Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease

Abstract

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 2016MND in , 2017MND in , 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 were common (41%). 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 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 optimising community capacity. MND Associations are well-positioned to support affected families before and after bereavement but may require additional training and resources to fulfil this role.

Why and how the work of Motor Neurone Disease Associations matters before and during bereavement: a consumer perspective

“… 5 However, at least three times as many families stay grappling with grief following this traumatic experience, many of them agonising over what could have worked better. 7 Notwithstanding the physical, psychological and emotional burden of the disease on MND family caregivers, the Deloitte Access Economic Report 8 has quantified the economic disadvantage on families supporting people with MND in Australia. These caregivers provide an estimate of 7.5 h of informal care per day with the productivity loss estimated at $68.5 million in 2015, or $32,728 per person, with families shouldering most of these costs ($44.0 million) and with government bearing the rest ($24.5 million) in the form of lost taxes.…”

“…A majority of participants (63%) required bereavement support beyond their family and social networks. 7 Most had accessed support from family and friends, followed by MND Associations, general practitioners (GPs) and funeral providers. While informal supports were considered the most helpful, sources of professional help were the least used and were perceived to be the least helpful.…”

“…While informal supports were considered the most helpful, sources of professional help were the least used and were perceived to be the least helpful. 7 More alarmingly, bereaved MND caregivers were found to be at higher risk of Prolonged Grief Disorder (PGD) than the general bereaved population. 2 This condition was associated with reported deterioration in their physical (31%) and mental health (42%).…”

A Self-Applied Multi-Component Psychological Online Intervention Based on UX, for the Prevention of Complicated Grief Disorder in the Mexican Population During the COVID-19 Outbreak: Protocol of a Randomized Clinical Trial

“…This intervention contains communication skills tools to help externalize the problem and set realistic goals (Malkinson, 2010). Among them, guiding and reassuring the person to reduce anxiety symptoms and explore emotions (Aoun et al, 2020;Morris et al, 2020); transmitting therapeutic support to process information and recognize emotion (Neimeyer, 2014); paying attention to self-care; maintenance of social relationships through the internet, mobile, etc. ; help to restructure thinking; expressing and identifying emotions; recognizing positive emotions (Lyubomirsky, 2008).…”

“…On other hand, self-applied interventions appear as an option to arrive at a great number of participants. To make a selfapplied intervention effective, tools are included to communicate skills that help to externalize the problem and set realistic goals, as recommended by Malkinson (2010), with the crosscutting objective of reducing anxiety symptoms and exploring emotions (Aoun et al, 2020;Morris et al, 2020). Along the same lines, previous research has shown the effectiveness of online tools in grief support that help improve the adaptive adjustment of people in grief (Dominick et al, 2010).…”