Caregiver Handbook

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Clinical practice guidelines

The American Society of Clinical Oncology’s clinical practice guidelines on palliative recommends that nurses, social workers, or other providers may initiate caregiver-tailored palliative care support for family or friend caregivers providing care at home or outside a health facility to people with cancer at any stage.

Distress among cancer caregivers

Emotional distress among caregivers is common.¹Geng HM, Chuang DM et al. Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis. Medicine (Baltimore). 2018 Sep;97(39):e11863; van Warmerdam J, Zabih V et al. Prevalence of anxiety, depression, and posttraumatic stress disorder in parents of children with cancer: a meta-analysis. Pediatric Blood & Cancer. 2019 Jun;66(6):e27677. Both caregivers and their loved ones with cancer benefit from paired psychosocial interventions targeting self-care and interpersonal connections of caregivers and symptom management of patients.²Fu F, Zhao H, Tong F, Chi I. A systematic review of psychosocial interventions to cancer caregivers. Frontiers in Psychology. 2017 May 23;8:834. Spouses of people diagnosed with cancer may also be at increased risk of suicide, especially during the first year following diagnosis.³Liu Q, Yang F et al. Suicide attempt and suicide death among spouses of patients with cancer. JAMA Oncology. 2024 Aug 15:e243036.

Caregivers can benefit from interventions that enhance their ability to accept their situation and find meaning in their caregiving experience. This may improve their satisfaction with life and reduce their depressive symptoms.⁴Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. Psychosomatic Medicine. 2007 Apr;69(3):283-91. Interventions designed to help caregivers manage their own emotional distress as well as the survivors’ distress can help them find meaning in the cancer caregiving experience and foster supportive familial relationships that will benefit the caregivers quality of life, not only during the time of diagnosis and treatment, but for years afterward.⁵Kim Y, Kashy DA, Spillers RL, Evans TV. Needs assessment of family caregivers of cancer survivors: three cohorts comparison. Psychooncology. 2010 Jun;19(6):573-82.

Helpful links for professionals

Practical and therapeutic support for caregivers

Dalton J, Thomas S, Harden M, Eastwood A, Parker G. Updated meta-review of evidence on support for carers. Journal of Health Services Research & Policy. 2018 Jul;23(3):196-207.

Sheng N, Ma J, Ding W, Zhang Y. Effects of caregiver-involved interventions on the quality of life of children and adolescents with chronic conditions and their caregivers: a systematic review and meta-analysis. Quality of Life Research. 2019 Jan;28(1):13-33.

Tang WP, Chan CW, Leung DP, Chan DS. The effects of psychoeducational interventions on caregivers of children with cancer: a meta-analysis of randomized controlled trials. Journal of Child Health Care. 2020 Mar;24(1):123-142.

Taylor C. Supporting the carers of individuals affected by colorectal cancer. British Journal of Nursing. 2008 Feb 28-Mar 12;17(4):226-30.

Young J, Snowden A. A systematic review on the factors associated with positive experiences in carers of someone with cancer. European Journal of Cancer Care. 2017 May;26(3).

Langenberg SMCH, van Herpen CML et al. Caregivers’ burden and fatigue during and after patients’ treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: a prospective, observational pilot study. Support Care Cancer. 2019 Nov;27(11):4145-4154.

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Journal articles

Lopez G, Chaoul A et al. A pragmatic evaluation of symptom distress after group meditation for cancer patients and caregivers: a preliminary report. Journal of Pain and Symptom Management. 2018 May;55(5):1321-1326.e1.

Kang SG, Song SW et al. Fatigue and mental status of caregivers of severely chronically ill patients. Pain Research and Management. 2020 Sep 7;2020:6372857.

Clark MM, Atherton PJ et al. Caregivers of patients with cancer fatigue: a high level of symptom burden. American Journal of Hospice & Palliative Care. 2014 Mar;31(2):121-5. 

Jensen S, Given B. Fatigue affecting family caregivers of cancer patients. Support Care Cancer. 1993 Nov;1(6):321-5.