An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

Abstract

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress-management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition-specific components. The workshop was designed as a compact 2-day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self-management and empowerment increase the preparedness for transition.

Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: PAM® 13 for Adolescents

“…The psychometric testing of the PAM ® 13 for Adolescents was embedded in two cooperating longitudinal studies in a controlled trial of a generic group patient education program, based on a framework of empowerment, for adolescents with chronic conditions during their transition to adult care (Bomba, Herrmann‐Garitz, Schmidt, Schmidt, & Thyen, ; Schmidt, Herrmann‐Garitz, Bomba, & Thyen, ).…”

Transição dos cuidados de pacientes com doenças crônicas da pediatria para a medicina de adultos: Práticas de um hospital terciário no Brasil

“…Na Alemanha, um estudo publicado em 2016 relatou a experiência de entrevistas de avaliação das competências e das necessidades de 29 adolescentes com condições crônicas, que culminou na elaboração de um programa educacional. 28 Foram identificadas lacunas nos cuidados e os temas de reflexão sobre a transição selecionados incluíram: novo papel como paciente, orientação no sistema de saúde, questões vocacionais, desapego dos pais, apoio social, contracepção, abuso de substâncias, planejamento familiar, gestão do estresse e desenvolvimento de metas pessoais. Concluiu-se que programas em grupo promovem a autogestão e o preparo dos adolescentes para a transição.…”

Meeting the needs of young adults with life‐limiting conditions: A UK survey of current provision and future challenges for hospices

“…Young adults with LLCs have some distinctive psychosocial and physical needs compared with the adult population using adult hospice services, including sexuality, decision‐making and consent, a reliance on parents rather than self‐advocacy and limited peer support (Fraser et al., ; Pritchard et al., ). The planning of services for young adults with LLCs needs to acknowledge that they are not a homogenous group and their needs will vary depending on their comorbidities, age of diagnosis, severity of complex needs, life experiences, knowledge of their condition, personal goals and expectations of services (Bomba et al., ; Lidstone, ; Together for Short Lives, ).…”

“…Early planning provides the opportunity to explore young people's needs across a range of medical, psychosocial and vocational issues and encourages a multi‐agency approach with good parallel planning for the young person's ongoing care as well as end‐of‐life care (TfSL, ). Issues highlighted as important to address with young people as a part of transition planning include disease knowledge, social and peer support, contraception, education, employment, housing, accessing resources, developing personal goals and appropriate social care (Bomba, Herrmann‐Garitz, Schmidt, Schmidt, & Thyen, ; TfSL ). As part of their transition planning and move into adult services, these young adults require access to age and developmentally appropriate respite care (Together for Short Lives, ).…”