. Thus, they became more involved in decision-making regarding issues relevant to them, in contrast to their previous experiences.

Stage 2: Changing the asymmetric relationships and building mutual support via gatherings

Caregivers have to develop solutions to the daily problems they face because generally they are unable to get appropriate help in an emergency. At the first meeting, mothers shared their rich experiences of taking care of hemophiliac children, which differed from professional knowledge in their focus on preventive strategies and effective caring. By effective care we mean strategies that can help to reduce accidental bleeding and thus help to reduce families’ financial and emotional stress. For example, one mother suggested that toddlers could wear a helmet to avoid brain hemorrhage.⁶ This is non-professional but valuable knowledge. Some mothers had tried these suggestions and gave very positive feedback. Indeed, patients and their caregivers who have developed solutions to address some of their disease-related problems can contribute to the stock of knowledge about their disease and ways to cope with them (Oliveira, Zejnilovic, Canhão, & von Hippel, 2015). Knowledge is power (Gaventa & Cornwall, 2008). When these mothers felt their own knowledge could also help with prevention, appropriate treatment, immediate assistance with bleeding and less bleeding frequency, they felt more confident, capable, and independent. However, some challenges remained, like how to explain to their children about hemophilia. As one mother told us:

He kept asking me why he had hemophilia and other children had not. Why he is so unlucky. To comfort him, I just told him it is my fault.⁷ However, I found it was not a good explanation when once he bled seriously, he complained that I gave him the disease. This made me astonished and desperate. (MH9)

In order to resolve this problem, the research team conducted informal interviews at sessions and tried to identify the numerous questions initiated by hemophiliac children and how parents responded to these children. Then we discussed with the social work team and eight families on how to develop more effective ways to inform these children about their disease. Finally, a glove puppet show was created to explain hemophilia and how to protect themselves (Figures 1 and 2).

Figure 1.

A glove puppet show of hemophilia.

Figure 2.

What are clotting factors?

During each session, we collected data via participatory observation and after each session collected feedback through informal interviews. Then the social work team could decide the topic for the next session. At this stage, some mothers began to transform from passive to increasingly active roles and showed great interest in helping with the sessions. Even those who were not active were willing to attend sessions because the information provided by other families was pragmatic and useful. Four mothers took partial leadership roles, with two mainly taking responsibility for finding external support for the meetings and the other two participated more in designing each activity. Their knowledge and experience shaped their sense of identity and agency (Gaventa & Cornwall, 2008). Activities in each session needed to be carefully designed because of the risk of serious accident to hemophiliac children. Based on their accumulated experience in nurturing children, these mothers made an invaluable contribution to the social work service. For example, how to cover sharp corners to prevent bumping and avoiding any games that could possibly cause joint bleeding. Mothers’ active participation helped the social work team to gain extensive experience in developing a professional service to hemophilic children. When the social work students integrated their professional knowledge and practical wisdom, they were more confident in practice and also compared themselves favorably to the first stage of the project.

Families with hemophiliac children are not a heterogenous group. Rather, they differ according to educational background, economic circumstances, social class and other influential factors, all of which impact their participation. Attendance at each session was not stable. Some mothers had to take three part-time jobs to cover the family’s expenses. Therefore, attending sessions cost them time and money. For some families who were afraid of being labeled by a rare disease, choosing not to attend sessions could help with their self-identity as ‘normal’; it was an effective strategy for a “spoiled identity” because hemophilia is a “discreditable identity” which can be managed (Goffman, 2009).

The main reflection during this stage arose from a father’s criticism. He drove his wife and children to attend the sessions, although he rarely participated himself as he perceived them as being designed only for mothers. In response we set up a focus group, comprising 19 people (five mothers, two fathers, 10 social work students, the social worker, and the supervisor) that shed light on this gender-blind problem. Our critical reflection highlighted two possible reasons for this. First was over-empathy between the social work students (seven of whom were female) and mothers whose husbands left responsibility for dealing with issues relating to their child’s hemophilia to them. During the collection of the mothers’ life stories, unconscious prejudice against fathers had resulted in their invisibility in the meetings. The second reason related to gendered differences in parenting. Mothers were more interested in nurturing and caring issues while fathers were more concerned with medical treatment and financial issues.

Our reflection contributed to improved understanding of the gender aspects of parenting a child with a rare disease. We searched current literature on fathers of children with a rare disease (all in English), translated these into Chinese and then discussed these within the social work team. Two fathers were encouraged to join in the research team and we determined to develop a more family-focused service including the invisible family members (mainly fathers and healthy siblings). The parents with hemophiliac children in the research team suggested focusing more on issues like effective communication between couples, domestic violence, and family outings. In addition, participants also articulated the need to establish a self-help organization because they feared for the sustainability of services when the project ended.

Stage 3: Capacity building and establishing a self-help organization

The number of families participating in the meetings became unstable and even declined during this stage, which frustrated the social work team who had carefully designed the sessions. The research team ran a focus group and in-depth interviews with 16 families focusing on difficulties in participation. The focus group discussion was guided by a mother and the in-depth interviews were conducted mainly by social work students. Three main reasons were generated from the discussion and interview transcripts: (1) a WeChat⁸ group formed by the social work team enabled families to communicate with each other, providing mutual support and a means of obtaining information; (2) attending sessions costs families time and money, and even bleeding risk, especially for those from rural areas who need to travel; and (3) some problems cannot be solved with meetings, like social exclusion and financial burden. The research team used the problem tree tool to visualize these barriers to participation and discussed potential solutions with the families and the social work team. Two strategies were developed in an attempt to remove these barriers: (1) exploring a small, accessible, convenient and zero-cost livelihood project in which all families can join so as to earn some money to improve their economic situation; and (2) establishing a self-help organization to improve public awareness of hemophilia.

Four families explored the potential for a small livelihood project. They proposed establishing a social enterprise to run a supermarket employing mothers with hemophiliac children who could have a more flexible working schedule and take time off if their children bleed. Although this plan failed due to the high cost of renting a shop after a three-month period, it was still a good attempt. At present, a factory supports these families by providing the raw materials for headdress flowers and collects the products weekly. This project allows mothers to arrange their time more flexibly. Some fathers and hemophilia patients also participated in this livelihood project.

The motivation to establish a self-help organization came not only from social advocacy but also from participants’ concern for service sustainability. Mothers expressed their difficulties in registering a new self-help organization, access to information about social organizations, a lack of ability in providing a service and their relationship with W Association. A subgroup of the research team responsible for registration was formed with two mothers, five social work students, and the supervisor. Our task was to visit all social organization centers in each district in the city, consult social policies, and gathered relevant information. The subgroup generated a clear procedure to register a new social organization and initiated this procedure. However, we were faced with a difficulty relating to the required beneficiary population. One family with hemophilia and two with another rare disease in a single district⁹ was insufficient to qualify as a social organization due to the cost of social resources. Although repeated visits and explanation of the social issues confronted by families with hemophiliac patients contributed to the eventual registration of the self-help organization, this process proved that social advocacy on rare diseases is critical and necessary. Through the endeavor of these organizations, their voice should be collectively heard and the related social policies also need to change. To facilitate mothers taking leading roles, the project’s service budget was reduced and the training payment increased to fund five leaders (four mothers and one hemophilic patient). Five participants attended lectures and workshops to improve their knowledge of social organizations and psychology. During this stage, the social work team also changed its role as the main service provider to one of supporter, with which the mothers agreed because they needed the opportunity to practice their new role before the end of the project.

How to solve the mutual relationship between the newly established social organization led by mothers with hemophiliac children and W Association led by hemophiliac patients and other stakeholders, which were the only patients’ associations in the province, became our crucial concern. Mothers were questioned on their right to establish a patients’ organization due to their “irrelevance to patients”.¹⁰ Indeed, the essential differences between these two organizations reside in their service focus (medical treatment vs. psychosocial needs and social advocacy), the composition of the leaders (stakeholders vs. patients’ families), and the mission of the organizations (promoting the reimbursement ratio of clotting factor vs. mutual support among patients’ families). PAR is a social process in which all participants try to reduce the extent to which they experience these interactions as irrational, unproductive (inefficient), unjust, and/or unsatisfying (alienating; Kemmis & McTaggart, 2007). We embraced the standpoint that the diversity of various patients’ organizations can satisfy multiple needs of patients and their families. The process of tedious negotiation, conflicts, mutual attacks and being stigmatized also reminded us that empowerment was not peaceful. It means power redistribution which contains a higher possibility of conflicts. Notably, the mothers’ bravery to confront verbal attacks, resilience against misunderstanding and their relentless insistence on registering their own organization impressed the social work team. During this process, the social work team recognized that the mission of social work to promote social change and development, social cohesion, and the empowerment and liberation of people, made it a profession. This reflection echoed with one Masters student’s diary entry:

Empowerment for me was merely an abstract concept before I participated in this research project. It is so different when you talk about it and take action with it. I could never have imagined what happened after these mothers participated in the project and become so active and brave. I also recognize empowerment cannot be harmonious. I think it is right to support these mothers because as the main caregivers and mothers of hemophiliac children, they are relevant stakeholders. They have rights to decide all the issues relevant to their children. Social work, aiming at empowering the oppressed, cannot claim to be neutral. No, you cannot. This project helped me to understand Adams’s warning to social workers shared in the reading group that it is possible for professionals to claim they are working within an empowerment framework whilst disempowering clients by weakening the essence of empowerment. (M3)

Stage 4: Providing independent service and improving public awareness

The self-help organization led by mothers with hemophiliac children was founded in February 2018. M center obtained financial support from the local government to provide a service for hemophiliac patients and families in May 2018. The leaders began to organize activities for each meeting with minimal assistance from the social work team and learned how to run a focus group to encourage the participation of more families. Using brainstorming, two groups expressed their own needs which can be categorized into three types: (1) medical needs—sufficient supply of clotting factor, knowledge about nursing care, family treatment, and the latest international information on hemophilia; (2) psychological needs—psychological counseling for hemophiliac children at different life stages and strategies to reduce pressure; (3) social needs—carer training and guidance for hemophiliac youth, improving relevant social policies, providing a platform for families for communication, interaction with social organizations from other provinces and social respect.

Among these needs, we can also identify a plea for transforming knowledge and power. Power and knowledge are inextricably intertwined. Earlier understandings of power in participatory research tended to dichotomize the notion: they (structure, organizations, experts) had power, we (the oppressed, grassroots, marginalized) did not (Gaventa & Cornwall, 2008). A call for home therapy seeks to transform power relations by challenging traditional processes of knowledge production. Access to the current medical information on hemophilia also reflected these families’ desire to reshape the knowledge mechanism through information control; to break the silence of the oppressed with de-professionalized knowledge. M center invited a hematologist to provide on-line lectures for all patients and their families which was of special benefit to those living in remote locations.

Although social advocacy is the mission of M center, it is too abstract and cannot be operational. The PAR facilitator encouraged the leaders to select a topic relevant to social advocacy in order to undertake research to collect and analyze data and thus identify key issues. With the assistance of two social work students, two mothers conducted informal interviews and one focus group to explore the conflicts between families and different systems. Three thematic groups emerged from the research data using a problem tree: conflicts between patients and neighbors, nurses and local government officers. Further analysis of these conflict situations revealed the root problem to be lack of knowledge about hemophilia. Three mothers shared their experiences of conflicts:

I seldom took my children to the playground in the community. My neighbor warned their children not to play with my child because he had a problem. I quarreled with one old lady because she said my son probably also had problem with his brain. (MH8)

I argued with the village leader because he refused to let us apply for the subsistence allowance. He said there was no problem with my son when he visited us. I cried and explained that it was impossible for my son to bleed each time he visited. (MH5)

My son bled accidently while we were travelling. We took him to a prestigious hospital. The nurse insisted on drawing blood from his neck. I told her it may result in his death. But she said she should follow the procedure strictly. I rushed into the doctor’s office and argued with him. (MH2)

PAR is a social process of collaborative learning realized by groups of people who join together in changing the practices through which they interact in a shared social world in which, for better or worse, we live with the consequences of each other’s actions (Kemmis & McTaggart, 2007). Misunderstandings about hemophilia by professionals, neighbors, school teachers, government officers, and other people with whom families with hemophiliac children may interact in their daily life, can lead to internalized stigma and hemophiliac patients’ and their families’ compromised dignity. As a result, improving their awareness became the first concern of M center. With the support of another social work organization, M center decided to use Playback Theater¹¹ for social advocacy (as shown in Figure 3).

Figure 3.

PBT: A mother among ten thousand.

Based on the mothers’ stories, the play was instantly and collectively co-created by the actors (consisting of mothers and female social work students) and the audience (comprising other family members of hemophiliac children and other helping professionals). In the first play, actors traced back to the child’s diagnosis with hemophilia in hospital. Remarkably, several fathers pointed out the gender-blind perspective of the play again because it neglected the fathers’ feelings. This provided insight for all actors that a feminist approach, as Dominelli (2002) asserts, takes women’s well-being as the starting point, though not necessarily the end, of its analyses and has made creating egalitarian social relations an integral part of practice. Empowerment, a feminist approach and PAR are continuously learning-by-doing processes. A new play integrating fathers’ and siblings’ voices is being developed at the time of writing. Playback Theater actors plan to perform the revised play in communities, schools and any other potential venue in order to raise public awareness of rare diseases.

Discussion

This study has explored the process of providing a social work service for hemophiliac patients and their families using PAR as a way of empowerment. The findings that emerged culminated in interesting insights into how social work practice can be improved in the health care field and how the disadvantaged can be empowered via PAR.

This study aimed to answer three research questions: (1) how can PAR facilitate the social work team’s efforts to improve their practice in a non-traditional and challenging field in health care? (2) how do mothers with hemophiliac children transform their roles from that of passive victim to active subject via PAR? (3) what are the limitations when applying PAR to facilitate empowerment in social work practice in the field of rare diseases?

PAR contributes to improving social work practice in terms of achieving sympathetic understanding, accumulating service experience for hemophiliac children and strengthening the mission of social work. The ability to empathize with their clients is crucial for social workers to build rapport with clients (Kirst-Ashman, 2010). However, it is difficult for social work students to understand mothers with hemophiliac children and their tragic narrative strategy due to their limited life experience. PAR facilitated communication between these students and mothers by life-story collection and cultivated mutual understanding. In addition, the social work team gained extensive knowledge about day-to-cay care for hemophiliac children from these mothers. This improved students’ confidence in their practice with hemophiliac patients. PAR also enabled social work students to understand empowerment not as an abstract and static term but as a value-laden and conflict process in which the redistribution of power may cause potential conflicts. As a result, social workers were required to confirm their mission and identify themselves clearly as a profession which insists on principles of social justice, human rights, collective responsibility and respect for diversity.

Mothers with hemophiliac children, especially those who assume leadership roles, have transformed from passive victim to active participant via PAR. PAR contributed to their development on practical knowledge through highly participatory approaches that seek to democratize the knowledge generation process itself (Hammad, Alunni, & Alkhas, 2019). By demystifying the research process using simple and visualized tools like problem trees and brainstorming, we encouraged mothers to participate in the research process and contribute to the research in ways that were familiar and comfortable. In addition, their non-professional knowledge was respected and valued. Mothers shared their nurturing experience of hemophiliac children at different life stages. This knowledge is pragmatic and useful for prevention and immediate assistance when an accident happens. Power arises in knowledge and thus mothers felt more confident and safer. For these mothers, participation was also an empowering process. When they were more involved in decision-making situations relevant to their own issues, their awareness of being subjects was cultivated and their motivation to improve capacity was stimulated. These mothers learned professional knowledge (social work and psychology). They also attempted to conduct research, provide a service independently and accumulate negotiation skills with different district government agencies during the process of establishing their own organization.

It is worth noting the possible risk of further stigmatization the disadvantaged in the empowering process. Increased power for one group means a loss of power for another (Gaventa & Cornwall, 2008). With the limited resource of an underdeveloped province such as the one in which this project was conducted, PAR challenged the vested interests of different stakeholders and thus provoked unexpected conflicts. Although conflicts are an unavoidable element of empowerment in the process of challenging traditional asymmetric relationships, risks of further stigmatization of the vulnerable groups are great. We felt we were walking on thin ice in promoting this project and conducted each step extremely cautiously. Social workers are required to protect the vulnerable from being stigmatized and simultaneously commit to their professional mission.

There are two limitations when applying PAR as an empowering process in social work practice in the health care field. The first limitation is that participants’ education levels and financial situation influence their understanding and motivation for participation. In this study, mothers with higher education and income incomes took a more active role in building the self-help organization and were more concerned about having a sustainable and independent service when the project ended. In comparison, mothers with lower education and income cared more about the pragmatic and immediate assistance they could gain from the project. Secondly, combining the roles of practitioner and researcher made PAR confusing for beginners. We had to keep asking ourselves, are we conducting research, or are we doing the practice? However, this process provided a good way for us as PAR novices to learn by doing.

Conclusion

The findings from this study culminated in interesting insights into how PAR can improve social work practice in health care and empower disadvantaged people. The criterion of PAR success is not whether participants have followed the steps faithfully but rather whether they have a strong and authentic sense of development and evolution in their practice, their understanding of their practices, and the situations in which they practice (Kemmis & McTaggar, 2007, p. 277). As for mothers with hemophiliac children, they recognized that their victim status can be changed to that of active subject. Their tragic narrative as victims can be re-narrated as resilience through capacity- and awareness-building. For social workers, PAR guides their practice direction and allows them to acquire an identity, from a very marginalized group of “warmhearted people” to peers with families with hemophiliac children mutually engaged in social advocacy. PAR contributes to empowerment and consciousness-raising through acclaiming the knowledge of the disadvantaged and facilitating social workers’ reflection on their professional mission.

Our study indicates a direction for further development of this kind of program. First, it is crucial for social workers to facilitate self-help organizations including patients and/or their family members. These organizations play important roles in developing non-professional knowledge, providing mutual psychosocial support and social advocacy. This has been demonstrated in this study as the best way to empower the disadvantage and sustain the service. Second, social work has to confront the challenges rooted in its mission to benefit the vulnerable and other health care disciplines that often display bureaucracy, bias, rigidity in social policy, and sometimes apparent lack of empathy (Findley, 2014). As a result, social workers are required to negotiate with different stakeholders to ensure maximum benefit for the disadvantaged. Third, PAR is recommended as a research methodology for professionals in the field of rare diseases. It is more than a research tool; it is also a process for achieving more equal status between the researcher and the vulnerable through sympathetic understanding when immersed in a program.

Footnotes

Acknowledgements

The author would like to express gratitude to the Keswick Foundation for its support to this project from 2014 to 2017. A special thanks also to the leader of W Association because of his contribution to guiding the author and her social work team to the area of rare diseases. We welcome and invite your comments and reactions at our action research community’s interactive ARJ blog housed at AR+

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Notes

ORCID iD

Jing Yang

Author biography

Jing Yang is an associate professor of Guizhou University, China. She is the committee of Social Work Association and Sociology Association of Guizhou Province, PRC. Her publications mainly focus on disability study, social work education, action research, and social work practice for children.

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Participatory action research: Promoting partnership between a social work team and mothers of hemophiliac children

Abstract

Keywords

Introduction

Background to the project

Research methodology

PAR as a research method

Data collection and analysis

Stage 1: Building rapport and identifying the co-inquiry participants

A rare mother 5

Stage 2: Changing the asymmetric relationships and building mutual support via gatherings

Stage 3: Capacity building and establishing a self-help organization

Stage 4: Providing independent service and improving public awareness

Discussion

Conclusion

Footnotes

Acknowledgements

Declaration of conflicting interests

Funding

Notes

ORCID iD

Author biography

References

A rare mother⁵