Abstract
Severe parental mental illness poses a challenge to quality of life (QoL) in a substantial number of children and adolescents, and improving the lives of these children is of urgent political and public health concern. This study used a bottom-up qualitative approach to develop a new stakeholder-led model of quality of life relevant to this population. Qualitative data were collected from 19 individuals participating in focus groups or individual interviews. Participants comprised 8 clinical academics, health and social care professionals or voluntary agency representatives; 5 parents and 6 young people (aged 13–18 yrs) with lived experience of severe parental mental illness. Data underwent inductive thematic analysis for the purposes of informing a population-specific quality of life model. Fifty nine individual themes were identified and grouped into 11 key ‘meta-themes’. Mapping each meta-theme against existing child-centred quality of life concepts revealed a multi-dimensional model that endorsed, to a greater or lesser degree, the core domains of generic quality of life models. Three new population-specific priorities were also observed: i) the alleviation of parental mental health symptoms, ii) improved problem-based coping skills and iii) increased mental health literacy. The identification of these priorities raises questions regarding the validity of generic quality of life measures to monitor the effectiveness of services for families and children affected by severe mental illness. New, age-appropriate instruments that better reflect the life priorities and unique challenges faced by the children of parents with severe mental illness may need to be developed. Challenges then remain in augmenting and adapting service design and delivery mechanisms better to meet these needs. Future child and adult mental health services need to work seamlessly alongside statutory education and social care services and a growing number of relevant third sector providers to address fully the quality of life priorities of these vulnerable families.
Highlights
Improving the lives of children born to a parent with severe mental illness (SMI) is of increasingly urgent political and public health concern [1]
Empirical work suggests that at least one quarter of adults admitted to UK adult acute inpatient settings are likely to have dependent children and that between 50–66% of people with severe mental illness may be living with children under the age of 18 [2,3]
Professional stakeholders were asked to comment on their awareness of current quality of life models and the perceived validity of these models for children living with severe parental mental illness
Summary
Improving the lives of children born to a parent with severe mental illness (SMI) is of increasingly urgent political and public health concern [1]. A recent review has suggested that standard definitions of quality of life do not fully capture the experiences of children of parents with severe mental illness [30]. Children living with parents with severe mental illness encounter specific stressors related to disrupted life routines, repeated episodes of illness and hospitalisation of their parents, causing fracturing of family, academic and social lives. They have poor mental health literacy and limited strategies for coping [3]. We sought to develop a new, stakeholder-led model of quality of life for children of parents with severe mental illness by using a ‘bottom-up’ qualitative approach
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