G. Halkett, Emma McDougall, Melissa N Berg, Jenny Clarke, Haryana Dhillon, E. Lobb, J. Phillips, PL Hudson, Mona M Faris, Rachel Campbell, Joanne Shaw, Elisabeth Coyne, Brian Kelly, T. Ownsworth, Dianne Legge, Anna K Nowak
{"title":"A nurse-led intervention for carers of people with high grade glioma: a case series of carers reporting high distress","authors":"G. Halkett, Emma McDougall, Melissa N Berg, Jenny Clarke, Haryana Dhillon, E. Lobb, J. Phillips, PL Hudson, Mona M Faris, Rachel Campbell, Joanne Shaw, Elisabeth Coyne, Brian Kelly, T. Ownsworth, Dianne Legge, Anna K Nowak","doi":"10.1093/nop/npae033","DOIUrl":null,"url":null,"abstract":"\n \n \n Carers play an important role in supporting patients diagnosed with High Grade Glioma (HGG). However, this experience is frequently distressing and many carers require support. Objective: to describe unmet needs of highly distressed carers of people with HGG) and recommendations and referrals made by a nurse to support them within the Care-IS trial.\n \n \n \n Descriptive case series. Carers of people with HGG in the Care-IS trial reporting: severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months, were included.\n Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumour Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, 12 months. Monthly nurse telephone assessments documented carers’ needs and recommendations and referrals made. Data are reported descriptively.\n \n \n \n Four highly distressed carers were identified (N=98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumour unmet needs were: adjusting to changes in personality, mental and thinking abilities; and accessing government assistance.\n Nurses provided information about treatment, side effects and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered.\n \n \n \n Highly distressed carers have diverse support needs in many domains which can change over time. Nurses were critical in identifying carers’ needs, providing support, and making referrals. Carers’ distress and needs require ongoing screening and management.\n","PeriodicalId":19234,"journal":{"name":"Neuro-oncology practice","volume":null,"pages":null},"PeriodicalIF":2.4000,"publicationDate":"2024-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Neuro-oncology practice","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1093/nop/npae033","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Carers play an important role in supporting patients diagnosed with High Grade Glioma (HGG). However, this experience is frequently distressing and many carers require support. Objective: to describe unmet needs of highly distressed carers of people with HGG) and recommendations and referrals made by a nurse to support them within the Care-IS trial.
Descriptive case series. Carers of people with HGG in the Care-IS trial reporting: severe anxiety and/or depression at baseline and/or 4 months and high distress at baseline (during chemoradiotherapy) and at 4 months, were included.
Carers completed the Partner and Caregiver Supportive Care Needs Scale and Brain Tumour Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, 12 months. Monthly nurse telephone assessments documented carers’ needs and recommendations and referrals made. Data are reported descriptively.
Four highly distressed carers were identified (N=98). Each reported a moderate-high need at ≥1 timepoint for: financial support and/or travel insurance; making life decisions in uncertainty; information about cancer prognosis/likely outcome; and coping with unexpected treatment outcomes. Specific brain tumour unmet needs were: adjusting to changes in personality, mental and thinking abilities; and accessing government assistance.
Nurses provided information about treatment, side effects and practical support. Recommendations for clinical care and referrals to community-based services, and medical specialists were offered.
Highly distressed carers have diverse support needs in many domains which can change over time. Nurses were critical in identifying carers’ needs, providing support, and making referrals. Carers’ distress and needs require ongoing screening and management.
期刊介绍：
Neuro-Oncology Practice focuses on the clinical aspects of the subspecialty for practicing clinicians and healthcare specialists from a variety of disciplines including physicians, nurses, physical/occupational therapists, neuropsychologists, and palliative care specialists, who have focused their careers on clinical patient care and who want to apply the latest treatment advances to their practice. These include: Applying new trial results to improve standards of patient care Translating scientific advances such as tumor molecular profiling and advanced imaging into clinical treatment decision making and personalized brain tumor therapies Raising awareness of basic, translational and clinical research in areas of symptom management, survivorship, neurocognitive function, end of life issues and caregiving
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