View of relatives on quality of care: narratives on the care for people with visual and intellectual disabilities

Abstract

In the care for people with intellectual disabilities in the Netherlands there is a growing emphasis on the relationship with relatives. The aim of this study is to explore the views of relatives regarding the quality of care and support for people with visual and intellectual disabilities. In this qualitative study twelve semi-structured interviews were conducted with relatives of people with visual and intellectual disabilities having experience with multiple group-homes of specialized care organizations. Analysis revealed seven overarching themes: 1) Be partners in care; 2) ‘Know’ the person with the disability; 3) Provide care from the heart; 4) Provide safety; 5) Provide opportunities for development; 6) Provide continuity in care; 7) Provide a ‘home’. We conclude that the attitudes of care professionals are very important to provide good care and support, as seen from the perspective of relatives. For relatives, it is important to be acknowledged by the care professionals.

Points of interest

• This article is about the viewpoint of relatives concerning the question: what is your understanding of good care and support for people with a visual and intellectual disability living in a group-home?

• Relatives wish to be involved in the care that the person with disabilities needs and receives. They would like to be seen as partners of care professionals in providing care and support and wish to be contacted if choices or decisions are made.

• It is important for people with a disability living in a group-home to be respected as a person by care professionals, to be able to learn new things, to receive structured care by familiar carers and to feel safe and at home in the group-home.

• The findings from this study may serve as recommendations for care organizations and professionals.

Keywords:

• Quality of care
• visual and intellectual disabilities
• relatives
• quality of life
• group-homes
• care organizations

Introduction

In the care for people with an intellectual disability in the Netherlands, there is a growing emphasis on the importance of involvement of relatives. More often, care professionals seek advice from relatives of persons with disabilities. This makes sense, as most people with an intellectual disability lived with their family for a significant period of time, and hence their personality, needs and preferences are best known by them. Consequently, the policy of many care organizations today is to involve relatives of people with an intellectual disability in choices about care and support (Van der Scheer and Stoopendaal 2018; Engels et al. 2019; Vereniging Gehandicaptenzorg Nederland 2017). This study focuses on the choices and support these relatives describe as being of importance for care provided by care organizations in group-homes for persons with a visual and intellectual disability.

Historically, the quality of care was mostly seen from the perspective of care professionals and managers in care organizations (De Waele et al. 2005). For example, the well-known framework developed by Donabedian (1966, 1988) for defining and measuring quality of healthcare, consists of three aspects: 1. structural – whether the right facilities are available (e.g. financial basis, staff, materials), 2. process – how adequate care is delivered (e.g. therapies according to protocol, communication with patients), and 3. outcomes – the consequences of provided care on health and wellbeing (e.g. quality of life). Other models of quality of care are described by Campbell, Roland, and Buetow (2000) and Mainz (2003), which focus on measurable indicators from the perspective of care professionals. In contrast, more recently, the World Health Organization (World Health Organization 2006) has expressed that care needs to be safe, effective, timely, efficient, equitable and person-centred. This means that the quality of care from the perspective of the person who receives care has become more important.

Since the health care paradigm has shifted towards social inclusion of people with an intellectual disability and supporting them to participate in the community, the concept of quality of life – perceived by care professionals as well as by people with an intellectual disability – has become a major focus in the field of care for persons with an intellectual disability (e.g. Maes, Geeraert, and Bruel 2000). Schalock and Siperstein (1996) have operationalized this concept into eight core domains: 1) emotional well-being, 2) physical well-being, 3) material well-being, 4) interpersonal relations, 5) personal development, 6) self-determination, 7) social inclusion, and 8) rights. These domains have been confirmed in a review study of individual referenced quality of life domains (Schalock 2004). Bigby and Beadle‐Brown (2018) made an overview of factors contributing to quality of life with respect to people with an intellectual disability living in supported accommodation services. Marquis and Jackson (2000) found that quality of life’ experiences for people with disabilities are strongly influenced by the nature of their interactions with service workers. This result is in line with the finding of Schalock (2004) that the inter-personal relations are the most frequently cited indicator of clients’ quality of life.

The quality of life for people with intellectual disabilities living in certain residential care has been found to fall short in some domains, such as self-determination and rights (Gjermestad et al. 2017; Murphy and Bantry-White 2021) and has even led to abuse and unnecessary deaths (Richards 2020; Walmsley 2020). It is known that different forms of residential care exist for persons with an intellectual disability, of which the community-based services are found to perform best (Kozma, Mansell, and Beadle-Brown 2009; McConkey et al. 2013).

Given the focus on relatives partnering in the care for people with disabilities, it is important to include relatives’ opinions in research on quality of life and quality of care concerning people with disabilities. Dodevska and Vassos (2013) showed that professionals and clients conceptualize a ‘good’ staff member differently, meaning that it is important to investigate the idea of good care from different viewpoints. The relative’s viewpoint is shown to be important to include (Wittenberg et al. 2018; Olivier-Pijpers, Cramm, and Nieboer 2020). Relatives may have an important voice regarding the life history and uniqueness of a person and subsequently know how the best care for their relative would look like (e.g. Mastebroek et al. 2016). This is especially true for people for whom communication about preferences and needs is difficult, because of additional sensory problems (Gunther 2004). Having both a visual impairment and intellectual disabilities may be seen as a multiplication of the severity of problems (Van Duijvenboden, Pietersen, and Strauss 2018) increasing the reliance on proxies. Persons with a visual and intellectual disability are not able to compensate their visual impairment with cognitive abilities such as planning and memorising, and vice versa, to surpass aspects of their cognitive disability by communication with visual cues (Gunther 2004). This changes their perception of the world and hinders their possibilities to express needs. If people with intellectual disabilities cannot be interviewed, a close relative is the preferred person to respond on behalf of this person (Schwartz and Rabinovitz 2003). Relatives usually have specific knowledge about needs and preferences. Therefore, they have a valuable perspective on quality of care and quality of life that extents the voice of the person with visual and intellectual disabilities and complements the perspective of care professionals.

Relatives’ views and opinions on care for people with disabilities have been explored with respect to the type of (care) accommodation (McConkey et al. 2006), palliative care (Bekkema et al. 2015), and needs for the relatives themselves, such as financial resources and assistance in care (Arnold and Case 1993). Also, the history of parent advocacy in the United Kingdom has been described since the mid-twentieth century (Walmsley et al. 2017). A general view on quality of care and quality of life for people with disabilities from the perspective of relatives, was given by Mattevi et al. (2012). Concerning quality of care, they found that professional qualifications, training for professionals, and access to health services were considered important. Next, regarding quality of life, the following themes were found: work, education, leisure, universal accessibility, integration in the society, and social inclusion (Mattevi et al. 2012). At this point in time, involvement of relatives is in fact one of the guiding principles of the Quality Framework Intellectual Disability Care 2017–2022 in the Netherlands (Vereniging Gehandicaptenzorg Nederland 2017) however, it is not common practice.

In this study, we aim to explore relatives’ understanding of adequate care and support provided by care professionals and care organizations for persons with a visual and intellectual disability living in group-homes. In the Netherlands sheltered care facilities exist that provide small-scale community-based group homes with care and support for persons with disabilities (Maaskant, Gevers, and Wierda 2002). Persons with an intellectual disability in the Netherlands often have a legal representative, usually a family member, who makes decisions that serve the interests of the person with the disability with regard to matters that this person cannot arrange or need others to decide (Mentorschap Nederland 2021). The reason to interview the legal representatives is because they make the decisions with respect to housing or moving from one care organisation to another. By gaining insight in the understanding of the legal representatives on good quality of care and support for their relative, we can better understand the choices they make with respect to finding a (new) sheltered care facility for their relative. By focussing on people who over time lived in more than one sheltered care facility, experiences or situations are included that gave rise to a choice for a different sheltered care facility.

As levels of intellectual disabilities influence the quality of staff–client interactions (and therefore quality of care), it is important to study this (and other) client group(s) separately (Simons et al. 2021). Interviews were conducted with relatives of persons with a visual and intellectual disability, in order to answer the research question: What are the thoughts and feelings of relatives regarding care and support for persons with a visual and intellectual disability? This question is answered using a qualitative explorative design. Findings can mark the relatives’ perspective on care and support within group-homes contributing to quality of life of persons with a visual and intellectual disability.

Methods

Participants

Participants were relatives (parents, brothers or sisters and in one occasion an uncle) of a person with a visual and intellectual disability, who receives 24-7 care and support at Bartiméus, a Dutch care organization for people with a visual impairment. This study was aimed at people who had previously received care from another care organization before moving to Bartiméus, in order to include opinions on a variety of experiences. All people lived in a central residential setting (i.e. one location with group-homes for people with a visual and intellectual disability receiving care on a 24 h basis). All participants were legal representatives of the person with a visual and intellectual disability.

To find participating relatives, a list was made of all persons who first lived in other care organizations before they changed to Bartiméus. The selected persons had a visual acuity of less than .3 in the best eye, a visual field limitation of below 30 degrees (according to World Health Organization norms; World Health Organization 2019) or were blind. All had an intellectual disability ranging from mild to severe. In total 27 people with a visual and intellectual disability were found of which 20 relatives were asked to participate (the other 7 relatives were not approached for variable reasons, such as illness or high age) of which 11 agreed to participate and completed the informed consent form. Reasons for not agreeing to participate varied and included ‘not feeling comfortable with the described in-depth interview’, ‘no time’ and ‘cancelling the appointment because of personal reasons’.

Procedure

The semi-structured interviews were held by seven different interviewers from Bartiméus in the period of June-July 2019. Each individual interview was conducted by two interviewers, one leading and the other making notes. The maximum duration of the interviews was set to two hours. Interviews were sound recorded and later transcribed. Upfront, the interviewers had received a thorough training in customer journey research (Van Slooten et al. 2018) which is inspired on the Zaltman metaphor elicitation technique (ZMET). ZMET is a technique that elicits both conscious and unconscious thoughts and opinions by exploring people’s metaphoric expressions (Zaltman 1996).

After potential participants responded positively when asked to participate in this study, they received written information about the aim of the study and the research question, reformulated as: What are your thoughts and feelings regarding care and support for your relative with a visual and intellectual disability? As a preparation for the interview, participants were asked to gather four images that represented their thoughts and feelings about care and support for their relative. Secondly, they were asked to come up with four recurring events from the life of their relative where good care and support were important. During the interview, the participants first literally described an image and then elaborated on the meaning of the image for them. The four events were discussed after the images. By using the laddering technique (e.g. Miles and Rowe 2004; Reynolds and Gutman 1988), a structured questioning technique through which a hierarchy of concepts can be derived, the interviewers tried to interpret the thoughts and feelings of the participant related to the visual metaphors, and the fundamental needs that these metaphors represent. A feedback session with the participants was organised afterwards. The interview guide is available on request.

Data analysis

Two independent research assistants transcribed the interviews verbatim. The interviewers where then divided for the analysis of interviews among the whole team, two persons for each interview. The interviews were repeatedly read for familiarization with the data. After this, relevant quotes belonging to each image were selected. Based on these quotes the thoughts and feelings of the participants regarding adequate care were recapitulated for each image. From this information, themes were derived. These themes were collected, counted, and discussed in the larger group of interviewers until consensus was reached about the overarching themes. In the next step, the team formulated a narrative for each theme of what could have been an actual story of a relative of a person with a visual and intellectual disability. The use of composite narratives to present interview findings is a relatively new method able to present stories in an authentic yet anonymous way (Willis 2019). In formulating the narratives, the interviewers tried to stay as close as possible to the words used by the relatives. The narratives were then shared with the participants. They could either give individual feedback or join a meeting where the themes were presented. After consensus the themes and narratives were finalized. The narratives and quotations were translated from Dutch to English, then checked by the interviewers and supplemented until consensus was reached. We used the consolidated criteria for reporting qualitative research (COREQ) checklist to examine the scientific rigour of the data collection and analysis (Tong, Sainsbury, and Craig 2007).

Ethics

All eligible participants were given written and verbal information about the study. Written informed consent was obtained before the interviews. This study was part of a series of customer journeys, which were discussed beforehand with Bartiméus’ client committee.

Results

Based on the interviews we found seven overarching themes that capture the experiences of relatives.

1. Role as representative: Within this theme, the participants described aspects that are important for them in their role as representative.

2. Knowing who he is: The participants described specific aspects indicating that professionals in the care organization see their child, brother, sister or relative as a unique person.

3. Care from the heart: Personal attention and true contact came up as important perspectives with respect to adequate care.

4. Safety: Within this theme, the focus was primarily on feeling safe with respect to care professionals and other residents. Also, the safety requirements of the group home were mentioned.

5. Development: The importance of care professionals giving attention to the aspect of development was discussed within this theme.

6. Continuity: A clear daily structure and a solid basis in the team of daily care professionals was said to be important for the person with disabilities and also for the representatives.

7. A home: Being able to feel at home in a care organization turned out to be an important element linking to adequate quality of care.

Below, these themes are presented with a narrative of what could have been an actual story of a relative, supported by quotes. All narratives are told from the perspective of a representative who is the sister or brother of a man (denoted in the narratives as ‘my brother’), for reasons of uniformity. The quotes accompanying the narratives are translated from Dutch. In the translation the aim was to stay as close as possible to the words that were spoken without deviating from the meaning of a sentence.

My role as representative

When my parents died, I became the legal representative of my brother. We had discussed this before and I was willing to do this. Now I am responsible for my brother. I made a promise to my parents that I would be there for him. For me, it is important to be involved in his life. I am happy when I feel that my brother is doing well and that he enjoys life. I feel responsible for my brother and I want the best possible care for him. At the care organization there is expertise in caring for him. When his daily care professionals involve me in the care that he needs, I feel acknowledged in my role as representative. It helps me when I understand the choices that are made within the care organization that concern my brother as well. I do not want to be faced with surprises, rather I want to be involved in the process of discussing and making choices. When I experience that care professionals listen to me, that we together determine what care should look like, and that care professionals call when needed, I know that my brother’s care is in good hands.

‘We always do it together, of course. We discuss everything with the care professionals and then we formulate the goals together and come up with activities. Then he receives day-care activities. We always discuss this together’ (09).

‘The role of parents has increased. We remain responsible and we have to make sure that he receives the care he needs. We hand it over to the care organization, but we remain responsible’ (10).

Knowing who he is

I find it important that the care organization sees the person my brother is. That they actively try to get to know my brother and that they focus on what is important for him in life. This should be the basis: he is someone, a human being, a unique individual. I want to see this in the way he is being supported and cared for. Whether this is possible or to what extent should not depend on individual professionals. It is important to me that the care is organised in such a way that information about my brother (written down in a plan for care) is available for all daily care professionals – including temporary daily care professionals – and that they all provide care in correspondence with this knowledge. I would like to tell about my brother and about how we were raised. I am the person who knows him best. We come from the same family and are raised with the same standards and values. I would like to stay in touch with the daily care professionals about this. I find it important that the way my brother is being cared for corresponds as much as possible with these standards and values. My brother is someone and his life matters. I want this to be the first thing noticed, rather than his disabilities. Giving attention to his appearance is also a part of seeing my brother as a unique person. Care for specific aspects of his appearance that characterize him (for example the way his hair is done) is therefore also important to me.

‘The fact that you have people around you who know you already for a longer period. You appreciate that yourself as well. Your friends, people with whom you enjoy to talk. My brother has less of that. To express yourself, to feel well, to share things that go well and less well. I think every person needs that’ (01).

‘The other day I received a text: "He is not fit, not so well. I think he has the flu, so he is lying in bed. You don’t need to worry, but just that you know." The phone rang on Friday evening: "The GP stopped by and the ambulance was called because we don’t trust the situation." Well, then you see: we can take steps very quickly, we have good contact. You know who can offer what. This results from knowing the residents well. He doesn’t have the flu, something else is wrong. This show that they know him. Thát I think is care. I think this is good care’ (09).

‘Until you think at a certain moment: this is the umpteenth house where you come to live and again they don’t make an effort to give good support. Again they do not look, they do not see who he really is and what character he has. We are done with it now’ (02).

Care from the heart

For me, adequate care is care from the heart. For example, that daily care professionals put a loving arm around my brother when he is sad or that they massage his feet, because he enjoys this so much. This care is warm and gentle, rather than just functional. I think that every person needs attention from someone who is genuinely interested. You can feel this in two or three minutes and my brother is very sensitive to this. He has a clear preference for some daily care professionals and I think this has to do with them giving personal attention. I know I cannot expect all daily care professionals to care for my brother in this way. However, it makes me feel sad and sometimes even upset when I see professionals lacking personal attention and when they pay more attention to their mobile phone. Or when I see them sitting in their office, separated from the people they care for, or when they speak about my brother in his presence, rather than with him. Please leave your mobile phone in your pocket. Talk to my brother. He is able to make contact and can therefore also make his own choices. He may not be able to talk, but he may show you much in other ways.

‘I just think they have to abolish the mobile phones in the group. Throw them away or put them in a drawer with a lock, and dó something instead. Because that … you see them walking with a massive back pocket, I just say it like this, where the mobile phone should be in, and …. Well, when you enter the group-home, they are staring again at that phone, and then I think like: please go do something with these children, go outside’ (06).

‘A while ago, I had bought quite some clothes for my sister, and we were going to try them on. Usually that is quite a struggle, but since she lives at the care organization this is a bit better. So finally, we could try on the whole bag of clothes. I really liked the fact that the care professional who was with us stroke her head and went through her hair and that sort of things. I was like: trying on clothes, take off trousers, hurry up a bit. She was not just focused on trying on the clothes, but also on my sister. Yes, that… She complimented her as well, like "well done" and that sort of things. She had an eye for more things than only my focus, which was: I want to try on all these trousers and get it over with. I found this a characteristic and nice aspect of good care’ (04).

‘Care shows from the little things, which is hard to put on paper. It is about how the staff relates to my brother … That he feels: ‘I am safe here; I feel at home here’. This varies with each care professional. Good care for me is that you have someone to share your story with, who sincerely wants to help you’ (01).

Safety

Safety may well be the most important thing for my brother. Everyone has the right to have a place where they can feel safe and at home. This certainly also applies to the people living in group-homes. After all, people with visual and intellectual disabilities are very vulnerable. When I think about safety, I do not so much think about safety requirements of the home they live in. These requirements are important, but I assume these have been met by the care organization. I am more concerned about my brother being vulnerable in relation to daily care professionals and other people that are being cared for. As a relative, you do not know these people that well when your brother starts living there. There is not much choice with respect to care organizations and your influence on the course of events in group-homes is limited. On a regular basis, things get tense between residents, even up to a point of escalation. You feel the atmosphere in the home changing. At these moments I see that my brother withdraws himself to his own room. I would like to see this kind of incidents transparently discussed. When the care organization says that this is not possible due to privacy regulations, it makes me feel frustrated. I want to know what has happened and what is being done to prevent recurrence of incidents. It is important to me that my brother feels safe and that we together look for ways to ensure this. From time to time, I also think about safety around my brother’s home. The environment is pretty, spacious and green. I am glad that the building is surrounded by fences, yet it does not give the feeling of being locked up. But at the same time everyone is able to walk around without any control who enters the environment of the care organization. I am particularly concerned about how care at night is organised. There is currently no one physically present at night in the building. Is my brother really safe?

‘I cannot accept that I should consider it normal for these things to happen here (violence and sexual incidents). And that the numbers are not that bad and that the care organization is doing much better than other comparable institutions. I just cannot accept that’ (01).

‘He has a room that cannot be locked. That’s a good thing, because he has to be able to get out when he needs to and one has to be able to enter when it is necessary. But that does mean that one of the other residents comes to his room at night. And I imagine that this does not give a safe feeling’ (03).

‘You have to feel safe … And where do you feel safe? Normally that is in your own home. At least, that’s how it should be. So it was a great frustration to us that he pulled back so much and was really scared. And now we see that he gets freedom again, and that he just sits down on the floor again, in the middle of the living room. He really did not do that anymore, because then he would be stepped on, or they would have kicked him all over the room. So yes, I think that’s the most important thing, that you just feel safe in your own home. And he lives with this care organization, so he has to feel safe there and I think that is very important’ (05).

Development

It is out of necessity that my brother is living at the care organization. This was a difficult decision for my parents, but at the care organization there is expertise in caring for him. The way the care professionals are able to interpret his behaviour and the way they help him in his development, would not have been possible for us as a family. Experiencing this makes us feel at peace. It is important to me that my brother is challenged to develop himself. On the other hand, it is important that the care professionals in time signal situations in which some of my brother’s skills have receded and provide him with alternatives or help him develop skills needed to cope with this. I would like to see that the care organization looks at what is (still) possible or what is my brother’s potential with respect to his development by actively searching for ways to make things possible. I feel proud of my brother when I see the things my brother has learned over the years at the care organization. It helps me to hear from daily care professionals what my brother is able to do, such that despite the disabilities we experience progress.

‘They have also picked up on the fact that she will also participate in her own daily living tasks. That she will not completely be undressed and dressed, but that she does some things herself. She can do things like that herself, but she just waits until you do it. But that she is stimulated in this. They looked at what game material she liked. So they have been quite busy with that. The development in terms of communication, with referrals, with gestures, they are looking at what works for her. That she will develop there. I think it is important that she just continues to develop’ (04).

‘Within the care organization he has undergone a development from spectator to participant. Or actually just being there first, then spectator, see what someone else does and how they do things. And then he chooses to participate. But he can decide for himself’ (03).

‘In the home we have now reached the point where he can make choices about what he wants to wear. With different colours so that he can choose. With a lot of choices it is unclear and it doesn’t work, but then you put two things before him, then he can choose … and those are small things that give a person freedom, that not everything is determined for him’ (09).

Continuity

My brother needs structure in his life: knowing what is on the agenda for the coming week, daily routines, rituals when going to bed, but also a number of structural daily care professionals who know him well. He does best when he is surrounded by people who know him and whom he trusts. When there are multiple changes in personnel it makes him feel agitated. When daily care professionals are not experienced or not familiar with my brother, then they do not know what is important for him. Both my brother and I may suffer from this. When we, as relatives, are unknowing who to contact or when we have to tell our story over and over again to new daily care professionals, it damages our trust in the provided care. I feel that a financially sound organization, as well as a solid basis in the team of daily care professionals are prerequisites for adequate care. Only then the quality of care can be guaranteed. When these prerequisites are not met, everything may fall apart. Furthermore, it is important for me that caregivers regularly receive training based on the newest knowledge available. This will be visible in the day-to-day care and in the contact with me as relative. I find it helpful when the care organization shares their expertise, so that I am able to apply this when my brother visits my house. Another example of adequate support and care for me as my brother’s representative is the support my brother receives when it comes to medical appointments and treatments. The daily care professionals accompany him. However, if they would not be present, the appointments would be more difficult and my brother would be more resistant. Next to this, there is a physician at the care organization who is specifically trained for this population.

‘I have a lot of confidence in professionals, but I am also realistic. I understand that people who may have been very up-to-date twenty years ago, are perhaps not very up-to-date after thirty years. I just put it like this’ (08).

‘Every time we go there, they are two, or sometimes three care professionals. That also gives him a safe feeling, like not seeing a different face every time. That also gives a comforting feeling, also for him. Like, hey, I know those faces’ (11).

‘It also gives me an extra bond with the person he has such confidence in. Yes, I think it is a pity if such a person leaves. I always think that is a disaster. Yes, then he has to start over again and that is a problem for him. And for the person who has to start working with him again that is also a problem. And then you get that fight again and again… and that is actually a terrible thing, while if he constantly has his own people around him… ‘ (06)

A home

I wish for my brother that - given his possibilities - he is able to live his life to the fullest. Just like I am. The world has more to offer than only what is available at the care organization and my brother is part of that world. On a regular basis, I try to take him with me so that he is able to experience that world. For example, I think that going on holiday is important for my brother, to see a world outside the care organization. I feel it is important that my brother feels at home at the care organization and that this is also a focus of the care organization. When my brother left home, the ideal picture was a kind of a ‘family replacing home’. At home means to me that he lives in a homely setting where he feels at home: kind of living in a family. Where at dinner he is asked ‘How was your day?’ or ‘How are you doing?’. I think it is valuable that daily care professionals try to let care feel homely. Next to this, I think food is important for my brother. But not just consumption, also doing groceries (at the care organization’s shop), tasting, smelling and preparing the food. I think this has added value for my brother. I am glad that it is possible for my brother to attend a number of activities that he may like at the care organization. When these are being cancelled because of lack of personnel, I feel frustrated. In short, I think it is important that my brother is offered a home in which life may look the same as in a general population. Of that, I want to be a part.

‘She’s in the right place here. That just makes me feel good. That’s very different from when you come here and see: her room doesn’t look good, her clothes don’t look good, then you think: really? That’s different. Then you are a bit worried, in the sense of "is she in the right place here?" But we don’t have to worry here. We are sure she is in the right place. Everything is neat and well organized here’ (11).

‘When my brother moved out and moved into the first institution, it was still called a family replacement home. That was the ideal. You go to an environment where you … I actually drew a family with a house. What you had at home, that type of concern, the compassion for you from the heart, that was my ideal’ (01).

‘Well, the way they approached us. I was welcomed by social workers who explained how the care organization worked, what the possibilities and impossibilities were. And then I felt: this is just very different. Much more care is provided here. And that home was also just beautiful. And I thought: yes, he should live there. Who knows for how long he can still live there. It just felt good’ (07).

Discussion

‘What do relatives mean by good quality of care?’ is the question that was central to this study. Therefore, we want to stress that the results of this study do not necessarily give an assessment of the general quality of care for persons who live in sheltered care facilities. Regrettably, poor care and abuse in care homes have been reported (Moore 2016) and may not be visible for relatives. Instead, the above results reflect the idea of what good quality of care in sheltered care facilities should be, according to relatives of persons with visual and intellectual disabilities. This means that experiences of good care and support were extensively described and supplemented with extra wishes about care and support. Negative experiences were also described, but may be less visible since the emphasis was on the solution and the ideal kind of care and support in the given situation. Together, these stories outline the most important points of good care and support for people with visual and intellectual disabilities in facilitated care homes, seen through the eyes of the relatives.

The analysis shows that representatives wish to be involved in the care that their relatives need and receive. In particular, they want to be involved in choices that are made. They would like to be acknowledged in their role as representative and want to be seen as partners in providing the needed care and support. In the high turnover of caregivers, the relative is the voice to the life history of the person with a visual and intellectual disability who can provide information that is needed for high quality of life. Implications for professionals to recognize relatives as partners in care have been discussed by Knox (2000).

In the majority of the themes, the quality of care is described by the representatives in terms of the quality of life of the person with disabilities. Furthermore, the focus lies on the relation with the care professionals as can be seen from four themes (2,3,6,7). Our results show that the attitudes of caregivers significantly impact the quality of life of people with disabilities, as seen by their representatives. From the narratives it appears that first of all, the sensitivity of the carers is important, to sense the emotions and understand the needs of the persons with disabilities and to recognize his/her personal values and standards. Secondly, the responsiveness of the carers is important to be able to show interest in every person as a unique individual and to provide assistance with respect to development. This is in line with theoretical understanding of the mental well-being of and ability to participate in society to the persons full potential (Sappok et al. 2021; Sterkenburg and Dyzel 2021).

These findings connect to the work of Schalock (2004), who showed that the inter-personal relations are the most frequently cited indicator of clients’ quality of life and the work of Marquis and Jackson (2000) and Mattevi et al. (2012) who found that the nature of interactions with service workers is very important. The stories provided in our study may serve as concrete examples of aspects of such interactions. Other recommendations for care professionals with respect to interactions with clients can be found in literature on person-centred care (Santana et al. 2018) and in articles focusing on interaction with people with intellectual disabilities (Dowling et al. 2019; Williams et al. 2016). Although health professionals are under pressure to provide good care despite financial cuts, we believe that it is possible to take up on most of the recommendations, as the focus is on the quality of care instead of on the quantity. Moreover, partnering with relatives can possibly alleviate the pressure on care professionals.

Besides the nature of the relation with the care professional, we see commonalities with respect to personal development and safety, when comparing our findings to domains and themes with respect to quality of life (Schalock and Siperstein 1996; Mattevi et al. 2012). In addition, Mattevi et al. (2012) found the themes work, education and integration in the society. These themes were not found in our study, probably since our focus was on care and support more then on quality of life. Interestingly, within the theme of safety, the participants of our study focused on safety with respect to other residents instead of on safety with respect to staff, while the latter has been found to be problematic in other studies (Gjermestad et al. 2017; Murphy and Bantry-White 2021). The question of whether safety problems with respect to staff exist in the Netherlands but are invisible (for relatives), is important to address in future research.

While it is important to interview relatives of persons with a visual and intellectual disability about care and support, it is equally important to hear the voices of these persons themselves (Morris 1997). It has been shown that people with intellectual disabilities are able to voice their experiences in several ways (Hens and Dunphy 2020). Interviews with people with disabilities who are highly dependent of services and care, directly reveal details about interactions, care, wishes and needs with respect to the relationships with service workers (Marquis and Jackson 2000). In upcoming research, we include the voice of people with visual and intellectual disabilities as well (Honingh et al. 2021).

Since the results of this study are limited to the specific population of people with a visual and intellectual disability living in group-homes, more research is needed to find out whether our results can be generalized to, for example, people with visual and intellectual disabilities living with less support or people with other comorbid disabilities.

The topic of quality of care and quality of life of people with disabilities can be viewed from several perspectives, most importantly the perspectives of the people themselves, their relatives and the care professionals. A suggestion for future research could therefore be a comprehensive comparative study of the opinions and experiences of groups of people with different types of disabilities, their relatives and the care professionals involved, about their understanding of high quality of care and support.

Acknowledgements

We thank the participants for sharing their experiences, thoughts and wishes with us. We thank Cis Vrijmoeth for his contribution to this paper and thank the interviewers who participated for their role in this research. Our gratitude goes to Bartiméus for the possibility to conduct this study within this care organization.

Disclosure statement

The authors have no conflicts of interest to declare.

Additional information

Funding

The research time of the third author was financially support by ZonMw Academische Werkplaatsen Verstandelijke Beperkingen, fund number 60-6410098101. The research time of the last author was partly financially supported by Bartiméus Fonds, fund number P00238.