The transition from paediatric to adult health care (i.e., ‘health care transition’) poses many challenges for youth with medical complexity (YMC) and their families. YMC need specific approaches to supporting transition, tailored to individual youth and family contexts. In this study, we examine the contextual factors influencing families' transition experiences and describe their recommendations for improving the experience.
We conducted a qualitative explanatory case study in Ontario, Canada. We completed 21 interviews with 17 participants (11 mothers, 2 fathers, 2 YMC, 2 siblings) from 11 families of YMC. Six YMC (55%) were under 18 years of age (pre-transfer) and five (45%) were aged 18 years and older (post-transfer). Analytic approaches included reflexive thematic analysis and directed content analysis.
Participants described how the interplay of personal and environmental factors impacted their transition experiences. Recommendations for health care providers focused on providing instrumental and psychological support, advocacy and care continuity. Families expressed a need for better access to information and support from primary care providers. System-level recommendations included streamlining transition processes, improving adult health care services and expanding community supports. A socioecological model is presented to guide health care providers and decision makers in assessing and tackling the challenges faced by YMC and their families during transition.
Findings highlight the complexity and scope of issues surrounding the transition to adult care for YMC in Ontario, with evidence of major gaps in services across multiple sectors and settings. Ongoing efforts are needed to move evidence into practice and advocate for more equitable and responsive care for YMC during the transition and beyond.
The research team included two parent co-researchers with lived experience, who contributed to protocol refinement, funding acquisition, recruitment, findings interpretation and ongoing knowledge translation efforts.
In this viewpoint we highlight a gap in the literature relating to the involvement of professional stakeholders in healthcare evaluation research.
Using the Dementia—PersonAlised Care Team (D-PACT) project as an example, we illustrate how professional stakeholder work can serve various functions, from understanding commissioning and policy context to contributing to detail of intervention components.
We argue that identifying these project-specific functions can help researchers to effectively plan when, how and for whom they will engage in professional stakeholder work across the course of an evaluation. In addition, we call for further evidence-based guidance and sufficient allocation of resources (provided by those funding research projects) to support effective stakeholder work.
Such support will not only enhance evaluation findings but also promote continued learning on best practice for professional stakeholder work.
Public and patient involvement contributors were involved in the main D-PACT study design, development of data collection tools and interpretation of study findings.
Pain is prevalent across the lifespan and contributes to significant societal and economic burdens. The public often holds misconceptions about pain and pain management. Despite this, there are no well-resourced public health initiatives delivering information about pain and pain management to the public. Adolescence is an opportune time to educate the public about pain. Health interventions designed for adolescents should reflect their understanding, beliefs and experiences; however, no studies explore this in non-clinical populations of adolescents. We aimed to explore adolescents' understanding, experiences and beliefs about pain to inform the development of a school-based pain education module.
We conducted semi-structured interviews with 25 adolescents in grades 7–10 (ages 11–16) attending Australian secondary schools. Interviews were conducted on video-conferencing software, audio-recorded, transcribed verbatim and analysed using Framework Analysis.
We generated three themes: (i) physical and psychological pain are distinct, (ii) psychological and contextual factors influence how someone feels or reacts to physical pain and (iii) physical pain matters if it impacts participation in meaningful activities.
Adolescents' understanding and beliefs about pain do not always align with current scientific understanding of pain. School-based pain education programmes should target these areas of misalignment. Addressing adolescents' misconceptions about pain through pain education could also create a more supportive school environment for adolescents experiencing pain. Interactive approaches to learning, such as discussions that encourage adolescents to reflect on their experiences of pain, could be a promising avenue for pain education.
Two co-authors are part of the study population and contributed to the study design and analysis. Their input ensured the interview guide was appropriate for the target population and provided an adolescent perspective on the findings. They were remunerated for their time in accordance with consumer involvement guidelines.
Few pregnant women in France wrote birth plans as in many other countries. The literature stresses the heterogeneity of birth plan content, which limits the utility of assessing the effects of birth plans on women's experience of childbirth. This study aimed to obtain a French national consensus on the structure and content of birth plans.
A multidisciplinary steering committee was established. An electronic modified Delphi study was conducted to develop a structure and content for birth plans between November 2022 and June 2023. During three Delphi consensus rounds, panellists, including perinatal health care professionals and user representatives, were asked to rate individually and independently each proposed section and subsection formulation of the birth plan for its appropriateness. An external board assessed the understandability of the final birth plan's preamble and content.
The steering committee proposed 103 formulations corresponding to items to be covered in a birth plan, categorized into 8 sections and 30 subsections, for evaluation in the Delphi rounds. The first round was completed by 42 panellists (mainly midwives), the second by 39, and the third by 36. Finally, the steering committee approved the final components of the structured birth plan in 8 sections and 19 subsections, after its reviewing by the 21 members of the external board.
A French national Delphi process, after three rounds and validation by an external board, made it possible to reach a consensus on the structure and content of a birth plan in 8 sections and 19 subsections.
User representatives were included as experts in the Delphi rounds, and in the external board to approve the final version of the structured birth plan.
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