Parental stress and child adherence to treatment plans: A systematic review AND A distance-based intervention supporting neuropsychological recommendations for children with a neurodisability

Systematic review: Abstract Background: Adherence to treatment plans for children with chronic disorders is around 50%. Barriers to good adherence include parental factors such as parental stress, with parents of children with a chronic condition found to have higher levels of parental stress than parents of children without such a condition. However, no review has assessed the relationship between parental stress and adherence irrespective of child diagnosis. Method: PRISMA-P guidelines were followed to ensure transparency. CINAHL, Medline, EMBASE and PsycINFO databases were searched using relevant terms from creation to July 2019. 1067 articles were identified and screened for eligibility, resulting in 14 studies being included. Results: Overall a negative relationship between parental stress and adherence was found, such that increased parental stress related to poorer adherence. Exceptions to this are discussed. Papers utilised varied measures for parental stress and adherence and assessed a number of different childhood disorders. Parental stress was found to be a multifaceted concept including aspects such as time pressures, emotional strain and financial difficulties. Conclusion: Parental stress is a possible target for interventions aiming to improve paediatric adherence. However, given the multifaceted nature of parental stress interventions may benefit from targeting particular aspects (e.g. alleviating financial pressures). Further, clinics could work towards routinely screening for parental stress and developing a clinical cut-off indicating high stress among parents whose child has a chronic illness. Future research directions include further consideration of additional factors identified within this review as also related to adherence (e.g. health beliefs, family conflict). Keywords: parental stress, paediatric chronic health disorder, adherence Distance-based research intervention Background: Only 50% of paediatric neuropsychological recommendations are adhered to because parents struggle to understand them and can feel too overwhelmed to implement them. The Information-Motivation-Behaviour skills (IMB) model offers a novel way to design neuropsychological interventions that specifically address parental barriers and thus improve adherence. Method: Four families, recruited through a national clinic, completed a single-case experimental multiple baseline design study. An IMB-informed intervention comprising a baseline and intervention phase was designed to improve adherence to neuropsychological recommendations for children with rare neurological conditions. A pre-baseline measure of recommendation implementation informed by conversations with families was completed retrospectively. An online daily outcome measure regarding the implementation of eight recommendations was completed over thirty-one days. Three (of the eight) recommendations, ‘targeted recommendations,’ were chosen by families in collaboration with the researcher as the focus for the intervention. The remaining five were ‘non-targeted recommendations.’ Visual analysis, randomisation tests and effect size tests of adherence were completed. Pre and post intervention measures of parental stress and child’s everyday functioning were completed and analysed using the Reliable Change Index (RCI). Parents provided feedback regarding the acceptability of the intervention. Results: Two children in the study had diagnoses of Sturge-Weber Syndrome (SWS), one with Congenital Melanocytic Nevus (CMN) and one had a chromosomal disorder. Implementation of targeted recommendations significantly increased following the intervention when data was analysed as a group. No significant increases were found for non-targeted recommendations. Visual analysis did show implementation increases from pre-baseline to baseline and for non-targeted recommendations, suggesting the simple information and focusing of recommendations provided at study commencement enabled some improved adherence. However, these increases were typically not sustained and were not as large as increases following the intervention for targeted recommendations. RCI analyses typically did not demonstrate improved levels of parental stress or the child’s everyday functioning. Parental feedback regarding the study indicated the intervention design was manageable and accessible. Conclusion: This is the first study to design an IMB informed intervention to improve adherence for paediatric neurological conditions, suggesting future research could continue to apply the model. Targeted recommendation increases indicate that information, motivation, and behaviour skills are all required for sustained and significant increases in adherence. The IMB model components could be incorporated into clinical neuropsychological assessments and used to inform and tailor reports and recommendations. Future studies could consider how the IMB model can be adapted to develop interventions to support improved adherence for different difficulties. Key words: Paediatric neurological conditions, parents, recommendations, adherence, IMB model, intervention, single-case experimental design, online surve