A qualitative study of young childhood cancer survivors and their parents’ experiences with treatment‐related late effects in everyday life post‐treatment

Petersen, Natasha Nybro; Hansson, Helena; Lie, Hanne C.; Brinkkjær, Maria; Graungaard, Benjamin; Larsen, Marie Hamilton; Larsen, Elna Hamilton; Schmiegelow, Kjeld; Fridh, Martin Kaj; Larsen, Hanne Bækgaard

doi:10.1111/jan.15073

Cited by 9 publications

(3 citation statements)

References 34 publications

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“…Data from the patient and parent interviews have been analyzed and are currently being written for publication. A total of 2 articles have been published as of January 2022 [ 81 , 82 ], and 2 more are under preparation for publication. Data from interviews with local stakeholders are currently being analyzed, and 1 article is planned.…”

Section: Resultsmentioning

confidence: 99%

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

Lie¹,

Anderssen²,

Rueegg³

et al. 2022

JMIR Res Protoc

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Background Survivors of childhood cancer represent a growing population with a long life expectancy but high risks of treatment-induced morbidity and premature mortality. Regular physical activity (PA) may improve their long-term health; however, high-quality empirical knowledge is sparse. Objective The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) study comprises 4 work packages (WPs) aiming for the objective determination of PA and self-reported health behavior, fatigue, and quality of life (WP 1); physical fitness determination (WP 2); the evaluation of barriers to and facilitators of PA (WP 1 and 3); and the feasibility testing of an intervention to increase PA and physical fitness (WP 4). Methods The PACCS study will use a mixed methods design, combining patient-reported outcome measures and objective clinical and physiological assessments with qualitative data gathering methods. A total of 500 survivors of childhood cancer aged 9 to 18 years with ≥1 year after treatment completion will be recruited in follow-up care clinics in Norway, Denmark, Finland, Germany, and Switzerland. All participants will participate in WP 1, of which approximately 150, 40, and 30 will be recruited to WP 2, WP3, and WP 4, respectively. The reference material for WP 1 is available from existing studies, whereas WP 2 will recruit healthy controls. PA levels will be measured using ActiGraph accelerometers and self-reports. Validated questionnaires will be used to assess health behaviors, fatigue, and quality of life. Physical fitness will be measured by a cardiopulmonary exercise test, isometric muscle strength tests, and muscle power and endurance tests. Limiting factors will be identified via neurological, pulmonary, and cardiac evaluations and the assessment of body composition and muscle size. Semistructured, qualitative interviews, analyzed using systematic text condensation, will identify the perceived barriers to and facilitators of PA for survivors of childhood cancer. In WP 4, we will evaluate the feasibility of a 6-month personalized PA intervention with the involvement of local structures. Results Ethical approvals have been secured at all participating sites (Norwegian Regional Committee for Medical Research Ethics [2016/953 and 2018/739]; the Oslo University Hospital Data Protection Officer; equivalent institutions in Finland, Denmark [file H-19032270], Germany, and Switzerland [Ethics Committee of Northwestern and Central Switzerland, project ID: 2019-00410]). Data collection for WP 1 to 3 is complete. This will be completed by July 2022 for WP 4. Several publications are already in preparation, and 2 have been published. Conclusions The PACCS study will generate high-quality knowledge that will contribute to the development of an evidence-based PA intervention for young survivors of childhood cancer to improve their long-term care and health. We will identify physiological, psychological, and social barriers to PA that can be targeted in interventions with immediate benefits for young survivors of childhood cancer in need of rehabilitation. International Registered Report Identifier (IRRID) DERR1-10.2196/35838

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Section: Resultsmentioning

confidence: 99%

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

Lie¹,

Anderssen²,

Rueegg³

et al. 2022

JMIR Res Protoc

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“…In addition to concerns and management of their ongoing or potential health issues, adolescent cancer survivors face tasks common to of their peers, such as navigating the social landscape of school, building a career path towards independent adulthood, and finding their place as contributing members of society [5][6][7][8]. Prior studies have indicated that adolescent cancer survivors who experience difficulties returning to normal life may be at increased risk of unemployment and social isolation [8][9][10][11].…”

Section: Introductionmentioning

confidence: 99%

Perception of Korean healthy adolescents on cancer and adolescent cancer survivors: a cross-sectional survey

Hyun,

Lee,

Lee

et al. 2024

BMC Public Health

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Background As the number of adolescent cancer survivors increases, detailed and effective healthcare policies on adolescent cancer survivors returning to school and workplace are needed. The study aimed to explore the perception of healthy adolescents on cancer and adolescent cancer survivors. Methods This study conducted a face-to-face cross-sectional study in the Republic of Korea in 2021 on adolescent selected through proportional population allocation sampling by sex, age, and region. According to research questions, survey questionnaire organized and collected data on adolescents' perceptions of cancer, differences in perceptions from tuberculosis, measles, asthma, perceptions of adolescent cancer survivors, and health information sources that led to these perceptions. Results Of the total 500 adolescents, less than 10% of healthy adolescents responded that cancer is contagious, while three-quarters of the respondents believed that cancer is preventable. In addition, compared to tuberculosis, measles, and asthma, they recognized differences by disease. The majority of healthy adolescents embraced community values advocating the return of adolescent cancer survivors to school and work. However, they expressed a negative view of the situation in which adolescent cancer survivors could interact with them as classmates or co-workers. Adolescents mainly obtained health information on cancer from the Internet and television, Conclusions The perception of healthy adolescents on cancer was relatively accurate; however, they have dualistic thinking involving living with adolescent cancer survivors. To facilitate reintegration of adolescent cancer survivors into daily lives, education is needed for healthy adolescents to live with cancer survivors.

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“…Rehabilitation programs for older children and adolescents with cancer are unsuitable for preschool children, as preschoolers are motivated to be physically active because of their need to play, learn new skills, express themselves, and interact with others ( 15 ). Furthermore, health benefits are seldom a motivating factor for children with cancer ( 16 ). Instead, they underline the social aspect of physical activity as motivating ( 17 ).…”

Section: Introductionmentioning

confidence: 99%

The rehabilitation including structured active play (RePlay) model: A conceptual model for organizing physical rehabilitation sessions based on structured active play for preschoolers with cancer

Pouplier

Larsen²,

Christensen³

et al. 2022

Front. Pediatr.

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Anti-cancer treatments, as well as cancer itself, reduce children’s cardiorespiratory fitness, muscle strength, and gross motor functions. Early rehabilitation programs, including physical activity for childhood cancer patients, can counteract these adverse effects. Previous studies of school-aged children (6–18 years old) indicate that physical activity, including aerobic and resistance training, is safe, feasible, and effective. The goal of structured physical activity rehabilitation for preschool children (1–5 years old) is to support gross motor development and opportunities to move freely in various ways. Specific rehabilitation for preschoolers diagnosed with cancer is needed to promote physical-, social-, and personal development. This paper introduces a conceptual model—The RePlay (Rehabilitation including structured active play) Model—for organizing physical rehabilitation sessions based on structured active play for preschoolers with cancer. The theory and empirically based model combine knowledge of early childhood development, play, physical activity and rehabilitation for children with cancer, and cancer treatment. With this model, we propose how to structure rehabilitation sessions, including goal-oriented, age-sensitive, fun movement activities that facilitate preschoolers to develop gross motor skills while enhancing their social and personal skills, through four core principles: (1) ritual practices, (2) reinforcement of movement through repetition, (3) development through appropriate challenge, and (4) adjusting activities to accommodate treatment-related side effects. This model holds promise for use with preschoolers diagnosed with cancer, as it is scalable and pragmatic and accounts for the children’s fluctuating physical capacity and daily wellbeing during cancer treatment.

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A qualitative study of young childhood cancer survivors and their parents’ experiences with treatment‐related late effects in everyday life post‐treatment

Cited by 9 publications

References 34 publications

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

The Physical Activity and Fitness in Childhood Cancer Survivors (PACCS) Study: Protocol for an International Mixed Methods Study

Perception of Korean healthy adolescents on cancer and adolescent cancer survivors: a cross-sectional survey

The rehabilitation including structured active play (RePlay) model: A conceptual model for organizing physical rehabilitation sessions based on structured active play for preschoolers with cancer

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