Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study
Sarah Lea,1 Rachel M Taylor,1 Ana Martins,1 Lorna A Fern,1 Jeremy S Whelan,1 Faith Gibson2,3 1Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK; 2School of Health Sciences, University of Surrey, Guildford, UK; 3Centre for Outcomes and Experience Research in Childr...
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| Format: | Article |
| Language: | English |
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Dove Medical Press
2018-10-01
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| Series: | Adolescent Health, Medicine and Therapeutics |
| Subjects: | |
| Online Access: | https://www.dovepress.com/conceptualizing-age-appropriate-care-for-teenagers-and-young-adults-wi-peer-reviewed-article-AHMT |
| _version_ | 1818982005690335232 |
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| author | Lea S Taylor RM Martins A Fern LA Whelan JS Gibson F |
| author_facet | Lea S Taylor RM Martins A Fern LA Whelan JS Gibson F |
| author_sort | Lea S |
| collection | DOAJ |
| description | Sarah Lea,1 Rachel M Taylor,1 Ana Martins,1 Lorna A Fern,1 Jeremy S Whelan,1 Faith Gibson2,3 1Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK; 2School of Health Sciences, University of Surrey, Guildford, UK; 3Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK Purpose: Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, alongside linked “designated” hospitals, following recommendations that this population should have access to age-appropriate care. The term age-appropriate care has not yet been defined; it is however the explicit term used when communicating the nature of specialist care. The aim of this study was to develop an evidence-based, contextually relevant and operational model defining age-appropriate care for teenagers and young adults with cancer.Materials and methods: A mixed-methods study was conducted comprising 1) semi-structured interview data from young people with cancer and health care professionals involved in their care; 2) an integrative literature review to identify the current understanding and use of the term age-appropriate care; 3) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques was used to analyze and integrate data.Results: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which were presented as a conceptual model: best treatment; health care professional knowledge; communication, interactions and relationships; recognizing individuality; empowering young people; promoting normality; and the environment. Subthemes emerged which included healthcare professionals clinical and holistic expertise, and the environment comprising both physical and social elements.Conclusion: The proposed model, necessarily constructed from multiple components, presents an evidence-based comprehensive structure for understanding the nature of age-appropriate care. It will be useful for clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present and could be applied to the care of young people with long-term conditions other than cancer. Keywords: age-appropriate care, teenagers, adolescents, young adults, young people, cancer, health care delivery, BRIGHTLIGHT |
| first_indexed | 2024-12-20T17:40:20Z |
| format | Article |
| id | doaj.art-284238d85c42439f8f4815e6593fd56e |
| institution | Directory Open Access Journal |
| issn | 1179-318X |
| language | English |
| last_indexed | 2024-12-20T17:40:20Z |
| publishDate | 2018-10-01 |
| publisher | Dove Medical Press |
| record_format | Article |
| series | Adolescent Health, Medicine and Therapeutics |
| spelling | doaj.art-284238d85c42439f8f4815e6593fd56e2022-12-21T19:31:06ZengDove Medical PressAdolescent Health, Medicine and Therapeutics1179-318X2018-10-01Volume 914916641724Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods studyLea STaylor RMMartins AFern LAWhelan JSGibson FSarah Lea,1 Rachel M Taylor,1 Ana Martins,1 Lorna A Fern,1 Jeremy S Whelan,1 Faith Gibson2,3 1Cancer Division, University College London Hospitals NHS Foundation Trust, London, UK; 2School of Health Sciences, University of Surrey, Guildford, UK; 3Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK Purpose: Teenage and young adult cancer care in England is centralized around 13 principal treatment centers, alongside linked “designated” hospitals, following recommendations that this population should have access to age-appropriate care. The term age-appropriate care has not yet been defined; it is however the explicit term used when communicating the nature of specialist care. The aim of this study was to develop an evidence-based, contextually relevant and operational model defining age-appropriate care for teenagers and young adults with cancer.Materials and methods: A mixed-methods study was conducted comprising 1) semi-structured interview data from young people with cancer and health care professionals involved in their care; 2) an integrative literature review to identify the current understanding and use of the term age-appropriate care; 3) synthesis of both sets of data to form a conceptual model of age-appropriate care. A combination of qualitative content, thematic and framework analysis techniques was used to analyze and integrate data.Results: Analysis and synthesis across data sources enabled identification of seven core components of age-appropriate care, which were presented as a conceptual model: best treatment; health care professional knowledge; communication, interactions and relationships; recognizing individuality; empowering young people; promoting normality; and the environment. Subthemes emerged which included healthcare professionals clinical and holistic expertise, and the environment comprising both physical and social elements.Conclusion: The proposed model, necessarily constructed from multiple components, presents an evidence-based comprehensive structure for understanding the nature of age-appropriate care. It will be useful for clinicians, health service managers and researchers who are designing, implementing and evaluating interventions that might contribute to the provision of age-appropriate care. While the individual elements of age-appropriate care can exist independently or in part, age-appropriate care is optimal when all seven elements are present and could be applied to the care of young people with long-term conditions other than cancer. Keywords: age-appropriate care, teenagers, adolescents, young adults, young people, cancer, health care delivery, BRIGHTLIGHThttps://www.dovepress.com/conceptualizing-age-appropriate-care-for-teenagers-and-young-adults-wi-peer-reviewed-article-AHMTAge-appropriate careteenagersadolescentsyoung adultsyoung peoplecancerhealthcare deliveryBRIGHTLIGHT |
| spellingShingle | Lea S Taylor RM Martins A Fern LA Whelan JS Gibson F Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study Adolescent Health, Medicine and Therapeutics Age-appropriate care teenagers adolescents young adults young people cancer healthcare delivery BRIGHTLIGHT |
| title | Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study |
| title_full | Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study |
| title_fullStr | Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study |
| title_full_unstemmed | Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study |
| title_short | Conceptualizing age-appropriate care for teenagers and young adults with cancer: a qualitative mixed-methods study |
| title_sort | conceptualizing age appropriate care for teenagers and young adults with cancer a qualitative mixed methods study |
| topic | Age-appropriate care teenagers adolescents young adults young people cancer healthcare delivery BRIGHTLIGHT |
| url | https://www.dovepress.com/conceptualizing-age-appropriate-care-for-teenagers-and-young-adults-wi-peer-reviewed-article-AHMT |
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