Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial.

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.

Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ).

Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia.

Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group.

Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry. © 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.

The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Objective: Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Method: A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.

Results: Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.

Conclusion: All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.

A Comparison of Support Needs Between Rural and Urban Family Caregivers Providing Palliative Care

The present study examined the support needs for urban and rural family caregivers of a palliative family member using a cross-sectional telephone survey in northeastern Ontario, Canada (n = 140; 70 urban, 70 rural). Support needs identified as most important by both the groups were informational. Rural caregivers reported greater unmet needs in tangible support (P =.01). No differences were observed between the groups for emotional or informational support needs (P =.25 and P =.35, respectively). Rural and urban caregivers perceived care for care recipients as accessible (mean accessibility score 1.9, standard deviation [SD] = 0.09 and 1.7, SD = 0.7, respectively, P =.20); the majority indicated that when needed, services were easily and quickly obtained. Although there are similarities in the formal care experiences, rural caregivers experience greater unmet needs in receiving support for instrumental activities. © The Author(s) 2013.

Comparing the experiences of rural and urban family caregivers of the terminally ill

Introduction: There are many challenges in delivering rural health services; this is particularly true for the delivery of palliative care. Previous work has identified consistent themes around end-of-life care, including caregiver burden in providing care, the importance of informal care networks and barriers imposed by geography. Despite these well-known barriers, few studies have explored the experience of palliative care in rural settings. The purpose of the present study was to compare the experiences of rural family caregivers actively providing end-of-life care to the experiences of their urban counterparts. Methods: Caregivers' perceived health status, the experience of burden in caregiving, assessment of social supports and the pattern of formal care used by the terminally ill were explored using a consistent and standardized measurement approach. A cross-sectional survey study was conducted with 100 informal caregivers (44 rural, 56 urban) actively providing care to a terminally ill patient recruited from a publicly funded community agency located in northeastern Ontario, Canada. The telephone-based survey included questions assessing: (i) caregiver perceived burden (14-item instrument based on the Caregiver's Burden Scale in End-of-Life Care [CBS-EOLC]); (ii) perceived social support (modified version of the Multidimensional Scale of Perceived Social Support [MSPSS] consisting of 12 items); and (iii) functional status of the care recipient (assessed using the Eastern Collaborative Oncology Group performance scale). Results: Rural and urban caregivers were providing care to recipients with similar functional status; the majority of care recipients were either capable of all self-care or experiencing some limitation in self-care. No group differences were observed for caregiver perceived burden: both rural and urban caregivers reported low levels of burden (CBS-EOLC score of 26.5 [SD=8.1] and 25.0 [SD=9.2], respectively; p=0.41). Urban and rural caregivers also reported similarly high levels of social support (mean MSPSS total score of 4.3 [SD=0.7] and 4.1 [SD=0.8], respectively; p=0.40). Although caregivers across both settings reported using a comparable number of services (rural 4.8 [SD=1.9] vs urban 4.5 [SD=1.8]; p=0.39), the types of services used differed. Rural caregivers reported greater use of family physicians (65.1% vs 40.7%; p=0.02), emergency room visits (31.8% vs 13.0%; p=0.02) and pharmacy services (95.3% vs 70.4%; p=0.002), while urban caregivers reported greater use of caregiver respite services (29.6% vs 11.6%; p=0.03). Conclusion: Through the use of standardized tools, this study explored the experiences of rural informal family caregivers providing palliative care in contrast to the experiences of their urban counterparts. The results of the present study suggest that while there are commonalities to the caregiving experience regardless of setting, key differences also exist. Thus, location is a factor to be considered when implementing palliative care programs and services. © K Brazil, S Kaasalainen, A Williams, C Rodriguez, 2013.

Caregiving reduces mortality risk for most caregivers: a census-based record linkage study

Importance Countries with advanced welfare systems are increasingly relying on the input of informal caregivers and there are growing concerns for their mental and physical wellbeing. However, the evidence about the relationship between caregiving and mortality risk is less clear.

Methods A census-based record linkage study with mortality follow-up of thirty-three months. A total of 1,122,779 individuals including 183,842 caregivers, of whom 28.2% (51,927) were providing fifty or more hours caregiving per week.

Results Over thirty-three months of follow-up a total of 29,335 deaths occurred, with 2,443 of these to caregivers. Mortality risk for caregivers was lower than for non-caregivers (HR= 0.72: 95%CI=0.69, 0.75 in the fully adjusted model), and the lower risk was evident even for those providing fifty or more hours of caregiving per week (adjusted Hazard Ratio=0.77: 95%CI=0.71, 0.83 and 0.76: 95%CI=0.69, 0.83 for men and women respectively). There was no evidence that this relationship varied by either age or marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.


Keywords: caregiving, carers, mortality, longitudinal follow-up.
marital status. Even amongst people with chronic health problems such as poor mental health, caregivers had lower mortality risk than non-caregivers. Caregiving is associated with reduced mortality risk for most causes - for example, the risk of death from Ischaemic Heart Disease for caregivers providing fifty or more hours was 27% and 31% lower for men and for women respectively compared to non-caregivers (HR=0.73: 95%CI=0.60, 0.88 and HR=0.69: 95%CI=0.51, 0.92).

Conclusions This large population-based study confirms that for the majority of caregivers the beneficial effects of caregiving in terms of short-term mortality risk appear to outweigh any negative effects, even amongst people with significant health problems. These results underscore the need for a reappraisal of how caregiving is perceived.