ENHANCE: Enhancing resilience and self-efficacy in the parents of children with disabilities or complex health needs

Abstract

Purpose: To develop, pilot and evaluate an intervention aimed at enhancing resilience and parenting self-efficacy in parents of children with disabilities or complex health needs. Background: Parenting a child with a disability or complex health needs can have a significant and negative impact on a parent’s wellbeing. This can have both short-term and long-term outcomes on the health and wellbeing of the parent, the immediate family and the child concerned. This research sought to evaluate the feasibility of enhancing resilience for parents in this situation. Method: A psychosocial support programme, ENHANCE, was developed based on the resilience literature and on the Family Nurse Partnership way of working of a key worker taking a positive approach in structured sessions focussing on key areas. The programme, delivered fortnightly in six half-hour sessions, focusses on four domains (emotional coping, practical coping, support networks) and comprises guided discussions supported by practical exercises/additional resources. Four CCNs were recruited as co-researchers and trained to deliver the programme. The CCNs recruited families coming into the service and, in total, 17 primary caregivers, all mothers, are taking part in the study. The programme is being evaluated through interviews with parents and CCNs, and through pre- and post-test measures including the Tool to measure Parenting Self-Efficacy (TOPSE), the Brief COPE scale and a resilience/distress thermometer. Discussion: The programme is currently on-going with some families still to receive their final sessions. To date feedback has been very positive from both parents and professionals and is informing plans for further research.