South African adolescents with cystic fibrosis: a qualitative exploration of their bio-psychosocial fields

Hugo, Carina Jacobie; Merwe, Mariette Van der

doi:10.2989/17280583.2014.898643

Cited by 1 publication

(6 citation statements)

References 15 publications

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“…Most reported exclusively on adolescents and young adults ( n = 44, 86%) and included exclusively patients with cancer ( n = 42, 82%). However, four studies included only patients with non-malignant advanced illnesses (HIV/AIDS in three, 23 – 25 and cystic fibrosis in one 26 ). Five studies included patients with both malignant and non-malignant advanced illnesses.…”

Section: Resultsmentioning

confidence: 99%

“…The age used to define adolescents ranged from 10 to 22 years 26 , 32 – 34 ;the age used to define young adults ranged from 16 to 39 years 35 – 37 ; and the age used to define adolescents and young adults ranged from 13 to 39 years. 38 – 42 Most studies originating from Canada and the US used the age range of 15–39 years old 28 , 29 , 38 – 41 , 43 – 47 ; however, other age ranges were also reported in US studies, including 12–24, 48 12–25, 49 14–27, 27 and 15–34.…”

Section: Resultsmentioning

confidence: 99%

“…Themes related to psychological symptom burden and adjustment disorders were discussed in 31 studies. 26 , 28 , 29 , 32 , 33 , 35 , 38 , 40 , 42 , 44 , 46 – 50 , 53 , 55 , 57 , 58 , 60 – 64 , 67 – 73 During the last month of life, up to 87% of patients had at least one psychological symptom. 28 Depression and anxiety were repeatedly reported by adolescents and young adults, 35 , 40 , 53 , 60 , 69 in up to 43% and 48% of patients, respectively.…”

Section: Resultsmentioning

confidence: 99%

“…After analyzing the key findings of the 51 studies, three domains were identified related to the palliative care needs and experiences of adolescents and young adults: physical symptom burden ( n = 26, 51%), 26,28,29,32–35,40,42,44,46,50,52,53,55–66 psychological and social needs ( n = 33, 65%), 26,28,29,31–33,35,38,40,42,44,46–50,53,55,57,58,60–64,66–73 and end-of-life care ( n = 30, 59%). 23–25,27…”

Section: Resultsmentioning

confidence: 99%

“…Most articles (n = 15/26, 58%) discussed at least two of these topics, and all three topics were presented in three articles. 55,62,63 In eight articles, only one topic was presented (Symptom incidence: n = 7, 26,33,34,40,46,52,56 management: n = 1 32 ).…”

Section: Physical Symptom Burdenmentioning

confidence: 99%

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Palliative care for adolescents and young adults with advanced illness: A scoping review

et al. 2022

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Background: Age-related complex medical conditions have been commonly reported among adolescents and young adults with advanced life-limiting illness. There is increasing interest in exploring their palliative care needs and end-of-life experiences. Aim: This scoping review aimed to explore the available literature about providing palliative and end-of-life care to adolescents and young adults with advanced life-limiting illnesses. Design: Scoping review. This review was registered on Open Science Framework ( https://doi.org/10.17605/OSF.IO/SPTD7 ). Data sources: Electronic databases (MEDLINEALL, Embase, Emcare, Cochrane Central Register of Controlled Trial CENTRAL, Scopus, PsycINFO, Cochrane Database of Systematic Reviews), Google Scholar and reference lists were searched up to October 2021. We included studies reporting on adolescents and/or young adults with advanced life-limiting illnesses. There were no limitations concerning location, type of illness or study design. Results: We identified 51 studies published between 2002 and 2021. Most studies were published in the United States ( n = 34, 67%), and nine studies (18%) reported exclusively on patients with non-malignant illnesses. Two thirds of the identified studies were case reports and retrospective chart reviews ( n = 33). Three main topics were identified: Physical symptom burden ( n = 26, 51%), Psychological and social needs ( n = 33, 65%), and end-of-life care ( n = 30, 59%). Twenty-six studies (51%) were focused only on one topic, and the age range used to identify adolescents and young adults varied based on the study location. Conclusion: The findings of this review shed light on the different palliative care experiences and knowledge gaps related to adolescents and young adults as an underserved and vulnerable patient population. Further research needs to be dedicated toward palliative care programs tailored for adolescents and young adults.

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