Adjustment of Parents of Children with Asthma or Type 1 Diabetes
Adjustment of parents of children with a chronic illness is an under-researched area, particularly using qualitative methodology. This is the case in relation to all chronic childhood illnesses, including asthma and Type 1 diabetes. These two illnesses are both increasing in prevalence and are highly relevant exemplars of illnesses that have a significant daily impact on the lives of children, parents and families. A mixed categorical / non-categorical approach was taken in this study, which has the advantage of highlighting both illness-specific and general features of parents’ experience of the child’s illness. Understanding these similarities and differences will help clinicians to focus parent and family support appropriately and also will help stimulate and inform future research efforts. Two further issues that influenced the aims of this study are the lack of theoretical coherence and poor clarity with regard to the meaning of parental adjustment and factors that influence it. The aim of this qualitative study was to investigate the adjustment of parents of children with asthma or Type 1 diabetes, and through this, to develop new theory about parents’ adjustment. This theory was intended to help explain the parents’ experience of adjustment and identify factors relevant to their adjustment outcomes. A grounded theory approach was used, set within a constructivist paradigm. The purposive sample included 32 mothers, 7 fathers and one grandmother of a child with asthma or Type 1 diabetes. Findings from observations of three multi-disciplinary team meetings following clinics and interviews with three specialist nurses and a support group leader contributed to refinements made to the parent semi-structured interview schedule. In-depth semi-structured interviews were used to investigate respondents’ perspectives in relation to their experience of the child’s illness and illness episodes, and the effects on their own and family life. Data were analysed using thematic analysis, guided by principles of grounded theory such as constant comparison. NVivo qualitative data analysis software was used to assist in the data analysis process. A new theory was developed, which incorporates a dynamic model, reflecting how parents experience adjustment in the face of new events over the course of time, in many facets of their personal life, as a parent, and in family life. The four steps of goals, events, processes and outcomes reflect findings that arose during the empirical analysis, which was organised around four major dimensions of the parents’ experiences. The theoretical model developed in this study is a useful framework for future research and clinical practice, offering a coherent framework for a field of research that is very disparate in objectives and theoretical orientation. Clinicians may use the model as a basis of exploring parents’ adjustment, not only in relation to illness-specific issues, but also in relation to supporting the development and use of coping resources and assessing whether the parents’ goals are being met in other aspects of their lives. It is a model that can be used by the multi-professional health and social care team, which could be beneficial for integrated care of the child and family.
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