Defining Quality of Life in the Children of Parents with Severe Mental Illness: A Preliminary Stakeholder-Led Model

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

Measurement of a model of implementation for health care: toward a testable theory

<p>Abstract</p> <p>Background</p> <p>Greenhalgh et al. used a considerable evidence-base to develop a comprehensive model of implementation of innovations in healthcare organizations [1]. However, these authors did not fully operationalize their model, making it difficult to test formally. The present paper represents a first step in operationalizing Greenhalgh et al.’s model by providing background, rationale, working definitions, and measurement of key constructs.</p> <p>Methods</p> <p>A systematic review of the literature was conducted for key words representing 53 separate sub-constructs from six of the model’s broad constructs. Using an iterative process, we reviewed existing measures and utilized or adapted items. Where no one measure was deemed appropriate, we developed other items to measure the constructs through consensus.</p> <p>Results</p> <p>The review and iterative process of team consensus identified three types of data that can been used to operationalize the constructs in the model: survey items, interview questions, and administrative data. Specific examples of each of these are reported.</p> <p>Conclusion</p> <p>Despite limitations, the mixed-methods approach to measurement using the survey, interview measure, and administrative data can facilitate research on implementation by providing investigators with a measurement tool that captures most of the constructs identified by the Greenhalgh model. These measures are currently being used to collect data concerning the implementation of two evidence-based psychotherapies disseminated nationally within Department of Veterans Affairs. Testing of psychometric properties and subsequent refinement should enhance the utility of the measures.</p