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

Mark Whiting; Avril Nash; Sheila Roberts; Sally Kendall

doi:10.18745/pb.19480

Previous research has found that families often experience physical, social and emotional stress in the context of living with and caring for their disabled child. The literature indicates that a key factor in determining how well the parents of these children cope with their situation maybe how resilient and self-efficacious they are. This study focussed upon the development of resilience and self-efficacy in parents of children with disabilities and complex health needs. Resilience is a complex phenomenon which refers to the ability of an individual to withstand and bounce back following exposure to stressful, adverse or difficult conditions or circumstances. Parenting self-efficacy is broadly defined as an individual’s appraisal of his or her competence as a parent. ENHANCE is a novel intervention that was specifically developed for use with a population of parents of children with disabilities and complex health needs. 15 parents (the child’s main caregiver) were engaged in a series of guided conversations delivered during six contact visits with Nurse Co-Researchers (Community Children’s Nurses who had received an intensive three day preparation programme). The conversations, which were supported with additional material that was designed specifically for use in the study, were based around four key themes: emotional coping, practical coping, support networks and ‘you and your child’. The impact of the intervention was evaluated two weeks after the final intervention visit using both qualitative and pre and post intervention quantitative measures. Parents reported increased self-belief and self-confidence and indicated that they felt better supported and stronger as a result of the intervention. This was consistent with the quantitative evaluation which identified significant improvements on scores for active coping and self-blame on the brief COPE inventory scale andfor empathy and understanding and self-acceptance on the TOPSE scale. Scores on the self-report Distress Thermometer demonstrated a significant reduction in self-reported distress scores at the end of the intervention period. Although ten parents reported that they felt more resilient as a result of the intervention, this was not mirrored in the scores recorded by parents on a novel‘Resilience Thermometer’ which was introduced in this study. Both parents and Nurse Co-Researchers evaluated the intervention itself in strong positive terms. The Nurse Co-Researchers reported increased job satisfaction, related specifically to the amount of time that they were able to spend with the parents. The study findings indicated that further research related to the potential to enhance resilience in this population through an intervention-based approach would be of value. It is proposed that the ENHANCE intervention might be subjected to further testing to incorporate: • a larger sample size to support a more robust statistical analysis; • the collection of more detailed biographical data related to the timeline for the emergence of the child’s disability or complex health need in order to determine whether it is possible to correlate this with parental resilience; • possible identification of an earlier point within that timeline for entry to the study; • establishment of an additional data capture point, perhaps six months post intervention; • refinement and re-testing of the ‘Resilience Thermometer’; • examination of how resilience and self-efficacy might be related to health-seeking behaviours and• detailed examination of the economic viability of the intervention in respect of the costs of delivery of the programme compared with potential savings in terms of health services expenditure arising as a result of enhanced parental resilience.

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

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