A nurse-led intervention for carers of people with high-grade glioma: A case series of carers reporting high distress

被引:4
作者
Halkett, Georgia K. B. [1 ,14 ]
McDougall, Emma [1 ]
Berg, Melissa [1 ]
Clarke, Jenny [1 ]
Dhillon, Haryana M. [2 ]
Lobb, Elizabeth [3 ]
Phillips, Jane L. [3 ,4 ]
Hudson, Peter [5 ,6 ,7 ]
Faris, Mona M. [2 ]
Campbell, Rachel [2 ]
Shaw, Joanne [2 ]
Coyne, Elisabeth [8 ]
Kelly, Brian [9 ,10 ]
Ownsworth, Tamara [11 ]
Legge, Dianne M. [1 ,12 ]
Nowak, Anna K. [13 ]
机构
[1] Curtin Univ, Curtin Hlth Innovat Res Inst, Fac Hlth Sci, Curtin Sch Nursing, Perth, WA, Australia
[2] Univ Sydney, Fac Sci, Sch Psychol, Psychooncol Cooperat Res Grp, Sydney, NSW, Australia
[3] Univ Technol Sydney, Fac Hlth, ImPACCT, Ultimo, NSW, Australia
[4] Queensland Univ Technol, Sch Nursing, Fac Hlth, Brisbane, Qld, Australia
[5] St Vincents Hosp Melbourne, Ctr Palliat Care, Fitzroy, Vic, Australia
[6] Univ Melbourne, Dept Nursing, Melbourne, Vic, Australia
[7] Vrije Univ Brussels, Brussels, Belgium
[8] Griffith Univ, Sch Nursing & Midwifery, Gold Coast, Qld, Australia
[9] Univ Newcastle, Sch Med & Publ Hlth, Callaghan, NSW, Australia
[10] Univ Calgary, Tom Baker Canc Ctr, Calgary, AB, Canada
[11] Griffith Univ, Sch Appl Psychol, Brisbane, Qld, Australia
[12] Austin Hlth, Olivia Newton John Canc Ctr, Melbourne, Vic, Australia
[13] Univ Western Australia, Crawley, WA, Australia
[14] Curtin Univ, Sch Nursing, GPO Box U1987, Perth, WA 6845, Australia
关键词
carers; case series; content analysis; high-grade glioma; nurse intervention; PSYCHOLOGICAL MORBIDITY; UNMET NEEDS; BRAIN-TUMOR; CAREGIVERS; TIME; PREDICTORS; SERVICES;
D O I
10.1093/nop/npae033
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Background 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.Objectives 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.Methods 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 Tumor Specific Unmet Needs Survey for carers at baseline, 2, 4, 6, and 12 months. Monthly nurse telephone assessments documented carers' needs, recommendations, and referrals made. Data are reported descriptively.Results 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 tumor 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.Conclusions 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.
引用
收藏
页码:604 / 616
页数:13
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