Inception of a pediatric cancer caregiver support group guided by parental needs
Abstract Background Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution o...
| Main Authors: | , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2022-06-01
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| Series: | Cancer Reports |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/cnr2.1469 |
| _version_ | 1818209709784563712 |
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| author | Vasudha N. Rao Rajeshwari AnantharamanRajeshwari Revathi Rajagopal Michelle Normen |
| author_facet | Vasudha N. Rao Rajeshwari AnantharamanRajeshwari Revathi Rajagopal Michelle Normen |
| author_sort | Vasudha N. Rao |
| collection | DOAJ |
| description | Abstract Background Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups. Aims To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer. Methods Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho‐social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family‐related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS. Results The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics‐related needs for play/art‐based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/prognosis (47.1%), side‐effects of treatment and physical changes (41.2%). Family‐related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed. Conclusion Our study highlighted the unmet needs of caregivers which included emotional, logistics‐related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers. |
| first_indexed | 2024-12-12T05:05:02Z |
| format | Article |
| id | doaj.art-0ad6f58ceb22422092131a2aca677e7b |
| institution | Directory Open Access Journal |
| issn | 2573-8348 |
| language | English |
| last_indexed | 2024-12-12T05:05:02Z |
| publishDate | 2022-06-01 |
| publisher | Wiley |
| record_format | Article |
| series | Cancer Reports |
| spelling | doaj.art-0ad6f58ceb22422092131a2aca677e7b2022-12-22T00:37:07ZengWileyCancer Reports2573-83482022-06-0156n/an/a10.1002/cnr2.1469Inception of a pediatric cancer caregiver support group guided by parental needsVasudha N. Rao0Rajeshwari AnantharamanRajeshwari1Revathi Rajagopal2Michelle Normen3Department of Pediatric Oncology Cytecare Cancer Hospitals Bangalore IndiaDepartment of Psycho‐oncology Services Cytecare Cancer Hospitals Bangalore IndiaDepartment of Psycho‐oncology HCG Cancer Hospitals Bangalore IndiaDepartment of Psycho‐oncology Services Cytecare Cancer Hospitals Bangalore IndiaAbstract Background Survivorship in childhood cancers has steadily improved and increased the need for caregivers to provide a longer duration of care both in the hospital and at home. Involving parents and caregivers to voice their unmet needs could significantly impact and direct the institution of support groups. Aims To ascertain the need for a pediatric caregiver support group based on a survey that explored the unmet needs of caregivers of children with cancer. Methods Caregivers of pediatric patients (n = 17) undergoing treatment at the hospital were requested to complete our Pediatric Caregiver Psycho‐social Needs Survey. The survey encompassed questions on different aspects of caregiving and the caveats felt by the caregivers. The needs were categorized into seven main domains (physical, emotional, family‐related issues, spiritual, social, logistics, and information) that focused on understanding the importance and the perceived level of professional support that was expected. The data was analyzed using SPSS. Results The most often reported needs were (i) emotional concerns with the majority reporting fear (58.8%), (ii) logistics‐related needs for play/art‐based activities (58.8%), (iii) informational needs focusing on understanding diagnosis/prognosis (47.1%), side‐effects of treatment and physical changes (41.2%). Family‐related needs escalated when caregivers (23.5%) looked after other ill family members at home. Caregivers (23.5%) also reported Spiritual concerns suggesting the need for religious/spiritual support in the hospital. Majority of caregivers (82.4%) expressed interest to be part of a pediatric caregiver support group. However, professional support sought for was much lesser compared to the percentage of needs/concerns expressed. Conclusion Our study highlighted the unmet needs of caregivers which included emotional, logistics‐related needs, and concerns about information. Hence, the goal is to provide a unified platform through a support group that holistically can address needs and empower caregivers.https://doi.org/10.1002/cnr2.1469Emotional NeedsEmpowering CaregiversHolistic CareInformational SupportPediatric‐Oncology Caregiver SupportPsycho‐Oncology in Childhood Cancer |
| spellingShingle | Vasudha N. Rao Rajeshwari AnantharamanRajeshwari Revathi Rajagopal Michelle Normen Inception of a pediatric cancer caregiver support group guided by parental needs Cancer Reports Emotional Needs Empowering Caregivers Holistic Care Informational Support Pediatric‐Oncology Caregiver Support Psycho‐Oncology in Childhood Cancer |
| title | Inception of a pediatric cancer caregiver support group guided by parental needs |
| title_full | Inception of a pediatric cancer caregiver support group guided by parental needs |
| title_fullStr | Inception of a pediatric cancer caregiver support group guided by parental needs |
| title_full_unstemmed | Inception of a pediatric cancer caregiver support group guided by parental needs |
| title_short | Inception of a pediatric cancer caregiver support group guided by parental needs |
| title_sort | inception of a pediatric cancer caregiver support group guided by parental needs |
| topic | Emotional Needs Empowering Caregivers Holistic Care Informational Support Pediatric‐Oncology Caregiver Support Psycho‐Oncology in Childhood Cancer |
| url | https://doi.org/10.1002/cnr2.1469 |
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