An affective appraisal approach to shared decision-making: Theory, evidence and interventions for parents and carers of children with mental problems

Background: Policy guidelines recommend service user involvement in care and treatment decision-making as a person-centred approach to improving health outcomes. However, most shared decision-making (SDM) models are perceived as a rational process. There is a need for research exploring the role of emotions in children and young people’s mental health (CYPMH) decisions. This thesis aimed to develop an affective appraisal approach to SDM based on theory and evidence and to develop and pilot an intervention to support parents/carers and promote SDM. Methods: Several study designs were adopted. (1) Qualitative synthesis to understand the emotional experiences of parents. (2) Logistic regression analysis of parental help-seeking. (3) Multilevel modelling to investigate SDM in CYPMH services. (4) Interviews and focus groups with parents/carers and healthcare professionals to further explore the effect of emotions on SDM. (5) Scoping review to identify and examine existing decision support interventions. (6) Feasibility and acceptability randomised controlled trial of a novel intervention. Findings: (1) Seven categories describing parents’ emotions emerged as influencing factors to CYPMH care and treatment decisions. (2) A negative association between parental worry and help-seeking was found. (3) Almost 70% of parents reported experiencing SDM in CYPMH, and findings justified a multilevel approach to studying SDM. (4) A framework for an affective appraisal model of SDM emerged. (5) Twenty-three existing interventions were identified, incorporating an average of 4.57 elements of SDM. Time, accessibility and appropriateness emerged as factors influencing usage and implementation. (6) Although, the novel intervention (Power Up for Parents) was found to be acceptable, some changes to the recruitment strategy may be needed before upgrading to a full trial. Conclusion: This thesis provides a theoretical understanding that parents are ‘expected to, but not always able to’ be actively involved in care and treatment decisions. Integrating this concept in CYPMH may help to inform policy and practice for the implementation of SDM. These findings also provide insight for researchers to establish a foundation for developing future interventions using the affective appraisal approach

Feasibility and Acceptability of a Digital Intervention to Support Shared Decision-making in Children's and Young People's Mental Health: Mixed Methods Pilot Randomized Controlled Trial

BACKGROUND: Interventions to involve parents in decisions regarding children's and young people's mental health are associated with positive outcomes. However, appropriately planning effectiveness studies is critical to ensure that meaningful evidence is collected. It is important to conduct pilot studies to evaluate the feasibility and acceptability of the intervention itself and the feasibility of the protocol to test effectiveness. OBJECTIVE: This paper reports the findings from a feasibility and acceptability study of Power Up for Parents, an intervention to promote shared decision-making (SDM) and support parents and caregivers making decisions regarding children's and young people's mental health. METHODS: A mixed method study design was adopted. In stage 1, health care professionals and parents provided feedback on acceptability, usefulness, and suggestions for further development. Stage 2 was a multicenter, 3-arm, individual, and cluster randomized controlled pilot feasibility trial with parents accessing services related to children's and young people's mental health. Outcome measures collected data on demographics, participation rates, SDM, satisfaction, and parents' anxiety. Qualitative data were analyzed using thematic analysis. Google Analytics estimates were used to report engagement with the prototype. Outcomes from both stages were tested against a published set of criteria for proceeding to a randomized controlled trial. RESULTS: Despite evidence suggesting the acceptability of Power Up for Parents, the findings suggest that recruitment modifications are needed to enhance the feasibility of collecting follow-up data before scaling up to a fully powered randomized controlled trial. On the basis of the Go or No-Go criteria, only 50% (6/12) of the sites successfully recruited participants, and only 38% (16/42) of parents completed follow-up measures. Nonetheless, health care practitioners and parents generally accessed and used the intervention. Themes describing appearance and functionality, perceived need and general helpfulness, accessibility and appropriateness, and a wish list for improvement emerged, providing valuable information to inform future development and refinement of the intervention. CONCLUSIONS: Owing to the high attrition observed in the trial, proceeding directly to a full randomized controlled trial may not be feasible with this recruitment strategy. Nonetheless, with some minor adjustments and upgrades to the intervention, this pilot study provides a platform for future evaluations of Power Up for Parents. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN) 39238984; http://www.isrctn.com/ISRCTN39238984. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/14571