Vacillating between distress and adaptation: a multi-perspective account of lived experiences of thalassemia major

Thalassemia major is a recessively inherited haematological disorder, which involves a complete lack or reduction of beta protein in the hemoglobin, causing life-threatening anemia. Management requires patients to have life-long access to a treatment regimen of fortnightly blood transfusions and daily chelation therapy, imposing major demands on children and their families. Much of the research in the area of paediatric, chronic illnesses such as thalassemia major has investigated psychosocial impact and adjustment to the illness. However, the lived experiences of children and their families and the meanings assigned to these experiences have received little empirical attention. Additionally, the experiences of specialist healthcare professionals have been particularly neglected. Despite the high prevalence of thalassemia in Pakistan, the majority of existing research has been conducted in Western countries. Therefore, the present research adopted a multi-perspective approach, to explore the experiences of key people involved in thalassemia in Pakistan, namely, children, their mothers and healthcare professionals. Study 1 explored the experiences of 12 children (aged 8-12 years) living with thalassemia, viewing them as active agents (Prout & James, 1997). Studies 2 and 3 explored the experiences of their mothers (N=12) and healthcare professionals (N=4) as the primary and professional caregivers, respectively. All of the participants were recruited from a treatment centre in Multan, Pakistan. Each of these groups were studied in two phases; in phase 1, five focus groups and two role-plays (with children only) were conducted and analysed using thematic analysis (Braun & Clarke, 2006). The purpose of phase 1 was to obtain an understanding of the participants’ core concerns in order to develop the interview guide for phase 2, which aimed to provide an in-depth understanding of these experiences. In phase 2, 28 in-depth individual interviews were conducted with each participant in all three groups and analysed using interpretative phenomenological analysis (IPA). For study 1, the findings consisted of three superordinate themes: ‘Loss of normal childhood’, ‘Minimizing differences’, and ‘Redefining self’. These themes were interrelated and reflected the burden of living with thalassemia and the wide array of coping strategies used by children living with thalassemia. Study 2 (mothers) resulted in four superordinate themes. Across the first two themes; ‘Living with a chronic heartache’ and ‘Child becomes the focal point’, mothers shared the difficulties associated with being a primary caregiver. The remaining two themes; ‘Focus on normalization’ and ‘Vigilant parenting’ were reflective of the coping strategies adopted by mothers to deal with caregiving stress. The findings of study 3 with healthcare professionals were composed of four superordinate themes where the first two themes; ‘Making sense of work-related frustrations’, and ‘Blurring of boundaries’ shed light on the frustrations, helplessness, emotional distress and dilemmas of professional caregiving. In particular, the healthcare professionals related the tension between empathetic behaviour and distress. The latter two themes; ‘Seeking satisfaction’, and ‘Ascertaining and re-ascertaining boundaries’ illustrated the coping efforts of the healthcare professionals to address the stress of professional caregiving. The current research provides unique insights and expands our understanding of the experiences of the main people directly involved with the illness. The findings of all three studies revealed a complex interplay of themes, which highlight the fluctuating and dynamic nature of attempts to manage the condition and caregiving, and which is in contrast to the progressive, linear approaches of adjustment often employed in the chronic illness literature. Participants vacillated between feeling overwhelmed by the burden of illness/caregiving and adaptation. This vacillation was influenced by their personal and social setting; any change in these contexts could potentially disrupt the coping process. The findings also elucidate the paradoxes of coping efforts since, at times, coping itself contributed towards the burden associated with thalassemia major/caregiving. Moreover, the coping strategies of the participants in all three groups remained vulnerable. The multi-perspective account was achieved by comparing the the experiences of children, mothers and the healthcare professionals at the group level. It highlighted various similarities as well as differences in the accounts of the participants in the three groups. It revealed a complex interaction between their experiences and described how coping strategies/stress of one group was sometimes perceived as stress-inducing by the other group. Such insights highlight the importance of a multi-perspective approach, which allowed the identification of areas for improvement in healthcare provision. The theoretical, methodological and practical implications of the current research are discussed