Kristina Thomas

A systematic review of psychosocial interventions for family carers of palliative care patients

BackgroundBeing a family carer to a patient nearing the end of their life is a challenging and confronting experience. Studies show that caregiving can have negative consequences on the health of family carers including fatigue, sleep problems, depression, anxiety and burnout. One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness. A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers. We wanted to discern whether or not the evidence base to support family carers has improved. Furthermore, undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org.MethodsA systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade. The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients. Studies were graded to assess their quality.ResultsA total of fourteen studies met the inclusion criteria. The focus of interventions included psycho-education, psychosocial support, carer coping, symptom management, sleep promotion and family meetings. Five studies were randomised controlled trials, three of which met the criteria for the highest quality evidence. There were two prospective studies, five pre-test/post-test projects and two qualitative studies.ConclusionsThe systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade. More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients.

A systematic review of instruments related to family caregivers of palliative care patients

Support for family caregivers is a core function of palliative care. However, there is a lack of consistency in the way needs are assessed, few longitudinal studies to examine the impact of caregiving, and a dearth of evidence-based interventions. In order to help redress this situation, identification of suitable instruments to examine the caregiving experience and the effectiveness of interventions is required. A systematic literature review was undertaken incorporating representatives of the European Association for Palliative Care’s International Palliative Care Family Caregiver Research Collaboration and Family Carer Taskforce. The aim of the review was to identify articles that described the use of instruments administered to family caregivers of palliative care patients (pre and post-bereavement). Fourteen of the 62 instruments targeted satisfaction with service delivery and less than half were developed specifically for the palliative care context. In approximately 25% of articles psychometric data were not reported. Where psychometric results were reported, validity data were reported in less than half (42%) of these cases. While a considerable variety of instruments have been administered to family caregivers, the validity of some of these requires further consideration. We recommend that others be judicious before developing new instruments for this population.

Psychological and Social Profile of Family Caregivers on Commencement of Palliative Care

CONTEXT Palliative 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. OBJECTIVES We sought to examine the psychological and social profile of family caregivers on commencement of receiving palliative care services. METHODS A 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. RESULTS Three 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. CONCLUSION This 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.

Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients

BACKGROUND Support for family caregivers, including bereavement follow-up, is a core function of palliative care. Many caregivers acknowledge positive aspects associated with the role; however a considerable proportion will experience poor psychological, social, financial, spiritual, and physical well-being and some will suffer from complicated grief. Many family caregivers have unmet needs and would like more information, preparation, and support to assist them in the caregiving role. There is a shortage of evidence-based strategies to guide health professionals in providing optimal support while the caregiver is providing care and after the patients death. PURPOSE To develop clinical practice guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. METHODS (1) Literature review; (2) focus groups and structured interviews with key stakeholders within Australia; (3) national and international expert opinion to further develop and refine the guidelines using a modified Delphi process; and (4) endorsement of the guidelines from key palliative care, caregiver, and bereavement organizations (national and international). RESULTS The guidelines were developed for multidisciplinary health care professionals and clinical services commonly involved in caring for adult patients receiving palliative care in a variety of care sites throughout Australia. These consensus-based guidelines have been endorsed key Australian and international organizations. CONCLUSIONS The guidelines may prove valuable for the international palliative care community and for generalist health care providers who occasionally care for palliative care patients. Research is recommended to explore the uptake, implementation, and effectiveness of the guidelines.

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.

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

Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity. However, systematically implemented evidence‐based psychological support initiatives are lacking.

Meeting the needs of family carers: an evaluation of three home-based palliative care services in Australia

While policy promotes comprehensive assessment of family carer needs and a plan to adequately meet family carer needs within palliative care, there is a lack of studies in the Australian context which examine the current type of assessment and types of care provided to family carers. The aims of this study were (1) to determine how carer needs are currently assessed and what level of support is available to family carers in three home-based palliative care services within Australia, (2) identify areas for improvement of support to carers and, (3) explore the barriers to offering carer support. A focus group and file audit were conducted at two metropolitan and one regional home-based palliative care service in Australia. These palliative care sites reported substantially different levels of services provided to family carers and also reported multiple barriers to providing services for family carers. Only one site had a formal structured procedure to assess carer needs and none of the sites used a separate carer care plan or offered a structured intervention to assist carers with their role. Family meetings were offered infrequently by most sites. A number of barriers to supporting carers were highlighted including lack of resources, and areas for improvement were also suggested by health professionals from the sites.

Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study

Background: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. Aim: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. Design: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. Setting/participants: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a ‘primary caregiver’ for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. Results: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents’ physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as ‘protector’, reporting acquired meaning and purpose. Conclusion: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.

The development and evaluation of a multimedia resource for family carers of patients receiving palliative care: A consumer-led project

OBJECTIVE Previous intervention research has shown that group education sessions for carers are effective but not always feasible due to the demands of the caregiving role and the difficulty in getting carers to attend. This project was a consumer-led research initiative to develop and evaluate a multimedia resource (DVD) providing information and support for carers of people receiving palliative care. METHOD Eight carers were recruited from a community palliative care service to form a steering committee for the project. In collaboration with two researchers, the committee discussed the topics that would be included in the resource, developed an interview guide, participated in the filmed interviews, and developed the evaluation program. The steering committee participated in a focus group as part of the evaluation to elicit their experiences of the project. An evaluation was conducted that included the following: questionnaires for 29 carers and 17 palliative care health professionals; follow-up telephone interviews with carers; a focus group with health professionals; and a focus group with the Carer Steering Committee. RESULTS The carers and health professionals reported that the DVD was informative (93 and 94%, respectively), realistic (96 and 88%), supportive (93 and 88%), and helpful (83 and 100%). All health professionals and carers reported that they would recommend the resource to carers. Carers on the steering committee reported substantial benefits that involved the opportunity to help others and to openly discuss and reflect on their experiences. SIGNIFICANCE OF RESULTS This is an important resource that can be utilized to support family carers and introduce palliative care. Currently, 1500 copies have been distributed to palliative care services and professionals nationwide and is available online at centreforpallcare.org/index.php/resources/carer_dvd/. Development of this DVD represents a strong collaboration between carers and researchers to produce a resource that is informative, supportive, and meaningful.

Establishment and preliminary outcomes of a palliative care research network

OBJECTIVE The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. METHOD Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. RESULTS Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. SIGNIFICANCE OF RESULTS The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.