Predictors of bereavement outcome for family carers of cancer patients

Kelly, Brian; Edwards, Paula J.; Synott, R.; Neil, Christopher; Baillie, R.; Battistutta, Diana

doi:10.1002/(sici)1099-1611(199905/06)8:3<237::aid-pon375>3.0.co;2-c

Cited by 97 publications

(110 citation statements)

References 46 publications

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“…[28][29][30][31][32][33][34][35] The finding that a large proportion of caregivers suffered from both anxiety and depression suggests that there are unmet needs that are measurable at an early stage of the patient's life-limiting illness, and points to the need for early psychological assessment and potential intervention. 36 Our research with a subset of these same caregivers during their bereavement suggests that they are so focused on their caregiving role that their own medical needs go unattended, 37 as has been found in other studies. 38 Our findings indicate that, although patient's physical and emotional factors predict caregiver distress, perceived burden is the strongest predictor of caregiver anxiety and depression.…”

Section: Discussionsupporting

confidence: 60%

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Grunfeld¹

2004

Canadian Medical Association Journal

786

673

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Background: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤ 50). Results: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. Interpretation: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.

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Section: Discussionsupporting

confidence: 60%

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Grunfeld¹

2004

Canadian Medical Association Journal

786

673

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“…Several previous studies give indirect support for our findings. It has been reported that the well-being of cancer patients and their family caregivers is interrelated during the illness (Cassileth et al, 1985;Kurz et al, 1995;Kristjanson et al, 1996;Hodgson et al, 1997) and others have found the mental condition of the well partner during the terminal period to be the main risk factor of morbidity in widowhood (Kelly et al, 1999). We have no indication of that validity problems explain our findings.…”

Section: Discussioncontrasting

confidence: 50%

The unrecognised cost of cancer patients' unrelieved symptoms:a nationwide follow-up of their surviving partners

Valdimarsdóttir

et al. 2002

Br J Cancer

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We investigated if a cancer patient's unrelieved symptoms during the last 3 months of life increase the risk of long-term psychological morbidity of the surviving partner. All women (n=506) living in Sweden under 80 years of age, who lost their husband/partner owing to cancer of the prostate in 1996 or of the urinary bladder in 1995 or 1996 were asked to answer an anonymous postal questionnaire, 2 -4 years after their loss. The widows' psychological morbidity was associated with the patient's unrelieved mental symptoms. When the patient was perceived to have been very anxious during last three months of life (compared to no observed symptoms) the relative risks for the widows' psychological morbidity were: 2.5 (1.4 -4.3) for depression and 3.4 (1.4 -8.2) for anxiety. When comparing reports of the patient's pain (much vs no), the relative risks were 0.8 (0.5 -1.2) for widowhood depression, and 0.8 (0.4 -1.7) for widowhood anxiety. The patients were found to have had adequate access to physical pain control but poor access to psychological symptom control. Efficiency in diagnosing and treating psychological complications of terminally ill cancer patients may not only improve their quality of life but possibly also prevent long-term psychological morbidity of their surviving partners.

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“…Second, the effect of family caregiving on post-death adjustment tends to be assessed qualitatively, cross-sectionally and/or retrospectively 29,[31][32][33] or over a very short period of time, 34,35 or with just two data collection points. 32,34,35 Third, there are several longitudinal studies without adequate comparison groups 28,36 whereby participants are compared to a noncaregiving sample matched to key demographics such as age, sex, domestic arrangements, and household income.…”

Section: Limitations To Current Understandings Of Caring and Bereavementmentioning

confidence: 99%

“…32,34,35 Third, there are several longitudinal studies without adequate comparison groups 28,36 whereby participants are compared to a noncaregiving sample matched to key demographics such as age, sex, domestic arrangements, and household income. These limitations exist across studies of caregivers of patients with a variety of chronic illnesses.…”

Section: Limitations To Current Understandings Of Caring and Bereavementmentioning

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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Predictors of bereavement outcome for family carers of cancer patients

Cited by 97 publications

References 46 publications

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

The unrecognised cost of cancer patients' unrelieved symptoms:a nationwide follow-up of their surviving partners

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

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