BACKGROUND: Serious parental mental illness poses a challenge to quality of life (QoL) in a substantial number of children and adolescents. Improving the lives of these children is a political and public health concern. OBJECTIVES: To conduct an evidence synthesis of the clinical effectiveness, cost-effectiveness and acceptability of community-based interventions for improving QoL in children of parents with serious mental illness (SMI). DATA SOURCES: Nineteen health, allied health and educational databases, searched from database inception to May 2012, and supplemented with hand searches, reference checking, searches of grey literature, dissertations, ongoing research registers, forward citation tracking and key author contact. REVIEW METHODS: Inclusion criteria required ≥ 50% of parents to have SMI or severe depression confirmed by clinical diagnosis or baseline symptoms. Children were ≤ 18 years of age. Community-based interventions included any non-residential psychological/psychosocial intervention involving parents or children for the purposes of improving health or well-being. Intervention comparators were not predefined and primary outcomes were validated measures of children's QoL and emotional health. Secondary outcomes were derived from UK policy and stakeholder consultation. Data were extracted independently by two reviewers and the study quality was assessed via Cochrane criteria for randomised/non-randomised designs, Critical Appraisal Skills Programme (CASP) qualitative criteria or a standard checklist for economic evaluations. Separate syntheses were conducted for SMI and severe depression. Standardised effect size (ES) trials were pooled using random-effects modelling for which sufficient data were available. Economic data were summarised and acceptability data were synthesised via a textual narrative approach. RESULTS: Three trials targeted mothers/the children of mothers with psychotic symptoms. Children were ≤ 12 years of age and no primary QoL or emotional health outcomes were reported. Insufficient secondary outcome data prevented pooling and no eligible economic evaluations were found. Twenty-six trials targeted parents/children of parents with severe depression; 18 recruited mothers of infants < 2.5 years of age. Data pooling suggested no significant short-term effect on children's emotional health [standardised ES 0.06, 95% confidence interval (CI) -0.20 to 0.33] or social function (standardised ES 0.23, 95% CI 0.00 to 0.46). Medium to large effects were observed for parents' depressive symptoms (standardised ES 0.73, 95% CI 0.51 to 0.94) and parenting behaviours (standardised ES 0.67, 95% CI 0.32 to 1.02). One non-randomised economic evaluation was found. Intervention uptake and adherence were inconsistently reported. Incomplete evidence highlighted potential barriers from child custody losses and conflicting life circumstances. Qualitative data suggesting interventions to overcome social isolation and stigma are well received by parents. Limited data suggested that children may value peer interactions and normalising activities. LIMITATIONS: Included trials were of poor or unclear quality with inadequate randomisation or allocation concealment, possible attrition biases and incomplete outcome reporting. Meaningful analysis was challenged by clinical and methodological heterogeneity and insufficient data for subgroup comparisons. Children's self-reports were lacking and evidence of effect remains biased towards parent-based interventions for severely depressed mothers of infants. Generalisability to other diagnoses, older children and children of fathers with SMI is unclear. A lack of high-quality economic data prevented economic modelling. CONCLUSION: Evidence for community-based interventions to enhance QoL in children of SMI parents is lacking. The capacity to recommend evidence-based approaches is limited. Rigorous development work is needed to establish feasible and acceptable child- and family-based interventions, prior to evaluating clinical effectiveness and cost-effectiveness via a randomised controlled trial (RCT). A substantial programme of pilot work is recommended to underpin the development of feasible and acceptable interventions for this population. Evaluations should incorporate validated, child-centred QoL outcome measures, high-quality cost data and nested, in-depth acceptability studies. New age-appropriate instruments that better reflect the life priorities and unique challenges faced by children of parents with SMI may need to be developed. FUNDING: This report was commissioned by the NHS R&D Health Technology Assessment programme and funded by the National Institute for Health Research Health Technology Assessment programme

http://www.copmi.net.au/images/pdf/Research/Clearinghouse/copmi-program-reviews.pdf

The clinical effectiveness, cost-effectiveness and acceptability of community-based interventions aimed at improving or maintaining quality of life in children of parents with serious mental illness: a systematic review

Aim: This paper provides a review of published qualitative research on children's experiences of parental mental illness.

Methods: We undertook a comprehensive search of Medical Literature Analysis and Retrieval System Online, PsycINFO, Cumulative Index to Nursing and Allied Health Literature, Sociological Abstracts and Applied Social Sciences Index and Abstracts databases, as well as citation searches in Web of Science and manual searches of other relevant journals and reference lists of primary papers.

Results: Although 20 studies met the search criteria, only 10 focused exclusively on children's descriptions of their experience – the remainder elicited adults' perspectives on children's experiences of parental mental illnesses. Findings are organized under three themes: the impact of illness on children's daily life, how children cope with their experiences and how children understand mental illness.

Conclusions: Despite references to pervasive knowledge gaps in the literature, significant information has been accumulated about children's experiences of parental mental illness. Considerable variability in research findings and tensions remain unresolved. For example, evidence is mixed as to children's knowledge and understanding of mental illnesses and how best to deploy resources to help them acquire optimal information. Furthermore, children's desire to be recognized as important to their parents' well-being conflicted with adults' perceptions that children should be protected from too much responsibility. Nevertheless, the cumulative evidence remains a key reason for advocating for psychoeducation and peer-support group interventions for children, which are endorsed by child and adult study participants alike.

Children's experiences of parental mental illness: a literature review.

Children's Needs - Parenting Capacity: Child Abuse, Parental Mental Illness, Learning Disability, Substance Misuse, and Domestic Violence

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.

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

Assessing Parental Capacity to Change when Children are on the Edge of Care is an
overview of current research evidence, bringing together some of the key research
messages concerning factors which promote or inhibit parental capacity to change in
families where there are significant child protection concerns. It is intended to serve as a
reference resource for social workers in their work to support families where children’s
safety and developmental functioning are at risk. Its purpose is also to assist social
workers and children’s guardians in delivering more focused and robust assessments of
parenting capability and parental capacity to change, and assist judges and other legal
professionals in evaluating the quality of assessment work in court proceedings. The
report brings together research findings from a wide range of disciplines, which are not
otherwise readily available in one location for social workers, family justice professionals
and other practitioners with safeguarding responsibilities. [Continues]

Assessing parental capacity to change when children are on the edge of care: an overview of current research evidence

This research sets out to discover what impact parental schizophrenia makes on a child’s life. It focuses on the daily life and experiences of children. Their health, education, family and leisure activities are examined. Contact with helping agencies and their unmet needs are investigated. The sample was drawn from the children of patients attending the mental health services in South West Dublin. They were matched with a control group of children of well parents. The majority of children who have one parent with schizophrenia had similar profiles to the children of well parents in the areas of physical health, positive family feelings, friendships, hobbies and household tasks. In a number of other areas, however, differences were found. Sample children had more psychiatric disturbance, more problems associated with school, less contact with relatives and spent more time at home. The children had little access to services and were upset by hospital visiting. The need for an educational programme and support for these children was demonstrated. It is recommended that a more co-ordinated approach is required by both adult and child mental health services in order to meet their needs.

Victoria Somers

Papers

Schizophrenia: The Impact of Parental Illness on Children