ENHANCE: Enhancing resilience and self-efficacy in the parents of children with disabilities and complex health needs
Type of research:
Applied Health research (Action Research Development study)
Background & Scientific Rationale:
It is estimated that there are around three quarters of a million children in England who are disabled – 7.3% of the child population (PMSU, 2005, Improving the life chances of disabled people). Extrapolation of this estimate suggests that there are approximately 17,666 disabled children in Hertfordshire and 81,234 disabled children in the East of England . The combined additional costs of state funded health, education and social care for such children (as compared with their non-disabled peers) is unknown. Research to date demonstrates that families experience physical, social and emotional stress in coping with day-to-day living with their disabled child, and that the burden of care has significant impact on quality of life, utilisation of services and mental health of family members (Whiting, 2009 ). The introduction of the Key Worker or Lead Professional model of support for families is widely advocated with some evidence of improved outcomes for children and families , though economic evaluation of this approach is somewhat limited. The families of children with disabilities and complex health needs are major users of health services, though there is very little understanding of how a Key Worker approach might impact on care from both service/organisation and financial perspectives.
The Family Nurse Partnership (FNP) model was originally developed by Olds in the USA, during the 1970s. The programme is based upon the delivery of intense professional one-to-one support (provided by qualified nurses) for young first time mothers. Over the course of 30 years of evaluation in the United States the programme has been shown to deliver a range of both short and long term benefits for families, including improved pregnancy outcomes, improved maternal health behaviours (such as reduced smoking, alcohol and substance use), improvements in the health and development of children, and has helped parents to create a positive life course for themselves (including earlier return to employment, increased overall levels of employment, improved engagement with further and higher education etc.). It has been suggested that for every dollar invested in the programme, five dollars are realised in long-term gains for the economy.
ENHANCE is a novel intervention that was specifically developed to develop the 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.
Research questions / aims:
- Question: How could lessons learned from the Family Nurse Partnership approach be developed within the practice of Community Children’s Nursing, in order to influence family resilience, parenting self-efficacy and service utilisation for families of children with complex needs?
- Aim: To apply learning from the Family Nurse Partnership approach, including an adaptive behaviour change intervention, in the context of building resilience and enhancing parental self-efficacy within families of children with disability/complex health needs and to develop the tools needed to assess the cost benefit of the FNP approach in this context
15 parents (the child’s main care giver) 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 Nurse Co-Researchers were based in three NHS sites in the East of England. 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’
Key findings and outputs:
The impact of the intervention was evaluated using both qualitative and quantitative measures. In qualitative interviews that were undertaken two weeks after the completing the ENHANCE programme, 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 and for 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 final report from the ENHANCE study can be downloaded here.
- Nurse managers in each of the three study sites have been contacted with a request that they ‘host’ a local event to allow for a presentation of the results of the study – a joint presentation by members of the University Research team and the nurse Co-Researchers from the individual NHS study sites. Dissemination events took place in each of these sites and the findings of the study were shared with a total of forty staff across the three sites
- A draft article has been submitted to the journal Primary Health Care Research and Development
- The study will form the basis for an NIHR Research for Patient Benefit submission: a feasibility study of a randomized controlled trial of the ENHANCE intervention in order to provide key information that will inform the development and delivery of a robust full-scale trial
For further information on this project, contact Professor Mark Whiting, WellChild Professor of Community Children’s Nursing at the University of Hertfordshire firstname.lastname@example.org