The Carers' Alert Thermometer (CAT): supporting family carers of people living with motor neurone disease

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

Purpose: Family carers provide the majority of home-based care for people with motor neurone disease (MND). Carers’ need for, and use of, support services are not fully understood; this study aimed to explore, from a qualitative perspective, the views of current and former family carers of people with MND. Methods: A qualitative study was undertaken in Northwest England, using narrative interviews with current (18) and former (10) carers of a family member with MND. An optional longitudinal element involving diary completion was offered to the current carers. Data were analyzed using a thematic framework approach. Results: Carer’s needs vary, but encompass the provision of information and training, availability of respite care, counselling, and access to trained paid-for carers. Conclusions: There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.Implications for RehabilitationPeople with motor neurone disease have complex care needs with family carers providing the majority of home-based care.This study has shown there is a need for increased training in manual handling and physical care for family carers.Failure to properly support family carers increases the burden on them and if left unchecked may ultimately affect where the patient is cared for.A range of support services are needed for family carers with clear signposting for them to select those most appropriate for their individual needs.

While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated. Anonymous postal surveys were sent to people with MND in Australia and their family carers respectively. The perceived ability/skills of neurologists was assessed using a five-point scale from excellent to poor. Attributes of communication of bad news was measured by the SPIKES protocol. Each survey question invited further written responses. Eight hundred and sixty-four questionnaires were posted to people with MND and their family carers, with assistance from MND associations. One hundred and ninety-six family carers submitted responses, of which 171 (88%) were patient-carer dyads. Analyses were conducted on 190 family carers. Five themes emerged from reading and re-reading written responses: frustrations with the diagnosis; giving information; family carer observations of the neurologist; the setting; and what would have made the diagnosis easier? The delivery of the diagnosis is a pivotal event in the MND trajectory. Satisfaction for patients and their family carers is related to the neurologists showing empathy and responding appropriately to their emotions, exhibiting knowledge and providing longer consultations. Neurologists may benefit from education and training in communication skills to adequately respond to patients' and families' emotions and development of best practice protocols.

Background Palliative care at home relies on family carers. Motor neurone disease (MND) is a progressive, degenerative disease that affects both the person with the condition and the family which provides care and support. Aim This study aimed to provide a qualitative insight into carers’ experience of living with and caring for a family member with MND. Methods Following ethical approval, nine current carers were purposively sampled from a regional MND clinic. Qualitative, semistructured interviews were audiotaped, transcribed verbatim and analysed thematically using Colaizzi’s framework. Findings Five themes were identified: (1) ‘MND: the specifics and differences’ (reflecting the specific nature and progression of the disease); (2) ‘normality vs reality’ (providing an insight into daily living); (3) ‘defining the total loss but holding onto hope’ (encompassing past, present and future losses, whilst maintaining a positive attitude); (4) ‘information needs and support — at whose pace?’ (recognising the differences in need between the carer and the person with MND); (5) ‘living with a tension of contradiction’ (this is an underpinning theme which runs throughout all the themes). Conclusion Understanding carers’ experience and its individual nature can act as a foundation upon which individual palliative assessment of need and support can begin. Conflicts of interest None

In 2016, twenty people with Motor Neurone Disease (MND) in the Lancashire and South Cumbria region were admitted and died in hospital. Following a meeting in early 2016 with the MND Association, the local hospices were approached to consider how the MND ice bucket challenge money could be utilised for future MND patient support. From this, local MND Association staff met with St John’s Hospice staff to look at how the hospice could support MND patients through our already existing services. The group looked at the gaps in services and staff knowledge, what causes a crisis leading to hospital admission, and what skills are required to keep people with MND at home, if that is their preferred place of care and death. The main issues often leading to admission were documenting and managing advance care planning; supporting cognitive impairment difficulties; and supporting family carers using practical skills such as taking blood gases, managing non-invasive ventilation (NIV) and using cough assist devices. For family support and education, the day services team set up a ‘STAR’ group (Support, Time-out, Advice, Recovery: named by the attendees) for people with MND and their main carer. This addressed advance care planning; hospice services and what they can provide; support to carers; nutrition, and speech and language advice. This would run weekly, following on from the quarterly MND clinics, for four weeks. The team also set up a successful MND study day for professionals, which was well evaluated and covered diagnosis, prognosis, and symptom management. The Hospice at Home and ward teams are presently being developed in the practical skills listed above, in order to support people to stay in their own homes when near end of life. An update on this work will be included in the poster.

BackgroundDignity therapy is a brief psychotherapy that has been shown to enhance the end of life experience. Dignity therapy often involves family carers to support patients weakened by illness and family carers are also the usual recipients of the legacy documents created. No research to date has examined the impact of dignity therapy on family carers at the time of the intervention. This study examined the effects of dignity therapy on family carers of people with motor neurone disease (MND).MethodsThis is a cross-sectional study utilizing a one-group pre-test post-test design with 18 family carers of people diagnosed with MND. Outcomes measured caregiver burden, anxiety, depression, and hopefulness. Acceptability was measured with a questionnaire. Feasibility was assessed by examining family carers’ involvement in the therapy sessions, time taken to conduct sessions, and any special accommodations or deviations from the dignity therapy protocol.ResultsThere were no significant pre-test post-test changes on the group level, but there were decreases in anxiety and depression on the individual level. Baseline measures indicate that 50% of family carers had moderate to severe scores for anxiety prior to dignity therapy. MND family carers saw benefits to the person with MND and to themselves after bereavement, but acceptability of dignity therapy at the time of the intervention was mixed with some family carers indicating it was helpful, some indicating it was harmful, and many expressing ambivalence. Dignity therapy involving MND family carers is feasible and the involvement of family carers has minimal impact on the therapy.ConclusionDignity therapy is not likely to alleviate caregiver burden in MND family carers, but it may have the ability to decrease or moderate anxiety and depression in distressed MND family carers. Dignity therapy is feasible and generally acceptable to MND family carers. Dignity therapists may provide a better experience for family carers when they are aware of acceptance levels and the quality of partner relationships.Trial registrationANZCTR Trial Number: ACTRN12611000410954

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 with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers' emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched. To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND. We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis. Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing. Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

BackgroundDevelopment of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers.Methods/designThis is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire.DiscussionThis detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families.Trial registrationACTRN Trial Number: ACTRN12611000410954

Co-design of an mHealth application for family carers of people with dementia to address needs related to the functional disability of their care recipients

Background: Quality of Life (QoL) is an important consequence in neurological clinical care. The debate about generic and disease specific measures of quality of life reflects uncertainty about whether there are unique aspects to understanding QoL in different diseases. If there are commonalities to different disabling neurological diseases, it may be credible to extrapolate from more common and better-studied conditions, like multiple sclerosis (MS) to rarer diseases like motor neurone disease (MND). Distinctions across neurological conditions would suggest that strategies to maximise QoL must be disease specific. Objectives: In this analysis our aim was to explore psychosocial factors affecting QoL in MND in comparison with MS. Methods: The study employed both semi-structured interviews and focus groups. Each focus group was consisted of either MND or MS. All interviews and group discussions were audio recorded and transcribed verbatim for a thematic analysis. Themes were inductively developed within a condition before they were compared across the two conditions for cross-sectional exploration. Results: Data was collected from 40 people with MND: 26 interviews (male=14; mean age= 64yrs; mean illness duration=1.6yrs); 14 in focus groups (male=9; mean age=62yrs; mean illness duration=3.5yrs); and from 61 people with MS: 43 interviews (male=16; mean age=52yrs; mean illness duration=15yrs); 18 in focus groups (male=6; mean age=47yrs; mean illness duration=9yrs). A codebook for each condition was developed for the analysis and saturation was achieved in both MND and MS. Whilst the analysis identified the same psychosocial domains to be important for QoL irrespective of disease, there was an aspect unique to MND of it being a terminal condition. Both MS and MND patients valued their lives, but MND patients recognised their shorter life expectancy and differed from MS patients because thoughts of imminent death adversely impacted QoL. Participant’s concerns about their death were not restricted to themselves, but extended to impact on significant others. The differences between MND and MS were further observed with regard to factors that were beneficial to QoL. Although the positive influence of environmental factors and spirituality were found in both conditions, additional implications of these factors were found amongst the MND group: it was found that the importance of environment included the place of death, and spirituality was described to provide hope even beyond death. Discussion and conclusions: The current study reveals complexity in ascertaining QoL across neurological diseases. Despite distinct illness trajectories, the same psychosocial factors were identified to be important for QoL in MND and MS. Nevertheless, MND as a terminal condition was found to further challenge patient’s QoL. The findings confirm the importance of addressing this aspect of the condition in addition to commonly investigated psychosocial factors.

Introduction and objectives Mechanical Ventilation (MV) in Motor Neurone Disease (MND) improves survival and quality of life.1 With advanced MND, the patient may decide that MV is no longer appropriate and request withdrawal. The Association of Palliative Medicine published guidelines to support clinical teams with MV withdrawal at the request of MND patients.2Health Care Professionals (HCPs) providing MV withdrawal find the experience challenging. Additionally, feedback from families suggests that the care falls short of what they and the patient required at the time of MV withdrawal.2 Furthermore, patients approaching the end of their lives value close contact with carers and loved ones.3 Therefore, it is imperative that HCPs undertaking MV withdrawal be confident with the ethical, legal and practical issues involved. Our objective was to deliver a training session to HCPs which would cover the issues involved in MV withdrawal in MND and to measure the impact of this intervention. Method A training session was developed covering ethical, legal and practical aspects of MV withdrawal at the request of MND patients. The delegates were nurses, physiotherapists and doctors from a palliative care background. Delegates rated their confidence on a scale of 0–10 in the management of MV withdrawal in MND from an ethical, legal and practical perspective before and after the training session. Data were analysed using the Wilcoxon Signed Rank Test. Results The data were collected from 64 participants. There was a significant increase in the confidence of the delegates in the management of MV withdrawal in MND after the training session (table 1). Conclusions These data demonstrate that the training session resulted in significant improvements in confidence of those delivering palliative care to patients with MND undergoing MV withdrawal. It is therefore a critical training session that all HCPs working in this area should be offered. References Bourke SC, Tomlinson M, Williams TL, Bullock RE, Shaw PJ, Gibson GJ. Effects of non-invasive ventilation on survival and quality of life in patients with amyotrophic lateral sclerosis: A randomised controlled trial. Lancet Neurol2006;5:140–47. http://apmonline.org/wp-content/uploads/2016/03/Guidance-with-logos-updated-210316.pdf [Accessed on 14/07/2018] Dening KH, Jones L, Sampson EL. Preferences for end-of-life care: A nominal group study of people with dementia and their family carers. Palliative Medicine2012;27(5):409–17.

… I would like to discuss my longevity as my fear of life is greater than death … quote from a person with MND. With no known cure and no effective treatment yet available for Motor Neurone Disease (MND), this article focusses on quality of life, quality of care and quality of death, the three outcomes of a palliative approach to caring for people with MND (PwMND) and their family carers. A palliative approach emphasizes the need for a patient and family-centred care that focuses on the person and not only on the illness, the importance of therapeutic interactions between care providers and the patient and family, a clear communication all through the illness trajectory and it stresses in particular, the importance of goals of care and advance care plans.A palliative approach needs to be integrated into the care plan for PwMND from the time of diagnosis, aiming to optimise their quality of life by relieving symptoms, providing emotional, psychological and spiritual support pre-bereavement, minimising barriers to a good death and supporting the family post-bereavement. However, these outcomes cannot be achieved without the following cornerstones of a palliative approach to MND care which starts with an empathetic delivery of the diagnosis, the vital support of family carers, the involvement of MND Associations, the education and training of general health and community care practitioners and the connection between the informal caring networks with the formal networks, as exemplified by Compassionate Communities policies and practices.The present article describes a number of evidence-based initiatives from diagnosis to bereavement that need to be implemented in standard practice in order to improve the health and social care of PwMND and their family carers. The drive to find a cure should not detract from the fact that PwMND and their families still need to be supported physically and psychologically until then, by all service providers using a palliative approach, through the continuum of care from start to end.

Background: Motor neurone disease (MND) is an incurable neurodegenerative condition. Recent guidelines from the MND Association UK (MNDA) emphasise prompt diagnosis and monitoring of quality of life (QOL). However, primary literature indicates that diagnosis is often delayed through several factors, including unawareness of how MND presents and delays through multiple secondary referrals. The [hospital] operates an internationally-recognised MND clinic whose service has not been audited against the MNDA UK guidelines for the last 3 years.Aim: To assess how well the MND consultant’s service ensures prompt diagnosis and the provision of end-of-life care or appropriate respiratory or nutritional support.Methods: Using the [hospital’s] database, records from 77 patients consulted consecutively in the MND clinic were obtained. Service parameters were compared against reference standards for diagnostic delay and treatment provision.Results: 84.4% of referrals came from neurologists outside of the MND service, with only 13% from general practitioners. On average, it took 14.7 months for patients to be seen in the MND clinic following symptom onset. Riluzole and percutaneous endoscopic gastrostomy (PEG) were prescribed faster in bulbar-onset versus limb-onset patients, by 4 times and 9 times respectively. End-of-life care discussion was recorded for 26% of patients.Conclusion: Diagnosing MND remains challenging for primary care physicians, which may be alleviated by disseminating recent Red Flag Committee guidelines. Investigation and treatment provision differed between MND subtypes, given the poorer prognosis associated with bulbar-onset. End-of-life care documentation remains low, which is an issue for the multi-disciplinary team (MDT) to resolve through incorporating palliative services.

BackgroundPeople with Motor Neuron Disease (MND), of which amyotrophic lateral sclerosis (ALS) is the most common form in adults, typically experience difficulties with communication and disabilities associated with movement. Assistive technology is essential to facilitate everyday activities, promote social support and enhance quality of life.ObjectiveThis study aimed to explore the types of mainstream and commonly available communication technology used by people with MND including software and hardware, to identify the levels of confidence and skill that people with MND reported in using technology, to determine perceived barriers to the use of technology for communication, and to investigate the willingness of people with MND to adopt alternative modes of communication.MethodsAn on-line survey was distributed to members of the New South Wales Motor Neuron Disease Association (MND NSW). Descriptive techniques were used to summarize frequencies of responses and cross tabulate data. Free-text responses to survey items and verbal comments from participants who chose to undertake the survey by telephone were analyzed using thematic analysis.ResultsResponses from 79 MND NSW members indicated that 15-21% had difficulty with speaking, writing and/or using a keyboard. Commonly used devices were desktop computers, laptops, tablets and mobile phones. Most participants (84%) were connected to the Internet and used it for email (91%), to find out more about MND (59%), to follow the news (50%) or for on-line shopping (46%). A third of respondents used Skype or its equivalent, but few used this to interact with health professionals.ConclusionsPeople with MND need greater awareness of technology options to access the most appropriate solutions. The timing for people with MND to make decisions about technology is critical. Health professionals need skills and knowledge about the application of technology to be able to work with people with MND to select the best communication technology options as early as possible after diagnosis. If people with MND are willing to trial telehealth technology, there is potential for tele-consultations via Skype or its equivalent, with health professionals. People with MND can benefit from health professional involvement to match technology to their functional limitations and personal preferences. However, health professionals need a comprehensive understanding of the application of available technology to achieve this.