Bereavement support and prolonged grief disorder among carers of people with motor neurone disease

Background: Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care. Aim: This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care. Design: A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief. Setting/participants: sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia. Results: The thematic analysis of the interview transcripts revealed five themes – the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory. Conclusions: The study provided a basis for more research into the role palliative care services has in supporting MND carers before and after the death of their spouse and in particular the provision of more tailored respite and bereavement support.

Family carers of people living and dying with dementia experience grief. The prevalence, predictors and associated factors of grief in this population have been identified, and psychosocial interventions to decrease grief symptoms have been implemented. However, the effect of psychosocial interventions on family carers' grief, loss or bereavement has not been examined. To synthesize the existing evidence regarding the impact of psychosocial interventions to assist adjustment to grief, pre- and post-bereavement, for family carers of people with dementia. Family carers of older persons with dementia (>65 years). Psychosocial interventions in health and social care facilities, and community settings designed to assist family carers adjust to grief during the dementia trajectory and/or following death. No treatment, standard care or treatment as usual, or an alternative intervention. Experimental and epidemiological study designs. Grief in family carers including anticipatory, complicated and prolonged grief disorder measured with validated instruments. A three-step strategy sought to identify both published and unpublished studies from 1995. Assessed by two independent reviewers using standardized critical appraisal tools from the Joanna Briggs Institute Meta Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). The standardized data extraction tool from JBI-MAStARI was used by two reviewers independently. Statistical pooling of results was not possible due to the heterogeneity of the interventions and the outcome measures. Data were extracted from three studies. Study designs were a randomized controlled trial; a pre-test, multiple post-test quasi-experimental; and a single group, repeated measures. The interventions were multi-component, had durations of nine to 26 weeks and were delivered while care recipients were alive. All studies were undertaken in the United States. There were 327 family carers, of which 197 received a psychosocial intervention. Family carers were predominantly female (84.7%), Caucasian (73.4%) and caring for their spouse (44.3%). All care recipients had dementia; 68.5% had Alzheimer's disease. Two studies measured anticipatory grief, and the third study reported normal and complicated grief.Moderate benefits to anticipatory grief were evident upon completion of the "Easing the Way" intervention (effect size -0.43, P = 0.03). After controlling for research design and control variables, for every hour increase in the interventions focusing on family carers' cognitive skills, there were associated decreases in carers' normal grief (parameter estimate [PE] = -0.81, P = 0.02) and complicated grief (PE = -0.87, P = 0.03). For every hour increase in the interventions focusing on carer behavior, there was an associated decrease in carers' complicated grief (PE = -1.32, P = 0.04). For every hour increase in the interventions focusing on care recipient behavior, there was an associated decrease in carers' complicated grief (PE = -2.91, P = 0.04). There is little evidence upon which to base practice with regard to interventions to reduce any aspects of grief. Findings suggest that different pre-death interventions might be warranted depending upon a family carer's unique clinical presentation and combination of risk factors.Cognitive skills training provided while the care recipient is alive may positively impact normal and complicated grief following the death of the care recipient. When the cognitive skills training is provided in conjunction with behaviorally oriented interventions that improve the wellbeing of the carer and care recipient, carers' complicated grief symptoms may be reduced.

Background: Motor neurone disease (MND) results in systemic disabilities due to progressive muscle weakness. Patients and families affected by the illness will require input from a wide range of health and social care professionals. Evidence for the efficacy of a multidisciplinary team approach to care in MND is limited, with a Cochrane review calling for ‘real life’ research on the topic. The views of patients and family carers have not been dominant in published studies. To ensure that services are meeting their needs it was important to obtain the perspectives of those living with the illness. Aim: To obtain the views of people with MND and family carers regarding multidisciplinary team (MDT) working. Method: A qualitative study involving narrative style interviews was conducted in Northwest England. People with MND (24), family carers (18) and former carers (10) were recruited through an MND Care and Research Centre. Results: A number of themes emerged from a thematic analysis: having a single point of access; specialist knowledge and skills; saving time and energy; regular follow up; valued members of the MDT; working together as a team. Conclusion: The findings greatly enhance our understanding of the effect of MDT working on people with MND and their family carers

<h3>Background</h3> Motor Neurone Disease (MND) is a life-shortening condition with no cure. Consequently, hospice and palliative care are recommended from diagnosis. Family carers provide vital support for people with MND but caregiving can be very physically and mentally demanding. It is therefore crucial to ensure healthcare practitioners (HCPs) can provide timely support to carers fitting their individual needs. Currently there are no UK interventions for this. <h3>Aim</h3> To adapt an existing Carer Support Needs Assessment Tool (CSNAT) intervention for comprehensive person-centred carer to support the needs and situation of family carers of people with MND. <h3>Methods</h3> Stages: Focus groups and interviews with 33 carers (14 bereaved, 19 current carers) to capture their self–defined needs, key points of change during patient's illness, and main support services. Workshops with HCPs (N=22) and carer advisors (N=19) to inform materials and procedures for MND carer assessment and support. <h3>Results</h3> Stage 1: Carers' experience was one of dealing with a devastating diagnosis, a constantly changing situation with heavy dependence on them as carers, and with little consideration of their separate support needs. Carers' support needs mainly mapped onto CSNAT domains, but some MND carers experienced relationship issues warranting further consideration. Stage 2 (on-going) will review carer advice on the need for a further CSNAT domain to address relationship issues; HCP and carers' views obtained at workshop discussions explore when, where, how and by whom MND carer assessment and support should best be provided in a practice context. <h3>Conclusions</h3> Study findings will provide insights into how MND carers want to be assessed and supported and how HCPs felt this approach could be delivered in practice. Understandings obtained from Stages 1 and 2 will form the basis for an intervention to be tested in a future Stage 3 feasibility study.

<h3>Background</h3> Motor Neurone Disease (MND) is a life-shortening condition with no cure. Consequently, hospice and palliative care are recommended from diagnosis. Family carers provide vital support for people with MND...

Background Despite the traumatic and fatal nature of motor neurone disease (MND) and the caring experiences being described as unrelenting, little is known about risk of psychiatric morbidity and Prolonged Grief Disorder (PGD) for family caregivers. Methods: A cross-sectional survey of caregivers bereaved in 2016-2018 was distributed by the five MND Associations in Australia (2019). Validated tools for PGD (PG-13), anxiety, depression, and family functioning were included. Multinomial logistic regression was used to compare the factors associated with grief. Findings: Overall, 393 valid responses were received, a 31% response rate. The prevalence of ICD-11 PGD was 9.7%; moderate/severe anxiety 12.3%, moderate/severe depression 18.5% and 18.7% indicated poor family functioning. MND caregivers have higher bereavement risk prevalence than the general bereaved population, with 9.6% in the high-risk group (vs 6.4%) and 54% at moderate risk (vs 35%). Being in the PGD group was 8 or 18 times more likely when the respondent had anxiety or depression, respectively. Poor family functioning significantly increased the likelihood of PGD by four times. Other significant predictors of PGD were a recent bereavement (<12 months), being a spouse/partner of the deceased, insufficient support during the disease journey, the deceased being under 60 years of age, and a shorter period of caring (<1.5 years). Conclusion: In a large national population-based sample of bereaved MND caregivers, 63% required bereavement support over and above that provided by family and social networks. This is a neglected yet seriously ill population that calls for better care provision and clinical practice.

Purpose: To explore the views of people with motor neurone disease (MND) on the barriers, facilitators and potential benefits of using home-based e-Health service delivery (telehealth) to access MND multidisciplinary clinic care.Methods: Twelve patients from three MND multidisciplinary clinics and an MND support association group completed a survey of information technology (IT) use and participated in interviews, to gather participants’ experiences and perceptions of home-based telehealth for MND clinic care. Survey data were analyzed descriptively, with interview data analyzed using a stepwise inductive approach.Results: Surveys revealed that participants used IT to communicate with family and friends, but were less likely to use the phone, email or videoconferencing with health professionals. Two themes of participants’ use of IT in MND care reflected their experiences of MND care; and personal preferences for modes of healthcare delivery. Participants were willing to use telehealth for MND care, with family members acting as patients’ main support for telehealth participation. Nevertheless, participants preferred face-to-face contact with the MND clinic team in the initial and early stages of the disease.Conclusions: People living with MND may wish to participate in individual care planning to facilitate their access to a variety of e-Health service modalities. Additionally, individual care planning may allow healthcare professionals to deliver e-Health-based care, such as telehealth, to increase the scope of care provided. Research to ascertain the views of health professionals and family members as co-participants in service delivery via telehealth is needed to fully assess the potential contribution of e-Health.Implications for RehabilitationPeople living with MND face a range of barriers to attending specialized multidisciplinary care, including fatigue, caregiver availability and logistical challenges to travel.Patients have indicated willingness to use e-Health applications to improve their access to care.Use of telehealth could expand service delivery to people with MND living long distances from multidisciplinary clinics, and increase the patient-centred focus of care by tailoring care planning.By offering telehealth services routinely, MND multidisciplinary clinics could also improve the quality and timelines of services offered.

Screening for Complicated Grief Among Project Liberty Service Recipients 18 Months After September 11, 2001

Background: Despite a recognized need for a palliative approach to caring for people with motor neurone disease (MND), access to palliative care is often limited. Aim: This project aimed to improve the knowledge of health professionals about a palliative approach to MND care. Design: A three-phase study was undertaken to develop, implement and evaluate an education program for health professionals that promoted a palliative approach to MND care. This paper discusses the second and third phases: the implementation and evaluation of the project. Education workshops were held for health professionals. Their knowledge of palliative care was measured before and after the workshops and one month later. Attitudes to providing MND care were also measured. Setting: Workshops were held in South Australia and Western Australia. Participants were health professionals working in the areas of MND care or palliative care. Some aged care and generalist health professionals were included if they had a role in providing care to people with MND. Results: The participants demonstrated an improvement in MND knowledge (χ2 = 64.13(2), p = 0.000) and palliative care knowledge (χ2 = 17.24(2), p = 0.000); both were sustained at one month. Attitudes to providing MND care also improved (χ2 = 11.85(2), p = 0.003) and were maintained at the six-month follow-up. Participants indicated that the knowledge gained positively influenced their clinical practice. Conclusions: A targeted education program for health professionals improved understanding about end-of-life care for people with MND. Health care providers also reported having made improvements in the care provided to patients and carers, particularly communication, psychosocial care and symptom management.

<h3>Background</h3> Motor Neurone Disease (MND) or Amyotrophic Lateral Sclerosis (ALS) is a rapidly progressive terminal neuro-degenerative disease caused by degeneration of the upper and lower motor neurones in the central nervous system of the brain. The effects of MND are multifaceted, leading to many adjustments in everyday life. COVID-19 has changed how care is delivered to people with MND and this literature review aims to explore and compare experiences prior and during the pandemic. <h3>Method</h3> A comprehensive search of the literature between 2010–2021 in all major health care databases and websites resulted in 61 papers selected for review, with 4 of these relating to COVID-19. Preferred Reporting Items for Systematic Reviews and Meta- Analysis (PRISMA) guidelines were followed. Studies were quality assessed and data extraction techniques were informed by Hawker et al’s (2002) three stages of assessment of relevance for review questions based on inclusion criteria; data extraction and scoring for methodological rigor. Themes were developed using Thematic Analysis. <h3>Findings</h3> Key themes in the pre-COVID-19 literature were perceptions of a lack of knowledge and educational needs for staff; delayed diagnosis; communication problems, high levels of burden for people with MND and family carers, and perceptions of poor standards of care. The literature on MND experiences during the COVID-19 pandemic is limited but indicates that professionals found the delivery of high-quality care challenging. Restrictions to face-to-face services and virtual care was disruptive to usual treatment and supportive care especially during the early waves of the COVID-19 pandemic. <h3>Conclusion</h3> COVID-19 has impacted on MND care and service delivery, but there is currently a lack of research exploring the impact of this from the perspective of people with MND and their families. Further research is required to explore include care of pwMND and their families during the COVID-19 pandemic. Keywords Amyotrophic Lateral Sclerosis, ALS, Motor Neurone Disease, MND, Perceptions, COVID-19, Integrated Approach, Multi-Disciplinary Team/MDT, Health Care Collaboration, Health and Social Care Professionals, terminally ill, Palliative Care, Hospice and Palliative Care Nursing, Home Care.

Motor neurone disease (MND) is a terminal, neurodegenerative disease. The aims of the MND specialist nurse team are to coordinate care and ensure the best outcomes for patients. The MND Care and Research Centre based in Preston, Lancashire covers a large geographical area. Many patients with MND were travelling long distances to hospital to access support and experienced difficulties parking. This became increasingly difficult as the disease progressed. It was decided to bring the nurse-led services closer to patients by developing partnerships with the six local community hospices in Lancashire and South Cumbria. The aims of this initiative were to reduce travelling times, provide access to better parking and enable people to enjoy the pleasant hospice environment. As a result, a significant number of MND patients are receiving care from the specialist nurses in a hospice setting. An audit of the new services has been undertaken by the MND Care and Research Centre, the results of which show high levels of patient satisfaction. Patients indicated that they find the hospice environments to be more relaxed, aiding communication and creating the conditions for more productive, less stressful appointments. Professional relationships have also been strengthened between the care centre and hospice staff.

This study sought to determine whether a set of symptoms interpreted as complicated grief could be identified and distinguished from bereavement-related depression and whether the presence of complicated grief would predict enduring functional impairments. Data were derived from a study group of 82 recently widowed elderly individuals recruited for an investigation of physiological changes in bereaved persons. Baseline data were collected 3-6 months after the deaths of the subjects' spouses, and follow-up data were collected from 56 of the subjects 18 months after the baseline assessments. Candidate items for assessing complicated grief came from a variety of scales used to evaluate emotional functioning (e.g., the Hamilton Depression Rating Scale, the Brief Symptom Inventory). The outcome variables measured were global functioning, medical illness burden, sleep, mood, self-esteem, and anxiety. A principal-components analysis conducted on intake data (N = 82) revealed a complicated grief factor and a bereavement-depression factor. Seven symptoms constituted complicated grief: searching, yearning, preoccupation with thoughts of the deceased, crying, disbelief regarding the death, feeling stunned by the death, and lack of acceptance of the death. Baseline complicated grief scores were significantly associated with impairments in global functioning, mood, sleep, and self-esteem in the 56 subjects available for follow-up. The symptoms of complicated grief may be distinct from depressive symptoms and appear to be associated with enduring functional impairments. The symptoms of complicated grief, therefore, appear to define a unique disorder deserving of specialized treatment.

Motor neuron disease is a progressive, fatal neurodegenerative disease for which there is no cure. Formal psychological therapies are not routinely part of United Kingdom standard motor neuron disease care due to a lack of evidence-based guidance resulting from a paucity of clinical trials. We aimed to evaluate the clinical and cost-effectiveness of Acceptance and Commitment Therapy plus usual care compared to usual care alone for improving psychological health in people living with motor neuron disease. We conducted qualitative interviews with 15 people living with motor neuron disease, 10 caregivers and 12 healthcare professionals. Findings were used to develop an Acceptance and Commitment Therapy intervention specifically for people living with motor neuron disease. Next, we examined its acceptability and feasibility in an uncontrolled feasibility study with 29 people living with motor neuron disease. Findings from qualitative interviews with 14 people living with motor neuron disease and 11 therapists were used to revise the intervention. Finally, we conducted a multicentre, parallel, two-arm randomised controlled trial in 16 United Kingdom motor neuron disease care centres/clinics. Eligible participants were aged ≥ 18 years with motor neuron disease. Participants were randomly assigned (1 : 1) to receive up to eight sessions of Acceptance and Commitment Therapy plus usual care or usual care alone and followed up at 6 and 9 months post randomisation by blinded outcome assessors. The primary outcome was total score on the McGill Quality of Life Questionnaire-Revised at 6 months. Secondary outcomes included health status using the EuroQol-5 Dimensions, five-level version. Primary analyses were by intention to treat. Acceptance and Commitment Therapy was acceptable to people living with motor neuron disease, and it was feasible to recruit participants, hence trial progression criteria were met. From September 2019 to August 2022, 191 participants were recruited: 97 were allocated to Acceptance and Commitment Therapy plus usual care and 94 to usual care alone. Mean age was 61.9 years (standard deviation 11.4), 58% were male and 95% were White/White British. Acceptance and Commitment Therapy plus usual care was superior to usual care alone on the McGill Quality of Life Questionnaire-Revised at 6 months [adjusted mean difference 0.66 (95% confidence interval 0.22 to 1.10); Cohen's d = 0.46 (95% confidence interval 0.16 to 0.77); p = 0.003] and 9 months [adjusted mean difference 0.76 (95% confidence interval 0.30 to 1.22); Cohen's d = 0.53 (95% confidence interval 0.21 to 0.85); p = 0.001]. Mean differences in total costs and quality-adjusted life-years at 9 months between Acceptance and Commitment Therapy plus usual care versus usual care alone were not statistically significant [costs: £1019 (95% confidence interval -£34 to £2074); quality-adjusted life-years: 0.019 (95% confidence interval -0.07 to 0.05)]. The incremental cost-effectiveness ratio was £88,507/quality-adjusted life-year: this decreased to £13,817/quality-adjusted life-year in those with medium disease-related deterioration in subgroup analyses. Acceptance and Commitment Therapy plus usual care is clinically effective at maintaining or improving psychological health, as measured by the McGill Quality of Life Questionnaire-Revised, in people living with motor neuron disease compared to usual care alone. It was not cost-effective overall when calculated using a standard health status measure (EuroQol-5 Dimensions, five-level version). However, it was cost-effective in a subgroup of people experiencing a medium rate of disease-related deterioration. Participants from ethnic minorities were under-represented, despite recruiting from sites with diverse communities. Between-group differences in outcomes may have been partly attributable to expectancy or non-specific therapeutic effects due to the lack of an active control. Cost-effectiveness analyses may have been underpowered to detect significant between-group differences. Studies should examine the effectiveness of Acceptance and Commitment Therapy in diverse populations, compared to an active control, using a more appropriate measure to assess cost-effectiveness, and in those with different rates of disease-related deterioration. This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme as award number 16/81/01.

Family carers face substantial demands when supporting people with Motor Neurone Disease (MND) (Aoun et al., 2013). Timely support from healthcare professionals is crucial to enable carers to fulfil their caregiving role and to look after their own wellbeing. The CSNAT intervention is an evidence-based approach for person-centred assessment and support. This project aimed to adapt the CSNAT intervention to the context of MND care, and test its implementation within specialist MND services. Stage 1 involved interviews and focus groups with carers (n=33) to explore carers’ support needs at key stages of the patient’s illness; stage 2 involved workshops with carers (n=19) and practitioners (n=22) to adapt the content of CSNAT intervention and its delivery within MND care. Stage 3 involved implementation of the adapted CSNAT-MND in three specialist MND services, and interviews with practitioners (n=6) and carers (n=6) exploring their experiences of the intervention. Content of CSNAT-MND included an additional domain on support with relationships. Intervention implementation adapted to (1) legitimise assessment of carer support needs as part of routine care in MND by practitioners, (2) deliver of a stand-alone introduction stage of the CSNAT-MND intervention and (3) provide a dedicated assessment and planning conversation at a subsequent contact. This basic model was then suited to fit the working practices of three different MND services. This project provides insights into how carers of people with MND want to be assessed and supported, how this process can be delivered, and the feasibility of implementing the CSNAT-MND in routine practice.

Background Family carers play a vital role in supporting people with Motor Neurone Disease (MND) but face substantial physical and mental demands in doing so. Timely support from healthcare professionals is crucial to enable carers to fulfil their caregiving role and to look after their own wellbeing. The Carer Support Needs Assessment Tool (CSNAT) intervention is an evidence-based approach for person-centred assessment and support. This project aimed to: (i) adapt the CSNAT intervention to the context of MND care; (ii) test implementation of the adapted CSNAT-MND intervention within specialist MND services. Methods Stage 1: focus groups and interviews with 14 bereaved and 19 current carers to explore support needs (met and unmet) and supportive inputs at key stages of the patient’s illness. Stage 2: workshops with 24 practitioners and 19 carer advisers to adapt the content of CSNAT intervention and its delivery within MND care. Stage 3: implementation of CSNAT-MND in three specialist MND services; interviews with practitioners and carers exploring their experiences of the intervention. Results Content of CSNAT-MND included an additional domain on support with relationships. Intervention implementation adapted to (1) legitimise assessment of carer support needs as part of routine care in MND by practitioners, (2) delivery of a stand-alone introduction stage of the CSNAT-MND intervention and (3) provide a dedicated assessment and planning conversation at a subsequent contact. This basic model was then suited to fit the working practices of three different MND services. We will present challenges of tailoring and implementing the CSNAT-MND intervention in real life practice. Conclusion Implementation of the CSNAT-MND requires the establishment of a clear protocol defined at service level. This project provides insights into how carers of people with MND want to be assessed and supported, how this process can be delivered, and the feasibility of implementing the CSNAT-MND in practice.