Background: Mixed methods research studies continue to pervade the field of health care, where pragmatism as a research paradigm and patient‐oriented research (POR) as an engagement strategy are combined to strengthen the process and outcomes of the research. Pragmatists use the most appropriate research methods to address issues at hand, where complex social problems need multipronged approaches. As an emerging healthcare research strategy, POR actively engages individuals with lived experience across all stages of the research process. While POR continues to garner attention within mixed‐methods research designs, there is a paucity of literature that considers POR in relation to pragmatism.Objective: As POR grows in popularity within the field of health care, there is a need to explore the theoretical and epistemological alignment with pragmatism and the implications to research.Methods: To address this need, we provide a critical review of the literature to examine the synergies between POR and pragmatism, and argue for the adoption of pragmatism as a paradigm for conducting POR.Main Results: This article begins with a discussion of the philosophical underpinnings informing the pragmatic paradigm. It then identifies key alignments between POR and pragmatism across three intersecting concepts: democratic values, collaborative approaches to problem‐solving and the pursuit of social justice.Discussion and Conclusions: Reflecting on our experiences engaging with patient partners in a mixed‐methods POR study titled READY2Exit, we illustrate the relevance of pragmatism to POR by applying these concepts to practice. Implications and considerations for conducting POR within the pragmatic paradigm are also described.Patient or Public Contribution: This paper provides a critical review of the literature and did not directly involve patients or the public. The authors reflected on their experiences collaborating with five young adult patient partners in the READY2Exit study (case exemplar described in this article) to demonstrate the relevance of the pragmatic paradigm to POR. We acknowledge and thank the young adult patient partners for their contributions to the research, for encouraging us to think critically about patient engagement in research, and for sharing their experiences.
Family based treatment (FBT) has been empirically investigated in adolescents between the ages of 12 and 19 years of age. Although parental control over eating symptoms and the weight gain process are temporary and necessary due to serious medical complications, FBT may be developmentally inappropriate when working with older adolescents. To date, there are no studies identifying how the principles of this model are used differentially across different stages of adolescence. This study aimed to identify how clinicians informed by FBT employ this model with transition age youth (TAY) (16–21) with an eating disorder. Using content analysis, seven individual interviews and six focus groups were conducted with 34 clinicians from specialized Eating Disorder Treatment programs across Ontario, Canada. Participants consistently reported modifying FBT to increase its developmental appropriateness with TAY in the following ways: working more collaboratively with the patient, increasing individual time spent with the patient prior to the family meeting, providing greater opportunities for the individual to practice eating without parental support and introducing relapse prevention in the latter phase of the treatment. In all adaptations of the model, participants in focus groups and individual interviews cited the age of the individual with the eating disorder, their level of autonomy and independence in all areas of their lives, and their pending transfer of care from paediatric to adult eating disorder programs as main factors that influenced the modification of FBT with TAY. While adaptations were made across all three phases of FBT, adherence to the model progressively declined over the course of treatment with adaptations increasing significantly in the later phases. Future research is needed to evaluate the effectiveness of an adapted version of FBT with TAY.
Transition to adult care represents a vulnerable period for young people with special health care needs as they navigate multiple life transitions and developmental issues. Patient navigators are a promising intervention designed to facilitate the transfer from pediatric to adult care. However, consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators. Fundamental qualitative description was utilized in this study to identify perceptions from health care providers about implementing a patient navigator service for young people with special health care needs in transition to adult care. A purposive sample of health care providers with a variety of backgrounds within pediatric and adult systems in Alberta, Canada were recruited. Semi-structured interviews with participants were analyzed using thematic analysis to inductively identify perceptions regarding the role of patient navigators. A total of 43 health care providers highlighted the need for a patient navigator service to encompass 4 key stages for young people with special health care needs transitioning from pediatric to adult services: (1) identification of young people with special health care needs and families requiring support, (2) preparation for transfer, (3) health system navigation and, (4) post-transfer support. The results of this qualitative study provide guidance for the development of patient navigator interventions for young people with special health care needs, as well as provide support for current transition services offered across Canada.
31 July 2022 in Child: Care, Health and Development
Background: Among youth with psychiatric disorders, the transition from child to adult mental health services is a period of vulnerability to discontinuous care and service disengagement. Regular assessment of transition readiness has been identified as a core component of transition planning, contributing to successful care transitions. The Transition Readiness Assessment Questionnaire (TRAQ) 5.0 is a 20‐item questionnaire that measures transition readiness in youth preparing to transition to adult care. Although the TRAQ has been validated and used across many health settings, it has not been validated in youth with primarily mental health concerns. The objective of this study was to validate the TRAQ for use among youth accessing mental health services.Methods: This study used the Longitudinal Youth in Transition Study baseline cohort, which consists of 237 clinically referred youth (aged 16–18 years) receiving outpatient mental health treatment. Psychometric evaluation of the TRAQ 5.0 included confirmatory factor analysis (CFA), assessment of internal consistency, testing convergent validity using the Dimensions of Emerging Adulthood (IDEAS) and Difficulty in Emotional Regulation (DERS) scales, criterion validity using a question on whether the participant had talked about transition with their clinician and known‐group testing based on age.Results: The CFA indicated adequate fit of the five‐factor TRAQ structure. The overall scale (=.86) and three of the subscales demonstrated adequate internal consistency. As hypothesized, overall TRAQ scores were higher for youth who had discussed transition and those aged 18. Small correlations were found between the overall TRAQ score and measures of developmental maturity (IDEAS) and emotional awareness (DERS); however, certain subscales did not demonstrate correlation with these constructs.Conclusions: The TRAQ 5.0 appears to be valid tool to assess the transition readiness of youth in outpatient mental health services. Additional work needs determine whether findings are similar among specific mental health conditions, including substance use disorders and psychotic disorders.
Background: A large proportion of youth with chronic conditions have mental health comorbidities. However, the effect of these comorbidities on paediatric–adult transition readiness, and the relevance of widely used tools for measuring transition readiness, are unknown.Objective: The objectives of this study were to describe and explore the transition readiness of youth with co‐occurring chronic health and mental health conditions using a combination of quantitative data obtained from participants completing the Transition Readiness Assessment Questionnaire (TRAQ) and qualitative data.Design and Participants: A three‐phase sequential explanatory mixed methods design was employed, with the qualitative strand taking priority. First, the TRAQ scores (range 1–5) of youth with co‐occurring conditions (n = 61) enroled in a multisite randomized controlled trial were measured, followed by qualitative interviews with a sample of youth (n = 9) to explain the quantitative results. Results from both strands were then integrated, yielding comprehensive insights.Results: Median TRAQ scores ranged from 2.86 on the appointment keeping subscale to 5.00 on the talking with providers subscale. The qualitative results uncovered the complexities faced by this group concerning the impact of a mental health comorbidity on transition readiness and self‐management skills across TRAQ domains. The integrated findings identified a diverse and highly individualized set of strengths and challenges amongst this group that did not align with overarching patterns as measured by the TRAQ.Conclusions: This mixed methods study generated novel understandings about how youth with co‐occurring conditions develop competencies related to self‐care, self‐advocacy and self‐management in preparation for paediatric–adult service transitions. Results demonstrated the assessment of transition readiness using a generic scale does not address the nuanced and complex needs of youth with co‐occurring chronic health and mental health conditions. Our findings suggest tailoring transition readiness practices for this group based on youths' own goals, symptoms, coping mechanisms and resources.Patient or Public Involvement: This study was conducted in collaboration with five young adult research partners (YARP) with lived experience transitioning from paediatric to adult health/mental health services. The YARP's contributions across study phases ensured the perspectives of young people were centred throughout data collection, analysis, interpretation and presentation of findings. All five YARP co‐authored this manuscript.