A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomized controlled trial

This study describes an evaluation of a psycho-educational intervention for family caregivers of patients dying of cancer at home. In a randomized controlled trial, participants (n = 106) received standard home-based palliative care services (n = 52) or these services plus the new intervention (n = 54). Data were collected at three time points: upon commencement of home-based palliative care (Time 1), five weeks later (Time 2), and then eight weeks following patient death (Time 3). No intervention effects were identified with respect to preparedness to care, self-efficacy, competence, and anxiety. However, participants who received the intervention reported a significantly more positive caregiver experience than those who received standard care at both Times 2 and 3. The findings indicate that it is possible to increase caregiver rewards despite being immersed in challenging circumstances that often yield considerable negative psychosocial sequelae. Furthermore, it is feasible for health professionals to discuss emotive topics, such as impending death, with caregivers without adverse effects.     

The experience of research participation for family caregivers of palliative care cancer patients

There have been concerns raised regarding the ethical merit of involving dying patients and family caregivers as research participants. This study sought feedback from 103 primary family caregivers who had participated in a longitudinal research project. Caregivers were sent a questionnaire regarding the benefits and negative aspects associated with participating in research while also supporting or having supported a relative dying of cancer. The study identified that almost three quarters (71.1%) of the 45 respondents reported benefits of being involved in research and the majority (88.9%) cited no negative aspects associated with research participation. Findings of the study suggest that it is pertinent to invite family caregivers to be involved in palliative care research. Moreover, this study demonstrated that not only is it probably safe for family caregivers to be involved in research but also that many participants actually derive benefits.     

基于家庭医生制服务开展社区居家舒缓疗护的效果研究

目的探讨在家庭医生制基础上开展社区居家舒缓疗护服务的效果。方法选择本社区服务中心18例临终患者在家庭医生制基础上开展居家舒缓疗护,比较干预前后患者对该服务的满意度。并针对居家舒缓疗护实践过程遇到的现实问题提出合理建议。结果在社区开展以家庭医生制为基础的居家舒缓疗护模式,社区居民更容易接受。可以提高临终患者生命质量,也能帮助其家属和家庭平稳地度过居丧期,凸显了人文关怀。结论在家庭医生制基础上开展社区居家舒缓疗护切实可行,值得推广。但仍面临社区舒缓疗护人员队伍建设不足、资金匮乏、居民认知度低等问题,需加大队伍建设和培训、资金的更多合理投入和社会的多方支持、关注。     

A multi-professional short-term group intervention for informal caregivers of patients using a home palliative care service

Informal carers of home palliative care patients have high unmet needs. However, interventions for carers are few. This research-based short-term group intervention addresses the information and support needs of carers. Multiprofessional informal teaching is combined with peer support. The intervention was designed by integrating the findings from a qualitative study and the evidence on needs and interventions, in order to address the key issues of feasibility, acceptability, and accessibility. Qualitative data from attendees showed that identifying with other carers and validating feelings, asking questions of professionals, and providing each other with support and encouragement were valuable outcomes from the group.     

Psychological and social profile of family caregivers on commencement of palliative care

ContextPalliative care services are required to support patients who have advanced, life-threatening, noncurable disease, and their family caregivers. Comprehensive psychological and social support for bereaved family members also is expected. However, recent systematic reviews have demonstrated significant gaps in evidence-based approaches for such support. Furthermore, a comprehensive understanding of the psychological and social response to the family caregiver role is required for support to be optimized.ObjectivesWe sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services.MethodsA self-report questionnaire was administered to primary family caregivers of patients within two weeks of admission to three palliative care services in Melbourne, Australia. The questionnaire incorporated six instruments that measured 11 family caregiver-related psychosocial factors; four instruments that measured caregiver psychological distress factors; 14 mental health lifetime risk factors; and a sociodemographic questionnaire.ResultsThree hundred and two family caregivers participated. Nearly half (44%) of the caregivers had a probable anxiety and/or depressive disorder, with 40% scoring more than the cutoff score for probable anxiety and 20% scoring more than the cutoff score for probable depression. Additionally, approximately 15% of caregivers met the criteria for pre-loss grief, and around 10% reported moderate to severe levels of demoralization. Caregivers who had a probable anxiety and/or depressive disorder also reported higher levels of pre-loss grief.ConclusionThis study provides further evidence of the prevalence of poor psychosocial well-being in this population. The results reinforce the need to develop suitable strategies for psychological and social support for family caregivers.     

Informal caregivers in home palliative care

Abstract

In order to deliver palliative care in line with the WHO definition, we must identify and support caregivers. This paper addresses some fundamental questions in defining, identifying and delivering interventions to caregivers. These considerations are key to organisation of appropriate health services, design and conduct of research, and specification and improvement of outcomes. Firstly we consider how we identify caregivers, and how we conceptualise a caregiver from the perspective of health service providers and researchers. We consider caregiver roles across cultures and settings. We then describe the challenges to selecting appropriate outcomes and what our expectations should be for intervention studies in terms of effectiveness, and the tools we use to assess and measure caregiver needs. We conclude with recommendations for future outcomes research.     

Meeting the supportive needs of family caregivers in palliative care: challenges for health professionals

Caring for a dying relative is demanding, and family caregivers have acknowledged many unmet needs associated with their caregiver role. Consistently, caregivers of dying patients with cancer have reported that they need more support and information from health care professionals. Moreover, a number of palliative care clinicians and researchers have called for interventions to enhance the support offered to family caregivers. However, before researchers can develop and test palliative care interventions directed to families, it is important to identify barriers that may confront health care professionals with regard to the provision of supportive family care. For new interventions to be feasible they must be applicable within the constraints of current palliative care service delivery environments. This paper provides an account of issues that may impinge on optimal transference of supportive strategies from health care professionals to family caregivers of patients receiving palliative care. By acknowledging these barriers to supportive care, researchers and health care professionals can begin to design and implement interventions that are clinically relevant and more likely to be effective.     

Research on supporting patients and family caregivers with palliative and end-of-life care

There is an ongoing effort to improve pain management and end-of-life (EOL) care. The investigators of the four research articles presented below address these clinical issues from a variety of perspectives. The first article describes a medication strategy for providing assistance to those who have the dual concern of depression and pain. The second write-up profiles current knowledge, attitudes, and areas needing improvement of nurses providing opioid titration for patients at the EOL. The third article discusses obstacles that oncology nurses report in providing EOL care along with factors that they consider supportive. The last review provides information on a group intervention designed to support family caregivers who are providing care to those at the EOL. Together, these reviews touch on the complex interrelationship among patients, caregivers/families, and healthcare teams at medically complex, critical care times. The articles highlight challenging issues for care management and provide strategies that can be evaluated for use in the home care environment. Interested readers are encouraged to read the articles for full information about the interventions and findings.     

Participants' experiences of a support group intervention for family members during ongoing palliative home care

The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups.     

Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study

Objectives

There is little research on complicated grief (CG) in family caregivers in palliative care. The aim of the study was to assess the levels of complicated grief and depression in family caregivers after the death of a relative with cancer, to identify their need for support, to compare the palliative team staff’s risk assessment of the relatives’ grief reaction with measured levels of CG and depression, and to assess the use of bereavement support.

Methods

All 114 eligible family caregivers to deceased patients treated in a palliative care unit in the year 2006 were asked to participate in the study, and 87 (77%) accepted. The participants completed a postal questionnaire 2, 6, 13, and 18?months after the loss measuring complicated grief (Inventory of Complicated Grief, Revised), depression (Beck’s Depression Inventory II), and their use of bereavement services. The palliative team staff completed a form 1?month post-loss with their clinical risk assessment of the family caregivers’ levels of complicated grief and need for support.

Results

The prevalence of moderate to severe depression and CG was 15% and 40%, respectively, at 6?months post-loss. Professional risk assessment showed a sensitivity of 55% for CG and of 27% for depression and a specificity of 86% for depression and 63% for CG. The positive predictive value was 27% for depression and 21% for CG. Use of bereavement services was observed in 36% of the cases at 6?months after the loss. The proportion of bereaved with CG or depression at 6?months who had received bereavement services was 47% and 64%, respectively.

Conclusions

The results suggest that a substantial number of family caregivers of diseased palliative care patients are at risk of developing CG and depression following their loss. While early identification of those at risk of developing CG could be helpful, the risk assessment of professionals may lack in precision. The results indicate that bereavement services could be utilized in a more targeted and perhaps more efficient manner. Guidelines for bereavement planning in palliative care are indicated.