Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition

Betz, Cecily Lynn; Lobo, Marie L.; Nehring, Wendy M.; Bui, Kim

doi:10.1016/j.outlook.2013.01.008

Cited by 132 publications

(116 citation statements)

References 74 publications

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“…Despite recognition of the systemic nature of transition [7] and the effect of this developmental phase on shifting roles within family systems, previous reviews have focused on the perspectives of patients [13][14][15], transitional models [16,17] and healthcare practices [18,19]. Reviews have been carried out on the experience of parenting a child with a LTC [20] and on the effectiveness of interventions for parents of children and adolescents with chronic illness [21,22], however, these do not consider the experience of parenting a child with a chronic condition during their transition to adulthood and adult-services.…”

Section: Introductionmentioning

confidence: 99%

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Heath

Farré

Shaw

2017

Patient Education and Counseling

168

116

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Highlights Parents view young person progression to self-care as an incremental process.  Parent perceptions of child readiness and wellness impact on healthcare autonomy.  Parents are concerned about a lack of transitional healthcare.  Parents can adjust their behaviour to support their child's independence.  Healthcare professionals can support parents to facilitate adolescent autonomy. AbstractObjective: To understand how parents view and experience their role as their child with a long-term physical health condition transitions to adulthood and adult healthcare services. Methods: Five databases were systematically searched for qualitative articles examining parents' views and experiences of their child's healthcare transition. Papers were quality assessed and thematically synthesised. Results: Thirty-two papers from six countries, spanning a 17-year period were included. Long-term conditions were diverse. Findings indicated that parents view their child's progression toward self-care as an incremental process which they seek to facilitate through up-skilling them in self-management practices. Parental perceptions of their child's readiness, wellness, competence and long-term condition impacted on the child's progression to healthcare autonomy. A lack of transitional healthcare and differences between paediatric and adult services served as barriers to effective transition. Parents were required to adjust their role, responsibilities and behaviour to support their child's growing independence. Conclusion: Parents can be key facilitators of their child's healthcare transition, supporting them to become experts in their own condition and care. To do so, they require clarification on their role and support from service providers. Practice

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Section: Introductionmentioning

confidence: 99%

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Heath

Farré

Shaw

2017

Patient Education and Counseling

168

116

View full text Add to dashboard Cite

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“…These are in particular: -adapting the patient care system in an age -appropriate way -supporting the development of communication and decision-making skills to boost self-assurance and assertiveness of patients -developing the sense of control and independence, both in the healthcare system and in personal life -improving the life opportunities and the quality of life [11].…”

Section: The Challenges Of Chronic Care For Patients During Adolescencementioning

confidence: 99%

“…Their personal independence can be limited by frequent pulmonary exacerbations, and the resulting intensive treatment and hospitalization, which may accentuate the feeling of being different from their peers. Young patients with CF find it difficult to plan for the future due to frequent cases of infertility, genetic implications of CF, and shorter life expectancy [11].…”

Section: Health-related Effects On the Quality Of Life During Adolescmentioning

confidence: 99%

“…Patients should be also made aware that they should become self-dependent. Another important step is to provide patients with psychological support and convince them to visit their doctor regularly [8,9,11,14]. An example of progressive development of patient's independence in self-care is provided in Table 1.…”

Section: Preparation Of Patients For the Transition From Paediatric Tmentioning

confidence: 99%

“…Recommendations for patient care in adolescence can facilitate transition to adult care [11,13,15]. Mutual trust and respect in the patientphysician relationship is one of the cornerstones of proper patient care.…”

Section: Recommendations For Transitional Carementioning

confidence: 99%

See 2 more Smart Citations

Problems of Patients with Cystic Fibrosis during Transition to Adulthood

Opoka-Winiarska

Cofta

Mazurek

et al. 2015

Advances in Respiratory Medicine

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The proper care of cystic fibrosis patients extends over their lifetime. More than half of the children with the disease die before adulthood. An important element in the patient's care is a time of transition from a paediatric to the care of an internist and the patient's acceptance of this necessity. Transition from paediatric care to an internist should be adequately prepared. It is not only a question of transfer of medical records, but also careful preparation of patients for such transition. The patients expect not only continuity of care but also the introduction to the management with the disease. The creation of a base for specialist hospital treatment for exacerbation of the disease at the adulthood is an important element in the care of these patients. The problem has been solved in the children group, but is still waiting for solution in adults with cystic fibrosis. It has been proven that care in the centres carried out by a specialized team ensures longer life and better quality of life of these patients. The paper is an overview of these two important elements of care of adults with cystic fibrosis.

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International and Interdisciplinary Identification of Health Care Transition Outcomes

et al. 2016

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IMPORTANCE There is a lack of agreement on what constitutes successful outcomes for the process of health care transition (HCT) among adolescent and young adults with special health care needs. OBJECTIVE To present HCT outcomes identified by a Delphi process with an interdisciplinary group of participants. DESIGN, SETTING, AND PARTICIPANTS A Delphi method involving 3 stages was deployed to refine a list of HCT outcomes. This 18-month study (from January 5, 2013, of stage 1 to July 3, 2014, of stage 3) included an initial literature search, expert interviews, and then 2 waves of a web-based survey. On this survey, 93 participants from outpatient, community-based, and primary care clinics rated the importance of the top HCT outcomes identified by the Delphi process. Analyses were performed from July 5, 2014, to December 5, 2014. EXPOSURES Health care transition outcomes of adolescents and young adults with special health care needs. MAIN OUTCOMES AND MEASURES Importance ratings of identified HCT outcomes rated on a Likert scale from 1 (not important) to 9 (very important). RESULTS The 2 waves of surveys included 117 and 93 participants as the list of outcomes was refined. Transition outcomes were refined by the 3 waves of the Delphi process, with quality of life being the highest-rated outcome with broad agreement. The 10 final outcomes identified included individual outcomes (quality of life, understanding the characteristics of conditions and complications, knowledge of medication, self-management, adherence to medication, and understanding health insurance), health services outcomes (attending medical appointments, having a medical home, and avoidance of unnecessary hospitalization), and a social outcome (having a social network). Participants indicated that different outcomes were likely needed for individuals with cognitive disabilities. CONCLUSIONS AND RELEVANCE Quality of life is an important construct relevant to HCT. Future research should identify valid measures associated with each outcome and further explore the role that quality of life plays in the HCT process. Achieving consensus is a critical step toward the development of reliable and objective comparisons of HCT outcomes across clinical conditions and care delivery locations.

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Voices not heard: A systematic review of adolescents' and emerging adults' perspectives of health care transition

Cited by 132 publications

References 74 publications

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Parenting a child with chronic illness as they transition into adulthood: A systematic review and thematic synthesis of parents’ experiences

Problems of Patients with Cystic Fibrosis during Transition to Adulthood

International and Interdisciplinary Identification of Health Care Transition Outcomes

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