Dataset Information

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

ABSTRACT: Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus groups were conducted with 14 adolescents with SCD (Mean age = 14.6 years, SD = 1.9) and 20 caregivers (Mean age = 43.2 years, SD = 9.3) to gather perspectives about transition to adult care, current transition program materials and recommendations for future programming. Four themes emerged: (a) transition skills and knowledge needs, (b) change in health care responsibility, (c) concerns with adult SCD care, and (d) useful transition readiness strategies and resources. The findings of this study were used to develop Web based educational modules, experiential transition skills learning, and an adolescent and caregiver hematology support group. Findings highlight the need to conduct periodic readiness assessments, provide opportunities and scaffolding to learn skills based on readiness level, and help build social support networks to encourage and facilitate learning.

SUBMITTER: Porter JS

PROVIDER: S-EPMC6532654 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Porter Jerlym S JS Lopez Alana D AD Wesley Kimberly M KM Magdovitz-Frankfurt Paige P Anderson Sheila M SM Cole Audrey R AR Boggs Jacklyn J Hankins Jane S JS

Clinical practice in pediatric psychology 20171201 4

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus ...[more]

PMID: 31131180

Similar Datasets

Project description:Background: There is a dearth of research that identifies pediatric to adult health care transition practices that yield positive outcomes for young people with eating disorders (EDs). Further, adolescent and caregiver perspectives are poorly understood and underrepresented in the literature. The purpose of this study, focused on the impending transition from pediatric to adult health services, was twofold: (a) to identify adolescent and caregiver perspectives of barriers and facilitators of a successful transition for adolescents with EDs; and (b) to understand adolescent and caregiver suggestions of interventions for a successful transition. Design/Method: We recruited five adolescents with EDs who were about to be transferred out of pediatric care as well as their caregivers. We conducted a qualitative study in accordance with the principles of interpretive description. Through conducting semi-structured, in-depth interviews with adolescents and caregivers, we investigated their knowledge about health system transitions and anticipated experiences. We identified participants' perceptions of barriers and facilitators regarding a successful transition, as well as their recommendations to improve the transfer of care. Results: Participants possessed a limited understanding of transition processes despite the fact that they were about to be transferred to adult care. From our analyses, the following themes were identified as barriers during the transition process: re-explaining information to adult healthcare providers, lack of professional support while waiting for uptake into the adult health system, and late timing of transition of care discussions. Both adolescents and caregivers expressed that involvement of parents and the pediatric healthcare team helped to facilitate a successful transfer of care. In addition, participants expressed that the implementation of a Transition Coordinator and Transition Passport would be helpful in facilitating a seamless transfer between systems of care. Discussion: These findings demonstrate a significant gap in the system and highlight the importance of developing interventions that facilitate a successful transition. The themes that emerged from this study can inform the development of interventions to facilitate a coordinated transition from pediatric to adult health services for adolescents with EDs.

Project description:BackgroundLipodystrophy comprises a group of conditions characterized by loss of functional adipose tissue, resulting in severe metabolic complications and a complex range of symptoms.ObjectiveThis study sought to gain a holistic understanding of the impact of congenital or non-human immunodeficiency virus acquired lipodystrophies on the quality of life of patients and their caregivers and to capture the impact of lipodystrophy on quality of life using a standard instrument.MethodsTen patients with lipodystrophies and five caregivers from the USA and UK were recruited through convenience sampling and interviewed using a semi-structured questionnaire containing open-ended questions about disease symptoms and attributes and numerical rating scales to prompt discussion of symptom prevalence and impact. After the interview, participants filled out the 36-Item Short Form (SF-36) survey instrument. Conventional conceptual content analysis methods were used to analyze the anonymized transcripts.ResultsFour concepts were developed: diagnostic journey and symptom management, burden of disease, healthcare resource utilization, and support and advocacy. Participants described lengthy diagnostic journeys and frequent interactions with healthcare systems. Many participants became experts on lipodystrophy through the diagnostic journey and described difficulties accessing effective treatment, even after diagnosis. Both patients and caregivers emphasized the ongoing burden of living with lipodystrophy and the accompanying sense of isolation. Participants turned to disease-specific support groups to cope, engaging in knowledge sharing with other patients and caregivers and developing friendships based on shared experiences. Ten participants completed the SF-36, with a mean (standard deviation) SF-36 score of 0.6 (0.2).ConclusionsCurrently, there are no qualitative studies that describe the experiences of patients with lipodystrophy and their caregivers. While additional research is needed, educational work like this study is a promising first step that could lead to early diagnosis and access to treatment and support.

Dataset Information

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Publications

Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure