Quality of life of New Zealand families with children who have serious brain injury or disorder : a thesis presented in partial fulfilment of the requirements of the degree of Master of Arts in Psychology at Massey University, Wellington, New Zealand
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Date
2021
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Massey University
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Children’s brains can be affected by injuries, illnesses, genetic conditions or differences of development in ways that make it hard or impossible for them to meet society’s expectations in various domains of life. International research shows that raising such a child has an impact on family quality of life. While quality of life (QoL) is defined in numerous ways, reports show effects on emotional, social, psychological and financial levels, as well as impacts on family relationships. Little is known about New Zealand families’ experience of raising children who have these conditions. Initially, a study was planned of the QoL of families raising children affected by severe epilepsy. Later, the target group was expanded to include families raising children with serious neurological effects caused by any injury, illness, disorder or difference. A survey was created, based largely on the Impact of Epilepsy on Quality of Life (IEQoL) measure (Cianchetti et al., 2015), and the Quality of Life in Children with Epilepsy (QOLCE55) (Goodwin, Lambrinos, Ferro, Sabaz & Speechley, 2015). Numerous opportunities for additional comments were provided for respondents. The survey was hosted online on Qualtrix, on a Massey University server, from 11 October to 22 November 2019. Support organisations for families raising children with conditions which might include serious neurological effects were contacted and asked to invite their members to consider completing the survey. 98 responses were received, of which 21 were excluded and 77 analysed. Almost all respondents had children with autism spectrum disorders (ASD). No other condition was represented in numbers large enough to permit comparisons between or among groups. Throughout this study, we refer to respondents’ children as having a “serious brain injury/disorder”, which in retrospect is not an ideal term, but has been retained in discussion to maintain consistency with its usage in the survey. Impacts on both child QoL and family QoL were reported. Extensive commentary was provided by many respondents. Cognitive effects on children most widely reported included difficulty with following complex instructions, with reasoning and with problem solving. Social, emotional and behavioural effects on children included feeling frustrated, having limited social activities, encountering difficulty in keeping friends, and requiring a lot of attention. Effects on family QoL included apprehension about the future, limitations on participation in/enjoyment of leisure activities, impacts on employment, and increases in conflict among family members. Respondents also reported positive effects of raising a child with serious brain injury/disorder, including improved perspective on life, increased patience, and bringing the family closer together. Qualitative analysis of respondents’ written comments is planned for the future. Recommendations for future research are presented.