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Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience

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@article{38c9a23cd783490cb55cf89ce0161a2a,
title = "Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience",
abstract = " Purpose: Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kr{\ae}ftv{\ae}rket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.",
keywords = "everyday life, impact, involvement, participation, service user, thematic analysis",
author = "Signe Hangh{\o}j and Helle Pappot and Hjalgrim, {Lisa Lyngsie} and Maiken Hjerming and Visler, {Camilla Louise} and Boisen, {Kirsten A}",
year = "2020",
month = feb,
doi = "10.1089/jayao.2019.0073",
language = "English",
volume = "9",
pages = "78--84",
journal = "Journal of Adolescent and Young Adult Oncology",
issn = "2156-5333",
publisher = "Mary AnnLiebert, Inc. Publishers",
number = "1",

}

RIS

TY - JOUR

T1 - Impact of Service User Involvement from the Perspective of Adolescents and Young Adults with Cancer Experience

AU - Hanghøj, Signe

AU - Pappot, Helle

AU - Hjalgrim, Lisa Lyngsie

AU - Hjerming, Maiken

AU - Visler, Camilla Louise

AU - Boisen, Kirsten A

PY - 2020/2

Y1 - 2020/2

N2 - Purpose: Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kræftværket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.

AB - Purpose: Knowledge of the impact of participating in service user involvement within a health care setting among adolescents and young adults (AYAs) with cancer is limited, and it is unclear as to what AYAs with cancer gain from their participation. Therefore, the purpose of this study was to investigate the impact of participating in service user involvement initiatives from the perspective of AYA cancer patients and AYA cancer survivors. Methods: Individual semistructured interviews were performed with 12 AYAs aged 16-29 who had been or were in current treatment for cancer. Participants were recruited from Kræftværket, a youth support center and social organization for AYAs with cancer, where they had participated in one or more service user involvement initiatives. Data were analyzed by using thematic analysis. Results: The following main themes were found (presented with subthemes in brackets): Achieving professional skills (Strengthening of the Curriculum Vitae, Inspiration for own profession, Handling new working procedures), Being considerate to others (Understanding different perspectives, Altruism), Increasing well-being (Insights into life with cancer, Social community, Giving meaning to life, Everyday life and normalcy). Conclusion: Participating in service user involvement initiatives made the AYAs feel more empowered during their illness course and complied with the personal needs and wishes of AYAs with cancer, including additional support from likeminded individuals. The participants experienced a range of benefits from participating, such as a greater sense of normalcy and increased well-being, allowing for a greater sense of control throughout their illness course.

KW - everyday life

KW - impact

KW - involvement

KW - participation

KW - service user

KW - thematic analysis

U2 - 10.1089/jayao.2019.0073

DO - 10.1089/jayao.2019.0073

M3 - Journal article

C2 - 31584335

VL - 9

SP - 78

EP - 84

JO - Journal of Adolescent and Young Adult Oncology

JF - Journal of Adolescent and Young Adult Oncology

SN - 2156-5333

IS - 1

ER -

ID: 58925591