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End of Life Care Research Methods
Claire GoodmanCentre for Research in Primary and Community Care University of Hertfordshire
PresentationHeath care research on dying implications for social care research
Overview of the aims and scope of the SSCR review
Care Homes and end of life care researchRecruitmentSurveysSecondary data analysisLongitudinal methodsParticipatory approaches
The context and influence of health care on end of life care research……
History of community based care provided by unqualified practitioners
Grown from cancer models of care with ( arguably) a narrow and functional view of dying
Focus on resolution of symptoms, avoidance of inappropriate treatments and hospitalizations,
A medical specialty with generalist and specialist practitioners and a disputed language
Emphasizes maintaining patient choice, dignity and support of family carers
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Issues to consider EnvironmentPain, discomfortNutritionCommunicationCapacityDecision makingCarers and familyInvolvement of specialist servicesWorkforce support and education
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Overview of the reviewEthics and recruitment: researching sensitive subjects
Proxy methods of research
Longitudinal methods of research
Survey methods of research
Intervention studies
Ethnography
Exploratory descriptive
Participatory
Appreciative enquiry
Mixed methods (often case studies) and evaluations
Data collection tools and outcome measures specific to end of life care
Researcher needs for support
Example of care homes
Dying is not an unexpected event
Sit on the boundary between health and social care
Residents often have some cognitive impairment ( that may or may not be documented)
Confusion around responsibilities especially between nursing and residential home care
End of life care research in care homesFocus on knowing when someone is dying and stopping treatments
Introducing support tools and resources for care homes
Understanding how context, caregiver beliefs and knowledge and different types of collaborative working affect end of life care
RecruitmentPossible to recruit .> 45%?Cultures of co‐operation and cultures of cautionTiers of consent: organisation, staff, relatives, residentsConsent in the momentSensitive topic
Interpreting the Mental Capacity Act for those that lack capacityWho is the consultee?A process that works
Resources eol
126 Consultee letters sent, some followed up with additional letters and/or follow up T/CsPhoto‐copying of consent/response forms for CHsTCs to arrange/re‐arrange/confirm visits
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Care Home No. Of Visits Approx. No. Of hours
CH 1 8 13
CH 2 14 39
CH 3 9 17.5
CH 4 8 37.5
CH 5 4 23
CH 6 3 16
Total 46 146
Care Home Individual Consent
Individual Refusals
Consultee Assent
Consultee Refusals
Non Responding Consultees
Total Recruited
CH 1 5 (6) 1 15 (22) 1 5 20 (28)
CH 2 12 (24) 10 13(16) 2 1 25 (40)
CH 3 6 (7) 1 10 (25) 3 12 16 (32)
CH 4 11 (13) 1 12 (17) 2 3 23 (30)
CH 5 19(26) 5 15(37) 1 21 34 (63)
CH 6 12(12) 0 3(9) 0 6 15 (21)
Totals 72 (88) 18 68 (126) 9 48 133 (214)
Prospective longitudinal research
Demonstrates changes over time it allows an insight into the health issues, deterioration, contact with health services and the time period before and after death.
Allows attitudes to be explored further at the next point of data collection. It allows ‘events’ (within a care home) to happen and the respondent can reflect on issues over time.
Allows a continuing relationship between the researcher and the respondent. BUT
Time consuming and expensive.
External influences alter the views of the respondent (e.g. a health issue such as swine flu; government policy on care homes)
.
Attrition. Particularly with this population
Living in the present“Well I don’t know about the future, I just go along day by day” (H2‐005)
“No. Not particularly, no. I don’t think when you come to my time of life you do really”[think about the future]” (H3‐005‐1)
“No, it’s never occurred to me really [to think about death]. Rather let nature take its course” (H1‐017‐3).
“I haven’t actually thought a lot about that (laugh) because I find it not um…suitable subject for contemplation, let’s put it that way” (C1‐005‐2) [Fieldnotes: however this interviewee did go on to talk about it]
“don’t think about it...I think it’s better not because you don’t know what’s going to happen in the future so you may as well just take it for granted, you know” (C1‐009‐2)
Contribution of longitudinal research
“Well I don’t quite know really, because I’m a full pensioner and an old age pensioner so you’ve got no option. I might not get a house of my own in [town] and think it suits the kids more to have me here so that they don’t worry and they can pop in and see me. They don’t want me in their lounge” (H1-005-1)
“ they’re quite happy to keep me here and then they pay for me and they pop and see me, but I don’t think they want me in their lounge…”(H1-005-2)
“I'm just now waiting to be demobbed.....Well, the thing is, I'm now, born in 1915, so what age am I now?
Fifty?......So I'm now looking forward to retirement from [a retail store] and
my old age pension and a bit of savings, I shall be all right...What’s Important to you? to keep healthy and in my little cottage,
do the garden, you know” (H1-005-3) taken from EPOCH study
Acceptance: Look to the Future (EPOCH)
Active Planning for The Future: “[manager]’s come and talk to me about what I want and what I
don’t want and she worked out all the words for me to write down, I’ve still got to write it down and she said that will stay with me because I said I don’t want to be resuscitated, I don’t want to… if I have a fall and I might be injured I don’t mind going to hospital but I don’t want to be kept in unless I’ve broken something and if they decide I’m dehydrated as I read about a case, I said I don’t want to be kept in I’d rather come back here and dehydrated than in hospital. Well I said that I don’t want to be… If I die I don’t want to be resuscitated if you know what I mean” (E4‐001‐2) (View 9)
ConclusionsChallenging area of research: dealing with peoples’ uncertainties and enduring problems of definition
Context of care as big an influence as the experience and care received
The need to pool knowledge and expertise and debate the value ofdifferent methods, and challenge assumptions about outcome measures and proxy accounts
Review aims to be a resource for researchers, funders and thosebeing invited to take part in research
Thank you!
