M Devyn Mullis, Carla L Fisher, Amanda L Kastrinos, Maria Sae-Hau, Elisa S Weiss, Michelle Rajotte, Carma L Bylund
{"title":"血癌幸存者的转变:确定照顾者的经验和支持性护理需求。","authors":"M Devyn Mullis, Carla L Fisher, Amanda L Kastrinos, Maria Sae-Hau, Elisa S Weiss, Michelle Rajotte, Carma L Bylund","doi":"10.1007/s11764-023-01422-0","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose: </strong>Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered \"survivorship transitions\" across the continuum.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.</p><p><strong>Results: </strong>Caregivers in both groups reported experiencing a \"new normal,\" which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their \"safety net\") and disrupted expectations (e.g., feeling \"caught off guard\" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).</p><p><strong>Conclusions: </strong>Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of \"survivorship transitions,\" each transition group revealed nuanced distinctions.</p><p><strong>Implications for cancer survivors: </strong>Tailored supportive resources are needed for caregivers throughout survivorship transitions.</p>","PeriodicalId":15284,"journal":{"name":"Journal of Cancer Survivorship","volume":" ","pages":"1811-1821"},"PeriodicalIF":3.1000,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11024982/pdf/","citationCount":"0","resultStr":"{\"title\":\"Survivorship transitions in blood cancer: Identifying experiences and supportive care needs for caregivers.\",\"authors\":\"M Devyn Mullis, Carla L Fisher, Amanda L Kastrinos, Maria Sae-Hau, Elisa S Weiss, Michelle Rajotte, Carma L Bylund\",\"doi\":\"10.1007/s11764-023-01422-0\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose: </strong>Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered \\\"survivorship transitions\\\" across the continuum.</p><p><strong>Methods: </strong>We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.</p><p><strong>Results: </strong>Caregivers in both groups reported experiencing a \\\"new normal,\\\" which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their \\\"safety net\\\") and disrupted expectations (e.g., feeling \\\"caught off guard\\\" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).</p><p><strong>Conclusions: </strong>Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of \\\"survivorship transitions,\\\" each transition group revealed nuanced distinctions.</p><p><strong>Implications for cancer survivors: </strong>Tailored supportive resources are needed for caregivers throughout survivorship transitions.</p>\",\"PeriodicalId\":15284,\"journal\":{\"name\":\"Journal of Cancer Survivorship\",\"volume\":\" \",\"pages\":\"1811-1821\"},\"PeriodicalIF\":3.1000,\"publicationDate\":\"2024-12-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11024982/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Cancer Survivorship\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1007/s11764-023-01422-0\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2023/7/7 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q2\",\"JCRName\":\"ONCOLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Cancer Survivorship","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1007/s11764-023-01422-0","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2023/7/7 0:00:00","PubModel":"Epub","JCR":"Q2","JCRName":"ONCOLOGY","Score":null,"Total":0}
Survivorship transitions in blood cancer: Identifying experiences and supportive care needs for caregivers.
Purpose: Survivorship care often refers to continued healthcare after cancer treatment. Jacobsen and colleagues advocated to expand this to include patients on extended treatments and maintenance/prophylactic therapies, recognizing the care continuum as more complex. Transitions of care for individuals diagnosed with a blood cancer can be complicated. We sought to better understand blood cancer caregivers' experiences as their diagnosed family member encountered "survivorship transitions" across the continuum.
Methods: We conducted semi-structured interviews with adults caring for a parent or a child with a blood cancer. Caregivers were segmented into survivorship groups based on two transitional contexts: (1) when patients transitioned to a new line of therapy (active treatment or maintenance therapy); (2) when patients ended treatment. We conducted a thematic analysis and triangulated findings to compare transitional experiences.
Results: Caregivers in both groups reported experiencing a "new normal," which included personal, relational, and environmental adjustments. Caregivers in the treatment transitions group (n = 23) also described uncertainty challenges (e.g., losing their "safety net") and disrupted expectations (e.g., feeling "caught off guard" by challenges). Whereas caregivers in the end-of-treatment transitions group (n = 15) described relief coupled with worry (e.g., feeling hopeful yet worried).
Conclusions: Survivorship transitions for caregivers are riddled with challenges that include difficult readjustments, uncertainty/worry, and unmet expectations. While there seems to be a cohesive experience of "survivorship transitions," each transition group revealed nuanced distinctions.
Implications for cancer survivors: Tailored supportive resources are needed for caregivers throughout survivorship transitions.
期刊介绍:
Cancer survivorship is a worldwide concern. The aim of this multidisciplinary journal is to provide a global forum for new knowledge related to cancer survivorship. The journal publishes peer-reviewed papers relevant to improving the understanding, prevention, and management of the multiple areas related to cancer survivorship that can affect quality of care, access to care, longevity, and quality of life. It is a forum for research on humans (both laboratory and clinical), clinical studies, systematic and meta-analytic literature reviews, policy studies, and in rare situations case studies as long as they provide a new observation that should be followed up on to improve outcomes related to cancer survivors. Published articles represent a broad range of fields including oncology, primary care, physical medicine and rehabilitation, many other medical and nursing specialties, nursing, health services research, physical and occupational therapy, public health, behavioral medicine, psychology, social work, evidence-based policy, health economics, biobehavioral mechanisms, and qualitative analyses. The journal focuses exclusively on adult cancer survivors, young adult cancer survivors, and childhood cancer survivors who are young adults. Submissions must target those diagnosed with and treated for cancer.