Insights from family carers and professionals on unintentional ‘carer harm’ in Ireland - with Sarah Donnelly

In this episode we hear from Sarah Donnelly as she discusses her work on unintentional ‘carer harm’ in Ireland.

You can read the paper here: https://academic.oup.com/bjsw/article/55/4/1695/7979369

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ExChange Wales: This episode contains descriptions of abuse. Listener discretion is advised.

Welcome to the Exchange Wales Podcast, a series that explores research and practice sharing, evidence, and care experience to build better social care in Wales and beyond.

Jeremy Dixon: Welcome to the Exchange Podcast. My name is Jeremy Dixon, and I'm really pleased to welcome Dr. Sarah Donnelly, who's going to be talking to us today. Sarah qualified as a social worker in 1998, and she's worked in a number of different areas, but has specialised particularly in working with older adults.

She completed a doctorate at Trinity College Dublin, and has been working at University College Dublin, since 2014. She's focused on a number of areas, but, today we're gonna be talking to her about the concept of carer harm. And I'm talking to Sarah particularly about an article which has been in the British Journal of Social Work, and is called Exploring Unintentional Carer Harm: Insights from Family Carers and Professionals, An Irish Case Study.

And this paper is led by Sarah, but also is co-written by Alisoun Milne, Marita O'Brien, Nikki Dunne, and Deirdre O'Donnell. So welcome, Sarah. 

Sarah Donnelly: Thank you very much, Jeremy, and thanks for the invite to, talk on today's podcast. I'm really looking forward to it. 

Jeremy Dixon: Great. So, we're here today to talk about a paper you've written about, the topic of carer harm.

First of all, I was just thinking that not all listeners might be familiar with this concept, so can you tell us what carer harm means? 

Sarah Donnelly: Yeah, look, that's a really good question, Jeremy, because I think generally the term isn't well recognised or understood. I suppose a very basic explanation of it would be carers that are harmed by the child or person or adult that they're providing care for.

But I suppose in terms of academic definitions, the seminal work done around care harm was by Dr. Louise Isham, from the University of Birmingham, and she defined it when carers are exposed to violence or subject to controlling or coercive behaviour, either on an incidental or systematic basis, resulting in physical, psychological, and/or sexual harm.

But I suppose there really is no universally agreed definition around care harm, and that's one of the challenges we face in this area of practice. 

Jeremy Dixon: And so do you think that the, the term, is mainly used within academia at the moment and, isn't recognised by, within practice so much? 

Sarah Donnelly: I think so, and I mean, even within academia, I wouldn't say it's widely recognised as yet.

I suppose the, the work that I've been doing and others is starting to, I suppose, raise awareness around it within the practitioner community. But I think it's still very, I suppose, under-recognised. And I suppose then has knock-on responses in terms of, um, practice responses and interventions.

Jeremy Dixon: Great. So you've carried out a study in Ireland so maybe just tell us a little bit about this study and how it came about. 

Sarah Donnelly: Yes. We carried, I carried out a very small-scale study in 2022-2023 in conjunction with Family Carers Ireland, which is our national advocacy organisation for family carers. We were very fortunate to get a small amount of funding from the Irish Research Council under their New Foundations Award, and I suppose I kind of fell into looking at the topic of care harm.

I certainly didn't set out to do that, but I suppose when this call came about, I engaged with Family Carers Ireland, and they kinda directed me to some previous research that they had done in 2019, where they surveyed 1,102 family carers, 44% of whom reported regularly experiencing physical and/or psychological and emotional abuse.

So that kind of put my alarm bells up a little bit in terms of this is an area of practice actually that hasn't been fully explored, and I suppose our original intention was just to carry out secondary data analysis of that original 2019 data set but then when we got into it, we realised actually we needed to do a little bit of empirical work as well, because there wasn't as much data there as we had thought.

Jeremy Dixon: And the, the 2019 data set that you mentioned, what was that exactly? 

Sarah Donnelly: Yeah, sorry. That was a national survey of family carers in Ireland, that really just looked at, I suppose, their physical and mental wellbeing, impacts of caregiving, and that was carried out by Family Carers Ireland, the Royal College of Psychiatrists in Ireland, and my good colleague, Dr.

Deirdre O'Donnell from UCD, Health Systems. So that was kind of an earlier survey that we then kind of built on in terms of the carer harm study. 

Jeremy Dixon: Sure. And in your British Journal of Social Work paper on carer harm, I think you suggest that i- in Ireland, that it appears that there's, quite a high level of informal caregiving, you know, or caring by families.

Can you just tell us a bit more about the Irish context and, and what those carers look like, and what the kind of level of caring is? 

Sarah Donnelly: Yeah, look, I suppose we don't have exact statistics. What we do, we've resent this data, but Carer Alliance Ireland, which would be one of our umbrella carer organisations, estimates that approximately 89.5% of all care in Ireland is provided by unpaid family caregivers.

Again, look, we've seen an increase in our census data, 53% increase in the numbers of family carers providing care between 2019 and 2022. It's estimated that approximately 14% of the population, or nearly 612,000 people, are providing care. 61% of them are women. I suppose the majority, the people providing the highest levels of care are those aged 50 to 59, and again, we're seeing significant increases in the numbers of care hours provided.

So for example, 29% of carers are providing care for 43 hours or more per week. I think the other important thing to mention is we know from our census data that nearly 70,000 children or young people, or what we might call young carers, are also providing care, and again, it's estimated that this is saving the state, the Irish state, approximately €22 billion per annum.

I suppose there is some context maybe important to mention in relation to this. In Ireland, while children a- and young adults with disabilities have a statutory entitlement to an assessment of need, they currently don't have a statutory entitlement to the fulfillment of the recommendations of that assessment of need.

Likewise, for older people or younger people with disabilities, they're entitled to nursing home or residential care under our nursing home support scheme, but there currently is no legal requirement to provide home care. So care is often discretionary. There's often a postcode lottery in terms of what people can access, so the care, health and social care environment is quite fragmented, quite complicated, and I would say, significantly under-resourced in terms of the needs of our family caregivers and people with care and support needs.

Jeremy Dixon: That's really, useful context, I think, and, I was wondering as you were saying that about what type of services are available to carers, 'cause this varies quite a lot across the UK. So if, somebody is caring for a child or an adult, are they entitled to services as a carer? 

Sarah Donnelly: Again, Jeremy, it's completely discretionary.

Currently, our family carers do not have a statutory entitlement to an assessment of need, so that's a huge barrier in terms of our starting point. I mean, there are discretionary supports available, like if the person or the child with care and support needs, needs physical, I suppose personal care, there can be care provided by home care packages.

There can be respite care. There are financial supports in terms of, but often they're means-tested. So again, I suppose i-it can be very depending on where you live and what the needs, what the support needs are of the person or child you're caring for. It can vary immensely what care and support you actually receive, and there's no guarantee, there's no kind of minimum amount.

Yeah. So it's really, really difficult for family carers, and often there's a huge, battle or people having to really strongly advocate for themselves to get any type of care or support. 

Jeremy Dixon: Okay. So, that's really useful background. And in your paper, you describe what you call as a case study, which is focused on Family Care Ireland and you've talked a bit about that organisation-

Sarah Donnelly: Yeah

Jeremy Dixon: ... already. But in the, the case study that you did, who did you focus on specifically? 

Sarah Donnelly: Yes, I suppose just I'll go back to, so I suppose what we originally intended looking at was doing a secondary data analysis of the 2019 survey. When we got into those qualitative responses and began to analyze them, what we quickly began to realise was that there was two main cohorts of family carers reporting harm by the person or child they were caring for.

That was carers of children and adults with autism and other complex health and support needs, and carers of people living with dementia. So for my care harm study, the case study, we decided to try and understand more about the experiences of those caregiver cohorts. So we carried out a number of narrative interviews and also focus groups with professionals.

I suppose from the outset, it's important to say, you know, we very much used a snowballing approach. It was incredibly difficult to get family carers to come forward to speak about their experiences. I think some of that was because the terminology carer harm, again, didn't really resonate for them.

Jeremy Dixon: Mm-hmm.

Sarah Donnelly: But I think for other carers, they were genuinely fearful about coming forward and opening up about their experiences. But we did manage to interview, four family carers of people living with dementia, and five family carers of children or adults with autism and other complex needs. In terms of our focus groups, we carried out focus groups with, case managers for Family Carers Ireland.

We had five of them. We had a dementia-specific focus group, which included a social worker, an occupational therapist, a dementia advisor, a clinical nurse specialist. And then for our, autism focus group, it was all social workers, but social workers from different areas of practice, so we had a social worker from child and adolescent mental health services, a disability social worker, a dementia social worker, and I think a primary care social worker.

So we got a good variety in terms of both the professional, I suppose, understandings, but also the lived experience via the narrative interviews. We also did interviews, sorry, with two autism educators and a Family Carers Ireland senior caseworker, I suppose to go a little bit deeper into some of those professional experiences.

Jeremy Dixon: Sure. And you, revealed some quite, important findings, and one of them relates to this issue about understanding care harm that we started off by talking about. So the professionals in your study describe some difficulties, using the term care harm. Can you say a bit about why that was? 

Sarah Donnelly: Yeah, look, again, I think as you kinda alluded to in the introduction, Jeremy, the term care harm isn't particularly well recognised or developed or theorised either in academic, I suppose, circles or indeed, for the professionals in practice.

So for some professionals, the terminology just didn't resonate with them. It wasn't something that they use in their everyday practice, so that was a little bit of a barrier. Even though when we actually explained what carer harm meant, professionals were very kind of, "Yes, w- we see this on a very regular basis.

It's something we really struggle with." I suppose likewise for the family carers themselves, the terminology didn't really resonate with them. For many of them, they were actually deeply uncomfortable with the terminology carer harm.

Jeremy Dixon: Mm.

Sarah Donnelly: I think particularly within the context of unintentional care harm, so for example, where the harm or violence or abuse was secondary to the person's presenting condition.

I suppose for our family carers, the other thing was even the term carer didn't always resonate with them.

Jeremy Dixon: Mm.

Sarah Donnelly: For many of the people we spoke to, they were a mum, they were a dad, they were a sister, they were a brother or a sister, so that term carer even didn't, I suppose, resonate automatically with some of the people we spoke to.

So I think there's a huge challenge there in terms of opening up conversations about care harm. A- and I suppose even at the end of the project, we still... W- we had a co-design element built into this project where we developed some information, raising awareness leaflets on best practice considerations.

But even with the co-design phase, people, we could not get consensus around the terminology. And we really concluded that w- we couldn't conclude what the best terminology for this type of harm was.

Jeremy Dixon: So that's interesting. So when, you were talking to professionals, you said that they kind of got why it was important and saw the logic for it.

But I wonder if they were framing it in an alternative way, were they kind of seeing it as a different type of problem or describing it differently? 

Sarah Donnelly: Yeah, look, I think, you know, I suppose for me, care harm is kind of that intersection between abuse, child welfare and protection, domestic abuse, adult safeguarding so, it kind of intersects a number of areas of practice. And I suppose people maybe generally viewed it maybe more as linked to care. You know, historically, they would be more used to dealing with this type of harm within the context of caregivers maybe exhibiting harmful behaviour-

Jeremy Dixon: Mm

Sarah Donnelly: ... towards the person they're caring for within the context of caregiver stress and burnout.

But this kind of reverse lens or the issue of bidirectional harm, they hadn't really, I suppose, formally engaged with or articulated that within the practices. And again, this was very much reflected in the lack of care pathways and practice responses to the professionals we spoke to. 

Jeremy Dixon: Sure. So maybe it's the case that people didn't have a language for it because they- 

Sarah Donnelly: Yeah

Jeremy Dixon: they tend to see, as, for example, the issue of carers possibly harming service users, or, or the people that they're caring for, you know, as this kind of safeguarding concern or those kind of ways of framing things and not- The, the person themselves perhaps harming the carer. And w-with the carers, you were saying that they often didn't sort of describe themselves as carers, they described themselves as a relative or, or something along those lines.

So in terms of the bit about the harm, were they kind of, able to identify harm to themselves from having that relationship, even if they didn't maybe identify themselves as being a good carer per se? 

Sarah Donnelly: Yeah, look, again, that's a really good question, Jeremy. I think some of them did, but some of them didn't necessarily recognise the behaviours as harmful.

They just saw as, I suppose, secondary to that person's presenting health or social care needs. And I suppose the other kind of major barrier to them engaging with the term or the topic was it was very much kind of perceived as sensitive or taboo. Carers often felt guilty, embarrassed, or disloyal in relation to the person they or child they were providing care for.

I think some of the kind of stigma around this topic also relates to the very private nature of abuse within the family home. You know, this very much takes place behind closed doors, and I think maybe particularly in Ireland, the family's so strongly enshrined in their constitution that there is very much that kind of protect...

It's seen as very much a protected private space, which again, I think it very much acted as a barrier. But I think also for some of the family carers, it was seen, they felt that if they talked about carer harm, it was either seen as an indication that they were failing to cope- 

Jeremy Dixon: Mm ... 

Sarah Donnelly: with their relative or their child's care needs, or, I mean, they had very real and valid fears about unwanted or unwelcome either care or criminal interventions stemming from disclosing about the harm that they might be experiencing, or indeed other family members in the family home were experiencing.

Jeremy Dixon: Sure. Okay. So there's, there was, as you mentioned, stigma ar-around harm, and I think you also mentioned guilt in the paper 

as well, that pe-people sometimes felt guilty. 

Sarah Donnelly: Yeah. They really felt guilty or disloyal, and as, as I said, I think that was particularly pronounced within my study because, you know, my, my... our sense and our analysis was all of the behaviours, the harmful behaviours experienced were very much unintentional, as I said, and secondary to the person's autism and other care needs, or the person with dementias presenting behaviours. So that guilt about being disloyal, or as particularly within the context where the person was not consciously or intentionally trying to harm them or their family members w-was very problematic for them.

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Jeremy Dixon: So in the paper, although I think we've discussed this issue of harm and how people, sometimes struggle to identify it.

But I think once you got talking to people, they were able to describe some quite harrowing issues of harm to themselves. Can you say a little bit about what, what types of harm people were describing? So, it might be easier if we can split it to the two groups that you've been talking about. So in the case of, carers of children with autism, what kind of harms were experienced in those case by carers?

Sarah Donnelly: Yeah, and look, I mean, it was interesting that the family carer narratives and those of the professionals very much aligned in terms of their articulation of the types of harms being experienced. So for the carers of the children or adults with autism and other complex needs, it was very much around physical violence, physical violence targeted particularly at mums, but also at younger siblings in the family, but also verbal abuse, psychological abuse.

But I think maybe most notably for that cohort was the whole issue of damage and destruction of either personal goods or indeed the family home. So we had several of our family carers talk about the young person with autism and other complex needs, you know, destroying television sets, breaking mirrors, destroying rooms in the house, with, I suppose, huge knock-on, I suppose, psychological distress for the family members witnessing this.

Sometimes they actually injured themselves, within the course of these, behaviours, but also the huge financial impacts of, for the families of having to constantly replace furniture, TVs, windows, whatever that might be. So as you say, it was... some of these accounts were extremely harrowing. And for me, you know, I've... okay, I've been in academia for about 10 years, but it was unquestionably the most distressing, upsetting piece of research I've ever done. And I suppose I kind of, underestimate the impact on myself as a researcher in terms of, but also for the carers disclosing this, because for some of them, they'd never actually, it was the first time they'd kind of spoken openly about the harm they were experiencing.

For the people with dementia, the harm was a little bit different. It was more around less destruction of the family home and more kind of verbal or, outbursts, but also some physical outbursts in terms of physical aggression-

Jeremy Dixon: Mm-hmm

Sarah Donnelly: ... secondary to their presenting dementia. But again, you know, the family carers were really clear this was an articulation of unmet needs or sometimes, you know, there was kind of suggestion that when the person living with dementia developed more intimate care needs, that this could often be a trigger for some of those behaviours.

And again, some of our professionals, but we didn't get into this more, I think there's another study here did talk about also unwanted kind of sexual harm between dementia, partners-

Jeremy Dixon: Mm-hmm

Sarah Donnelly: ... and that this was kind of a new emerging area of practice that again, they really struggled with. I think the other thing that I recollect, from those interviews and focus groups was professionals talking about how long it took for carers to open up about the harm that they were experiencing.

So one of our dementia focus group members talked about it take people on average up to six to eight weeks where they were attending a dementia support group to actually feel comfortable to open up about their harmful experiences. 

Jeremy Dixon: Yeah. Yeah. And related to that, I guess, is the issue of kind of service responses.

So that was one of the key themes. So what were both professionals and carers saying about the kind of services which were offered to carers? I mean, you've talked about some of the problems earlier on actually, but, what was the perceptions of your research participants? 

Sarah Donnelly: Yeah, look, I suppose again, for the two cohorts, there were very different kind of trajectories and narratives.

For the carers of the autism, particularly the, the children, there... You know, some of the problems kind of went way back to issues around... not issues, but I suppose delays in diagnosis. So often there was a long delay or inability to get a formal diagnosis of the child's presenting behaviours. Many of the families had to resort to paying privately for that, and then they then had the challenge of kind of getting, linked in with services, trying to access appropriate schooling.

Often, this was a major barrier, never to mention kind of basic support needs. I suppose for me, again, for the dementia cohort, the whole issue of early diagnosis was recognised as very important, but often it didn't happen. So for both cohorts, frequently care and support wasn't offered until things were in crisis situation, and a life-threatening situation for some.

And even in those circumstances, sometimes care, was not available or the care that was offered was not seen as helpful. I suppose the other thing that was quite striking for me was that both cohorts of family carers really talked about having to fight and beg for help, really feeling like they were undeserving.

And again, some of the narratives from the health and social care providers was, you know, very much around, "Well, there's people much worse than you out there." You know, so people really being made to feel undeserving around asking for help, and I suppose just that expectation that they were expected to cope with huge amounts of care in situations where paid formal caregivers never would be expected to care.

And again, we kind of had a really striking example of one of our dementia carers, Mairead, who cared for her dad. Her dad needed two for all activities of daily living. They did have a home care package. They were lucky, but on one day, her dad kind of lashed out against the formal paid carers.

This resulted in all care being immediately withdrawn, leaving Mairead and her 80-year-old mother to provide care for her dad, who needed two for transfers, for all activities of daily living.

Jeremy Dixon: Mm.

Sarah Donnelly: Not only did that happen, but behaviour was also criminalised, and a report was sent to the Gardaí or the police in terms of what the formal care providers deemed to be a physical assault.

So this whole issue of double standards between unpaid carers and paid carers was really, really pronounced but I suppose on the flip side, professionals also expressed huge feelings of helplessness and frustration that even in those kind of life-threatening situations, they couldn't access emergency respite.

Often it was still very difficult to get, home care. And in many situations, particularly with the autism cohort, what would happen is that the child would have to be taken to a place of safety, such as an acute hospital, which was really the only thing available. We also saw other very unhelpful responses such as one of our autism carers talked about, you know, they talked about the need to develop safety plans in the same way that you would in domestic violence situations.

And one mum actually reported herself to the Child and Family Agency because she really felt she could not protect the younger children in the family home. She had a three-year-old daughter who she was particularly concerned about. And the Tusla, or Child and Family Agency's response at that time was to offer to remove the two children who weren't exhibiting harmful behaviour and to place them in foster care with the expectation that mum would continue to care for her child who was presenting the very harmful, violent behaviour.

So some of those practice responses were incredibly unhelpful and unwelcome. But also, even when there was concrete supports provided, often that was at a very, very late stage or too late a stage to make any meaningful difference. 

Jeremy Dixon: Sure. So quite unhelpful practices, as you've mentioned. I mean, just thinking through that and thinking what changes could be made, how could things be made better did participants think?

I mean, what were, what were your kind of conclusions about how practice might be improved?

Sarah Donnelly: Mm.

Jeremy Dixon: I mean, maybe if we start with the issue of the kind of terminological challenges, so that's something you raised in your paper and we've talked about throughout. So is there a way of maybe alerting people to the, you know, the issue of carer harm and then asking those questions just as a way of highlighting the issue?

Would that help, be helpful, do you think? 

Sarah Donnelly: I, I think so. And look, we have done a huge amount of dissemination post this project on both at the national and international level, and really the intention of that is to try and raise awareness, Jeremy. Like, we've been fortunate in that both Family Carers Ireland and Eurocarers have, you know, have all of the information leaflets and their best practice considerations on their websites.

And we've also had engagement with actually the Welsh Government on gender and sexual-based violence, older person stream, who really recognise this as an issue that is impacting on older people and older carers, and we'd an opportunity to present to them some of our findings. And again, they kind of recognise the importance of embedding this in their policy going forward.

But I suppose at the practitioner level, yes, we've tried to raise awareness with practitioner communities, with service providers, and that's largely been through kinda webinars, presenting at conferences, but as I said, also those information leaflets and best practice considerations. And I think really the onus is on the professionals to start to open up these conversations, to start to use this language, and to start to empower carers to feel safe and comfortable opening up about the harmful experiences that they're, yeah, embedded in.

Jeremy Dixon: And, one of the things you mentioned earlier on i- is that carers don't always recognise themselves as with that label, if you like. That they might just see themselves as a family member. Is there ways of getting that information out to the general population in a way that would be helpful, do you think?

'Cause, I, I mean, there's particular findings which were quite striking. I think you mentioned that there was high risks to women particularly that you- you noted through your research. So how might that information be got out to people in a way that would be helpful, do you think? 

Sarah Donnelly: Yeah, look, I think, you know, ideally there would be some kind of public awareness campaign in the same, that way that we have for domestic violence or child abuse, so that we are heightening awareness at the level of the general public, so that people understand that the behaviours they're experiencing are not normal, that they are harmful, and that they should be getting care and support in this context.

So I suppose there's a role for our governments, for our policymakers, but also for NGOs, for charities, in terms of trying to heighten this awareness as well within the caregiving community. 

Jeremy Dixon: And just one last point about policy. You know, professionals, I think sometimes get quite frustrated because th- they're, they're working in quite a pressurized environment.

Sarah Donnelly: Mm. 

Jeremy Dixon: And what, what could be done within policy, do you think, to make things better in this respect? I mean, obviously there's always pressures on resources, but are there particular things that could be targeted to help carers in this respect? 

Sarah Donnelly: Yeah, no, absolutely, Jeremy. And look, I suppose on the policy issue, I suppose I've tried to take this a step further in terms of, I've set up what we're calling our Five Nations Working Group, which is a group of academics from across the five nations of the British Isles, where we've kind of come together.

We're in the middle of... not in the middle, we're nearly finished a policy analysis of health and social care policy, domestic abuse policy, and the adult safeguarding policy, because really we wanted to try and highlight and it's coming through very clearly, we've used an ethics of care, kind of analysis lens to really show that none of the policies in the five jurisdictions is really capturing this issue of carer harm, and essentially it's really falling through the cracks in terms of that policy focus.

So I suppose we hope... we're just about to submit a paper on this, and we're hoping again that will help to raise awareness, or give us, I suppose, some evidence and leverage to engage with our policymakers around making concrete, meaningful changes to policy that will actually capture this phenomena.

Because at the moment it's, as I said, it's very much falling through the cracks. 

Jeremy Dixon: So that's really great work that you've been doing, across the five nations. What would your aim be in the longer term, do you think? What would you really hope to achieve from that? 

Sarah Donnelly: I think obviously the awareness raising issue, Jeremy, as we've talked about, but I think also the importance of a range of intersecting enforceable legal rights would help to ensure the carers are better protected.

So firstly, a statutory entitlement to services for both the carer and the person with care and support needs, a legal right for carers to be protected from harm. Paid carers are currently protected, but unpaid carers are not. And for me as well, I think it's very, critical that we consider care harm as of equal importance to other types of harm and violence such as domestic abuse or child harm or adult abuse.

So it's really, I suppose, giving it equal importance to those other types of harm that are very much recognised. 

Jeremy Dixon: Brilliant. Well, thanks ever so much for your time, Sarah. That's really good, and, really great work, and really interesting findings. And the paper, that we've been talking about is free to access, and we'll put a link in the descriptors so people can have a read of it as well.

So thank you ever so much for your time, and great to speak to you. 

Sarah Donnelly: Brilliant. Thanks so much, Jeremy. 

ExChange Wales: Thank you for tuning in to this episode of the Exchange Wales Podcast. At Exchange Wales, we connect researchers, practitioners, and people with lived experience to share evidence, practice, and insights that shape social care.

Our work spans children's and adult social care, and we're also exploring the growing role of artificial intelligence in the sector. If you'd like to learn more or get involved, please visit exchangewales.org.