Dataset Information

Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study.

ABSTRACT: Background and Aims:When youth with diabetes transition from pediatric to adult diabetes care, they are at high risk for loss to follow up and worsening glucose control. We aimed to gain insight on how to improve the transition of youth with type 1 diabetes from pediatric to adult diabetes care from the patients' and parents' perspective. Methods:We conducted focus groups in youth with type 1 diabetes in transition from pediatric to adult diabetes care and their parents, in Calgary, Alberta, between June and August 2014. Eligibility criteria included: (a) type 1 diabetes; (b) aged 15 to 25?years; (c) have or had received care at the pediatric hospital; and, (d) either pre or post-transfer; or, (e) parents of recently transferred youth. Purposive sampling was used, and the theoretical framework used was the Integrated Behaviour Model. Participants were asked about positive, negative, or challenging experiences related to diabetes and transition, solutions to challenges, and tools and strategies to improve and better support transition. Thematic analysis was conducted after focus groups were recorded and transcribed. Results:Three focus groups were conducted: pre-transfer youth with diabetes (4 females and 3 males; median age 17.5?years, IQR 1.3?years); post-transfer young adults with diabetes (2 females and 2 males; median age 23.5?years, IQR 1.2?years); and parents of recently transferred young adults with diabetes (n = 3). Main themes were: (a) communication technology; (b) the need for more transition and diabetes education and preparation during transition; and, (c) the importance and need for social and peer support. Conclusion:This study describes specific areas that may improve diabetes transfer and transition from pediatric to adult diabetes care. This information can help inform clinical care delivery for transition and the development of programs, strategies, and interventions to improve transition care.

SUBMITTER: Butalia S

PROVIDER: S-EPMC7410016 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study.

Butalia Sonia S McGuire K Ashlee KA Dyjur David D Mercer Julia J Pacaud Daniele D

Health science reports 20200806 3

<h4>Background and aims</h4>When youth with diabetes transition from pediatric to adult diabetes care, they are at high risk for loss to follow up and worsening glucose control. We aimed to gain insight on how to improve the transition of youth with type 1 diabetes from pediatric to adult diabetes care from the patients' and parents' perspective.<h4>Methods</h4>We conducted focus groups in youth with type 1 diabetes in transition from pediatric to adult diabetes care and their parents, in Calgar ...[more]

PMID: 32782975

Similar Datasets

Project description:BACKGROUND:Adolescence and young adulthood is a vulnerable time during which young people experience many development milestones, as well as an increased incidence of mental illness. During this time, youth also transition between Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS). This transition puts many youth at risk of disengagement from service use; however, our understanding of this transition from the perspective of youth is limited. This systematic review aims to provide a more comprehensive understanding of youth experiences of transition from CAMHS to AMHS, through a qualitative thematic synthesis of the extant literature in this area. METHOD:Published and unpublished literature was searched using keywords targeting three subject areas: Transition, Age and Mental Health. Studies were included if they qualitatively explored the perceptions and experiences of youth who received mental health services in both CAMHS and AMHS. There were no limitations on diagnosis or age of youth. Studies examining youth with chronic physical health conditions were excluded. RESULTS:Eighteen studies, representing 14 datasets and the experiences of 253 unique service-users were included. Youth experiences of moving from CAMHS and AMHS are influenced by concurrent life transitions and their individual preferences regarding autonomy and independence. Youth identified preparation, flexible transition timing, individualized transition plans, and informational continuity as positive factors during transition. Youth also valued joint working and relational continuity between CAMHS and AMHS. CONCLUSIONS:Youth experience a dramatic culture shift between CAMHS and AMHS, which can be mitigated by individualized and flexible approaches to transition. Youth have valuable perspectives to guide the intelligent design of mental health services and their perspectives should be used to inform tools to evaluate and incorporate youth perspectives into transitional service improvement. TRIAL REGISTRATION:Clinical Trial or Systematic Review Registry: PROSPERO International Prospective Register of Systematic Reviews CRD42014013799 .

Project description:BackgroundMalawi has made progress in increasing its overall modern contraceptive prevalence rate since 2000, resulting in a dramatic reduction in its total fertility rate. However, youth, 15-24 years, have not had the same successes. Teenage pregnancies are on the rise and little progress has been made in reducing unmet need for family planning among youth. With two-thirds of the population under the age of 25 and with Malawi's rapid population growth, reducing unmet need for family planning among youth remains a priority for the government's reproductive health agenda. To further explore this situation, we conducted a qualitative study to explore the perspectives of youth and adults about the drivers and barriers to youth accessing family planning in Malawi and their ideas to improve services.MethodsWe conducted 34 focus group discussions with youth aged 15-24 and parents or legal guardians of female youth in 3 districts in Malawi. Focus groups were translated and transcribed. Data was input into Dedoose and analyzed using a thematic framework to identify broader patterns and themes.ResultsYouth participants felt motivated to use family planning to protect themselves from sexually transmitted diseases and to prevent unwanted pregnancies. Females focused on the consequences of unplanned pregnancies and believed family planning services were targeted primarily at them, while males thought family planning services targeted males and females equally. Barriers to youth accessing family planning included contraception misconceptions, the costs of family planning services, and negative attitudes. Parents had mixed views on family planning. While many parents acknowledged they could play a role in supporting youth, most said they are reluctant to support youth using family planning. Participants said improving counseling services, integrating family planning services and education within school curricula, and utilizing youth clubs could improve family planning services for youth.ConclusionsPolicy makers and program implementers should consider the diverse preferences among youth and parents and continue seeking their input when designing policies and programs. Youth clubs and school-based services were among the most common suggestions. However, the effectiveness of youth clubs and school-based initiatives to increase contraceptive use among youth in Malawi is not clear.

Project description:BackgroundIncreasing numbers of young people with perinatally acquired HIV are surviving to adulthood. When they come of age, they leave pediatric services in which they were followed and have to be transferred to the adult health care system. Difficulties in adaptation to adult care and the numbers of young people lost to follow up after transfer to adult care have been reported. This transition phase and their retention in adult care are crucial in maintaining the clinical status of these young with HIV in adulthood. Our study aimed to explore how HIV professionals working in adult care perceive and adapt their practices to young people in transition.MethodsQualitative interviews were conducted with 18 health and social services professionals in hospitals or patient associations in France. A thematic analysis was conducted.ResultsAdult care professionals were found to be making a distinction between these young people and their patients who were infected during adulthood. On the basis of the healthcare teams' experience, a simplified categorization of these young people into four levels can be used: those "who have everything good"; those who have some deficiencies that must be addressed; those "who have everything bad"; and those lost to follow up. Professionals interviewed highlighted the difficulties they encountered with young people in transition. Three types of problematic situations were identified: problems of acceptance of the disease; communication problems; and problems of disorientation in the new care environment.ConclusionsDespite the lack of specific training or national policy recommendations for the integration of young people with perinatally acquired HIV into adult services, all the adult healthcare teams interviewed tried to adapt their practice to this population. The results suggested that professional involvement during transition should depend on the characteristics of the patient, not be limited to a single transition model and that a dedicated structure for transition care is not appropriate for all young people.

Dataset Information

Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study.

Publications

Youth with diabetes and their parents' perspectives on transition care from pediatric to adult diabetes care services: A qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets