Parent education programmes for special health care needs children: a systematic review

Abstract

Aims and objectives: The aim of this review was to examine parent education programmes for families with children with special health care needs, to better design interventions focusing on the psychosocial aspects of living with a child's chronic condition.

Background: Studies of familial coping with children with special health care needs indicate high levels of parenting stress, with families with children with special health care needs at risk of major psychological and social disturbances and financial strain. Despite increased knowledge of the factors affecting children with special health care needs themselves, evidence for the effectiveness of preventative and treatment interventions in the form of parent education programmes remains limited.

Design: Systematic review using PRISMA guidelines.

Method: Multi database Boolean searches in EBSCO Discovery Services using the search terms 'complex/special health care needs children', 'child/pediatric/congenital heart disease', 'chronic illness (including diabetes, cancer and cystic fibrosis)', 'family coping', 'siblings' AND 'parenting/family support programs' were conducted.

Results: Analysis of 13 included studies showed evidence for the effectiveness of both mixed-health condition and condition-specific parenting programmes delivered in a variety of modes. Three common core intervention approaches were: use of narrative therapy enabling families to tell their own stories, thus facilitating emotional processing and (co-) construction of meaning; a focus on strengthening protective factors such as enhancing parents' skills in communication, and behavioural management and provision of psycho-education to deepen parents' understanding of their child's condition and associated developmental challenges.

Conclusion: Irrespective of the type of outcome measures used in the studies, the review showed that there were positive gains and improvements across a range of areas of family functioning such as mental health, parenting, communication and problem-solving skills postprogramme.

Relevance to clinical practice: Identification of what programme characteristics enhance functioning for families with children with special health care needs should encourage the design of effective interventions.

Keywords: chronic illness; family support; parenting education; special health care needs children.