Impact of the COVID-19 pandemic on family carers of those with profound and multiple intellectual disabilities: perspectives from UK and Irish Non-Governmental Organisations | BMC Public Health

Design

This manuscript describes the first phase of data collection in a larger study intended to explore the experiences of family carers of people with PMID and develop a programme to ameliorate the impact of the COVID-19 pandemic. These findings describe the views of NGOW who provided support for these families during the pandemic. Employing a qualitative design allowed us to explore the experiences of NGOW during the pandemic and gain their perspectives on how the pandemic affected their clients.

Participants

Twenty-four participants took part in five focus groups [33] across the four countries of the UK and The Republic of Ireland. Five NGOs took part in total. Participants were recruited from NGOs who provided support to family carers and comprised 20 females and 4 male members of staff. Five members of staff were also self-advocates meaning that they were also carers of a family member with an intellectual disability. Three of the NGOs had a regional remit whilst two were national. The characteristics of study participants are shown in Table 1.

Table 1 Demographic details of study participants

Data collection

Five focus groups were held between September and December 2021. Non-Governmental Organisations who provided care to families of individuals with intellectual disabilities were invited to take part. We sought the views of those with a client facing role and employed convenience sampling for the purpose of recruitment. Letters of invitation were emailed to eligible staff (those with a client facing remit) by a gatekeeper in their organisation, followed by a participant information sheet approximately one week later. Those who expressed an interest in participating in the study shared their details with the gatekeeper who arranged a suitable time for the focus group to take place. Focus groups were conducted using an online platform with discussions recorded for later transcription and analysis. Focus group discussions lasted between 60 and 90 min. The focus group guide is included in Table 2. Informed consent and basic demographic details were gathered by means of an online questionnaire.

Table 2 Focus group guide

Ethical considerations

Ethical approval was granted by the Faculty of Medicine Health and Life Sciences ethics review board (Ref: MHLS 21_38) at the Queen’s University of Belfast. Participants were required to provide written consent prior to participation and were fully informed of their right to withdraw, the limits of confidentiality and data protection. All procedures were conducted in accordance with the Declaration of Helsinki.

Data analysis

The six stage process of thematic analysis [34] was employed to capture important features of the data in relation to the research questions. Themes were inductively developed and represent major motifs across the data.

Rigour

To ensure rigour, the research protocol was first reviewed by two independent researchers as part of our application for ethical approval. The same researcher (TF) conducted all of the focus groups with recordings transcribed verbatim to ensure accurate accounts of participants’ views were captured. The researcher was an experienced psychologist with over twenty-one years familiarity with qualitative methods. Credibility of the analysis was achieved through triangulation by two members of the research team with direct quotations presented below to demonstrate confirmability.

Findings

Thematic analysis resulted in four primary themes and three subthemes which are summarised in Fig. 1 and explained below.

Fig. 1
figure 1

Summary diagram of themes

Mental and emotional health

I think families were scared and then confused and I think they have went through different stages of emotions since then, stages of grief and there has been different stages throughout the pandemic. There has been anger, frustration and a lot of negative emotion. [Female, NGOW, 45-54 years old]

The pandemic was a highly emotive time for all and one of the main themes to emerge from the focus group interviews related to the impact of the pandemic on people’s mental health and emotional well-being; both family carers and the individuals they have been caring for, in addition to that of staff within the NGO sector. This theme was apparent in all of the focus groups and incorporated a broad range of ways in which people’s mental health had been impacted, for example, loneliness, fear, anxiety and uncertainty. These subthemes are presented in Sects. 1.1 – 1.4.

One participant commented on the impact of lockdown on their own mental health, and that of their team:

I’ve really struggled with my mental health throughout lockdown like all of us have in different ways and there is not one of us that hasn’t been in tears in a meeting [Female, NGOW, 45-54 years old]

Concern about the pandemic having a negative impact on mental health largely focused on that of family carers and those individuals they were caring for.

We were really worried about people, some of our advocate team, we were seriously worried about what was happening to their mental health because of what was going on. I think mental health was definitely one of the worst things. [Female, NGOW, 45-54 years old]

A participant in another focus group reflected on how successive events in family carers lives meant that there was a cumulative negative effect on their mental health:

I think you could also look at all of our family carers as having gone through multiple experiences of trauma because it’s just been horrendous [Female, NGOW, 55-64 years old]

However, there was an element of hope from some of the NGOW who felt that, while they had gone through difficult times, they also felt supported by their colleagues and were thankful for them.

We have all cried, self-advocates have cried and we have had carers or family members in tears and it’s trying to just say we are all going to get there, you are not alone, we are all in this together, which is great for our team. [Female, NGOW, 45-54 years old]

Concern for the long-term impact of the pandemic on family carers’ mental health and that of their family members was evident:

These people need the help, these people are in crisis and I feel like I have been alongside my friends and they are on their knees. They are coping, some of them aren’t coping and it’s really, really tough and there doesn’t seem to be a light at the end of the tunnel and the support still isn’t coming. [Female, self-advocate, 35-44 years old]

Non-Governmental Organisation Workers, who were also family carers or self-advocates, described the impact of lockdown restrictions on the mental health of family members with learning disabilities. This was often discussed to the exclusion of the impact of the pandemic on their own mental health. One self-advocate said:

I think for me I suppose it reminded me we talk through our anxieties, our losses and our despair at lockdowns and what is happening. She was quietly experiencing all of those emotions, and that loss and not saying very much but it was very real. [Female, self-advocate, 55-64 years old]

Participants highlighted that while some people with PMID may not be able to fully communicate their needs it did not mean that they had not been emotionally and psychologically impacted by the pandemic. Some self-advocates described how their family members’ behaviour had changed as a result of stress brought on by lockdown restrictions. For example:

He [my son] was actually showing a lot of signs of stress by then… …[My son] was an extremely easy going guy, never had any behavioural issues with him in the sense of being aggressive or anything like that. If the staff took him out in the car just to have his hour out or they took him out in the wheelchair for an hour, when they came back and they were trying to get him back indoors he was kicking them, he was punching, he was trying to close the car door. There were all sorts of reactions that were saying he didn’t want to go back in, he was happy being out-and-about and that was so unlike him. [Female, self-advocate, 65+ years old]

Isolation

Isolation is often an issue for families of people with more severe intellectual disabilities or PMID, with the pandemic exacerbating this. Families had many of the services and supports they regularly relied upon removed, leaving them feeling powerless and alone:

It’s an isolated group that we work with anyway but when services stopped for them a lot of folk withdrew their children before the schools finished and services began to stop. [Female, NGOW, 45-54 years old]

It’s like we said they are very isolated and particularly when they have young children, normally parents meet at activity clubs and school gates and our families don’t have that. Also with family carers, one in particular I remember her son like a lot of people with PMID is non-verbal and she has a small circle of family. During the pandemic, she can speak to her son but her son can’t speak back to her and so she is having no communication at all, that would be something if there was somebody to chat to. [Male, NGOW, 25-34 years old]

Fear of COVID-19

While there was clearly a certain amount of fear among the general population regarding COVID-19, this was exacerbated by the increased vulnerability among those with learning disabilities, as exemplified by the following quotes:

We were also scared of taking Covid to a family. So, if you did have to meet them you worried about touching anything and all the extra things, you thought what if somebody comes down with it and I’ve been the person that has taken it there. [Female, NGOW, 55-64 years old]

Just from myself I know at the very beginning I had a massive fear that my daughter would get sick and have to go into hospital, and I wouldn’t be there. As a parent you spend your entire life interpreting your child for other people and helping them to communicate and be understood themselves. I was in absolute dread that if she got sick and had to go to the hospital, I had visions of myself storming the hospital to try and get into her. [Female, self-advocate, 35-44 years old]

The exhaustion of caring

Exhaustion was a common subtheme expressed by both the self-advocates and NGOW. Family carers were left to cope without the support of day centres, family, friends and with the removal of social care packages. Many faced a disproportionate burden of care leading to increased stress and depression [1, 13].

Many families had some support but most of them didn’t have the support they really needed and they were already at exhaustion stage prior to the pandemic coming in. [Female, NGOW, 55-64 years old]

It’s like when you are in the middle of a crisis you keep going because you have to keep going and then when the crisis starts to subside you start to let out stuff that you have been holding in for a long time. I think we are coming to that phase with staff who are absolutely worn out and fatigued. [Female, self-advocate, 35-44 years old]

“They who shout the loudest”

A recurring theme across the data was how many family carers had to fight for ‘basic’ needs to be met and to have necessary supports provided. There was a feeling among those participants who were self-advocates that they had a black mark against their name. They felt that they had to battle and argue for so long and with such force that service providers were likely to have ‘marked their cards’, meaning that those in positions of authority disapproved of them. One NGO sector participant said:

They had to fight really hard to have the support put in place and it was all taken away from them [at the start of the pandemic]. [Female, NGOW, 45-54 years old]

Another member of staff emphasised how necessary it was for family carers to equip themselves with the necessary knowledge to, in a sense, campaign and ‘fight the system’ to have some of their needs met:

The thing that we have always seen is that when parents are able to kick up a fuss, in the nicest possible way, and are informed with the right information then that is game changing… …You shouldn’t have to feel like you are battling against the system every time you want something done that you are well within your rights to do. [Male, NGOW, 25-34 years old]

It seemed that family carers who had the ability, strength and capacity to ‘fight the system’ would have their voices heard, and there was a sense that less vocal families might lose out. One self-advocate voiced her anger and the lengths that she had to go to, to have her son’s essential care and support needs met:

Nobody gives a toss until I start to create a fuss over one thing or another they all assume everything is ok…Even to get him vaccinated I had to create hell… … I went around all of my friends and wound them up as well, gave them the same arguments. [Female, self-advocate, 65+ years old]

I have always got the services that I wanted for [my son], I have always had to shout for them but how awful that you give services to people who bully you into it because that is essentially what I have done over the years. I think that is a corrupt system that lets me do that, but while the system works like that I will work the system to [my son]’s benefit. [Female, self-advocate, 65+ years old]

There was also emphasis that families were not asking for any services above and beyond what they were entitled to.

So, we were not asking for a Rolls Royce service, we were asking them to just do what they had promised when he got to adulthood. It was a long battle and it got quite horrible at times but anyway we got him in there. [Female, self-advocate, 65+ years old]

“No one arrived to help out” Lack of trust in statutory services

A further theme which emerged from the data was the criticism by some participants regarding statutory services. There was a sense that NGOs were willing to go the extra mile for families, in comparison to statutory services. This is illustrated below where a Female, NGOW, 55–64 years old, described a lack of response from statutory services to continued queries from family carers.

I’m not trying to blow the [NGO] trumpet but lots of families have said if it hadn’t been for our organisation they don’t know what they would have done or where they would have been. [Female, NGOW, 45-54 years old]

I think the third sector organisations have completely held up the community through the pandemic, absolutely and it’s shocking. I was in a meeting a couple of weeks ago with other third sector organisations and yes we don’t have all the red tape and we can respond flexibly but I mean there is no excuse for some of it. [Female, NGOW, 45-54 years old]

Some participants mentioned the difficulty in communication with, for example, social services, during the pandemic:

You just can’t imagine how some of the families managed because no one came across the door, no one arrived to help out. They would make phone calls to relevant professionals in social work, GP practices and there was no answer, there was no one willing to come out which was unbelievable for all of us. [Female, NGOW, 55-64 years old]

A lack of trust was identified between family carers and some statutory services or local authorities. Family carers reported a lack of trust in statutory service providers during the pandemic due to concerns that they were being forgotten, a sentiment echoed by other researchers [35]. Poor communication and ongoing problems with service provision may have further reduced trust and led to family carers turning to NGOs as sources of support and advice:

The whole redesign of services has meant that families have lost trust in local authorities and services and there wasn’t a lot of trust before. There was never a great partnership because of communication between statutory services, parents and the lack of support. That trust is almost all gone now and how that ever can be brought back I don’t know. [Female, NGOW, 45-54 years old]

Fundamentally there is a huge lack of trust between families and local authorities, and local authorities and families. I think local authorities think that families are going to abuse the system which they are not… …A lot of what the people are asking for is not pie in the sky stuff, it’s all relatively low cost realistic stuff that makes sure people are happy and healthy. [Male, NGOW, 25-34 years old]

The need to consult family carers regarding matters that affect them was identified as an issue, which statutory services neglected to do on a regular basis. This left family carers feeling unheard by statutory services which may have contributed to the erosion of trust. Conversely, NGOs took the time to listen to the concerns of family carers resulting in greater trust and provision of a service which was directly informed by their needs:

For risk assessments, we were asking families what should be here, what are you thinking? What is an issue for you, what should we be doing to keep you safe? It’s about making families feel included which they don’t feel like through other statutory services. They don’t have that real consultation where they are listened to. [Female, NGOW, 45-54 years old]

Creating an online support programme

One of the main foci of the focus group discussions was encouraging NGOW to think about what a successful support programme for family carers would comprise and might look like. Responses strongly emphasised the need to adopt a coproduction model – i.e. consulting family carers about what they would look for in a support programme:

I think anything that you create needs to be created alongside involving experts by experience be that carers themselves, people with learning disabilities, they will come up with the best suggestions of what they think works and what doesn’t. [Female, NGOW, 45-54 years old]

I suppose we take it so much for granted but the word co-produce, I would say speak to families and ask them what they need, what would work for them, what time of day, what sort of venues, what sort of things would be useful. Some things are so basic but sometimes people develop all these things and they have never actually spoken to somebody about what would work, so that would be my thought. [Female, NGOW, 55-64 years old]

A common topic discussed was the need for peer support, the extent to which peers have supported each other during the pandemic, and the potential for a support programme to connect people. It was felt that peer support for family carers would reduce feelings of isolation through sharing experiences and creating social connections to support emotional well-being. Family carers have expressed appreciation for support received through the use of technology (videoconferencing) which linked them with family, friends and certain services [20].

First thing that comes to mind if some sort of reduction in isolation. I think a lot of our families are very lonely so anything that can help that. [Female, NGOW, 45-54 years old]

One thing I’ve always thought would be really good and I think it would be difficult to get up and running and also to facilitate it but some sort of buddy system to introduce families to others. [Male, NGOW, 25-34 years old]

What people need is a network that they feel they can tap into when they need to. I am a big believer and I think it has helped a lot of people together, somewhere where people can just get together, have a natter and have a coffee. Those circles of support have been lifelines for a lot of people I think during the pandemic. For me if there was something that could really highlight stuff it’s people really seeing the value in those, and they are not just nice to have things, they are actually critical. [Male, NGOW, 25-34 years old]

Some participants discussed efforts that their organisations made, or that they had been involved in, during the pandemic, which were helpful in supporting family carers. Some NGOs had established online activities to engage those they work with, for example online quizzes, bingo, cookery demonstrations, yoga, mindfulness, wellbeing, music therapy, horticulture, exercise classes.

We were able to develop our virtual activity programme. Every single member of staff pulled into the development of that programme and what we now have and have consistently had pretty much since the first couple of weeks within the pandemic is a rolling programme of music, drama, storytelling, arts and crafts, sporting activities, carer catch-up, information workshops. [Female, NGOW, 45-54 years old]

Others felt that an online programme might include a one-stop shop repository of relevant, honest, reliable and easy-accessible information.

I think that information which is needed is where people can get support for a range of things really: care, support, leisure. [Female, NGOW, 45-54 years old]

Let’s say when I was thinking about [my son] going into independent living, I would have liked to have been able to type in something like – can people tell me what arguments to use when I am trying to get my head around how I am going to present my case? Because no person ever presents your case for you, you are the one who is going to have to do that. [Female, self-advocate, 65+ years]

There was emphasis on the business and exhaustion of family carers and the fact that they would only be able to access support if they were relieved of their caring duties or if it was at the right time of day:

They had no time and they were absolutely exhausted so it is really difficult to say what would support people online because it just depends where that person is at that point. [Female, NGOW, 45-54 years old]

I’m getting asked more and more about the counselling and wellbeing side of things because I think families are now very very tired. [Female, NGOW, 55-64 years old]