Background
“Almost every simple question, you get some kind of story”(Research interviewer)
Context of living with dementia: the carer perspective
Method
Rationale for an embedded qualitative study
Study type | Study aim | Method | Sample | Analysis |
---|---|---|---|---|
Observational study | To explore the presence and effect of different approaches to home support for people in later stage dementia within selected geographically distinct areas in England. | Structured standardised interviews at 2 time points | < 300 people aged 60+ in later stages of dementia and their carers across 6 NHS Trusts in Englanda | Statistical |
Adapted embedded study | To explore: 1. The feasibility of collecting rich contextual, data during structured interviews 2. Foregrounding the voice of carers during structured research interviews 3. The research process from perspective of participants | Audio recording of subset of follow-up (time 2) structured standardised interviews | Subset of 17 carers from one trust Purposive sample using PANT score | Thematic analysis of incidental conversational data |
Recruitment to the main and embedded studies
ID | Dyad features | Person with dementia | Carer | ||
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1 | Spouses (n = 8) | Co-living(n = 10) | Male carer (n=5) | Wife | Husband |
2 | Wife | Husband | |||
5 | Wife | Husband | |||
8 | Wife | Husband | |||
10 | Female friend | Male friend | |||
6 | Female carer (n = 11) | Husband | Wife | ||
14 | Husband | Wife | |||
16 | Husband | Wife | |||
4 | Inter-generational (n = 9) | Mother | Daughter | ||
17 | Mother | Daughter | |||
13 | Live separately (n = 7) | Mother | Daughter | ||
7 | Aunt | Niece | |||
9 | Aunt | Niece | |||
11 | Mother-in-law | Daughter-in-law | |||
12 | Father | Daughter | |||
15 | Father | Daughter | |||
3 | Male carer (n=1) | Father | Son |
Data collection
Person with dementia characteristics and circumstances | |
-Demographic information (including gender, age, ethnicity, and marital status) -Living situation (home, hospital, or care home) -Practitioner Assessment of Network Type (PANT) [17] -Bristol Activities of Daily Living Scale (BADLS) [21] | |
Person with dementia quality of life | |
-Dementia Quality of Life scale (DEMQOL) – proxy version (30-item) [22] | |
Carer characteristics, health and burden | |
-Demographic information (including gender, age, ethnicity, marital status) -EQ-5D-5 L [23] -General Health Questionnaire (GHQ-12) [24] -Short Sense of Competence Questionnaire (SSCQ) [25] -Zarit Burden Interview (ZBI − 22-item) [26] | |
Support to person with dementia | |
-Informal support by carer (relationship to person with dementia; care tasks undertaken – nature and frequency; employment status) Adapted from [27]. -Formal care (health and social care services; adaptations and equipment; inpatient and outpatient care; and ambulance use) Adapted from [27] -Reliability, sufficiency and effectiveness of care (personal; daily household; and weekly household) [28] |
Data analysis
Step 1: Standardised question | Are they (formal support services) reliable or are there sometimes lapses or are they only reliable at certain times? | |||
Step 2: Participant response: | “We don’t have people on a Saturday and a Sunday because it … it was very hit and miss … I didn’t particularly want to get up at seven o’clock on a Saturday morning … … they caught me a couple of times halfway through a shower, which is horrible … There was one weekend when we waited for them to come and at half past 11 they hadn’t come so I said, forget it … So, … We get up on a Saturday now when we want to, well We … have breakfast in dressing gowns, sit and read the paper and then when I feel like it … go and shower … but why not!? We’re retired” | |||
Step 3: Thematic analysis process | Summary | i)Broad descriptive code | ii)Concepts/sub themes | iii)Themes |
Step 3: Thematic analysis of data from summary to theme | Unreliability of weekend service leading to feeling out of control in own home. Cancelled service to regain this. | Formal service - domiciliary care (negative) | Formal service insensitive to circumstances. Control over home life at a cost | Maintaining normality Retaining agency |
Quality assurance
Results
What did the adapted embedded qualitative method reveal?
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Conflicting emotions of acceptance and feelings of anxiety, anger and guilt
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Maintaining normality and retaining agency
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Tensions between retaining agency and overseeing/integrating support
Conflicting emotions of acceptance, anxiety, guilt and anger
Main theme | Subtheme |
---|---|
Acceptance | Acceptance of changes relating to dementia Empathy and respect for person with dementia |
Anxiety for the future | Anxiety about impact of changes due to dementia Guilt about not doing enough for person with dementia |
Anger | Anger/frustration at changes related to dementia |
If something arises that isn’t working very well I can usually think through, to make it better, and if not, I just say, oh well, there’s not much I can do about it (Participant 6)
The hardest thing now is she says to me, I don’t want to be a burden. And well, she used to say that to me. Now she’s saying, I know I’m a burden … And I go, but you’re not a burden (Participant 17)
I do feel guilty about work … it’s not just the pressure of work … it’s the guilt when I go … I go in my mum’s room every morning before I go and then I go straight in there when I come home … But I hate going … I hate that feeling (Participant 17).
I get to boiling point … when my mum is ringing up and … she’ll be wailing and crying. My hands are tied and there’s nothing more I can do…. You just want to explode at times. (Participant 12)
Maintaining normality and retaining agency
Main theme | Subtheme |
---|---|
Maintaining normality | Sustaining relationships, roles and social engagement |
Retaining agency | Participation in meaningful activity Promoting independence |
He kept going down to the kitchen asking me ‘what’s this?’ …. And I realised that I had to take a step back and buy things that he would recognise (Participant 15).
Tensions between retaining agency and overseeing/integrating support
Main theme | Subtheme |
---|---|
Maintaining control in the home | Taking the lead role in arranging formal care Reliable and trustworthy formal support |
Continuity of staff | |
Working in partnership with health and social care organisations and professionals | Coordinated support rather than fragmented support Compassionate support (sensitive, communicative, relational) |
Benefit of finding carers from own network | Neighbours and friends as carers |
Weekends can be a nightmare … on Sunday, for example … I wanted to go to church, um, and I waited and I waited. … rang and rang and rang, and … it was well after 10:00 (Participant 5).
I do get a little bit … angry with the care organisation when they send me different people in a week because it’s quite important that I am able to hand over. D needs the continuity, he needs to know who is coming (Participant 6).
It didn’t go too well with S because there was no response, there was nothing. But she (dietician) insisted on doing it (Participant 1).
He comes even when he doesn’t have, you know … Yeah, the chap’s all right. He does it beyond the call of duty, so to speak (Participant 3).
Strangely enough she was er, one of the children S used to cross as the lollipop lady so there’s that link. That’s why we use her here because, you know, S remembered her (Participant 1).