Lessons to be Learned

Rosemary Chesson

The Robert Gordon University

Findings

• Previous research (literature review)

• Participants

• Use of validated measures (NHP, HADS, SSQ)

• Functions of respite

Grey literature:

• difficult to access (time consuming)

• frequently qualitative methods.

• accounted for 1/3rd all references

• majority of items one-off evaluations

Literature review

Problematic:

information missing (data/info on respondents)

low response rates

copies of reports incomplete

lobbying for services

Grey Literature

• majority of USA origin

• mainly focused on children with learning disabilities and older people with dementia

• carer perspective

• needs related

• few studies examining effects of respite/use of outcome measures

Published literature

Not possible to do meta-analysis

‘because of the great diversity in study design types of intervention, settings of intervention and variety of outcome

measures’

McNally et al, 1999

Effectiveness of Respite

• Overall lack of coherence• 4 UK studies

- lack of definition- different care groups- findings inconclusive

Post McNally

Participants

20 men : 40 women

17 paired interviews

8 Frail older

5 Multiple Sclerosis

1 Mental health

3 Learning disabilities

Age range 30-92

Interview Study

Participants

Group Carer Cared for Total

Frail, elderly 11 9 20Multiple Sclerosis 5 11 16Mental health 2 1 3Learning disabilities 10 3 13Chdn. complex needs 8 - 8All 36 24 60

Hu cared for by wife Mo caring for son Partner caring for partnerHu carer to wife Mo caring for dau Both carers/both with Fa carer to son Mo cared for by dau disabilitiesFa carer for dau Wfe carer to hu Frd help/care for frd (m)Fa cared for by dau Wfe cared for by huSon cared for by father Dau cared for by mo

Dau cares for mo Dau cares for fa Sr caring for bro Mo-in-law cared for by dau-in-law Dau-in-law cares for mo-in-law

Caring Relationships

Nottingham Health Profile

Completed by 24/29 ‘cared for’34/36 carers

Scores ranged from 2- 12 for carers9-18 for cared for

(max 38)

Outcome measures

HADS

Completed by 53 interviewees

Differences between depression and anxiety scores

8 carers had scores indicative of moderate/severe levels of anxiety

Outcome measures (cont)

SSQ

Completed by 50 interviewees

Aberdeen Strathclyde LochaberMedian (range) Median (range) Median (range)n=25 n=19 n=6

Cared (n=35) 6 (3-18) 7 (2-13) 7.5 ( 4-16)Cared for (n-15) 4 (2-11) 4 (3-8) 3.5 (3-4)

Outcome measures (cont)

n=48

Residential care 18Respite in own home 13Hospital respite 12Emergency respite 5Family-based respite 3

Respite use

%

None 16

A little 45

Didn’t know 10

28% indicated ‘a great deal’

Knowledge of respite

• knowledge appeared limited to own experience

• narrow range of services

• didn’t know how to access services directly themselves

• not in touch with other respite users

• not members of carers/respite organisation

• confused regarding entitlements

• confused regarding definitions

Knowledge of respite (cont)

‘Help around the house or something? I’m not entirely sure.’ Mr. X

‘I didn’t know what it is called ... somebody there said that was what they were there for - so I thought I must be here for it as well.’

Mrs. BB

Definitions of respite

Definitions of respite

‘If my MS got worse from what I understand it’s just like an assisted living place isn’t it? ......... if you feel sick and cannot take care of yourself, then you need respite ....’

Mrs. F

Definitions of respite

‘Well I’ve never been down that avenue ... I daresay the Carers Centre does respite in people’s homes, but they don’t call it respite.... I can’t remember what they call it.’

Carer DD

What are respite services?

‘Well, day care I would say that is respite for me. I would say as the carer it’s respite for me. Also the community carer that mum gets, again is respite for me.’

Carer EE

‘Well actually, I don’t actually (See it as respite) because I don’t see the personal assistant and I don’t see R’s day centre as respite. I see it as a bonus.’

Carer Z

What is respite care?

‘I would just like him to be settled in a nice place and then he can come back to us for respite, but he will have his home, his other home, to go to.’

Carer JJ

Respite provided different functions for different people

• give time for other fam mbs

• help cared for prepare for future

• help carer when tired/ill

• enable carer to cope in crisis

‘But as you get older your respite needs change totally. You’re not needing out for social activities or R’s social activities. Its physical health wise every way you need the respite. It changes over the years.’

Carer FF

Changing needs

‘My husband’s mother died quite suddenly last year and that was down in Glasgow. We were able to have emergency respite through (named service). They were super. It was super not to have to worry about (our young daughter).’

Carer I

Different functions

‘I think what she’s got next week is classed as emergency respite because I was so upset and I was really scared that I would do her damage. I had to stop myself because I would have and I am scared if I was, I wouldn’t know when to stop I don’t want to do that and I don’t want her to feel that she’s not wanted because I do love her and I do want her, but I just want a wee bit of life to myself and its very difficult.

Carer N

Different functions

‘So the respite element has taken over more of a kind of ‘respite role’ compared to what our original intention which was the independence thing. But I think the way things are moving just now, and as we become less able to deal with A, as we would want is also due to physical reasons. I mean there used to be day when she was smaller, she would dump herself on the floor and I would lift her up. I couldn’t attempt to do that now.’

Carer GG

Changing needs

• Carers expressed concerns about deteriorating health

‘Yes, I had a kidney removed about six years ago. I had a terrible time with her then. I wasn’t at all well and trying to cope with her. I look back now, I don’t know how I survived.’

Carer QQ

Changing needs

1. research evidence can not be used to justify provisions of respite services

2. outcome measure too blunt esp:- diversity in caring relationships and situations

- problems identifying respite care (diffs term.)

3. complexity of evaluating the effects of respite – large

numbers of variables to control, and changing needs

4. problems isolating effects of respite from other service provision and family support systems

Main implications

• develop realistic research agenda

• caution regarding evidence-based agenda (policy makers/ managers)

• reconcile right to privacy/consent to research and need for research

• distinguish core ‘respite’ from by-products of other services

• acknowledge every scenario may be different and change over time

Issues