Using the Carers’ Alert Thermometer tool to identify needs and support family caregivers of people with motor neurone disease: moving beyond needs assessments

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. 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. 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. 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.

BackgroundThe palliative care period not only affects patients but also family caregivers in many ways. Palliative care units are places where the spiritual needs of family caregivers become important. According to a holistic care approach, palliative care nurses should determine the spiritual needs of family caregivers and help meet these needs.ObjectiveThis study aims at exploring nurses’ and family caregivers’ experiences of spiritual care.MethodsA phenomenological study was designed in this qualitative research. A total of 10 nurses working in palliative care and 11 family caregivers participated in the study. Nurses’ experiences of delivering spiritual care and family caregivers’ experiences of receiving spiritual care were examined through the in-depth interviewing method on a one-to‐one basis. The data were examined using thematic analysis.ResultsFour main themes were obtained by the data analysis: (I) Impacts of being in a palliative care unit; (II) Coping methods; (III) Importance of spirituality and spiritual care; (IV) Spiritual care. The results were presented according to the COREQ criteria.ConclusionAlthough spiritual care is very necessary for family caregivers, it is not offered sufficiently due to nurse-and institution-related reasons. Palliative care nurses should determine the spiritual needs of family caregivers in line with the holistic care approach. Nurse managers should determine factors preventing nurses from offering spiritual care and create solutions for these factors. The lack of nurses’ knowledge about spiritual care should be resolved by providing continuous training and therefore, nurses’ competencies in spiritual care should be improved.

BackgroundFamily caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.MethodsA psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver’s need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.ResultsFrom the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers’ individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.ConclusionsThe theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Background: Spiritual care is a crucial component of palliative care, contributing to patients' quality of life and offering emotional and spiritual support. Despite its significance, spiritual care remains underexplored, particularly from the perspectives of family caregivers. This study investigates Christian family caregivers' understanding, roles, and challenges in providing spiritual care to palliative patients, emphasising implications for healthcare professionals, including Muslim nurses. The objective of this study is to explore Christian family caregivers’ perspectives on spiritual care, their roles in delivering spiritual support, and the challenges they face in palliative care settings, providing insights to improve healthcare practices. Methods: A qualitative research design was employed to capture the lived experiences of ten Christian family caregivers recruited through purposive and snowball sampling. Data were collected through semi-structured interviews in Kuantan, Pahang over three months. Deductive thematic analysis was used to analyse the data, ensuring credibility, dependability, confirmability, and transferability throughout the research process. Results: Three themes emerged from the study: a) Understanding Spiritual Care: Participants associated spiritual care with religious practices such as prayer and emotional support, highlighting its role in providing hope and fostering peace. b) Role of Family Caregivers: Caregivers facilitated spiritual practices, provided emotional support, and shared caregiving responsibilities to enhance the patient’s well-being. c) Challenges in Delivering Spiritual Care: Emotional burdens, limited access to spiritual resources, and patients’ unstable emotions posed significant barriers to effective caregiving. Conclusion: The study highlights Christian family caregivers' multifaceted roles and challenges in delivering spiritual care. For healthcare professionals, particularly Muslim nurses, these findings offer critical insights into culturally and religiously sensitive caregiving practices. Addressing patients' spiritual needs fosters trust, enhances care quality, and aligns with Islamic values of compassion and holistic well-being. Future research should focus on developing practical strategies to support family caregivers and improve the integration of spiritual care into palliative care.

Background Although Motor Neurone Disease (MND) caregivers are most challenged physically and psychologically, there is a paucity of population-based research to investigate the impact of bereavement, unmet needs, range of supports, and their helpfulness as perceived by bereaved MND caregivers. Methods: An anonymous national population-based cross-sectional postal and online survey of bereavement experiences of family caregivers who lost a relative/friend to MND in 2016, 2017, and 2018. Recruitment was through all MND Associations in Australia. Results: 393 valid responses were received (31% response rate). Bereaved caregiver deterioration in physical (31%) and mental health (42%) were common. Approximately 40% did not feel their support needs were met. Perceived insufficiency of support was higher for caregivers at high bereavement risk (63%) and was associated with a significant worsening of their mental and physical health. The majority accessed support from family and friends followed by MND Associations, GPs, and funeral providers. Informal supports were reported to be the most helpful. Sources of professional help were the least used and they were perceived to be the least helpful. Conclusions: This study highlights the need for a new and enhanced approach to MND bereavement care involving a caregiver risk and needs assessment as a basis for a tailored “goodness of fit” support plan. This approach requires continuity of care, more resources, formal plans, and enhanced training for professionals, as well as optimizing community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfill this role.

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

BackgroundThe outpatient palliative care system is a central component of the palliative care structure in Germany, with family caregivers playing a vital role in ensuring and maintaining its success. However, crisis situations can destabilise and harm outpatient care. Previous studies have analysed hospitalisations and emergency admissions during palliative care. However, little is known about the factors that contribute to the emergence of crises in palliative outpatient care. The aim of this study was to identify factors contributing to the emergence of crisis in palliative outpatient care including the identification of protective strategies.MethodsA qualitative study using semi-structured interviews with family caregivers recently involved in outpatient palliative care was performed. The analysis was conducted using thematic coding.ResultsA total of 15 family caregivers (13 female and 2 male) were recruited for the study. Crisis situations emerged through a cumulation of factors. Four categories of factors were identified: (1) structural factors, including limited access to health care professionals and a lack of necessary information, (2) illness related factors such as sudden progression in the illness trajectory and symptoms, (3) the intensity of care involvement and (4) emotional and psychological burden of family caregivers. A diverse range of protective strategies were employed by family caregivers, encompassing the involvement of the social network, the pursuit of information and the identification of a sense of purpose.ConclusionThe findings of this study confirm the importance of providing continuous, competent, and empathetic care to both family caregivers and patients in palliative outpatient care. The study highlights the importance of expanding the palliative care infrastructure, as well as ensuring unrestricted access to palliative care professionals, developing tailored information tools for family caregivers, and reducing bureaucracy. Further studies are needed to identify additional influencing factors and evaluate effective measures.

Background:Studies on the experiences of consumers with Motor Neurone Disease Associations at end of life and bereavement are lacking, and their role and capability within the broader sectors of health and disability are unknown.Objectives:To ascertain the experiences and views of bereaved motor neurone disease caregivers with Motor Neurone Disease Associations about service gaps and needed improvements before and during bereavement and to propose a model of care that fits with consumer preferences and where Motor Neurone Disease Associations are effective enablers of care.Methods:A national bereavement survey was facilitated in 2019 by all Motor Neurone Disease Associations in Australia. A total of 363 respondents completed the section on support provided by Motor Neurone Disease Associations. A mixed-method design was used.Results:Respondents were generally positive about support received before bereavement (73-76%), except for emotional support (55%). Positive experiences related to the following: information, equipment advice/provision, advocacy/linking to services, showing empathy/understanding, personal contact and peer social support. Negative experiences included lack of continuity in case management and contact, perceived lack of competence or training, lack of emotional support and a lack of access to motor neurone disease services in rural areas. Suggested improvements were as follows: more contact and compassion at end of life and postdeath; better preparation for end of life; option of discussing euthanasia; providing referrals and links for counseling; access to caregiver support groups and peer interaction; provision of a genuine continuum of care rather than postdeath abandonment; guidance regarding postdeath practicalities; and more access to bereavement support in rural areas.Conclusion:This study provides consumer perspectives on driving new or improved initiatives by Motor Neurone Disease Associations and the need for a national standardised approach to training and service delivery, based on research evidence. A public health approach to motor neurone disease end-of-life care, of international applicability, is proposed to address the needs and preferences of motor neurone disease consumers, while supporting the capability of Motor Neurone Disease Associations within a multidisciplinary workforce to deliver that care.

National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for Quality Palliative Care, Executive Summary

Introduction: Motor neurone disease is a life limiting progressive neurological condition that requires a team-based approach to care. Person-centred care (PCC), integrated care and access to specialised motor neurone disease (MND) multidisciplinary clinics (MDC) are optimal approaches to the delivery of quality service for people living with MND (plwMND) for improved quality of life, health outcomes and care experiences. These MND MDCs models of care vary in design, implementation, and are predominantly specialist hospital based. Therefore, not all MND services are delivered consistently highlighting a need to explore the evidence on current practices that contribute to more effective, efficient person-centred integrated care practices across the continuum. Aim: This rapid review explores best practices of integrated care for people living with motor neurone disease, and their families and carers. Methods: A search was undertaken of six databases, Medline (Ovid), Embase (Ovid), CINAHL, Cochrane, Joanna Briggs Institute and Google Scholar. The 1469 retrieved abstracts were screened for eligibility against the inclusion criteria, and full text review was conducted on 149 studies. Data were extracted from 58 studies and a quality assessment conducted on final 45 included studies. The following information was gathered from the included studies to inform the review. 1.What is ‘best practice’ in the management/care of plwMND 2.What models of (integrated) care have been developed to support plwMND 3.What are the common elements of integrated care approaches that have been implemented in MND? 4.What impacts, outcomes, or effects of integrated care approaches have been reported for plwMND? Results: The initial review analysis indicated specialised MND multidisciplinary clinics (MDC) as ‘best practice’ in the optimal management of MND, but revealed no standardised approaches in design and implementation, the multidisciplinary workforce, and degree of integration and partnerships between hospitals and the community. MND MDC are predominantly hospital based, but the inclusion of either outreach community teams, hub and spoke approaches, and/or a hybrid design, (care delivered in person and /or by telehealth), improved integration, knowledge sharing and coordination across services. The timing of introduction and delivery of palliative care services differs but there is greater focus on integration into MND MDC, or earlier referrals to dedicated palliative care service and/or specific palliative care training of neurologist/multidisciplinary team, to optimise symptom management, decision-making and end of life care. Additional features that enable integration, improve care satisfaction and equity are one or a mix of 1) telehealth, 2) care coordination, 3) case management, 4) partnerships with MND associations, and/or 5) MND helpline. Conclusion: This review highlights a range of practices of integrated care that are not universal and predominantly practiced in high income countries. Adapting delivery of model of care to stage and duration of MND, and differing expectations, needs and priorities of plwMND and caregivers, is a common theme throughout. There has been greater uptake in telehealth and technology to support the equitable delivery of integrated approaches to care, with rapid development in this area during COVID 19 pandemic.

We report a rare association of spinocerebellar ataxia and motor neuron disease (MND) in a woman with genetically confirmed SCA2 who subsequently developed a rapidly progressive and fatal form of MND. Considering the rarity of these two neurological conditions, it is interesting to note that the concomitant occurrence of SCA mutations and MND have been previously observed in three cases: in one patient affected by SCA6 and two other cases with SCA2.

Motor Neurone Disease (MND) is an incurable, progressive condition with an average prognosis of 2–3 years from onset of symptoms (Worms, 2001; Oliver 2019). NICE guidance (2016) recommends that a health care professional with expertise in palliative care should be an integral part of the MDT in managing often rapidly progressive symptoms, psychological distress and complex future care planning. Nutrition and weight loss are predictors of survival (Leigh et al, 2003) and often relate to progressive dysphagia (Heffernan et al, 2004). Gastrostomy can be used to administer nutrition with studies suggesting this can both prolong survival and improve quality of life (Mazzini et al, 1995; Ganzini, 2006). It is important that the option to have gastrostomy is discussed at an early stage taking the patient’s personal preferences into account (MND association, 2019). Patients with MND often have other interventions to try and optimise QOL such as Non-Invasive Ventilation (NIV). Recent literature describes the withdrawal of NIV at the request of patients with MND (LeBon & Fisher, 2011; Messer et al, 2019) and the APM (2016) has issued guidance which considers the legal and ethical implications of this. However, a systematic literature search has found no such evidence or guidance on the withdrawal of gastrostomy feeding in patients with MND. We present the challenges faced when a patient with MND was transferred to hospice IPU requesting withdrawal of PEG feeding and the need for further research; as hospices may increasingly play a role in withdrawal of treatment in MND in future.

Background:There are few illnesses as disruptive as motor neurone disease, a fatalneurodegenerative condition, where diagnosis introduces a clinical narrativeof inevitable decline through progressive immobilisation into death. Recentevidence suggests that bereaved motor neurone disease family caregivers aremore likely to be at moderate or high risk of complicated grief.Methods:Qualitative data from an anonymous national survey of bereaved motor neuronedisease caregivers (n = 393) was examined through thematicanalysis to explore the experiences of people who are at low, moderate, andhigh risk of complicated grief. Up to 40% responded to three open-endedquestions: How caregivers viewed their coping strategies; the advice theyhad for others and what had been positive about their experience.Results:Ten themes informed the narratives of illness and loss. All three groupsshared similar experiences but differed in their capacity to address them.The low-risk group seemed to recognise the uncertainty of life and thatmeaning needed to be created by them. For the moderate-risk group, whilemotor neurone disease was a major disruption, they could with support,regroup and plan in different ways. The high-risk group did not have manyresources, external or internal. They felt let down when professionals didnot have answers and could not see or did not know how to change their waysof responding to this unwanted situation.Conclusion:The differences in these three profiles and their narratives of loss shouldalert health and community service providers to identify and address thecaregivers’ support needs early and throughout the caregiving journey. MotorNeurone Disease Associations are involved throughout the illness journey andneed to invest in a continuum of care incorporating end-of-life care andbereavement support. Community grief literacy and enhancement of socialnetworks are keys to improved support from families and friends that canenable the focus to be on feelings of empowerment rather thanabandonment.

Patient and Family Caregiver Perspectives on Palliative Care Needs in End-Stage Liver Disease: A Qualitative Study (S855)

BackgroundThe number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.Methods/DesignProspective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.DiscussionThis study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-684X-13-52) contains supplementary material, which is available to authorized users.