Motor neurone disease: A point-prevalence study of patient reported symptom prevalence, severity and palliative care needs.

BACKGROUND: Motor neurone disease is a rare but debilitating illness with incomplete evidence regarding patients' symptom burden. Palliative care and generalist clinicians are often in-experienced in caring for these patients and assessing their needs. AIM: To identify the symptom prevalence and severity experienced by patients with motor neurone disease. Secondary objectives were to examine differences in symptom burden and clusters according to phenotype, functional status, palliative care provision and those in their last months of life. DESIGN: A point prevalence study assessing patient-reported symptoms using a modified IPOS-Neuro assessment tool, incorporating 41 symptom items. SETTING/PARTICIPANTS: Patients with motor neurone disease attending the State-wide Progressive Neurological Disease Service or inpatient unit at Calvary Health Care Bethlehem, Melbourne Australia, from March to December 2021. RESULTS: A total of 102 patients participated, the majority diagnosed with lumber-onset (30.4%), bulbar-onset (28.4%) and cervical-onset (25.5%) phenotypes. Patients experienced a median of 17 symptoms (range 2-32) with a median of 3 symptoms rated as severe/overwhelming (range 0-13). Motor and functional symptoms predominated, with differences in symptom clusters present according to phenotype. Patients had a higher number of severe/overwhelming symptoms if they were accessing palliative care services (p = 0.005), in their last 6 months of life (p = 0.003) and experiencing moderate or severe functional impairment (p < 0.001). CONCLUSIONS: Patients with motor neurone disease report high symptom burden. A validated motor neurone disease-specific symptom assessment tool is needed to accurately assess patients, including important variations in symptom clusters according to phenotype. Further research must focus on evidence-based treatment guidelines for symptoms experienced commonly and severely.

Development and initial test of the self-report grief and bereavement assessment.

Implementing evidence-based and cost-effective bereavement care is a challenge. A self-report measure could assist to identify caregivers at-risk of prolonged grief. We developed a new measure via five steps: identification of risk and protective factors for prolonged grief, item generation, consultation with an expert panel (n = 8), review by the academic team and expert panel, and a pilot test with family caregivers (n = 19) from three palliative care services. The Grief and Bereavement Assessment is a brief self-report measure that is theoretically and empirically grounded, acceptable to caregivers, feasible for use in palliative care, and requires psychometric validation.

Decision-making in palliative care: patient and family caregiver concordance and discordance-systematic review and narrative synthesis.

BACKGROUND: Decision-making in palliative care usually involves both patients and family caregivers. However, how concordance and discordance in decision-making manifest and function between patients and family caregivers in palliative care is not well understood. OBJECTIVES: To identify key factors and/or processes which underpin concordance and/or discordance between patients and family caregivers with respect to their preferences for and decisions about palliative care; and ascertain how patients and family caregivers manage discordance in decision-making in palliative care. METHODS: A systematic review and narrative synthesis of original studies published in full between January 2000 and June 2021 was conducted using the following databases: Embase; Medline; CINAHL; AMED; Web of Science; PsycINFO; PsycARTICLES; and Social Sciences Full Text. RESULTS: After full-text review, 39 studies were included in the synthesis. Studies focused primarily on end-of-life care and on patient and family caregiver preferences for patient care. We found that discordance between patients and family caregivers in palliative care can manifest in relational conflict and can result from a lack of awareness of and communication about each other's preferences for care. Patients' advancing illness and impending death together with open dialogue about future care including advance care planning can foster consensus between patients and family caregivers. CONCLUSIONS: Patients and family caregivers in palliative care can accommodate each other's preferences for care. Further research is needed to fully understand how patients and family caregivers move towards consensus in the context of advancing illness.

Family caregivers of children and adolescents with rare diseases: a novel palliative care intervention.

OBJECTIVE: To develop and pilot test a palliative care intervention for family caregivers of children with rare diseases (FAmily-CEntered pediatric Advance Care Planning-Rare (FACE-Rare)). METHODS: FACE-Rare development involved an iterative, family-guided process including review by a Patient and Family Advisory Council, semistructured family interviews and adaptation of two evidence-based person-centred approaches and pilot testing their integration. Eligible families were enrolled in FACE-Rare (the Carer Support Needs Assessment Tool (CSNAT) Approach Paediatric sessions 1 and 2; plus Respecting Choices Next Steps pACP intervention sessions 3 and 4). Satisfaction, quality of communication and caregiver appraisal were assessed. RESULTS: Parents were mean age 40 years, and children 7 years. Children's diseases were rare enough that description would identify patients. All children were technology dependent. Telemedicine, used with four of seven families, was an effective engagement strategy and decreased subject burden. Families found FACE-Rare valuable following a strategy that first elicited palliative care needs and a support plan. Eight families were approached for pilot testing. Of the seven mothers who agreed to participate, six began session 1, and of those, 100% completed: all four FACE-Rare sessions, baseline and 2-week postintervention assessments, and a written pACP which described their preferences for medical decision-making to share with their providers. 100% reported FACE-Rare was helpful. The top three CSNAT concerns were: knowing what to expect in the future, having enough time for yourself and financial issues. Benchmarks were achieved and questionnaires were acceptable to parents and thus feasible to use in a larger trial. CONCLUSIONS: FACE-Rare provides an innovative, structured approach for clinicians to deliver person-centred care.

Winners and Losers in Palliative Care Service Delivery: Time for a Public Health Approach to Palliative and End of Life Care.

BACKGROUND: Consumer experience of palliative care has been inconsistently and selectively investigated. METHODS: People in Western Australia who had experienced a life limiting illness in the past five years were recruited via social media and care organisations (2020) and invited to complete a cross sectional consumer survey on their experiences of the care they received. RESULTS: 353 bereaved carers, current carers and patients responded. The winners, those who received the best quality end-of-life care, were those who were aware of palliative care as an end-of-life care (EOLC) option, qualified for admission to and were able to access a specialist palliative care program, and with mainly a cancer diagnosis. The losers, those who received end-of-life care that was adequate rather than best practice, were those who were unaware of palliative care as an EOLC option or did not qualify for or were unable to access specialist palliative care and had mainly a non-cancer diagnosis. Both groups were well supported throughout their illness by family and a wider social network. However, their family carers were not adequately supported by health services during caregiving and bereavement. CONCLUSIONS: A public health approach to palliative and end of life care is proposed to integrate tertiary, primary, and community services through active consumer engagement in the design and delivery of care. Therefore, suggested strategies may also have relevance in many other international settings.

"We Have to Be Strong Ourselves": Exploring the Support Needs of Informal Carers of Aboriginal and Torres Strait Islander People with Cancer.

Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Thematic analysis of carer and survivor interviews revealed four key themes relating to carers' needs: managing multiple responsibilities; maintaining the carer's own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.

The support needs of parent caregivers of children with a life-limiting illness and approaches used to meet their needs: A scoping review.

BACKGROUND: Provision of paediatric palliative care is complex and optimally covers meeting the individual needs of a heterogenous population of children and their parent caregivers throughout a life-limiting illness. It is unclear whether existing approaches comprehensively address parent caregivers' needs. AIM: To examine support needs of parents caring for children with life limiting illnesses and identify specific approaches used to identify and address needs. DESIGN: A scoping review. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL and ProQuest Central, were searched for peer reviewed English language full text research published from 2008 to 2019. Study quality appraisal was undertaken. Fourteen quantitative, 18 qualitative and 12 mixed methods studies were synthesised and themed using summative content analysis and mapped to the Parent Supportive Care Needs Framework (PSCNF). RESULTS: Themes were communication, choice, information, practical, social, psychological, emotional and physical. Communication and choice were central and additional to domains of the PSCNF. Unmet were needs for supporting siblings, for respite care, out of hours, psychological, home and educational support. Six articles reported using instruments to identify parent carer support needs. CONCLUSION: Support needs of parent caregivers of children with life limiting illnesses are substantial and heterogenous. While studies report evidence of burden and distress in parent caregivers, this rarely translates into improvements in practice through the development of interventions. A systematic and regular assessment of individual parent caregiver support needs is required by using instruments appropriate to use in clinical practice to move the focus to palliative care interventions and improved services for parents.

Challenges in Palliative Care Research on Family Caregivers: Who Volunteers for Interviews?

Background: Interviews are a common method of data collection in palliative care research because they facilitate the gathering of rich, experiential data that are important for theory and practice. What is less clear is the extent to which those interviewed are representative of the larger group. Objective: The aim of this study was to determine if family caregivers who volunteer to be interviewed were similar or different to those who do not. Design: This study used data from the Caregiving and Bereavement study, a prospective, longitudinal mixed-methods study of family caregivers' general health, quality of life, and grief. Setting/Subjects: The 16 caregivers who volunteered to be interviewed were compared to the 20 who did not. Measurements: Comparisons were made in terms of the caregivers' demographic characteristics as well as measures of their quality of life, general health, general grief, and caregiver prolonged grief (i.e., before death). Results: Compared to caregivers who did not volunteer for an interview, those who volunteered were significantly older and reported less caregiver prolonged grief. Logistic regression showed that for each 1-unit increase in the caregiver prolonged grief score, individuals were 13% less likely to agree to an interview. Conclusions: Research findings based upon family caregivers who volunteer for research interviews might not provide a full picture of their experiences and needs. Researchers are encouraged to consider strategies that sample broadly and promote the participation of the full range of family caregivers in research to address the neglected areas of pre- and postdeath bereavement care.

The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups.

BACKGROUND: Parents of children with life-limiting illnesses experience considerable burden and distress, yet few interventions have targeted their well-being. OBJECTIVES: Evaluate the use and feasibility of the Paediatric Carer Support Needs Assessment Tool (pCSNAT) in assessing and addressing parents' needs caring for cancer and non-cancer conditions. Carer well-being outcomes were also tested. METHODS: A non-randomised prospective intervention pilot study. Twenty-eight parents (out of 42 approached) and 5 health professionals working in paediatric palliative care services in Western Australia (2018-2019) completed the pilot study. RESULTS: Two-thirds of eligible parents completed the study. The highest support needs included having time for yourself; practical help in the home; knowing what to expect in the future; financial, legal or work issues; and knowing who to contact if you are concerned. Almost all needs were considerably more pronounced for the non-cancer group. The pCSNAT seemed feasible and outcomes demonstrated a tendency to improve. CONCLUSION: Using the pCSNAT provided a concise and comprehensive 'one stop shop' for health professionals to evaluate difficulties encountered by parents. The disadvantages reported by the non-cancer group warrant increased attention. Paediatric palliative care should adopt routine assessment of parents' support needs to anticipate early and tailored supports including partnerships with the community.

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study.

BACKGROUND: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers. AIM: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. DESIGN: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months). SETTING/PARTICIPANTS: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. RESULTS: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death. CONCLUSION: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

Unmet supportive care needs among Indigenous cancer patients across Australia.

INTRODUCTION: Indigenous Australians with cancer tend to be diagnosed with more aggressive and advanced-stage disease, receive less treatment, have poorer survival and lower quality of life than other Australians. Reducing these inequalities requires an understanding of the supportive care needs of this cancer group. This study aims to describe the type and extent of unmet supportive care needs of Indigenous Australian cancer patients. METHOD: A multicentre, cross-sectional study recruited 145 Indigenous adults diagnosed with cancer in the previous 5 years in four Australian states and territories. Using a culturally specific tool, unmet needs were assessed in four domains: 'physical and psychological', 'hospital care', 'information and communication' and 'practical and cultural'. Moderate to high unmet need is that which requires some or a lot more help to be addressed. RESULTS: Two-thirds (65%) of patients reported at least one moderate to high unmet need and 20% of patients had moderate to high unmet needs with five or more items. Overall, patients most commonly reported moderate to high unmet needs in the physical/psychological (46%) and practical/cultural domains (34%), than the information/communication (23%) and hospital care domains (16%). More specifically, 'money worries' was the most frequently reported moderate to high unmet need (20%). CONCLUSION: Most Indigenous Australians living with cancer experience unmet supportive care needs. Physical/psychological and practical/cultural concerns were identified as priority areas for Indigenous cancer patients. These findings may inform priority areas for intervention towards optimal care pathways for Indigenous Australians diagnosed and living with cancer.

International validation of the EORTC QLQ-PRT20 module for assessment of quality of life symptoms relating to radiation proctitis: a phase IV study.

BACKGROUND: Although patients experience radiation proctitis post radiotherapy no internationally tested instruments exist to measure these symptoms. This Phase IV study tested the scale structure, reliability and validity and cross-cultural applicability of the EORTC proctitis module (QLQ-PRT23) in patients who were receiving pelvic radiotherapy. METHODS: Patients (n = 358) from six countries completed the EORTC QLQ-C30, QLQ-PRT23 and EORTC Quality of Life Group debriefing questions. Clinicians completed the EORTC Radiation Therapy Oncology Group scale. Questionnaires were completed at four time-points. The module's scale structure was examined and validated using standard psychometric analysis techniques. RESULTS: Three items were dropped from the module (QLQ-PRT23 → QLQ-PRT20). Factor analysis identified five factors in the module: bowel control; bloating and gas; emotional function/lifestyle; pain; and leakage. Inter-item correlations were within r = 0.3-0.7. Test-Retest reliability was high. All multi-item scales discriminated between patients showing symptoms and those without symptomology. The module discriminated symptoms from the clinician completed scoring and for age, gender and comorbidities. CONCLUSION: The EORTC QLQ-PRT20 is designed to be used in addition to the EORTC QLQ-C30 to measure quality of life in patients who receive pelvic radiotherapy. The EORTC QLQ-PRT20 is quick to complete, acceptable to patients, has good content validity and high reliability. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry (ANZCTR) ACTRN12609000972224 .

Questionnaires measuring quality of life and satisfaction of patients and their relatives in a palliative care setting-German translation of FAMCARE-2 and the palliative care subscale of FACIT-Pal.

BACKGROUND: The evaluation of quality of life (QoL) and satisfaction with care in palliative care patients and their relatives is an important aspect of palliative care research, likewise important to get a direct feedback for the success of treatment. Here, questionnaires are important tools for measuring outcomes of care in medicine. Several validated, predominantly English, questionnaires already exist. These have been translated in different languages but German. The Functional Assessment of Chronic Illness Therapy (FACIT) is an established tool for the evaluation of QoL in cancer patients. The FACIT-Pal, a 46-itemquestionnaire of this group of questionnaires, measures the QoL in palliative care patients. It includes a new palliative care subscale which is not yet available in German. The FAMCARE-2, a 17-item-questionnaire, evaluates the relatives' satisfaction with the care and support they received from palliative care team. METHODS: The translation process followed a protocol including multiple independent translators as well as a forth and back translation. RESULTS: A German version of FAMCARE-2 and FACIT-Pal was translated based on the original questionnaire. Relevant differences between the English original versions and the back translations weren't revealed by the original scale developers. CONCLUSIONS: The final versions of the German translations have been authorized by the scale developers. The FAMCARE-2 and the FACIT-Pal are now available in German and can be used for research and quality control purposes.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

BACKGROUND: Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. OBJECTIVES: To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. METHODS: A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. RESULTS: Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. CONCLUSIONS: The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

A person-centred approach to family carer needs assessment and support in dementia community care in Western Australia.

This feasibility study aimed to identify and address the support needs of family carers (FCs) of people living with dementia and to assess whether the use of the Carer Support Needs Assessment Tool (CSNAT) intervention in home-based care was acceptable and relevant to FCs. The CSNAT intervention comprised two FC support needs assessment visits, 7 weeks apart, plus associated actions addressing prioritised needs by the Client Care Advisors of a community care service in Western Australia in 2015. Telephone interviews were conducted with FCs on their experience using the CSNAT at the end of the intervention. Twenty-one FCs were involved in the intervention and 15 of them completed the feedback interviews. Care recipients had moderate to severe dementia. The top five support needs reported by FCs were: having time to yourself in the day; knowing what to expect in the future; practical help in the home; looking after your own health and dealing with your feelings and worries. Three themes summarised their experience: a straightforward structured approach; awareness, acknowledgement and acceptance of their situation; and provision of support. FCs appreciated the opportunity to be heard and acknowledged, to have their practical and psychosocial support needs facilitated, to identify what is important to them and to receive a response in a timely manner. The CSNAT approach offered a structured carer-led, person-centred, supportive intervention that facilitated discussion between the family carer and the service provider about support needs and strategies to address them.

What pelvic radiation disease symptoms are experienced by patients receiving external beam radiotherapy and a high-dose-rate brachytherapy boost for prostate cancer?

PURPOSE: Research describing proctitis or pelvic radiation disease symptoms of prostate cancer patients one year after external beam radiotherapy (EBRT) plus high-dose-rate (HDR) brachytherapy is limited. This study aimed to assess prostate cancer patients' pelvic radiation disease symptoms from baseline to 12 months post-radiotherapy. MATERIAL AND METHODS: Men with prostate cancer referred for EBRT and HDR brachytherapy were recruited. Patients' age, diagnosis, staging, PSA, past medical history, and treatment were recorded. Pelvic radiation disease symptoms were assessed via the Phase III EORTC proctitis module. Patients completed questionnaires before radiotherapy (baseline) and at one, three, six, and 12 months afterwards. To assess acute toxicity, symptoms one month after radiotherapy were compared with baseline. To assess post-treatment recovery, symptoms at three, six, and 12 months post radiotherapy were compared with one month. Symptom changes over time were assessed with linear mixed effect models. RESULTS: Two hundred and sixty-six patients were recruited. Mean scores were below 2 at all time-points. The proportion of patients experiencing symptoms were also calculated. Linear mixed effect models showed that time-point, age, and T-stage were associated with some pelvic radiation disease symptoms. CONCLUSIONS: Patients receiving EBRT plus HDR brachytherapy to the prostate experienced mild pelvic radiation disease symptoms. Determining the proportion of patients with symptoms provided the most meaningful data.

Bereavement support for family caregivers: The gap between guidelines and practice in palliative care.

BACKGROUND: Standards for bereavement care propose that support should be matched to risk and need. However, studies in many countries demonstrate that palliative care services continue to adopt a generic approach in offering support to bereaved families. OBJECTIVE: To identify patterns of bereavement support in palliative care services based upon the experience of bereaved people from a population based survey and in relation to clinical practice guidelines. DESIGN: An anonymous postal survey collected information from clients of six funeral providers in four Australian states (2014-15), 6 to 24 months after the death of their family member or friend, with 1,139 responding. Responses from 506 bereaved relatives of people who had terminal illnesses were analysed. Of these, 298 had used palliative care services and 208 had not. RESULTS: More people with cancer (64%) had received palliative care in comparison to other illnesses such as heart disease, dementia and organ failure (4-10%). The support for family caregivers before and after their relative's death was not considered optimal. Only 39.4% of the bereaved reported being specifically asked about their emotional/ psychological distress pre-bereavement, and just half of the bereaved perceived they had enough support from palliative care services. Half of the bereaved had a follow up contact from the service at 3-6 weeks, and a quarter had a follow-up at 6 months. Their qualitative feedback underlined the limited helpfulness of the blanket approach to bereavement support, which was often described as "not personal" or "generic", or "just standard practice". CONCLUSIONS: Timeliness and consistency of relationship is crucial to building rapport and trust in the service's ability to help at post-bereavement as well as a focus on the specific rather than the generic needs of the bereaved. In light of these limitations, palliative care services might do better investing their efforts principally in assessing and supporting family caregivers during the pre-bereavement period and developing community capacity and referral pathways for bereavement care. Our findings suggest that bereavement support in Australian palliative care services has only a tenuous relationship with guidelines and assessment tools, a conclusion also drawn in studies from other countries, emphasizing the international implications of our study.

Family Caregiver Participation in Palliative Care Research: Challenging the Myth.

CONTEXT: Despite international guidelines emphasizing consumer-directed care and autonomous decisions in research participation, there is a common myth that research can be an additional and unwanted burden on patients and their family members. OBJECTIVES: To examine the experiences and impact of research involvement on family caregivers (FCs) of terminally ill people, focusing within home-based palliative care. METHODS: Three hundred sixteen of 322 participants (98.1%), who completed an FC support intervention through a stepped-wedge cluster trial (Australia, 2012-2015), participated in a postintervention telephone interview on their study experiences, which included quantitative and qualitative questions. RESULTS: Ninety-seven percent of both the control (n = 89) and intervention (n = 227) groups perceived positive aspects, whereas almost all did not report any negative aspects of being involved in this research; the majority rated their involvement as very/extremely beneficial (control 77%; intervention 83%). The qualitative analysis generated three major themes: "intrapersonal-inward directed"; "connection with others-outward directed"; and "interpersonal-participant-researcher relationship." CONCLUSIONS: This study provided quantitative and qualitative evidence challenging the myth. In contrast to health professional concerns, FCs appreciated the opportunity to participate and benefited from their involvement in research. Research protocols need to be specifically tailored to the needs of family caregivers and include debriefing opportunities for all participants at the end of intervention studies, regardless of which group they have been assigned. Strategies that facilitate health professionals' understanding of the research and risk benefits may help reduce gatekeeping and improve the validity of research findings.

Building Community Capacity in Bereavement Support.

BACKGROUND: Most bereaved people do not require specialist intervention, yet building community capacity in providing bereavement support is underdeveloped. While family caregivers indicate a need for more information about bereavement, there is little evidence to guide what this information might contain. OBJECTIVE: The study's purpose was to inform bereavement support by determining the advice people bereaved through expected deaths in palliative care have for others in that situation. DESIGN: Four funeral providers posted a questionnaire to previous clients who had used their services 6 to 24 months prior and 678 bereaved people responded. SETTING/PARTICIPANTS: The sample size for this study comprised 265 bereaved people whose relative used palliative care services. MEASUREMENTS: The questionnaire comprised 82 questions about caregiving, bereavement support, current bereavement-related distress, and 2 open-ended questions concerning their bereavement, one of them on advice they have to other people in the same situation. RESULTS: Family caregivers (n = 140) of people who received palliative care responded to the open-ended question about advice for others. An open content analysis yielded 3 themes-preparations for bereavement, utilizing social networks, and strategies for dealing with grief. CONCLUSIONS: Bereaved family caregivers' experiential knowledge can be harnessed to progress the development of bereavement care strategies for the good of the community. These responses could be incorporated into information brochures, posters, and other community education avenues in order to upskill palliative care bereavement volunteers and the wider community so that bereaved family caregivers are best supported.

Identifying and addressing the support needs of family caregivers of people with motor neurone disease using the Carer Support Needs Assessment Tool.

OBJECTIVE: Family caregivers of people with motor neurone disease (MND) experience adverse health outcomes as a result of their caregiving experience. This may be alleviated if their support needs are identified and addressed in a systematic and timely manner. The objective of the present study was to assess the feasibility and relevance of the Carer Support Needs Assessment Tool (CSNAT) in home-based care during the period of caregiving from the perspectives of the family caregivers of people with MND and their service providers. METHOD: The study was conducted during 2014 in Western Australia. Some 30 family caregivers and 4 care advisors participated in trialing the CSNAT intervention, which involved two visits from care advisors (6-8 weeks apart) to identify and address support needs. The feedback from family caregivers was obtained via telephone interviews and that of care advisors via a self-administered questionnaire. RESULTS: A total of 24 caregivers completed the study (80% completion rate) and identified the highest support priorities as "knowing what to expect in the future," "knowing who to contact if concerned," and "equipment to help care." The majority found that this assessment process adequately addressed their needs and gave them a sense of validation, reassurance, and empowerment. Care advisors advocated the CSNAT approach as an improvement over standard practice, allowing them to more clearly assess needs, to offer a more structured follow-up, and to focus on the caregiver and family. SIGNIFICANCE OF RESULTS: The CSNAT approach for identifying and addressing family caregivers' support needs was found to be relevant and feasible by MND family caregivers and care advisors. The tool provided a formal structure to facilitate discussions with family caregivers and thus enable needs to be addressed. Such discussions can also inform an evidence base for the ongoing development of services, ensuring that new and improved services are designed to meet the explicit needs of the family caregivers of people with a motor neurone disease.