Bell, Steve

Jack, Barbara

Kirkcaldy, Andrew

Knighting, Katherine

O'Brien, Mary

Roe, Brenda

Conference Poster Exploring the experience of pre and post- bereavement support in carers of those living with terminal illness: a small scale, mixed methods stud

Edge Hill University Research Information Repository

Exploring the Experience of Pre and Post-Bereavement Support in Carers of Those Living with Terminal Illness: A Small-Scale, Mixed-Methods Study Dr Mary O’Brien1, Prof. Barbara Jack 1, Andy Kirkcaldy 1, Dr. Katherine Knighting 1, Prof. Brenda Roe 1Contact details: Dr Mary O’Brien,EPRC, Faculty of Health and Social CareEdge Hill University, Ormskirk, L39 4QP, Tel +44 (0)1695 650918, Email: obrienm@edgehill.ac.uk1 Evidence-based Practice Research Centre, Edge Hill University, UKBackground:• Around 500,000 of the 6,500,000 unpaidfamily carers in the UK provide supportand care within the context of an end oflife phase.• It is recognised that caring can be apositive and rewarding experience forsome carers, but for others this may notbe the case. (Cohen et al., 2002)• Carers at the end of life phase are at riskof developing Prolonged Grief Disorder(PGD) - also known as ‘complicatedgrief’, ‘abnormal grief’, ‘chronic grief’and ‘distorted grief’.• Inadequate preparation and supportprior to death is amongst the riskfactors for PGD. (Barry et al., 2002)• Carers, concerned about wasting thetime of their doctor, can be reluctant tomake an appointment for issues relatingto bereavement. (Nagraj & Barclay,2011)• Carers are often ‘assumed to have nounmet support needs.’ (Aoun et al.,2012: 843)Aim:The aim of this study was to explore the needsof carers in relation to Prolonged Grief Disorder (PGD) to understand more fully their experiences supporting someone who is approaching end-of-life.  Methodology:This was a mixed-method evaluation consisting of two phases: 1) Qualitative phase 2 focus groups with carers (n= 16)2) Quantitative phase  Electronic survey with health and social care professionalsAnalysis Qualitative data were subject tocontent analysis to identify themes.Quantitative analysis explored frequenciesfrom 62 respondents.Results (selected):• The caring role was experienced as demanding and timeconsuming. Feelings of isolation, fear and being overwhelmedwere common.• Many carers felt unable to prioritize themselves and timelimitations often meant they were unable to access availablesupport.• Some carers were often discouraged from accessing supportfor the caring role by the person who was ill.• Whilst in some cases peer support had proved invaluable, forother people social contact had reduced since taking on thecaring role.• 44% (27 survey respondents) felt that support services offeredto carers prior to experiencing bereavement were either pooror fair; around• 27% (23 survey respondents) believed that post-bereavementcare was poor or fair.• 41% (24 survey respondents) reported encountering PGD,significantly higher than estimates in most of the publishedliterature.• Only 20.3% (12 survey respondents) felt accurately able topredict future occurrences of PGD in family carers.• 72% (42 survey respondents) felt that the implementation ofan alert tool would be worthwhile.Conclusion:The needs of carers, both pre and post-bereavement, are complex and varied, with a range of barriers frequently preventing appropriate support being accessed or delivered.  To counter this, and to ensure timely and appropriate intervention, there is broad support amongst carers and health and social care staff for the development of an alert tool to help identify those at risk of experiencing an adverse grief reaction. Consistent with the findings of other studies, our work suggests that further research into this area is warranted, and as such, work to develop an alert tool is planned. You couldn’t go to these things that were offered to carers because you couldn’t be released from your caring. It’s got to be built in.  There’s no point having a session . . . if you haven’t got help to cover your absence.  F3FG2My wife . . . would not have anybody come and sit with her so that I can go out and do the shopping . . . we never asked any outside carers for help, my wife didn’t want that.   M1FG2We had no friends, in fact one of [our] friends said “I can't do this again, I can't come and see him”   . . . and I told him where to go, really.  F2FG2

Exploring the experience of pre and post-bereavement support in carers of those living with terminal illness: a small-scale, mixed-methods study.

https://research.edgehill.ac.uk/ws/files/21141936/Exploring_experiences_of_Pre_and_post_bereavement_support_in_terminal_illness_International_palliative_care_network_conference_Poster.pdf

Exploring the experience of pre and post-bereavement support in carers of those living with terminal illness: a small-scale, mixed-methods study.

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