Staff and family views of alternative respite services for adults with intellectual disabilities – aims, outcomes and experiences

Abstract

Background Respite care has traditionally been conceptualised as a short residential break which allows families a break from caring responsibilities. In recent years, alternative respite services have been developed which promote greater social integration and normalisation for people with intellectual and other disabilities.

Specific aim: The present study sought to explore the views of service managers and families on the definitions, aims, outcomes and general experiences of these programmes among a sample of adults with intellectual disabilities (ID) using a range of alternative respite services.

Method Participants were managers of respite services for people with ID (n = 6) and family members (predominantly parents, n = 32) of adults receiving respite services from these organisations. All participants were provided with appropriate information on the study and gave consent. Semi-structured interviews were used to explore participants’ perspectives on alternative respite provision for adults with ID. Data were analysed using thematic analysis, with multiple analysts involved to allow for reflection on the interpretation of data.

Findings Managers and families showed diversity in the conceptualisations of respite services, with themes highlighting the importance of the break for both people with ID and families, as well as a clear focus on the needs of and developmental outcomes for the person with ID. As such respite was viewed as both a model of service and an outcome for families and individuals with ID. These differing views appeared to have implications for views on who was the target beneficiary of respite.

Discussion The present study reflects alternative respite as a diverse experience for people with ID, their family members and the service providers supporting them. Nevertheless, views were generally positive. Further consideration of the nature of respite services beyond the traditional conceptualisation is warranted.

Introduction

Respite care has been emphasised by the World Health Organisation (WHO) as an important feature of intellectual disability (ID) services (WHO, 2007). Caregiving for a family member with ID can be stressful, with limited time for individual leisure pursuits (McConkey et al. 2011). Support in the form of respite allows families of the person with ID to take a break from their typical caregiving duties (Chan et al., 2001; Nankervis et al., 2011) and thus it is a key support for families as it allows them to use their time for activities of their own choosing. This break is vital with respect to preventing burnout with caregivers to ensure that they can continue caring for as long as possible (Exel et al., 2007). Typically, respite care involves an overnight stay in a residential facility and it can be difficult to meet individual needs for respite with one type of service, given the heterogeneity of people with ID (Mannan et al., 2011).

According to the Irish National Intellectual Disability Database (NIDD), 4385 people with ID in Ireland received overnight respite care in 2016 (Doyle et al., 2017), taking respite here to mean any form of activity classified by the NIDD in its annual returns. Furthermore, geographical location appears to dictate the number of respite nights received (Doyle et al., 2017) and the likelihood of receiving respite (McConkey and Keogh, 2017). It has been argued that increasing demand for respite (see WHO, 2011) may reflect changing demographics in the ID population. The age profile of care recipients is increasing and family carers are also ageing (McConkey et al., 2011). McConkey et al. (2011) found that the characteristics of caregivers (e.g., a lone carer) did not impact necessarily on receipt of respite and there was much variation in how respite nights were allocated. For instance, some services provided more families with fewer respite nights while others provided fewer families with more respite nights.

Traditionally, respite care takes place in a residential facility where the person with ID would stay for a prearranged amount of time and this remains the most commonly utilised form of respite care in the UK (McConkey et al., 2011) and in Ireland (Department of Health, 2012). The lack of flexibility offered by this model of respite can create problems for service users and families as it is often inappropriate and regressive for those who do not have high-care needs (Mannan et al., 2011) and thus tailoring the service to the persons’ needs may be a more suitable approach (McConkey et al. 2010). However, the development of alternative respite services has been driven by national and international policy which emphasises integration and normalisation for people with intellectual and other disabilities (UNCRPD, 2006), Roth (2007), Health Service Executive [HSE], 2016; HSE 2012). There is no accepted definition for alternative respite services, however, respite itself can be any service in which a person is supported by a different person than their usual caregiver (Southby, 2017; Nankervis et al., 2011) and thus, any service which moves away from the residential model may be considered ‘alternative’. The familiarity of traditional residential respite can act as a barrier to families and caregivers being more open to considering alternative respite options for their family member (Southby, 2017).

As community integration is a key indicator in quality of life in ID (Schalock et al., 2008), alternative respite provision can provide people with ID with a choice regarding how and with whom they spend their time and critically, that these choices reflect their own needs and wishes, their strengths and abilities and changing patterns in their lives. Alternative respite services offer greater options for those who require respite care, including both the person with ID and their family. An early form of alternative respite care emerged in the form of home-to-home schemes (also known as home-sharing) where a person with ID is matched with a family from their community with whom they stay (Hole et al., 2015). The aim of this model is to provide the person with ID with a break from their normal routine in the company of other people from their community (Hanrahan, 2006), while the family receives a break from their normal caregiving duties. Crucially, this model also provides support in a normalised setting offering opportunities for wider social engagement. Benefits have included reduced waiting lists for residential respite care as well as benefits for the person with ID, their families and the host family (Carroll and Ní Chualáin, 2000). More generally, alternative respite services, such as home-sharing, that move away from the traditional residential model can offer a more personalised approach that promotes independence yet maintains adequate support (Hole et al., 2015). Other forms of alternative respite do not include an out-of-home, residential element such as in-home respite and volunteer-driven activity programmes.

Family caregivers are more likely to use respite care if they can be confident that the standard of care is high and their perception of the respite care impacts their willingness to utilise it (MacDonald et al., 2007). Families’ use of respite was not dictated by the presence of challenging behaviours and a lack of evidence that sought to understand why parents use respite care was noted (MacDonald et al., 2007). Families are often more comfortable using residential forms of respite, due to a lack of understanding about non-traditional forms of respite and also the perception that they may lose access to much-needed, and often scarce, residential respite if they available of other models of respite (Southby, 2017). The increasing demand for respite, coupled with a need to provide more meaningful respite for the person with ID, has led to developments in respite services, with several types of respite service provision beginning to emerge in the Irish health sector. These emerging alternative models of respite are more novel and responsive to the needs of people with ID and their families (Mcconkey and Adams, 2000; McConkey et al., 2009) and are generally considered as representing an alternative model of respite. However, the concept of alternative respite appears to be an arbitrary one and there is no accepted definition in the current literature. The present study seeks to address this gap in the literature by examining families’ experiences of using non-traditional forms of respite for their family member.

The present study

The current research sought to examine staff and family perspectives of respite services classified as alternative, in a sample of Irish disability services. A key aim was to explore definitions of alternative respite from the perspective of both service managers and families who have used alternative respite services, adding to the limited literature in this area. Moreover, the study focused on the experiences of these two key stakeholder groups regarding aims of the services, the perceived outcomes for the person with ID and their general experiences of these services. Given the importance of respite care as a support for families (WHO, 2007) and the value of person-centred services for people with ID, it is important to understand staff and family experiences of alternative respite care.

Methods and materials

Design and setting

This paper reports qualitative findings from a larger mixed methods evaluation that examined aspects of respite services from the perspectives of people with ID, families and service providers. The larger study compared the impact of traditional and alternative respite using standardised measures. Results from the quantitative findings of this comparative analysis are reported by Nicholson, (2019). This paper reports the findings from the qualitative component of the larger study, with participants drawn from six self-selected organisations based in both urban and rural settings across Ireland. In general, Irish services for adults with ID are predominant delivered by two groups of organisations, statutory service providers and non-statutory non-for-profit agencies (referred to as the voluntary sector) which are in receipt of government funding. Both types of organisation were represented in this study. In reporting the findings of this qualitative component, the authors were guided by the recommendations by O'Brien et al. (2014).

The qualitative component reported in this paper adopted an exploratory perspective of the nature of the respite service provided by the participating organisations and families’ experiences of the service received. Table 1 provides summary information on the nature of the respite practices being delivered in the organisations. This is based on information provided to the research team by the host organisation of the project, (Genio), who supported each of the organisations to develop respite services that moved away from the traditional planned residential service structure. As discussed above, while there is no accepted definition of alternative respite care, the participating services each sought to provide respite care which differed from the traditional residential model whereby, those receiving the service were engaged in activities that promoted personal development and greater community involvement. As a result of this individualised approach, there was naturally much heterogeneity across the services.

Table 1.

Existing information on respite models in funded services

Indicative Model	Project Description	Year funding awarded	Initial no. of beneficiaries
Host Family/Home Share	Trained families in the community to care for people with disabilities to provide a break for their parents. The project provided both day and night respite.	2010	21
Short Breaks	Provided customised short breaks to the families of individuals who currently avail of traditional respite (e.g., weekends away with friends).	2011	40
Community Volunteers	Community-based respite for 20 people with intellectual disabilities staffed by volunteers. Time spent in the community doing activities of the persons choosing.	2012	20
Independent Living	Time spent in a supported residential setting for people who wish to live independently in the future in a community setting with minimal staff support. People stay with friends or by themselves.	2013	16
Individualised Respite (Applies to 2 services)	In-home and activity-based respite that was based around the person's own interests. An emergency response respite system was also provided which took place within the person’s home.	2013	50

Participants and sampling

The study employed a purposive sampling approach, in which services delivering alternative respite services were invited to participate, and within these services individuals (staff and family members) with experience of these services were identified as possible participants. Overall six managers of services were represented in the study, one from each target service. Family carers of individuals with mild/moderate ID taking part in the quantitative component of the overall study (n = 58, Mean service user age = 33.69, 55.4% female) (Nicholson et al., 2019) were invited to take part in an interview about their experiences. Family members were initially contacted through the service attended by their family member to ascertain their willingness to take part in the research. If they agreed, they were contacted by a member of the research team and informed consent was obtained. The family carers of 31 individuals completed an interview (n = 32, one interview was completed with both parents), they were predominantly female (n = 28) and parents (n = 22) and represented approximately 40% of the people with ID in the aligned study. This represents approximately 53% of the initial beneficiaries of the alternative respite services. The age and gender breakdown of the people with ID whose family members took part in the interviews were not significantly different to those who did not take part in the interview. Only minimum demographic information was recorded on family participants. Nevertheless, all participants were informed participants, having had experiences of both traditional respite (in the past) and alternative respite (current respite provision). While the lack of qualitative data on the experiences of individuals with ID is an important limitation of the present study, this reflects the choices made in the context of the wider mixed-methods project. As part of the quantitative component (Nicholson et al., 2019) self report methods were used. However, in developing the project there was a concern that inconsistencies in communication ability would limit the number of participants who could be included in the qualitative phase and the decision was taken to focus on the managers and family members.

Measures

The research employed qualitative semi-structured interviews with the service managers to identify service aims and associated outcomes. Interviews were also conducted with the family caregivers and sought to explore their viewpoints on respite, including what they feel their family member gains from this service. Two semi-structured interview schedules were developed (one for each group) drawing on the objectives and the literature in respite care. Topics examined included the background to the respite service (managers), previous experience of respite (managers and family caregivers), the nature of the service as experienced by people with ID (managers and family caregivers – including key principles of respite generally, specific service principles and service aims), perceived outcomes of the service (family caregivers and managers), and finally future plans (managers) and hopes (family caregivers). Early interviews with each participant group served as a pilot, allowing for some revisions to the approach taken. For example, in examining families’ perspectives of changes in their family member with ID associated with alternative respite, the choice was made to focus on perceived changes in their family member with ID, given that this reflects the more person-centred nature of the services. This paper focuses on the data relating to the aims, outcomes and experiences of the service.

Procedure

Formal ethical approval was obtained from the local academic Research Ethics Committee and from each organisation where there was a sitting ethics committee. People with ID and their families were first contacted through the service providers to obtain their consent to take part in the research. These interviews with family members were conducted in person in the home (n = 19) or over the phone (n = 12) by trained research assistants supporting the project and were recorded using a digital audio recorder. The semi-structured schedule was followed and adapted to clarify questions where necessary. The interviews ranged in time from just under two minutes to over 26 minutes, with the length of the interview determined by the participants’ responses rather than the agenda of the researcher. There was 351 minutes of interview recorded, with an average length of just over 11 minutes. However, we are confident that this reflects the desired input of the participants, given their experience and views of respite.

Data analysis

Thematic analysis based on Braun and Clarke (2006) was used to explore common themes that emerged from the semi-structured interviews with managers and the families. No specialist software was used, though Microsoft Word and Excel were used to manage the leyels of coding and interpretation employed, The key stages of the process reflect those described by Braun and Clarke; initial line by line coding identified initial interpretations of the data (including both semantic and latent codes) and following this, candidate themes were developed. Themes were considered to represent a pattern in the responses to the aims of the study, while subthemes were related by lower level feature of a theme. A review of these candidate themes as developed by different analysts led to the development of final themes. Saturation as typically defined in grounded theory was not a guiding principle as it was felt that all potential participants should be invited to take part in the study and that interviews should be conducted with all participants who consented within the timeframe. However, the researchers noted that first codes and then themes were recurring by the final stages of analysis. Also, no member checking of the analysis was used as it was recognised that the researchers’ interpretation of the data represented a perspective on the data that was not shared by all participants.

In conducting this analysis multiple coders (specifically two research assistants with experience of the study or qualitative data analysis more broadly) were involved, working with a senior member of the team to ensure the credibility of the analysis. One research assistant took the lead on each dataset (managers and families), with the other contributing to theme development and completing a formal check of interrater reliability. The process was overseen by the senior member of the research team, who conducted parallel coding and theme development on a sample of the data, allowing them to be involved in finalising the themes for each dataset to ensure quality standards were maintained. The research assistants were psychology graduates without any significant experience of intellectual disability, while the senior member has been involved in disability research for over 20 years. This combination of experiences was helpful in allowing the analysts to reflect on how their views on the issue of respite might be influencing the interpretation of data. The qualitative findings reported represent those themes that showed good credibility (as evident in consistency of interpretation across the analysts involved) and salience in the context of the aim of the study.

Findings

Definitions of respite

A central element of understanding the context of the study was the participants’ perceptions of the nature of respite as a concept. This was explored in interviews with both the managers of the services and the families, allowing for some reflection on patterns across the groups. Table 2 below presents the themes evident in the data and provides sample quotes highlighting elements of these themes.

Table 2.

Definitions of respite as evident in manager and family interviews

Themes from Manager Interviews			Themes from Family Interviews
Themes	Sub themes	Sample quotation	Themes	Sub themes	Sample quotation
Respite as a break	For family	M6: My definition of respite care. I would see it as anything that gives a family a break.	Respite as a break	For family
	For individual	M3: we talk about respite for families, like I mean the individual themselves need respite as well, they need to be away from the family for a while.		For individual	[Ind] would you know, I suppose have a bit of a break from us as well, (ALT2_Family12)
	For everybody	M1: so, I suppose for me I see respite as a break, but maybe a break for everybody…		For everyone	for us respite would be emm, that we would actually get a break from each other, (ALT2_Family4)
Defined by structure and delivery	Residential	M2: They did have a respite house similar to here, so you would have had children and adults, say, spending anything from one night up to seven nights away from home	Defined by structure and delivery	Residential / Overnight	Respite care is where our daughter would stay overnight, one night or a couple of nights, (ALT1_Family7)
	Support in home	M3: that the lads could say ‘well look it I want, my family are going away this weekend, I don’t want to go but what I want is I want someone to support me’.		Supporting independent living skills	Training overnight sort of thing, they were training the child, the young adults to eh, fend for themselves (ALT1_Family2)
	Day/evening/ activity respite	M3: Then of course the evening thing was a big thing, you know, that they had lots of going to cinema and going to, you know … and that they were supported to do that.		Activity based
	Host family/ Home share	M2: Where I would have worked before, they would have had .. the like of breakaway families.		Home share	My definition of respite care is having a child go to a person or a house (ALT5_Family4)
	Respite holiday	M5: So, we might do weekends away as I said, we might go off to [location].
			Who provides support?	Service staff	it’s staffed by the staff here (ALT2_Family2)
				Community carers	I think it was the fact that it was a person, an average person, that meant the difference to us. (Alt5_Family3)
				Volunteers	she has a young lady that came out from college … and she came once a week (ALT6_Family7)
Opportunity for Service User (SU)		M5: respite embraces where the individual has an opportunity to avail of other new experiences outside of his own home	Assisting person with ID with their goals/outcomes		it means that she’s actually getting out and being a bit independent (ALT2_Family4) Meet new friends or something like that (ALT1_Family1)
Principals guiding the service		M3:I suppose its service user led, it’s not led by staff or anybody else in the place. What happens is the lads come in and they decide for themselves on any given day what they are going to do.	Day activities not seen as respite		but I wouldn’t consider [name] in a respite care. She’d go to a day service. (ALT6_Family3)

What is clear from the table is that definitions of respite as provided by participants were to some extent varied and complex but showed consistency in key areas across the two groups. Both managers and family members defined respite in the context of having multiple beneficiaries, with participants in both groups describing it as a break for the family and also noting developmental goals/outcomes for the person with ID. This can be seen in the quote from Manager 5, who stresses the importance of new experiences. The complexity of participants’ conceptualisation is represented in the definitions of respite based on how respite is delivered, with families drawing on types of respite and who provides the service more than managers. However, both groups saw the residential and overnight nature of respite as key to their definitions. Unlike the managers, whose professional role might allow a more reflective consideration, many families appeared to conceptualise respite based on the nature of their own experience. A point that appears to be unique to the family perspectives is the suggestion that some families may not be aware they or their family member is receiving respite. This may reflect the narrow focus of families on respite as overnight stays in another location, though some of the respite services included in the present study are non-residential. In addition to the theme reported by families that their family member received a day service rather than respite, some participants were unable to offer a definition as they lacked experience of respite (I don’t know because she has never availed of it, I, I honestly can’t answer that - ALT2_Family12).

Aims of alternative respite services

Within the managers’ interviews, the discussion of the aims of the service highlighted several points relating to the nature of alternative respite. It is interesting to note that there were no common themes across all six services, perhaps highlighting some diversity in these alternative services and potentially the challenge of understanding the nature and potential contribution of these services (Table 3).

Table 3.

Aims of the alternative respite service: Manager Reports

Theme	Sample Quote
Aims for Individual	M4: the core goal of it and to give it in a personal centred way that it will suit the individual themselves. And again, they would be at the heart of planning the alternate breaks … it can be meeting plans and personal centre plans as well if there is an element of a personal centre plan that can be built into it…
	M5: We hope to achieve that every person that would like, that there would be another family out there to support them to get involved in their lives…
Provide more options for families	M3: they’d ring up and say ‘God is it…’, you know ‘Is there anything happening next Friday’ and you’d say ‘Well sure we can make something happen next Friday’ so we could do something like a trip to the cinema, you know, so that gives somebody the option of staying back…
Break for family	M4: Again, it is to give the needed family break. That is the core of it, is to give the family the break …
Delay application for residential care	M4: …so there is the family need and to give or to stop the family unit from breaking down is the core…
Reduce family worries	M2: having the security and knowing that if something happened, … that in itself is nearly a reassurance for families that they know if something happens, they can avail of it.
Community integration	M6: we were trying to achieve a few things, in the community it is a positive thing for a community to know somebody with a disability and I suppose to see disability in a more positive light, was probably one of the things we hoped for.

The most commonly cited theme reflected a focus on the aims for the person with ID rather than focusing on aims for families, with subthemes reflecting an awareness of the role of respite in supporting personal goals, independence and social opportunities. This might reflect a strong person-centred focus in the alternative services. However, several other themes did focus on the family (provide options to families, provide a break for families, reduce family worries), which might highlight the multiple aims of respite services. This suggests that alternative respite services may address aims for both groups, raising challenges for how these multiple aims can be meaningfully achieved in the delivery of the services.

The outcomes associated with alternative respite

Table 4 presents the themes that emerged from managers’ discussions of the impact of these alternative services. It also outlines families’ views of changes in their family member with ID associated with the alternative respite service. While it was necessary to frame the questions slightly differently, the aim with both groups was to explore views on what outcomes the access to respite had or was intended to have.

Table 4.

Themes evident in discussion of outcomes (managers) and change (families) associated with alternative respite

Theme	Source/Subthemes	Sample Quote
Achieving outcomes for individuals	Managers – Normal routine, Socialising, personal development	M1: I think that they would gain confidence, that their skills would improve… M4: I suppose making friends, and one element would be with the groups that they are in, you see how they get on and then you say will they really hit it [off] so give them a chance to make new friends and new relationships
	Families - Developing daily living skills, personal outcomes	doing a little bit of shopping and planning a menu with another person (ALT1_Family2). But I think he definitely had a little more confidence (ALT1_Family12)
The break is the outcome	Managers - Delay application for residential care	M4: And for the individuals themselves, the service users, time away from their families, it works both ways. M4: So, it is definitely that break away from each other, stop the family unit breaking down, maybe the offset of looking for residential placement.
Increased options for families	Managers	M3: I think if parents themselves feel that there is that openness, I think they start to open up to looking for, you know, what’s in the future. We are saying well maybe it doesn’t have to be somebody living in a community house, it could be somebody living with somebody in a house and they are being supported by the service
Outcomes for the service	Managers	M6: Well I suppose one of the outcomes was that got a really good system, from an organisational point of view…
Conflicting views of change associated with respite	Families	[name] would have improved, like she has her ups and downs (Alt2_Family1); I wouldn’t say there has been much of a change in [individual] because she is a very sociable person (Alt6_Family8) equal positives and negatives
Respite perceived as a generally positive experience for the individual	Families	he’s looks forward to it for a week in advance, and kept reminding me ‘don’t forget now on Friday I won’t be home’, (ALT2_Family3). She didn’t want to go back after that night. (ALT6_Family1)

It is noted, but perhaps not surprisingly, that some of the themes evident here reflect some of the themes presented earlier as the nature and aims of the services. Both managers and families considered outcomes for the person with ID, with subthemes evident in both groups. Commonalities across the two groups include a focus on personal development and skills for the person with ID. While families were not asked about outcomes for them personally, given the focus of the alternative respite services on more person-centred outcomes, managers did consider the impact on families in the context of the them that the break associated with respite is the outcome, with one participant seeing this break as possibly ensuring the family care situation does not break down, while an additional theme for managers represented the way in which alternative respite increased options for families. This reflects themes evident in the later section on what was perceived by families to be helpful and unhelpful about respite. It is interesting to note that managers also identified outcomes for the organisation in terms of models of service.

Families discussed changes in the person with ID associated with engagement with respite. However, there were few definitive patterns in their perspectives and a high level of variation, again reflecting the complexity of this issue and the challenge of developing a coherent understanding of the nature and impact of alternative forms of respite. Comments representing reports of change or no change occurred with similar frequency, leading to a broad theme of conflicting views of change (as evident in the presented quotes). Where change was reported examples included confidence, happiness, and enjoyment of the service. Families also discussed the nature of their family member’s engagement with respite itself, including their enjoyment of it. While the general view was one of positive and improving experiences of engagement with the service, there was a small number of contrasting comments, as evident in the quotes provided.

Experiences of alternative respite services

In considering the experiences of these services, relevant sections from the interviews include helpful and unhelpful aspect of the services (family interviews) and issues regarding the management of the services (manager interviews). Table 5 captures the key themes that emerged from families’ comments on respite services. While these themes relate in many ways to the findings reported above, the different focus of the interviews minimises the ability to draw out patterns within this section.

Table 5.

Family perspectives on helpful/unhelpful aspects of alternative respite services

Helpful Aspects		Unhelpful Aspects
Theme/Subtheme	Sample Quotes	Theme/Subtheme	Sample Quotes
Confidence in service	I think the volunteers are good. (ALT6_Family7)	Lack of confidence in service Staffing issues Communication issues Location/Access Difficulties transitioning between services Client mix in respite	the only unhelpful thing was that [a volunteer] didn’t come back. (ALT6_Family7). Well the distance in getting to it, now depending on where it is (ALT1_Family7)
Respite is meeting needs Family needs Individual needs Everyone’s needs Service needs	I suppose it is probably more for us than her (ALT4_Family8). If [service] were stuck to fill a bed in order to keep the quota up, they might phone and say there’s a bed, a place available for the weekend	Respite not meeting needs	It wasn’t so much that it wasn’t meeting my needs, but it wasn’t sufficient for my perceived needs (ALT5_Family12). [name] might as well be at home with us (ALT2_Family2)
Benefits for family Peace of mind Opportunity for self-care time with other family members
Benefits for individual Achieving goals Meeting care needs Socialisation opportunity	[name] needs it really to give himself a bit of independence away from us (ALT5_Family1). She loves it, she loves going in (ALT2_Family2). making friends with other people (ALT2_Family3)

Table 5 highlights aspects of respite that were described as both helpful and unhelpful. The first reflects factors contributing to a sense of confidence or a lack of confidence in the service. As a negative, this included multiple aspects of service provision including staffing, communication with families and convenience of location etc. Reflecting the complexity of families’ experiences, the issue of meeting needs or not meeting needs also occurred in both strands of family interviews. A core theme relating to helpful aspects of respite was the benefits, both for the individuals with ID and their families. Benefits for the family included peace of mind for family members, opportunity for self-care and time with other family members, while benefits for people with ID included achieving goals and socialisation. It is interesting to note that several families perceived no unhelpful aspects of respite. Rather than reflecting contradictory views, it is possible that these themes represent differing experiences of services.

The final insight into aspects of respite services related to the management of the service, and reflect managers experiences of delivering respite services, including the perceived challenges of going so. Almost all managers spoke broadly about issues related to service provision. This quote highlights the challenge of supporting people with ID as they move or indeed are not able to move through services. However, other quotes in this theme highlighted the negotiations that many staff experienced in making the alternative service work, including those with staff in other parts of the organisation and the impact of emergency supports on provision:

Manager 1: I suppose a block maybe for us that we envisaged you’d come on the project for 18 months, we’d upskill you and you would move on to some sort of independent living option, but because of the housing situation that hasn’t really happened. So, while we would like people to move on, we don’t feel maybe that we can pull the resource from them when they are doing really well.

Finally, it is perhaps unsurprising in the current climate that the issue of costs was noted, though only by two managers. While the quote below highlighted the potential for fewer costs in alternative models of respite, it was also noted that reducing funding might promote more creative solutions in this area:

Manager 5: I suppose we don’t want to look at costings, but it does, it is significantly less than residential. But you don’t want to do that, you want to look at quality. But it is kind of very hard because, a lot of the money is actually tied up in residential.

Discussion

The current research sought to examine staff and family perspectives of respite services classified as alternative, including examination of definitions of alternative respite from the perspective of both service managers and families who have used alternative respite services, In considering the findings of this study, it is important to recognise that the views have been gathered in a context that is marked by change. ID services, both in Ireland and internationally, are moving from a more structurally based organisation (day services vs residential services) to more needs-based programmes that aim to meet the needs of individuals and families using those services. Part of the context is the move towards personalised services (Laragy et al., 2015), while commitment to services that integrate and normalise the experiences of people with ID is also influencing the shape of service delivery. A key aim of this study was to capture the experiences of managing and utilising an alternative respite service that sought to maintain this important family support, while striving to provide services that take the persons’ choice into account.

Respite support provision, the focus of the present study, is also significantly influenced by these changes. A key aspect of this study is the concept of alternative models of respite provision, that move away from a focus on residential provision and aim to provide family carers with a break (Nankervis et al., 2011). While a shared understanding of a short break was evident in managers’ and families’ conceptualisations of respite, it was reflected very broadly. However all participants recognised the importance of that break for people with ID and their families. This appears to reflect the dual nature of respite as a service to be delivered and as an outcome experienced as a result of the service. Also evident is the focus on structural aspects of the service in discussion the definition and aims of respite, including location, staffing and timing. Nevertheless, the perceptions also included aspects of respite as supporting the development of the person with ID, with reference to skill development, choice and links to independent living reflecting previous research (MacDonald et al., 2007).

Reflecting on these findings, it is possible that the conceptualisations of respite presented in the findings do not simply reflect ‘alternative’ respite services, but rather the full range of respite services that the participants will have experience of, including traditional services. This might explain the dominance of themes that still reflect respite as a break for the family, despite the focus of this study on alternative models. However, it is important to recognise that the study examined experiences of six very diverse models, including residential and non-residential services, staff-led and volunteer-led models. Perhaps the diversity evident in the findings is simply a reflection of the breadth of the settings examined. In addition, it is notable that some family members highlighted confusion regarding the receipt of respite when the model was one that did not reflect the traditional residential structure, with some evidence that families do not always distinguish non-residential respite from typical day services. The concern here is the possible impact of this confusion on families’ satisfaction with the supports they receive. This finding is reflected in previous literature which found that, despite the availability of alternative respite care, families tend to have a fixed idea of respite as a residential service (Southby, 2017).

It is important to consider where this study leaves the need for discussion of models of respite services in ID. It is clear from the findings that there is variation in conceptualisations and experiences that includes both the families’ needs for a break from the demands of caring and the potential for respite to contribute to the development of personalised services for people with ID. One possible shift in focus is the move from a structural definition of respite to a greater focus on the desired outcomes from respite. There are themes relating to outcomes in several sections of the findings, but the main distinction is still outcomes for families and/or outcomes for people with ID. Perhaps a key message is that different families and people with ID will want different things from respite and models available need to consider how best to meet these needs. Respite has been conceptualised as both an outcome and a service and this has hindered efforts to develop a definition of the term (Evans, 2013). This has been discussed in relation to a conceptual model of respite for older people (Evans, 2013) and the issues raised in this model mirror the findings in the present study. It also reflects studies examining respite for individuals with dementia (O'Shea et al., 2017). Evans (2013) described respite as an outcome for families and people with ID and posits that service planners could categorize services based on the intended outcomes for both groups to ensure all needs are being met. However, the complexity inherent in understanding this issue, as well as the exploratory nature of this study, would raise the question as to whether the term respite is helpful. We suggest a need for more research on this issue before a model can be developed to inform the further development and delivery of respite services.

Strengths/limitations

This study set out to consider the experiences of alternative models of respite services in ID and in achieving this aim, there are several strengths and limitations that must be considered. It is important that staff and family members had direct experience of respite, allowing them to share their views. However, it is equally important to note that participants had experience of different respite services, traditional and non-traditional, which may have affected the extent to which the findings only reflect the alternative services the study aimed to examine. In some cases, interviewers noted that families had difficulty distinguishing between traditional and alternative respite. For example, in one interview a parent responded that they could not define respite as they had not received any. However, they had been invited to take part in the study based on receiving non-residential respite support. While interviewers worked to direct the questions in interviews, this may have implications for the extent to which all participants were specifically sharing their experience of alternative respite. However, beyond being a methodological issue, it may be indicative of a wider challenge regarding how much families know about the services they receive and how meaningful service distinctions are, particularly if services overall move in a more normalising direction providing ‘supports’ rather than distinct services and more non-residential respite programmes.

While a range of services were included in the study the sample is limited in that only adults with mild/moderate ID were included; it is realistic to expect that exploring the experience of services for adults with more significant ID may highlight different priorities. Also, the study drew on a rigorous analysis of the data, involving multiple researchers, with the themes grounded in sample quotes.

A key limitation is that the services included in the present study had secured funding to develop alternative respite services. Therefore, it is possible that this might reflect a commitment to innovation and service development that might not transfer to other settings.

Another limitation is that despite considering diverse views, the perspectives of adults with ID themselves were not part of this element of the study. Variations in communication ability meant that only limited engagement with people with ID was possible in the overall studies. However, given the need to consider different models of respite, the limitations considered here should not detract from the potential learning, given the lack of research on alternative models of respite in ID internationally.

Conclusion

In attempting to explore the nature of alternative respite services in ID, the central message from this study is that alternative respite as it stands is not a single model – it is a complex range of aims, structures and operations that consider both the needs of people with ID and their families. However, if services are to develop models of respite that can respond to the needs of both groups, it would appear there is a need for further reflection on the nature of these services, to allow service providers to make the most of respite in the context of personalised services. If the focus in outcomes is to take precedence as is considered above, there is a need to identify what the module of outcomes of alternative respite services would include. The findings of the present study would support that there were still be outcomes for families in terms of a break from caring responsibilities but there should also be explicit focus on the achievement of individualised goals, which would vary based on the person with ID and their stage of life. Further consideration of the nature of respite in ID might allow for the development of responsive rather than reactive services of benefit to all those impacted by the service.

Funding Statement

This research was funded by The Atlantic Philanthropies.

Disclosure statement

No potential conflict of interest was reported by the authors.