Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support
BackgroundBeing diagnosed with cancer in childhood often has a direct impact on the child's opportunities to participate in activities and the child's sense of belonging in different life situations. Experiences of illness in youth affect the lives of these individuals in numerous ways and...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-06-01
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| Series: | Frontiers in Rehabilitation Sciences |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fresc.2023.1098933/full |
| _version_ | 1797802604619628544 |
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| author | Margaretha Stenmarker Margaretha Stenmarker Margaretha Stenmarker Maria Björk Maria Björk Marie Golsäter Marie Golsäter Karin Enskär |
| author_facet | Margaretha Stenmarker Margaretha Stenmarker Margaretha Stenmarker Maria Björk Maria Björk Marie Golsäter Marie Golsäter Karin Enskär |
| author_sort | Margaretha Stenmarker |
| collection | DOAJ |
| description | BackgroundBeing diagnosed with cancer in childhood often has a direct impact on the child's opportunities to participate in activities and the child's sense of belonging in different life situations. Experiences of illness in youth affect the lives of these individuals in numerous ways and they need pronounced support to regain their normal life after treatment.PurposeTo illustrate how childhood cancer survivors describe the role of the caring support provided by healthcare professionals at diagnosis and during the cancer trajectory.MethodsA mixed methods approach was applied. Swanson's Theory of Caring was used to deductively analyze the answers in a study-specific questionnaire with Likert scales (1–5). Descriptive and comparative statistics and exploratory factor analyses were performed.ResultsSixty-two former patients, diagnosed with solid tumors/lymphoma in 1983 to 2003 in Sweden, participated. The mean time passed since treatment was 15.7 years. Swanson's caring processes Being with and Doing for were the most prominent loading categorical factor indicators. Higher scores for healthcare professionals being emotionally present (Being with), doing for others what they would do for themselves (Doing for) and being willing to understand the sick child's situation (Knowing) were highlighted by survivors older than 30 years, compared to those younger than 30 years (p = 0.041, p = 0.045, and p = 0.013, respectively). An increased vulnerability regarding their ability to cope with difficulties (Maintain belief) was found among participants who were treated during adolescence, related to schoolchildren (p = 0.048), and among those who had been treated with extra-cranial irradiation in comparison with no extra-cranial irradiation (p = 0.004). The role of having a partner in comparison with being single was underlined among those who felt they had acquired the tools they needed to take care of themselves (Enabling) (p = 0.013). The total explained variance was 63%.ConclusionsA person-centered care approach during treatment for childhood cancer, reflected by a caring model, highlights the role of healthcare professionals being emotionally present, involving children, performing actions, and with an approach that has potential long-term implications. Childhood cancer patients and survivors need not only clinically competent professionals, but professionals who provide caring interactions with compassion. |
| first_indexed | 2024-03-13T05:09:09Z |
| format | Article |
| id | doaj.art-a6068c09fddd4b7a88d54105093f8b94 |
| institution | Directory Open Access Journal |
| issn | 2673-6861 |
| language | English |
| last_indexed | 2024-03-13T05:09:09Z |
| publishDate | 2023-06-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Rehabilitation Sciences |
| spelling | doaj.art-a6068c09fddd4b7a88d54105093f8b942023-06-16T06:06:56ZengFrontiers Media S.A.Frontiers in Rehabilitation Sciences2673-68612023-06-01410.3389/fresc.2023.10989331098933Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring supportMargaretha Stenmarker0Margaretha Stenmarker1Margaretha Stenmarker2Maria Björk3Maria Björk4Marie Golsäter5Marie Golsäter6Karin Enskär7Institute of Clinical Sciences, Sahlgrenska Academy, University of Gothenburg, Gothenburg, SwedenDepartment of Pediatrics, Region Jönköping County, Jönköping, SwedenDepartment of Biomedical and Clinical Sciences, Faculty of Medicine and Health Sciences, Linköping University, Linköping, SwedenSchool of Health and Welfare, Jönköping University, Jönköping, SwedenCHILD—Research Group, School of Health and Welfare, Jönköping University, Jönköping, SwedenCHILD—Research Group, School of Health and Welfare, Jönköping University, Jönköping, SwedenChild Health Services, Region Jönköping County, Jönköping, SwedenDepartment of Women’s and Children’s Health, Uppsala University, Uppsala, SwedenBackgroundBeing diagnosed with cancer in childhood often has a direct impact on the child's opportunities to participate in activities and the child's sense of belonging in different life situations. Experiences of illness in youth affect the lives of these individuals in numerous ways and they need pronounced support to regain their normal life after treatment.PurposeTo illustrate how childhood cancer survivors describe the role of the caring support provided by healthcare professionals at diagnosis and during the cancer trajectory.MethodsA mixed methods approach was applied. Swanson's Theory of Caring was used to deductively analyze the answers in a study-specific questionnaire with Likert scales (1–5). Descriptive and comparative statistics and exploratory factor analyses were performed.ResultsSixty-two former patients, diagnosed with solid tumors/lymphoma in 1983 to 2003 in Sweden, participated. The mean time passed since treatment was 15.7 years. Swanson's caring processes Being with and Doing for were the most prominent loading categorical factor indicators. Higher scores for healthcare professionals being emotionally present (Being with), doing for others what they would do for themselves (Doing for) and being willing to understand the sick child's situation (Knowing) were highlighted by survivors older than 30 years, compared to those younger than 30 years (p = 0.041, p = 0.045, and p = 0.013, respectively). An increased vulnerability regarding their ability to cope with difficulties (Maintain belief) was found among participants who were treated during adolescence, related to schoolchildren (p = 0.048), and among those who had been treated with extra-cranial irradiation in comparison with no extra-cranial irradiation (p = 0.004). The role of having a partner in comparison with being single was underlined among those who felt they had acquired the tools they needed to take care of themselves (Enabling) (p = 0.013). The total explained variance was 63%.ConclusionsA person-centered care approach during treatment for childhood cancer, reflected by a caring model, highlights the role of healthcare professionals being emotionally present, involving children, performing actions, and with an approach that has potential long-term implications. Childhood cancer patients and survivors need not only clinically competent professionals, but professionals who provide caring interactions with compassion.https://www.frontiersin.org/articles/10.3389/fresc.2023.1098933/fullchildhood cancer survivorchildadolescentsswanson caring theoryparticipationevery day life |
| spellingShingle | Margaretha Stenmarker Margaretha Stenmarker Margaretha Stenmarker Maria Björk Maria Björk Marie Golsäter Marie Golsäter Karin Enskär Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support Frontiers in Rehabilitation Sciences childhood cancer survivor child adolescents swanson caring theory participation every day life |
| title | Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support |
| title_full | Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support |
| title_fullStr | Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support |
| title_full_unstemmed | Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support |
| title_short | Everyday life during the childhood cancer trajectory—childhood cancer survivors' descriptions of the role of caring support |
| title_sort | everyday life during the childhood cancer trajectory childhood cancer survivors descriptions of the role of caring support |
| topic | childhood cancer survivor child adolescents swanson caring theory participation every day life |
| url | https://www.frontiersin.org/articles/10.3389/fresc.2023.1098933/full |
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