MNDBeSup: Version 1.0
Research type
Research Study
Full title
Motor Neurone Disease Bereavement Support (MNDBeSup) study
IRAS ID
301675
Contact name
Suresh Kumar Chhetri
Contact email
Sponsor organisation
Lancashire Teaching Hospitals NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Motor Neurone Disease (MND) is a fatal illness that leads to progressive paralysis of muscles of speech, swallowing movement and breathing. Affected individuals usually die within 2-3 years of symptom onset.
Caring for a person with MND is an unremitting commitment and the impact of this ‘carer-burden’ often continues beyond the death of the patient, impacting the bereavement process. Bereavement is an extremely stressful event and affects various aspects of health and well-being including physical, behavioural, psychological, emotional, spiritual, social and cognitive domains. These negative consequences, including reduced quality of life, have been reported to be worse in caregivers/family members of people with MND than other terminal illnesses.
The Department of Health (2005) emphasises that provision of bereavement services is an important aspect of NHS care and “not an optional extra”. However, bereavement support in MND is a significant unmet need and little is known about the spectrum of bereavement needs and what kind of bereavement service is available or offered to caregivers/families of people with MND.
This study aims to explore bereavement support needs of bereaved informal caregivers (usually family members, relatives or friends involved in provision of care) of people with MND and identify gaps in bereavement service provision in Lancashire and South Cumbria. We plan to recruit bereaved informal caregivers of people with MND and key stakeholders in Lancashire and South Cumbria to identify support needs, nature and availability of bereavement care, and views and experiences with existing bereavement support services. The findings of this study will provide us valuable information on opportunities, barriers and priorities for provision of timely, integrated and high-quality local MND bereavement support services.
Lay summary of study results: Motor Neurone Disease (MND) is a fatal illness that leads to progressive paralysis of muscles of speech, swallowing, movement and breathing. Affected individuals usually die within 2-3 years of symptom onset.Caring for a person with MND is an unremitting experience and caregivers experience a spectrum of strains including physical, financial, social, emotional and psychological. These negative consequences have been reported to be worse in informal caregivers of people with MND than those who care for loved ones with other terminal conditions. The impact of this ‘carer-burden’ often continues beyond the death of the patient, impacting the bereavement process and sometimes leading to prolonged grief.
This study, undertaken as part of postgraduate research degree at University of Central Lancashire, aimed to explore the bereavement support needs, perspectives and experiences of bereaved informal caregivers of people with MND and identify gaps in bereavement care provision in Lancashire and South Cumbria in North-west England. The study used a combination of questionnaires and interviews to identify bereavement needs and experiences of service users and stakeholders with the existing bereavement services.
The study team included members of the MND Patient and Public Involvement (PPI) group who made significant contributions to the study proposal, including design of questionnaire and interview questions.
A total of sixty-three caregivers completed the study questionnaire, which was designed to explore their bereavement needs, types of bereavement services accessed and factors that may contribute to prolonged grief. Twenty caregivers participated in interviews that aimed to explore their perceptions about the barriers and opportunities for accessing bereavement support services. Twenty-five General Practitioners completed an online survey aimed at exploring their practices and experiences in providing bereavement support. A total of eighteen health and social care professionals, involved in delivery of MND services in Lancashire and South Cumbria, participated in interviews that aimed to explore current practices, perspectives, priorities, opportunities and barriers for providing bereavement support to caregivers of people with MND.
The findings indicate that the ability to cope with bereavement is influenced by availability of support services, including social support, caregiver mental wellbeing and loved one’s place of death. It was felt that support from the MND multi-disciplinary team throughout a patient’s journey, including at the time of death and beyond, was extremely important in helping cope with caregiver burden and bereavement. Caregivers wished to have a better understanding of what to expect during the illness trajectory and felt that such knowledge could have alleviated their anxiety in caring for their loved one, processing their loved one’s death and dealing with grief. Interventions to improve the quality of life of caregivers, for example mental health support, help to process the difficult emotions that will naturally arise when caring for a loved one with a diagnosis of MND, and help with social functioning were identified as keys to improved quality of life.
The importance of training health care professionals involved in delivering care and support to patients with MND, including advance care planning, was also identified as an important theme.
In conclusion, the study findings highlight the need for a holistic and personalised approach to address caregiver burden and challenges of bereavement. The findings will be used to inform provision of bereavement support services in Lancashire and South Cumbria.
The study team are very grateful to all study participants. Further information about this study can be obtained by contacting the Lancashire and South Cumbria MND Care and research Centre: mndteam@lthtr.nhs.uk or 0177252 2545
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
21/EM/0222
Date of REC Opinion
9 Nov 2021
REC opinion
Further Information Favourable Opinion