More Than Simply “Letting Go”: Stakeholder Perspectives on Parental Roles in Health Care Transition

The transfer from pediatric to adult health care for youth with special health care needs (YSHCN) is a vulnerable period. Parents play a pivotal role in the transition process, however, little is known about the specific ways they may support YSHCN in negotiating the transition to adult services. A qualitative supplementary secondary data analysis was conducted to explore stakeholders’ perceptions about parents’ roles in health care transition. Thematic analysis was used to analyze individual and focus group interviews. Four themes were identified: 1) Parents are crucial; 2) Changing roles; 3) Interdependence rather than independence; 4) One of many transitions. These themes may serve as the basis for planning future intervention studies directed at parents of YSHCN

La producción y diseminación del conocimiento: Una revisión de ámbitos de la investigación en salud basada en el arte

The use of arts-based research is shifting our understanding of what counts as evidence and highlights the complexity and multidimensionality involved in creating new knowledge. A scoping review of arts-based health research was undertaken to identify the breadth of peer-reviewed literature, summarize findings and identify gaps. A literature database search identified 71 original studies meeting our criteria for review. Studies were characterized by diverse art genres, designs, and substantive health topics. The arts in qualitative research were considered an opportunity for enhanced engagement of participants and audiences alike, a way to enrich communication and make research accessible beyond academia, and a method for generating data beyond the scope of most interview-based methods. Three central gaps were identified: the need for critical dialogue regarding the impact of arts-based health research, the need to focus on how the quality of such projects is judged, and the need to address the ethical challenges of engaging in this work. We suggest that the broadening of qualitative methodologies to include arts-based approaches offers more than simply adjuncts to typical data collection and dissemination approaches, and instead, presents different ways of knowing. We believe that this may be a significant moment in the field in which to question whether or not we are witness to a paradigmatic shift in the ways we approach inquiry into the social world and/or the emergence of an innovative set of techniques that researchers can draw upon to enhance traditional methods of conducting qualitative inquiry.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1201327Die Verwendung kunstbasierter Forschung hat unser Verständnis dessen, was evident ist, verändert, und die Komplexität und Multidimensionalität deutlicher werden lassen, die mit der Produktion neuen Wissens verbunden sind. In diesem Scoping-Review kunstbasierter Gesundheitsforschung inspizieren wir die Breite und Vielfalt begutachteter Veröffentlichungen in diesem Feld, skizzieren wichtige Ergebnisse und benennen künftige Forschungsrichtungen. Ausgehend von einer Literaturrecherche haben wir 71 Studien identifiziert, die unseren Kriterien entsprachen. Sie variieren mit Blick auf  Genres, Forschungsdesigns und behandelte Thematiken. Insgesamt folgen aus der Nutzung von künstlerischen Verfahren die Möglichkeit eines größeren Engagements sowohl der Forschungsteilnehmer/innen als auch des Publikums, die Chance, Kommunikation anzureichern und Forschung auch jenseits der Universitäten zugänglich zu machen und ein Zugang jenseits der zumeist üblichen Interviewverfahren.Drei zentrale Forschungslücken wurden identifiziert: die Notwendigkeit eines kritischen Dialogs zur Frage des Impacts von kunstbasierter Forschung, zu deren angemessener Evaluation und zu ethischen Herausforderungen, die mit diesem Ansatz verbunden sind. Wir gehen davon aus, dass die Öffnung qualitativer Methodologien für kunstbasierte Studien nicht einfach eine zusätzliche Möglichkeit der Datenerhebung und der Dissemination der Ergebnisse bedeutet, sondern neue Wege des Wissens bzw. des Umgangs mit Wissen beinhaltet. Dies bedeutet möglicherweise eine grundsätzlichere Neuorientierung im Sinne eines paradigmatischen Wandels in der Art und Weise, wie wir uns als Forschende der sozialen Welt nähern mit einem innovativen Set an Techniken, die wir nutzen können, um traditionelle qualitative Forschungsmethoden anzureichern.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs1201327El uso de la investigación basada en el arte está cambiando nuestro conocimiento de lo que cuenta como evidencia y resalta la complejidad y la multi-dimensionalidad involucrada al crear nuevo conocimiento. Se realizó una revisión de ámbitos de la investigación en salud basada en el arte para identificar el alcance de la literatura dictaminada por pares, resumir los resultados e identificar los huecos. Una búsqueda en la base de datos de la literatura identificó 71 estudios originales que cumplieron nuestros criterios de revisión. Los estudios fueron caracterizados por diversos géneros del arte, diseños y tópicos de salud sustantivos. Se considera a las artes en investigación cualitativa como una oportunidad para generar mayor participación de las audiencias y participantes, una forma de enriquecer la comunicación y hacer la investigación accesible más allá de la academia y un método de generar datos más allá de los ámbitos de la mayoría de métodos basados en entrevistas. Se identificaron tres huecos centrales: la necesidad del dialogo crítico en cuanto el impacto de la investigación basada en el arte, la necesidad de enfocarnos en como se juzga la calidad de estos proyectos y la necesidad de hacer frente a los desafíos éticos de participación en este trabajo. Sugerimos que la ampliación de las metodologías cualitativas para incluir enfoques basados en el arte ofrece más que simplemente adjuntarse a colecciones típicas de datos y enfoques de diseminación, pues presenta diferentes formas de conocer. Creemos que esto puede ser un momento significante en el campo en el que preguntar si o no somos testigos de un cambio paradigmático en las formas en que aproximamos a la investigación en el mundo social y/o la emergencia de una serie de técnicas innovadoras que los investigadores pueden aprovechar para mejorar métodos tradicionales de conducir investigación cualitativa.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs120132

The production and dissemination of knowledge: a scoping review of arts-based health research

Die Verwendung kunstbasierter Forschung hat unser Verständnis dessen, was evident ist, verändert, und die Komplexität und Multidimensionalität deutlicher werden lassen, die mit der Produktion neuen Wissens verbunden sind. In diesem Scoping-Review kunstbasierter Gesundheitsforschung inspizieren wir die Breite und Vielfalt begutachteter Veröffentlichungen in diesem Feld, skizzieren wichtige Ergebnisse und benennen künftige Forschungsrichtungen. Ausgehend von einer Literaturrecherche haben wir 71 Studien identifiziert, die unseren Kriterien entsprachen. Sie variieren mit Blick auf  Genres, Forschungsdesigns und behandelte Thematiken. Insgesamt folgen aus der Nutzung von künstlerischen Verfahren die Möglichkeit eines größeren Engagements sowohl der Forschungsteilnehmer/innen als auch des Publikums, die Chance, Kommunikation anzureichern und Forschung auch jenseits der Universitäten zugänglich zu machen und ein Zugang jenseits der zumeist üblichen Interviewverfahren.Drei zentrale Forschungslücken wurden identifiziert: die Notwendigkeit eines kritischen Dialogs zur Frage des Impacts von kunstbasierter Forschung, zu deren angemessener Evaluation und zu ethischen Herausforderungen, die mit diesem Ansatz verbunden sind. Wir gehen davon aus, dass die Öffnung qualitativer Methodologien für kunstbasierte Studien nicht einfach eine zusätzliche Möglichkeit der Datenerhebung und der Dissemination der Ergebnisse bedeutet, sondern neue Wege des Wissens bzw. des Umgangs mit Wissen beinhaltet. Dies bedeutet möglicherweise eine grundsätzlichere Neuorientierung im Sinne eines paradigmatischen Wandels in der Art und Weise, wie wir uns als Forschende der sozialen Welt nähern mit einem innovativen Set an Techniken, die wir nutzen können, um traditionelle qualitative Forschungsmethoden anzureichern.The use of arts-based research is shifting our understanding of what counts as evidence and highlights the complexity and multidimensionality involved in creating new knowledge. A scoping review of arts-based health research was undertaken to identify the breadth of peer-reviewed literature, summarize findings and identify gaps. A literature database search identified 71 original studies meeting our criteria for review. Studies were characterized by diverse art genres, designs, and substantive health topics. The arts in qualitative research were considered an opportunity for enhanced engagement of participants and audiences alike, a way to enrich communication and make research accessible beyond academia, and a method for generating data beyond the scope of most interview-based methods. Three central gaps were identified: the need for critical dialogue regarding the impact of arts-based health research, the need to focus on how the quality of such projects is judged, and the need to address the ethical challenges of engaging in this work. We suggest that the broadening of qualitative methodologies to include arts-based approaches offers more than simply adjuncts to typical data collection and dissemination approaches, and instead, presents different ways of knowing. We believe that this may be a significant moment in the field in which to question whether or not we are witness to a paradigmatic shift in the ways we approach inquiry into the social world and/or the emergence of an innovative set of techniques that researchers can draw upon to enhance traditional methods of conducting qualitative inquiry.El uso de la investigación basada en el arte está cambiando nuestro conocimiento de lo que cuenta como evidencia y resalta la complejidad y la multi-dimensionalidad involucrada al crear nuevo conocimiento. Se realizó una revisión de ámbitos de la investigación en salud basada en el arte para identificar el alcance de la literatura dictaminada por pares, resumir los resultados e identificar los huecos. Una búsqueda en la base de datos de la literatura identificó 71 estudios originales que cumplieron nuestros criterios de revisión. Los estudios fueron caracterizados por diversos géneros del arte, diseños y tópicos de salud sustantivos. Se considera a las artes en investigación cualitativa como una oportunidad para generar mayor participación de las audiencias y participantes, una forma de enriquecer la comunicación y hacer la investigación accesible más allá de la academia y un método de generar datos más allá de los ámbitos de la mayoría de métodos basados en entrevistas. Se identificaron tres huecos centrales: la necesidad del dialogo crítico en cuanto el impacto de la investigación basada en el arte, la necesidad de enfocarnos en como se juzga la calidad de estos proyectos y la necesidad de hacer frente a los desafíos éticos de participación en este trabajo. Sugerimos que la ampliación de las metodologías cualitativas para incluir enfoques basados en el arte ofrece más que simplemente adjuntarse a colecciones típicas de datos y enfoques de diseminación, pues presenta diferentes formas de conocer. Creemos que esto puede ser un momento significante en el campo en el que preguntar si o no somos testigos de un cambio paradigmático en las formas en que aproximamos a la investigación en el mundo social y/o la emergencia de una serie de técnicas innovadoras que los investigadores pueden aprovechar para mejorar métodos tradicionales de conducir investigación cualitativa

Primary care during the transition to adult care for adolescents involved with pediatric specialty services: a scoping review protocol

Abstract Background Of the 15–20% of youth in North America affected by a chronic health condition (e.g., type 1 diabetes, cystic fibrosis) and/or mental health or neurodevelopmental disorder (e.g., depression, eating disorder, Attention Deficit-Hyperactivity Disorder), many often require lifelong specialist healthcare services. Ongoing primary care during childhood and into young adulthood is recommended by best practice guidelines. To date, it is largely unknown if, how, and when primary care physicians (PCPs; such as family physicians) collaborate with specialists as AYAs leave pediatric-oriented services. The proposed scoping review will synthesize the available literature on the roles of PCPs for AYAs with chronic conditions leaving pediatric specialty care and identify potential benefits and challenges of maintaining PCP involvement during transition. Methods Arksey and O’Malley’s original scoping review framework will be utilized with guidance from Levac and colleagues and the Joanna Briggs Institute. A search of databases including MEDLINE (OVID), EMBASE, PsycINFO, and CINAHL will be conducted following the development of a strategic search strategy. Eligible studies will (i) be published in English from January 2004 onwards, (ii) focus on AYAs (ages 12–25) with a chronic condition(s) who have received specialist services during childhood, and (iii) include relevant findings about the roles of PCPs during transition to adult services. A data extraction tool will be developed and piloted on a subset of studies. Both quantitative and qualitative data will be synthesized. Discussion Key themes about the roles of PCPs for AYAs involved with specialist services will be identified through this review. Findings will inform the development and evaluation of a primary-care based intervention to improve transition care for AYAs with chronic conditions

Family-based treatment with transition age youth with anorexia nervosa: a qualitative summary of application in clinical practice.

BACKGROUND: 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. METHODS: Using content analysis, seven individual interviews and six focus groups were conducted with 34 clinicians from specialized Eating Disorder Treatment programs across Ontario, Canada. RESULTS: 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. CONCLUSIONS: 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

Family-based treatment with transition age youth with anorexia nervosa: a qualitative summary of application in clinical practice

Abstract Background 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. Methods Using content analysis, seven individual interviews and six focus groups were conducted with 34 clinicians from specialized Eating Disorder Treatment programs across Ontario, Canada. Results 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. Conclusions 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

“They go hand in hand”: a patient-oriented, qualitative descriptive study on the interconnectedness between chronic health and mental health conditions in transition-age youth

Abstract Background Transition-age youth (TAY) with chronic health conditions frequently experience co-occurring mental health conditions. However, little is known about the perspectives of TAY with co-occurring diagnoses preparing to exit pediatric health and mental health services. Research is needed to understand the impact of a mental health condition on transition readiness and self-management in TAY with chronic health conditions. Methods TAY (aged 16–20 years) with co-occurring chronic health and mental health conditions were recruited in Alberta, Canada. Nine semi-structured individual interviews were completed by phone or videoconference, and transcribed verbatim. Guided by qualitative description, we analyzed the data using thematic analysis in partnership with five young adults with lived experience in the health/mental health systems. Results Participants shared their experiences living with simultaneous physical and mental health concerns and preparing for transition to adult care. Our analysis revealed three overarching themes: 1) “they’re intertwined”: connections between chronic health and mental health conditions in TAY, 2) impact of mental health on transition readiness and self-management, and 3) recommendations for service provision from the perspectives of TAY. Conclusions Our findings highlighted the myriad ways in which physical and mental health are connected as TAY prepare for service transitions using specific examples and powerful metaphors. TAY endorsed the importance of providers discussing these connections in routine clinical care. Future research should involve co-designing and evaluating educational material addressing this topic with diverse TAY, caregivers, and service providers

Personal Recovery Among People at Risk for Developing Serious Mental Health Problems:A Qualitative Systematic Review

OBJECTIVE: Personal recovery refers to a person's pursuit of a full, meaningful life despite the potentially debilitating impact of a mental illness. An evidence base describing personal recovery among people at risk for developing a mental illness is lacking, limiting the potential for mental health services to support personal recovery. To address this gap, the authors synthesized the extant research describing personal recovery among people at risk for developing a mental illness.METHODS: A systematic search of several literature databases (MEDLINE, Embase, APA PsycInfo, Web of Science Core Collection, and Cochrane Library) was conducted to retrieve qualitative and case studies and first-person accounts. The Joanna Briggs Institute guidelines for systematic reviews were followed. Included studies reported on participants at variable risk for developing a schizophrenia spectrum, bipolar, major depressive, or borderline personality disorder. Articles were retrieved through a librarian-assisted search and through use of additional strategies (e.g., expert consultation). Abstracts were screened by the research team, and themes were developed by using thematic synthesis.RESULTS: The 36 included articles were synthesized, and six themes were generated: difficulties and challenges; establishing an understanding of, and finding ways to cope with, one's mental health challenges; reestablishing a sense of agency and personhood; receiving support from people and services, as well as restoring relationships; reestablishing hope, meaning, and purpose; and overcoming stigma and destigmatizing mental illness in others.CONCLUSIONS: These findings provide a conceptual foundation that can guide future research on personal recovery and clinical interventions that foster it among people at risk for mental illness.</p

Health care stakeholder perspectives regarding the role of a patient navigator during transition to adult care

Abstract Background 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. Methods 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. Results 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. Conclusions 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