Monique Lhussier
12th July 2017

Undertaking sensitive research with frail older people

We are currently preparing a bid for research funding to further understand how and why a Community Wellness Team for frail older people (over 75 years) in the North East of England has reduced use of secondary care services, such as avoidable hospital admissions and attendance at A&E.

Through understanding this, we can share the learning to improve care of older people across the North East in their own home and reduce avoidable secondary care costs. We currently plan to collect data on hospital admissions, and speak to GP practice staff, their funders, and older people and their informal carers. 

We would like your opinions on:

-      How we involve frail older people, who often have multiple health issues and other problems, in our research, in the most sensitive and appropriate way?

-      Whether you think there will be any issues in us talking to older people's carers (in terms of confidentiality etc...)? How do we keep any such issues to a minimum?

-      Are there issues that we may not have thought of in terms of people's wishes on where they live and how they're cared for in their latter years?

-      Although they may have an impact on older people's ability to stay at home, we currently haven't involved care agencies in our research. Do you think we should? Are there any other groups or services that you think we should speak to? 

We look forward to hearing your thoughts.

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What Do You Think?

Discussion

  • Janet Grime
    18th July 2017

    I have two preliminary observations on the task in hand. Firstly, in relation to ‘sensitive’ research; a training session in ethics for qualitative researchers, which I attended many years ago, started with two statements:

    No topic is too sensitive

    All topics are too sensitive

    The point the ethicist was making is that research cannot be categorised a priori into sensitive and non-sensitive. Yes, it is necessary to think of potential ethical issues before doing research, but that reflection should continue throughout the project since it is not possible to know what will emerge while doing the research.

    My second observation concerns frailty, which is a contested concept. From a biomedical perspective frailty is conceptualised as physical weakness and functional decline and the consequent risks these bring, which, implicitly, is quite a negative view of ageing. The possibility of mental strength and a strong spirit risk being overlooked. For me the first ethical task would be researchers becoming aware of their own perceptions and assumptions about frailty and ageing. I strongly endorse Violet’s point.

    • So in your first question I would remove ‘frail older’ and ‘other problems’ and ask; How we involve people who have multiple health issues in our research? It seems you are planning to interview them. Looking at your response to Violet, you will need to get informed consent. Being a total stranger can be an advantage as a respondent may be unwilling to be frank about some experiences with someone they know and makes confidentiality tricky. Not all will accept the invitation to take part. Having older people review the participant information sheet or be involved in writing it in the first place, is sound. You will need to take your research to a Research Ethics Committee I would have thought, and they will have requirements of what to include in the PIS.

    • In your second question you have not made it clear what the objective is in talking to older people’s carers. If it is to check the veracity of the older person’s account this would be inappropriate. But if it is to get their experiences (the carer of course could be the same age or older than the person they care for) on being a carer that is fine. Confidentiality issues cut both ways and both cared for and carer need to be told of how you will maintain confidentiality. The carers and cared for may want to be interviewed together.

    • The third question is tricky because your cared for respondents may in practice feel they have little choice. What comes to mind is a man I interviewed a few years ago who lived alone and in a reclining chair in his home. He could just make it to the toilet and back with a great struggle. He had paid carers twice daily but even so his daughter’s daily visit was instrumental in enabling him to live at home. The latter is what he wanted to do but had begun to think that this was unfair on his daughter and as much as he hated the idea of going into a home he accepted it would have to be. But you don’t need to identify all the issues in advance if you adopt a semi structured interview approach. You could ask a general question about if they could have their time over again would they have done things differently.

    • I think care agencies should be involved along the same lines as the carers. The focus appears to be very much on physical tending ; companionship and sociability are important too, especially so if you cannot get out unaided and live alone. Perhaps approach charities such as Age Concern, Independent Age or RVS about the services they provide for socialising.

    Monique Lhussier
    19th July 2017

    Dear Janet,

    Thank you for such a detailed and thought through comment. I seem to have done the same as you – spent 30 mins replying and then lost it all! So here we go (again)…

    - You are making me think about the way in which we write things, which is, as it turns out, quite clumsy. We didn’t mean that the research in itself was sensitive (though I appreciate your point, it may turn out to be), but rather that we were seeking views on how to engage older people in the most sensitive way. Thinking through the potential advantages or issues with engaging carers is part of this, but we will, of course, obtain all necessary ethical approvals before approaching anyone.

    - Frailty is an interesting issue, but not one with which we will engage on a conceptual level. It happens to be one of the criteria the team uses to include people in the service, and we need to speak to service users. Point absolutely taken about how we write about this though, so that it doesn’t come across as judgmental or restrictive. There may not even be a need to mention it; we simply want to understand the views of the people who are using this particular service.

    - Following our discussions so far, the point of including carers is two folds: a) to gain an understanding of the views of people who may not, otherwise, be able to participate in the study (because they lack the capacity or are going through an episode of poor health for example); b) to understand the impact of the service on the carers themselves. Thinking about everything that has been said so far, I think we will identify people who use the service and invite them to take part in the study. We will then ask them whether they would want to be interviewed in the presence of a carer and whether they would mind us talking to their carer about their own experiences. We will follow people’s lead as to who they consider a carer (any person whose help or presence is important) so that we are not missing out on, say, neighbours.

    - In order to access carers as a separate group, we may for example put some adverts in GP surgeries. That way carers could chose to participate independently of the person… this might still be ethically tricky though, and we may need to think it through some more as inevitably we would be talking about someone who is not present and who would not have consented… on the other hand not including these carers would negate their own specific needs (not only in relation to the person), which is all too often an issue. It is not uncommon to see older people needing extra help at home or to move to some alternative accommodation, not because of their own needs, but because their main carer can no longer be as available for whatever reason (as you identify above). Any further thoughts / guidance on this would be much appreciated.

    - It is true that often people have little choice as to where / how they are being cared for. However it is important that a right balance between physical needs (as perceived by health services) and wishes of the person is talked through and reached. It is this talking through that perhaps is important. I can think of a participant in a previous study whose house was identified as full of hazards by health practitioners, who were trying to convince that person to go to a care home after her other half had passed away. However, she was partially sighted, and she knew her way around her house really well; she felt that going anywhere else would limit her independence. She had full capacity and refused to move, which I totally emphasise with, but she didn’t feel that the health services understood her viewpoint. This is the kind of things that the community wellbeing team is trying to do.

    - I really appreciate your comment about social isolation. The community wellbeing team thinks that part of their success is linked to the fact that they are addressing some of this. So for example, they have been known, when the main carer is on holiday, to ring the person or call for an extra visit to make sure everything is ok. This bring peace of mind to everyone and seems to have led to a reduction in emergency calls. This also links to the need to consider service users not just as ‘frail’, but as living symbiotically with their social environment. What I mean by that is that the carers / friends / relatives and the person depend on each other for wellbeing, and considering the need of one without the other as if often done is insufficient…. Hence my keenness to engage with carers in the research, but wanting to do it as sensitively as possible.

  • Janet Grime
    18th July 2017

    Hi Monique

    I posted a comment last night. Did you receive it?

    Janet Grime

    Monique Lhussier
    18th July 2017

    Hello Janet, sorry I didn't receive anything; would you be able to re post it? Thank you, Monique

    Janet Grime
    18th July 2017

    OK. I won't be able to do it until tonight though.

  • Violet  Rook
    17th July 2017

    Most individuals are very protective of their independence, even though they maybe be getting frail. It is therefore important to respect that aspect of their personality. Even though they maybe 80 plus, their individuality and the need to be considered as a person is vital to their physical and mental health.

    I have relatives who are in that age range and I am aware that this is a topic which needs to be considered in regard to gaining trust. When individuals have become frail due to strokes or any other serious illness they may depend on relatives and professionals for help with daily living but their sense of self is vital to them.

    Monique Lhussier
    18th July 2017

    Thank you Violet. I totally agree. In fact, we've already found out that the Community Wellbeing Team workers often build trust quickly because their very purpose is to keep people as independent as possible, for as long as possible. In terms of research, I suppose the fact that we are genuinely interested in the person's view is in and of itself respectful of their sense of independence. By the same token, I am conscious and concerned that they may not want to speak to a researcher who will be a total stranger to them (I know my grandmother would have been reluctant!). We will ask older people to review our information sheet, to make sure it is clear and inviting; but is there anything else we could do?

  • Robert Davidson
    16th July 2017

    In the age range (I am 86) but not frail, I have been thinking over the last few days about friends and acquaintances who could be described as frail.

    Most are frail due to strokes, dementia and Parkinsons but in the main are stubborn and have the "just get on with it" attitude possibly because of having lived through the War. This can make it difficult for them to accept help which is all the more reason we should encourage all their contacts, Professional, other contacts and friends to get involved. After all this would be for the benefit of the frail person.

    Monique Lhussier
    17th July 2017

    Thank you Robert. This is very much our experience so far; people are incredibly resilient and often reluctant to 'bother the doctor', even when they might benefit. In the little study we have conducted so far, we asked them questions through the community wellbeing team. That mean that they were already familiar with the person, and (we hoped) caused minimal disruption. However, from a research point of view this is problematic as it's not independent of the service. We will definitely take on board the suggestions to engage with all the formal and informal contacts surrounding a person so we can understand their point of view. Many thanks.

  • David Stewart-David
    13th July 2017

    Although I am 76, I would not describe myself as frail. I am writing in relation to my aunt, aged 90, who lives alone in a detached cottage in South Lincolnshire. She is widowed and has vascular dementia. She has no children, but has a niece who lives 12 miles away. When she first lost capacity to care for herself (age 86) she was attended by carers from an outsourced company employed by Lincolnshire County Council. Their care was negligent and frequently their attendance did not match that recorded. When I made a visit (I live 200 miles distant) I found that the kitchen floor was filthy and that the plumbing did not work. I arranged for a plumber to repair the toilet and shower and negotiated with the lady's niece that I would manage a bank account topped up by standing order from my aunt's considerable (£80k plus) liquid assets. After some months I also found a competent home care company that attended to my aunt's needs reliably at a cost of more than £1000 per month. My aunt still has bouts of confusion when she has on six occasions phoned for the ambulance service or the police - essentially because she is alone and fearful.

    The explanation I have just offered indicates two of the ways research might be done, i.e. by asking relatives or neighbours and/or by asking professional carers where good supervision applies. I suspect that some care agencies are cheap alternatives to council provided services.

    Monique Lhussier
    13th July 2017

    Many Thanks for this detailed reply; it is very useful to hear about the circumstances surrounding your aunt's care. Rather than engage with care services, we could perhaps focus on service users themselves, their informal carers (family or neighbours) and the statutory services with whom we are working very closely. You are also raising an interesting issue with regards to capacity to make decisions about taking part in research. We might have been reluctant to include people who lack capacity (such as your aunt), but a way around this might be to invite carers in their own right, as it would be helpful to understand how care has worked (or not), for people who may not be able to articulate it themselves. It might also help us understand the impact of the service beyond the person, on their close ones.

    This helps us think through who we invite to take part in the study, and how we go about it, so your comment is very appreciated; many thanks.

    Just to clarify, we didn't mean that all people over 75 are frail; but that all people targeted bu the service are over 75, as well as identified as frail by their GP. Apologies for the lack of clarity!

    Christine Burridge
    14th July 2017

    David has given a useful account of one individuals care, well done. I agree with what he says about asking family and other relatives, may I also reinforce the informal carers such as neighbours and good friends. I have watched a near neighbour, an 86 year old widow, go downhill this year. She is fiercely independent although becoming more and more dependant. One problem is that she uses homeopathic medicine, and although she is registered with a GP has consulted only once in recent years - for a sprained ankle. I am not sure if she has had any reviews by practice staff, nurses etc., and I am sure she would refuse social services. She has no family and minimal close friends and certainly nobody that visits regularly except for one lady who shops, brings tasty food, takes laundry, washes dishes etc on an informal basis. She does pay for a cleaner who also does some shopping. All of this followed a winter fall which affected confidence and led to less and less social activity and interaction until she rarely leaves the house. Those of us that help do so in many small ways but there is a lack of coordination as e.g. helpers buy food as requested, and other helpers dispose of food waste as necessary. My comment is that this lady would not be targeted as she is not really on the care radar yet, but may well be before too long. She has decision making capacity currently but I'm not sure how long this will remain.

    Monique Lhussier
    15th July 2017

    We will make sure we include the views of informal carers, both as nominated by the older people themselves, and in their own rights. I am wondering whether adverts placed in GP surgeries might help us reach the carers of people who either lack the capacity to participate themselves, or like this lady, who might not be on the radar of more formal services?

    Having worked with the community wellbeing team for some time, I think that the lady you describe, Christine, would very likely be on their caseload. I will double check their criteria, but I think a previous fall and her age, even if she has no other obvious health issues, would have flagged her up. Their interventions range from very low key, i.e. A friendly phone call or visit to build a relationship, to involving any service needed, including the council (for example with regards to loft insulation, or bin collection), social services or health services, if it is needed and wanted by the person. It is this very wide preventative remit that I find very interesting, and would love to be able to demonstrate how it impacts on the need to use the NHS, or someone's ability to stay at home healthier for longer.

    I imagine people such as this lady, who have and want little to do with formal services, might also be reluctant to speak to researchers... would you have any views on how best to approach them?

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