Development of Parenting Support for Parents of Children With Long-Term Conditions: A Mixed Methods Study
Authors:   , Wiseman-Gregg Kirsty 
Published: May 2024

Background It is estimated that one in six children in Scotland has a long-term condition (LTC), with prevalence rates continuing to rise globally. Long-term conditions can impact not only the affected child, but the wider family. The landscape for parents raising a child with a LTC is often markedly different to that of parents raising a child who does not have a LTC, and while some families adjust and cope well, others respond rather differently, struggling to carry the burden of responsibility in managing their children’s condition. While parents play a crucial role in the management of their child’s condition, the additional caring needs can be burdensome and over time can lead to suboptimal parenting strategies that are linked with poorer outcomes for children and families. Parenting interventions have been shown to be effective in improving factors related to parenting; however, existing interventions for parents of children with LTCs often focus on issues such as symptom management rather than parenting. Interventions adopting a medical educational model, while important, have been shown to have limited success in improving wider indicators of health and well-being such as internalising and externalising behavioural problems in children. Aims The aims of this programme of research were twofold, firstly, to develop a prototype of a parenting support programme for parents of children with LTCs and, secondly, to identify reliable and valid outcome measures that can be used in a future trial of effectiveness. Method A mixed methods approach was taken, underpinned by the MRC framework for developing and evaluating complex interventions. A needs assessment was conducted in two key stages; firstly, the views and experiences of parents (n=98) and health professionals (n=160) were explored using survey methodology, and secondly, semi-structured interviews were conducted with parents (n=22) to explore in greater depth some of the key findings that emerged from the preceding stage. In consultation with key stakeholders, a prototype of a parenting support programme was developed, and acceptability and feasibility data were generated (n=11). The final stage of the programme or research involved conducting a systematic review of reviews to identify outcome measures focusing on social, emotional, behavioural, and quality of life indicators appropriate for use with children between the ages of 2 and 12 years. Findings The findings from the needs assessments identified a range of needs, but more importantly highlighted that these needs are dependent on several factors (e.g., condition severity, timing of diagnosis, availability of support) as opposed to condition type. In addition, whilst commonalities were found across groups of parents, there were greater impacts on parents of children with more complex conditions, and parents of children with additional developmental needs. Furthermore, a gap in the provision of parenting support was identified. Taken together these findings informed the content of a parenting support programme that was further developed during stakeholder consultations. A final prototype of a parenting support programme was developed as an online resource for parents and other primary caregivers, that was considered to be acceptable and feasible to stakeholders. Conclusion This programme of work makes a significant and original contribution to understanding of parenting within the context of childhood ill health, highlighting the importance and value of working alongside stakeholders in intervention development. The Review of Reviews is currently one of its kind that provides researchers and health clinicians a useful tool when selecting the appropriate outcome assessment for a future trial of effectiveness.