A systematic review of informal caregivers’ needs in providing home‐based end‐of‐life care to people with cancer

Bee, Penny; Barnes, Pamela; Luker, Karen A.

doi:10.1111/j.1365-2702.2008.02405.x

Cited by 262 publications

(274 citation statements)

References 46 publications

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“…Although achieving optimal symptom control is challenging in the hospital, ensuring that the patient will be comfortable after hospital discharge, often in the care of untrained family members, is even more challenging. 16,17 Our study suggests that PCTs have to address this transitional gap. However, there are several systemic barriers.…”

Section: Discussionmentioning

confidence: 88%

Discharge Planning for Palliative Care Patients: A Qualitative Analysis

Benzar

Hansen

Kneitel

et al. 2011

Journal of Palliative Medicine

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For patients hospitalized with life-threatening illnesses and their families, palliative care consultants can provide critical support by providing information about prognosis, ensuring that symptoms are managed, helping to clarify goals of care, and addressing psychosocial and spiritual concerns. However, once patients leave the hospital, many hospital-based palliative care teams (PCTs) cannot continue to play active roles in patient care. Gaps in discharge planning not only decrease quality of life for patients, but also translate into lack of support for caregivers. The palliative care population would be expected to benefit from a customized approach to hospital discharge. The aim of this study was to identify the range of health care experiences of family caregivers and patients who received palliative care consultations after they left the hospital, and to understand how PCTs might best prepare patients and caregivers for the post-hospital experience.

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Section: Discussionmentioning

confidence: 88%

Discharge Planning for Palliative Care Patients: A Qualitative Analysis

Benzar

Hansen

Kneitel

et al. 2011

Journal of Palliative Medicine

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“…Notwithstanding potential benefits attained from caregiving such as the strengthening their relationship with the patient, the development of new skills, and spiritual growth 8 , and an increased appreciation for life, 9 family caregivers engage in care that may be financially costly, time consuming, physically demanding, and stigma inducing, and that usually impacts negatively on their ability to engage in social and recreational activities. [10][11][12][13] Needs include practical information, 14 emotional support, 15 economic assistance and housing support, 13 improved coordination of formal care and allied services, 16 and bereavement support, 17 while outcomes when engaging in care may include symptoms of psychiatric morbidity 18 and psychological distress; 19 these needs remain largely unmet by services. 20 Despite the practical relevance for providing supports and services to family caregivers, pre-and post-bereavement, the effect of caregiving on bereavement is less clear.…”

Section: Prioritiesmentioning

confidence: 99%

The effect of caring on post-bereavement outcome: Research gaps and practice priorities

Breen

2012

Progress in Palliative Care

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Family caregivers are the primary caregivers of family members over the course of illness.Some caregivers exhibit elevated levels of distress following the death of the person for whom they were caring. Despite the practical relevance for providing supports and services to caregivers and families, pre-and post-bereavement, the effect of caregiving on bereavement is obscured. In examining the research literature on caregiving and bereavement, three methodological limitations were identified -caregivers' perspectives on preparing for the death of the person for whom they are caring is typically not assessed; the effect of caring on post-death adjustment tends to be assessed qualitatively, cross-sectionally, and retrospectively; and there is a lack of adequate comparison groups. This paper highlights the need to address two important gaps in understanding the effects of caregiving and bereavement: (1) caregivers' understandings and experiences of the anticipating and preparing for the death of the person for whom they are caring, and (2) the relationship between caregivers' pre-death grief and distress and post-death adjustment. Caregivers relieve significant costs from the health system, and improved support, pre-and postbereavement, will continue to benefit them as well as society. Without significant research investment, palliative care services will continue to operate without a suitable evidence base to support their bereavement care efforts. The experiences and needs of family caregivers during this time are relatively welldocumented. Notwithstanding potential benefits attained from caregiving such as the strengthening their relationship with the patient, the development of new skills, and spiritual growth 8 , and an increased appreciation for life, 9 family caregivers engage in care that may be financially costly, time consuming, physically demanding, and stigma inducing, and that usually impacts negatively on their ability to engage in social and recreational activities. [10][11][12][13] Needs include practical information, 14 emotional support, 15 economic assistance and housing support, 13 improved coordination of formal care and allied services, 16 and bereavement support, 17 while outcomes when engaging in care may include symptoms of psychiatric morbidity 18 and psychological distress; 19 these needs remain largely unmet by services. 20 Despite the practical relevance for providing supports and services to family caregivers, pre-and post-bereavement, the effect of caregiving on bereavement is less clear. Keywords Caring and bereavement 4This paper summarises what is known about the effects of family caregiving on bereavement outcome, and demonstrates that this knowledge is hampered by three serious methodological limitations. The implications for future research in addressing these limitations and developing an evidence-base for bereavement support in palliative care are outlined. Limitations to Current Understandings of Caring and BereavementA recent review of the caregiving and bereavement li...

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“…41 Carers' willingness to continue in the caring role needs to be constantly reassessed, given that some people have indicated that they are reluctant to be in the role. 10 Ultimately, how can unwillingness to care again be minimized?…”

Section: Implications For Clinicians and Policymakersmentioning

confidence: 99%

Palliative Caregivers Who Would Not Take on the Caring Role Again

Currow

Burns

Agar

et al. 2011

Journal of Pain and Symptom Management

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Context. Health and social services rely heavily on family and friends for caregiving at the end of life.Objectives. This study sought to determine the prevalence and factors associated with an unwillingness to take on the caregiving role again by interviewing former caregivers of palliative care patients.Methods. The setting for this study was South Australia, with a population of 1.6 million people (7% of the Australian population) and used the South Australian Health Omnibus, an annual, face-to-face, cross-sectional, whole-of-population, multistage, systematic area sampling survey, which seeks a minimum of 3000 respondents each year statewide. One interview was conducted per household with the person over the age of 15 who most recently had a birthday. Using two years of data (n ¼ 8377; 65.4% participation rate), comparisons between those who definitely would care again and those who would not was undertaken.Results. One in 10 people across the community provided hands-on care for someone close to them dying an expected death in the five years before being interviewed. One in 13 (7.4%) former caregivers indicated that they would not provide such care again irrespective of time since the person's death and despite no reported differences identified in unmet needs between those who would and would not care again. A further one in six (16.5%) would only ''probably care again.'' The regression model identified that increasing age lessens the willingness to care again (odds ratio [OR] 3.94; 95% confidence interval [CI] 1.56, 9.95) and so does lower levels of education (OR 0.413; 95% CI 0.18, 0.96) controlling for spousal relationship.

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A systematic review of informal caregivers’ needs in providing home‐based end‐of‐life care to people with cancer

Cited by 262 publications

References 46 publications

Discharge Planning for Palliative Care Patients: A Qualitative Analysis

Discharge Planning for Palliative Care Patients: A Qualitative Analysis

The effect of caring on post-bereavement outcome: Research gaps and practice priorities

Palliative Caregivers Who Would Not Take on the Caring Role Again

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