Abstract
Background: The majority of existing shared decision making (SDM) models are yet to explicitly account for emotion as an influencing factor to the SDM process. This study aimed to explore the role of parents' and carers' emotional experiences as a concept that has implications for SDM in children and young people's mental health (CYPMH) settings.Methods: A social constructivist grounded theory approach, analyzing data from focus groups (n = 4) and semi-structured interviews (n = 33) with parents and healthcare professionals, was undertaken. Participants were identified and selected at CYPMH sites and through social media platforms or in-person advertising as part of a larger feasibility trial. Interviews and focus groups were audio-recorded and transcribed verbatim. Thematic analysis moved from open to focused coding.Results: The majority of the sample consisted of mothers of adolescent girls. Healthcare professionals had an average of 7.54 (SD = 6.24) years of work experience in CYPMH outpatient capacities. Findings suggested that parents are “expected to, but not always able to” engage in SDM. Themes and subthemes described an affective-appraisal SDM process capturing: (1) views and experiences of SDM, (2) parents' emotional states, (3) the influence of emotions on SDM, and (4) key support systems accessed. The emerging affective-appraisal framework highlighted that negative emotional states hindered parents' active involvement in SDM, and positive emotions encouraged involvement in SDM.Conclusion: The current findings describe an SDM model specific to CYPMH. This new understanding contributes to addressing a possible theory to practice gap opening new challenges and opportunities for academic enquiry.
Highlights
Shared decision making (SDM) has been broadly defined as a cognitive, emotional, and relational process where service providers and service users collaborate to derive care and treatment decisions [1]
This study extends on what is already known about the “emotional roller coaster” that parents of children with mental health difficulties experience [30, 31], suggesting implications for an effective SDM process
The current findings suggest a two-way direction that emotions may be influencing parents’ involvement in SDM and vice versa
Summary
Shared decision making (SDM) has been broadly defined as a cognitive, emotional, and relational process where service providers and service users collaborate to derive care and treatment decisions [1]. Researchers highlight that the active participation from all parties (i.e., parent, child, and practitioner) is required for the decision making process to be regarded as SDM [11]. Other researchers accept the inclusion of the child, the caregiver, or both, with the possibility of including other stakeholders [12] These inconsistencies highlight a need to address gaps between theory and practice, suggesting further explorations to ensure appropriate decision-makers are included if implementing SDM in pediatric care [13, 14]. Researchers agree that effective SDM requires active participation from service users [15] One such framework for youth SDM proposes [1] setting the stage for youth shared decision making, [2] facilitating youth shared decision making, and [3] supporting youth shared decision making [16]. This study aimed to explore the role of parents’ and carers’ emotional experiences as a concept that has implications for SDM in children and young people’s mental health (CYPMH) settings
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