Exploring experience and awareness of bereavement support in family carers of people with MND.

Mary O'Brien, Andrew Kirkcaldy, Barbara Jack, Steve Bell, Katherine Knighting, Brenda Roe

    Research output: Contribution to conferencePaperpeer-review


    Background It is well-established that family carers’ needs should be assessed, and also met, especially during endof-life care and into bereavement (Arthur et al., 2010). Bereaved carers tend to experience higher rates of physical and mental illness and mortality than the general population. We know that caring can be a positive and rewarding experience, but this is not so for all carers (Cohen et al., 2002). Amongst those with a greater likelihood of negative grieving outcomes are carers of people with advanced or progressive illness, such as ALS/MND. These carers are at greater risk of grieving the death of a loved one in an unusually intense manner, beyond the length of time typically considered normal, a condition known as Prolonged Grief Disorder (PGD) (Prigerson et al., 2009). Carers of people living with ALS/MND (plwMND) have likened their experience of caring as akin to experiencing a series of bereavements. Fragmented, poorly communicated and generally dissatisfying service provision also means carers of plwMND are under considerable strain. Objective To seek the views of carers and health/social care professionals on the subject of bereavement support. Programme Description This paper will present findings relating to a small-mixed methods study. Two focus groups were conducted with carers (n=16) and an online survey administered to health/social care professionals (n=59) in England. Clinical Outcomes Our data suggest bereavement-related support for carers could be improved, that Prolonged Grief Disorder (PGD) may be experienced at a higher level than previously thought and that health/social care professionals struggle to reliably identify the risk of PGD amongst carers of plwMND. Recommendations to the Field Despite the current emphasis placed on caring for carers, at present there are relatively few screening tools examining negative grieving outcomes pre-death, and those which do exist are limited in some way. There is broad support for the future development of an alert system based on the preferences of carers, health and social care staff and other professionals, to enable those working with carers of plwMND to identify carers at risk of developing PGD which will impact positively on the likelihood of appropriate and timely referrals occurring.
    Original languageEnglish
    Publication statusPublished - Dec 2014
    Event12th Annual Allied Professionals Forum - Brussels, Belgium
    Duration: 4 Dec 2014 → …


    Conference12th Annual Allied Professionals Forum
    Period4/12/14 → …


    • bereavement
    • prolonged grief
    • motor neurone disease


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