Benefits and resource implications of family meetings for hospitalized palliative care patients: research protocol.

BACKGROUND: Palliative care focuses on supporting patients diagnosed with advanced, incurable disease; it is 'family centered', with the patient and their family (the unit of care) being core to all its endeavours. However, approximately 30-50% of carers experience psychological distress which is typically under recognised and consequently not addressed. Family meetings (FM) are recommended as a means whereby health professionals, together with family carers and patients discuss psychosocial issues and plan care; however there is minimal empirical research to determine the net effect of these meetings and the resources required to implement them systematically. The aims of this study were to evaluate: (1) if family carers of hospitalised patients with advanced disease (referred to a specialist palliative care in-patient setting or palliative care consultancy service) who receive a FM report significantly lower psychological distress (primary outcome), fewer unmet needs, increased quality of life and feel more prepared for the caregiving role; (2) if patients who receive the FM experience appropriate quality of end-of-life care, as demonstrated by fewer hospital admissions, fewer emergency department presentations, fewer intensive care unit hours, less chemotherapy treatment (in last 30 days of life), and higher likelihood of death in the place of their choice and access to supportive care services; (3) the optimal time point to deliver FM and; (4) to determine the cost-benefit and resource implications of implementing FM meetings into routine practice. METHODS: Cluster type trial design with two way randomization for aims 1-3 and health economic modeling and qualitative interviews with health for professionals for aim 4. DISCUSSION: The research will determine whether FMs have positive practical and psychological impacts on the family, impacts on health service usage, and financial benefits to the health care sector. This study will also provide clear guidance on appropriate timing in the disease/care trajectory to provide a family meeting. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12615000200583.

"A quiet still voice that just touches": music's relevance for adults living with life-threatening cancer diagnoses.

PURPOSE: Music has historically aided health and loss-adaptation, however, cancer patients' experience of music for self-care is not well understood. This study examines adult cancer patients' views about music's role before and after diagnosis. METHODS: Constructivist approach, with grounded theory informed design using convenience, snowball and theoretical sampling. Patients from Australian metropolitan cancer and hospice settings completed demographic questionnaires and participated in semi-structured interviews. Qualitative inter-rater reliability was applied. RESULTS: Fifty-two patients reported comparable time spent experiencing music pre-post diagnosis. Music may remain incidental; however, many patients adapt music usage to ameliorate cancer's aversive effects. Patients often draw from their musical lives and explore unfamiliar music to: remain connected with pre-illness identities; strengthen capacity for enduring treatment, ongoing survival (even when knowing "you're going to die"), or facing death; reframe upended worlds; and live enriched lives. Patients can ascribe human or physical properties to music when describing its transformative effects. Familiar lyrics maybe reinterpreted, and patients' intensified emotional reactions to music can reflect their threatened mortality. Sometimes music becomes inaccessible, elusive, and/or intensifies distress and is avoided. Families', friends' and professionals' recognition of patients' altered musical lives and music-based suggestions can extend patients' use of music for self-care. CONCLUSION: Health professionals can support patients by inquiring about their music behaviours and recognising that altered music usage may signify vulnerability. Although commonly recommended, hospital concerts and music broadcasts need sensitive delivery. Patients' preferred music should be available in diagnostic, treatment and palliative settings because it can promote endurance and life enrichment.

Effectiveness of using clinical guidelines for conducting palliative care family meetings in Japan.

PURPOSE: The purpose of this study is to pilot test the effectiveness of using recently developed clinical guidelines from Australia for conducting palliative care family meetings in Japan. METHODS: Palliative care family meetings were conducted using clinical guidelines with 15 primary family carers of cancer patients who were admitted to an acute care hospital in Japan. Using the pre-family meeting questionnaire, the primary carers were asked to write key concerns to discuss during the family meetings and rate their concerns via a numerical rating scale: how upset/worried they were about the problem, frequency in which problem occurs, life interference with the problem, and the confidence to deal with the problem. Within 3 days after the meeting, the primary carers were asked to complete the post-meeting questionnaire to evaluate the effectiveness of the family meeting. RESULTS: There was a significant improvement in family carers' psychological well-being in the post-meeting questionnaires compared to the pre-meeting questionnaires as follows: how upset/worried they were about the problem, t(14) = 3.1071, p < 0.000011; frequency in which problem occurs, t(14) = 3.2857, p < 0.000013; life interference with the problem, t(14) = 2.7857, p < 0.000008; and the confidence to deal with the problem, t(13) = -2.3007, p < 0.005480. CONCLUSIONS: In accordance with the study aims, we were able to demonstrate the utility of a questionnaire as an essential tool to plan and conduct effective communication between health professionals and primary family carers in Japanese cancer patients. This pilot test should be followed up with a larger sample and a controlled trial.

Psycho-educational group intervention for family caregivers of hospitalized palliative care patients: pilot study.

BACKGROUND: Family caregivers of patients requiring palliative care commonly experience physical, social, and psychological burdens. Although family caregivers are acknowledged as valid service recipients of palliative care, many have unmet needs, and systematic reviews have shown there are limited evidence-based supportive interventions. OBJECTIVES: This study aimed to develop and pilot test a psycho-educational group education program delivered in the inpatient specialist palliative care setting and designed to prepare primary family caregivers for the role of supporting a relative receiving hospital-based palliative care. METHODS: (1) Development of education session and delivery protocol by the research team and expert panel; (2) pilot the intervention in three clinical sites (five sessions in total); (3) evaluate its accessibility and acceptability; and (4) preliminary testing of outcome measures used to access the intervention's effectiveness. RESULTS AND CONCLUSION: The results revealed that the intervention was appropriate and acceptable to caregivers. The intervention needs to be tested in a larger sample to determine the potential benefits for caregivers' sense of preparedness and competence, and testing needs to ascertain if the intervention is accessible.

Supporting family caregivers of hospitalised palliative care patients: a psychoeducational group intervention.

BACKGROUND: Many family caregivers of palliative care patients experience poor health and have other unmet needs, requiring health professionals' support. However, there are few evidence-based supportive interventions to address these issues. PURPOSE: The purpose of this project was to undertake preliminary testing of a psychoeducational group education programme, delivered in an in-patient setting, designed to prepare family caregivers for the role of supporting a relative currently receiving hospital-based palliative care. METHODS: A pilot phase was conducted to develop the intervention and explore its utility. Thereafter the single session intervention was delivered in five palliative care units in three states of Australia and its effectiveness was examined using a pre-post design. Outcome variables included caregiver preparedness, competence and unmet needs. Psychological wellbeing was measured in order to determine if there were any deleterious psychological outcomes. RESULTS: One hundred and twenty-six participants completed Time 1 data and 107 (84.9%) completed Time 2 data (post-intervention). There were statistically significant improvements in caregivers' sense of preparedness (p=<.001; effect size (ES) 0.43) and a significant reduction in unmet caregiver needs (p=014; ES 0.22). There was no significant effect on psychological wellbeing and the improvement on competence fell short of statistical significance. CONCLUSIONS: This study reinforces the notion that psychoeducational interventions for this population can potentially be applicable, acceptable and effective. However, the number of participants who were recruited and attended each session was fewer than anticipated, resulting in methodological implications. It is recommended that the intervention undergo further empirical inquiry, such as via a controlled trial.

Research priorities associated with family caregivers in palliative care: international perspectives.

BACKGROUND AND PURPOSE: Reviews of the literature have consistently highlighted significant gaps with regard to research associated with family caregivers within the context of palliative care. We sought to determine a priority driven research agenda for this field of inquiry. METHODS: A Web-based survey was sent to 80 people who had previously expressed interest in, or were members of The International Palliative Care Family Carer Research Collaboration (http://centreforpallcare.org/index.php/research/ipcfcrc/). RESULTS: Fifty-five participants completed the survey (response rate, 70%) from 12 countries. Priority research areas included: intervention development and testing; underresearched caregiver groups; access to services; unmet needs; bereavement; experience and implications of the caregiver role; and development of assessment tools. Qualitative responses complemented these data and also acknowledged the importance of collaboration and development of a critical mass of researchers focusing in this area in order to progress knowledge. CONCLUSIONS: These results reinforce the findings of systematic reviews that have demonstrated a need for the evolution of intervention development focused on improving family caregiver support. However, there are other key areas that also warrant comprehensive attention, including marginalized family caregivers and strategies to assist health professionals to identify family caregivers who have significant psychosocial issues.

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.

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

BACKGROUND: Being 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: The 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.

Desire for hastened death in patients with advanced disease and the evidence base of clinical guidelines: a systematic review.

PURPOSE: Patients' desire for hastened death within the context of advanced disease and palliative care is a controversial topic, frequently discussed in the international literature. Much of the discussion has focused on opinion and debate about ethical matters related to hastened death. Not many research studies seem to have specifically targeted why palliative care patients may desire hastened death, and few have focused on clinical guidelines for responding to such requests. METHODS: Using a systematic literature review process, we evaluated the research evidence related to the reasons patients express a desire for a hastened death, and the quality of clinical guidelines in this area. RESULTS: Thirty-five research studies met the inclusion criteria related to reasons associated with a desire for hastened death. The factors associated with a desire to die were often complex and multifactorial; however, psychological, existential and social reasons seem to be more prominent than those directly related to physical symptoms, such as pain. Much of the evidence supporting the reasons for these statements is based on: (a) patients' perceptions of how they may feel in the future, and (b) health professionals' and families' interpretations of why desire to die statements may have been made. Several publications provided expert opinion for responding to requests for physician-assisted suicide and euthanasia. In keeping with this limited research base, there is a lack of evidence-based guidelines for clinical care that addresses the desire to die among terminally ill patients. Most literature has focused on discipline specific responses, with minimal exploration of how clinicians might respond initially to a statement from a patient regarding a desire to die. CONCLUSIONS: In order to advance understanding of the complex issue of desire for hastened death in the context of palliative care, research should focus on studies with patients who have actually made a desire to die statement and the development of guidelines to help health professionals respond. Direction for research in this area is described.

Responding to desire to die statements from patients with advanced disease: recommendations for health professionals.

It is not uncommon for patients with advanced incurable disease to express a desire to hasten their death. Health professionals often have difficulty responding to such statements, and find it challenging to ascertain why these statements are made. Health professionals may struggle to determine whether a 'desire to die' statement (DTDS) is about a request for hastened death, a sign of psychosocial distress, or merely a passing comment that is not intended to be heard literally as a death wish. Given the lack of guidelines to assist health professionals with this issue, we have prepared multidisciplinary recommendations for responding to a DTDS, underpinned by key principles of therapeutic communication and a systematic review of empirical literature. Where the relevant literature was lacking, the recommendations were drafted by the authors (clinicians and/ or academics from the following disciplines: nursing, medicine, psychiatry, psychology, sociology, aged care and theology), based on their expert opinion. Multiple drafts of the recommendations were circulated to the authors for refinement until consensus was reached. Strategies for advancing the evidence base for the maturation of guidelines in this area are offered.

Predicting family caregiver psychosocial functioning in palliative care.

BACKGROUND: Health professionals are expected to support family caregivers of patients requiring palliative care. However, there is a dearth of empirical evidence to help clinicians identify caregivers who might be at risk of poor psychosocial functioning. PURPOSE: This secondary analysis of baseline data from a larger study sought to determine if it was possible to predict the psychosocial functioning of family caregivers who were supporting a relative with advanced incurable cancer. METHOD: Data from 35 primary family caregivers obtained at the start of home-based palliative care services and five weeks later was used in the analysis. Instruments to measure caregiver preparedness, competence, mastery, social support, anxiety, and self-efficacy were used. RESULTS: Cluster and logistic analyses revealed that self-reported "anxiety" and "competence" subscale total scores at time of commencement of home-based palliative care services were associated with caregivers at risk of lower levels of psychosocial functioning five weeks later. CONCLUSIONS: This study suggests that it may be possible to identify family caregivers who are at risk for poorer psychosocial functioning. However, replication in a larger sample is required before this screening approach can be recommended for clinical use.

How well do family caregivers cope after caring for a relative with advanced disease and how can health professionals enhance their support?

BACKGROUND: Support for families during a person's advanced disease and also into the bereavement period is a major component of palliative care. However, because of the gaps in bereavement research in this area, there is a lack of evidence-based direction for health professionals. PURPOSE: This study sought to explore family caregiver perceptions of their relative's death and assess how well they were coping. Caregivers were also asked to identify which health professional strategies helped them prepare for and respond to their relative's death. METHODS: Two months after their relative's death primary family caregivers (n=45) of patients with advanced cancer completed a structured interview and were also assessed to determine if they were confronted by traumatic grief. RESULTS: Seven percent of caregivers were confronted by traumatic grief; most caregivers perceived they were coping reasonably well and could identify positive outcomes related to their experience. Caregivers noted the significant benefits of receiving comprehensive information to prepare them for the future and expressed appreciation for the support provided by specialist palliative care services. CONCLUSIONS: There is a large body of literature that highlights the negative consequences of being a family caregiver to a person with advanced disease. The sample population in this study, however, seemed to be reasonably well functioning; the results of the study were therefore somewhat surprising. A research agenda and key clinical implications are outlined in order to aid direction in targeting bereavement interventions.

Would people with Parkinson's disease benefit from palliative care?

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.

Measuring the psychosocial characteristics of family caregivers of palliative care patients: psychometric properties of nine self-report instruments.

Researchers and clinicians have experienced substantial difficulties locating measures that are suitable for use within palliative care settings. This article details the psychometric properties of nine instruments designed to assess the following psychosocial characteristics of family caregivers: competence, mastery, self-efficacy, burden, optimism, preparedness, social support, rewards, and mutuality. Results are based on the responses of 106 primary family caregivers caring for relatives dying of cancer. Principal components extraction with varimax rotation was used to explore the underlying structure of each measure. Following the exclusion of complex variables, suggested components for most measures comprised relatively homogenous items, which were good to excellent measures of each component. Some components comprised only two items; however, Cronbach's alphas typically indicated moderate to high levels of internal consistency. Overall, the results of this study suggest that most of the measures analyzed, excepting the mastery and mutuality scales, can be recommended to examine the family caregiver experience and test supportive interventions.

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.

Caregiving for the terminally ill: at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

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.