EXPLORING THE NATURE OF RESPITE CARE IN INTELLECTUAL DISABILITY

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Ciara Willett, Suzanne Guerin, Fiona Keogh and Philip Dodd argue that because the current definitions of respite do not include a specific time frame for respite, the qualifying duration of respite is open to interpretation.

Introduction

Over 5600 people with intellectual disabilities (ID) in Ireland use a form of respite each yeaer (Health Research Board 2011). Although respite provision in Ireland has substantially increased over the past 16 years, it is projected that an additional 1211 individuals will require respite from 2012 to 2016. The Department of Health reported that 8000 individuals received centre-based respite in 2009, with a total pay cost of €52 million, and a total estimated cost of €70-2 million. They suggested that alternative models of respite care might be more cost-effective than the centre-based respite method (Department of Health (2012) Value for money and policy review of disability services in Ireland). The policy and empirical literature explicitly states the need to increase the availability of respite, and carers of individuals with ID commonly request this resource.

In order to examine the need for and impact of respite, it is necessary first to answer the question: ‘What is respite?’ Within the context of this paper, we aim to address the issue of the need to develop an explicit and cohesive definition of respite. We argue that the current definitions of respite are often too brief or simplistic to provide a clear answer, while more detailed definitions are incomplete when analysed individually. The information presented in this literature review was initially collected as background research for a future study based on defining specific models of respite. Using the search terms ‘respite’, ‘respite care’, and ‘short-term care’, we selected articles from databases (i.e. PsycINFO, PsycARTICLES, etc.) that had a general focus on respite. After reviewing the literature, we found that while most research discusses the benefits, characteristics and usage of respite, there is no uniformly accepted definition of the word. Multiple services have been classified as respite, but are very different in form and do not provide the same kinds of care (McConkey, Gent and Scowcroft 2011). In order to develop successful and accessible models of respite, it is first necessary to identify what respite truly is.

Themes in respite definitions

On reviewing the literature in this area, definitions of respite are commonly brief and implicit, most often referring to respite as a ‘short break’ (Wodehouse and McGill 2009). In contrast, few articles explicitly presented a definition and the five that were evident are presented in Table 1. Of the explicit definitions outlined in the table, only the Commonwealth-State Disability Agreement in Australia cites a specific form of respite (emergency care), despite the existence of multiple models. The National Intellectual Disability Database (NIDD) and Treneman et al.(1997) somewhat allude to respite types by mentioning that the service can be provided inside or outside of the home.

There is great variability in the specific components of these descriptions, but there are common aspects found in both the implicit and explicit definitions of respite. The most identifiable theme in the explicit definitions concerns the brief nature of respite and the emphasis that the service is temporary or a ‘short break’, a premise that is also reflected in the implicit descriptions of respite. An analysis of these definitions in respite literature as a Wordle (whereby the relative frequency of words in a body of text is represented by the size of the word, see Figure 1) revealed that ‘break/breaks’ and ‘short’ are two of the most commonly used terms (e.g., Nankervis, Rosewarne and Vassos 2011; McConkey and McCullogh 2006; Redmond and Richardson 2003; Wodehouse and McGill 2009). Robinson (1994) suggests that the term respite should be replaced altogether by phrases such as ‘short-term breaks’ or ‘taking a break’, in order to emphasise the needs of the carer and to promote a positive understanding of the service as a form of support (as cited in Hayes, Cotterill, Sloper and Flynn 1995).

Explicit Definitions of Respite

SourceDefinition
1997 Protection Act for Persons with Disabilities (Chou, Tzou, Pu, Kröger, & Lee, 2008, p. 12)
Community care services for people with a disability which seek to ‘enhance family care functioning’.
Commonwealth-State Disability Agreement (as cited in Jeon, Brodaty, & Chesterson, 2005, p. 298)Services for the relief or assistance, for limited periods of time and whether on a planned or unplanned basis, to – (a) the families of, and other people who provide assistance to, persons with disabilities living in the community; or (b) persons with disabilities living in the community.
National Intellectual Disability Database (McConkey, Kelly, & Craig, 2011, p. 1351)A break outside of the family home; most usually in a special facility or with a host family.
Treneman, Corkery, Dowdney, & Hammond (1997, p. 548)A short break at home, in the community, or in a residential setting.
Upshur (1982a, p. 2)The provision of temporary relief to the families of developmentally disabled persons living at home.

Word choice in respite definitions

The words currently used in definitions of respite tend to have particularly negative connotations concerning the general care of individuals with intellectual disabilities. They often refer to the ‘burden’ or ‘responsibility’ of caring—insinuating that the act of caregiving is an encumbering task (e.g., Cotterill, Hayes, Flynn and Sloper 1997; Freedman, Griffith, Krauss and Seitzer 1999; McConkey, Truesdale and Conliffe, 2004). This concept is further established when the definitions refer to respite as a source of ‘relief’ (e.g., Cotterill et al.1997; Freedman et al. 1999; Jeon et al.2005; McConkey et al. 2004). Because most implicit definitions of respite consist of only a few words or simple phrases, it is particularly meaningful that these words may represent more negative connotations about care in general.

Visual representation of phrases included in definitions of respite

However, it is appropriate to consider whether this negative focus provides an accurate insight into the nature and experience of respite. Nankervis et al. (2011) assert that the carer’s ‘subjective burden’ does play a strong role in determining their desire for respite. In contrast, Dossetor, Nicol and Stretch (1993) found in their study that this subjective burden did not affect a family’s choice to use hostel-based respite services, a finding that they described as surprising. Many carers actively seek out and work towards obtaining respite, as it is a service that can have many positive implications for the carer and those they care for.

However, some individuals may choose not to use respite regardless of the challenges that can accompany care. In one instance, a mother stated that she would never use the service because respite would negate her efforts to cultivate a ‘normal’ life for her child (Redmond and Richardson 2003). Dossetor et al. (1993) propose that words such as ‘fostering’ (a form of respite where the individual is placed with a host family) have negative connotations and can become synonymous with ‘giving your child away’ (p. 409). They suggest that respite should be emphasised as a support service rather than a relinquishment of care.

Individuals may be less reluctant to use respite if definitions include more positive words and emphasise the benefits of respite. We would ask if it possible that, given the way supports are accessed in many jurisdictions, parents/families feel they need to emphasise the ‘burden’ they face in order to receive some support. Some current definitions of respite do focus on the positives of respite rather than alluding to it as a brief escape from caring. Freedman et al. (1999) mentions that respite is beginning to be seen as ‘support for caregiving’ (Abstract section, para. 4), while the 1997 Protection Act for Persons with Disabilities in Taiwan describes respite as a service that ‘enhance[s] family care functioning’ (p. 12).

Future definitions of respite should focus on respite as an additional form of assistance or support and refrain from language with negative connotations. Although word choice must be considered for future definitions of respite, the inclusion of more positive imagery is not enough to elaborate upon the currently vague descriptions of respite. The inclusion and focus on distinct traits and aspects of respite will provide a clearer idea of the service and may help to emphasise the support that respite can give to carers.

Characteristics of respite

Assessing the current types of respite mentioned in the literature will help to determine specific factors that constitute respite. However, there is some disagreement on what can be considered respite (Mansell and Wilson 2009). While this could be a reflection of the lack of an accepted and cohesive definition, the implication is that as current definitions of respite lack descriptive factors, multiple services could theoretically be included in the category of respite. One survey in Taiwan combined respite with home-care services, into the term ‘in-home services’, because few people responded as having used respite (Chou, Lee, Lin, Chang and Huang 2008). Not only does this example illustrate the flexibility and broad nature of the term, but it also suggests that respite is only provided inside the home.

Although there is a lack of explicit definitions of respite, the nature of respite is implied in the literature by descriptions of the service, which allow the reader to identify key characteristics. It is important to consider these characteristics when developing a cohesive and explicit definition, as they provide the greatest insight into what respite is. Characteristics are not usually included in the explicit definitions of the term, which can prevent carers from understanding and knowing the opportunities and benefits of respite. More informative definitions containing different aspects of respite may help families to become aware of different forms of respite that fit their needs or promote a more ‘normal’ environment.

Based on our review of literature in this area, there are a number of characteristics that appear to be central to respite.

Planned/unplanned respite

The clearest delineation between types of respite is whether the service is being used on a planned or unplanned basis. The Commonwealth-State Disability Agreement provides the first official definition of respite (in Taiwan) that explicitly separates forms of respite into ‘planned/unplanned’ and ‘emergency and short-term services’ (Chou, Tzou et al. 2008, p. 12). Emergency care, or unplanned care, is a widely accepted form of respite and is often mentioned as a sought-after, but often unavailable, service that carers want in case of a crisis (McConkey, Kelly et al. 2011; Nankervis et al. 2011). Upshur (1982b), however, stresses that emergency/unplanned care is not the only form of respite or the most widely used form. Unlike emergency-care respite, it is unclear what other forms of respite can be included under the catchall term of ‘short-term services’. Lindsay (1994) describes respite as a form of support that incorporates several characteristics of multiple services (as cited in Hayes et al. 1995). Because of this, it is difficult to ascertain the nature of planned respite because it is possible to include multiple services, given the generality of the term.

Location

Types of planned short-term care are typically characterised by the location of respite and whether the service is being provided inside or outside of the home. A homelike and comfortable environment is a commonly desired characteristic of respite among carers and can be considered to be a more ‘normal’ environment (Robinson, Jackson and Townsley 2001). Carers often seek out host families or use family-link schemes as forms of respite, but the individuals surveyed by McConkey and Adams (2000) were less likely to rate ‘breakaway’ respite (29.7%), where another family provides the carer with breaks on a regular basis, as extremely valuable than residential units (48.6%) where the caretakers are more qualified. Although the NIDD definition in Table 1 only mentions respite as taking place outside of the home, carers frequently use and may prefer in-home respite (Chou, Tzou et al. 2008; Redmond and Richardson 2003).

It is difficult to classify in-home respite because a variety of support services could be included as part of this form of care. As an example, one mother in Redmond and Richardson’s (2003) interviews expressed that she preferred to receive care support inside the home, but did not consider in-home care to qualify as respite, but rather as an exchange of care. Some carers feel that having a stranger or paid-carer inside the home can make the individual feel less ‘normal’, the experience seem less of a normal break for the family, and/or would not be as positive an experience as respite outside of the home (MacDonald and Callery 2004).

Carers may be hesitant to utilise respite services in the home because they are concerned about trusting an individual who may not be able to provide adequate or necessary care (McConkey and McCullough 2006).

Formality of care

Within the in-home respite category, there are more informal care structures that may help carers feel more at ease with the provision of support by another individual. Many carers prefer to hire family members, friends or neighbours to be temporary care providers (Caldwell and Heller 2003; Upshur 1982b). MacDonald and Callery (2004) found that when carers access people they know for support, the respite tends to be very informal. Some of the carers interviewed in this study classified this form of support as ‘child-minding’, while still classifying it as respite. They provide an example of a carer who considered a grandparent taking the child for a walk as a form of respite. However, including this informal and brief support as respite is controversial because many would not consider the duration long enough or formal enough to constitute respite. Some family members argue that a service can only be considered respite if it lasts overnight, so that the carer has been given enough quality time to take a break (Mansell and Wilson 2009).

Duration

The duration of respite provision plays a large role in opinions on whether a service can be considered respite. The majority of explicit and implicit respite definitions in the literature mention the brevity of respite and stress that it is a short-term or temporary support service (see Table 1; see Figure 1). Overnight respite, along with emergency respite, is one of the most widely agreed upon forms of respite because it provides carers with a longer break.

Carers commonly seek respite in order to catch up on sleep, engage in activities they are usually unable to undertake, go on vacation, and spend time interacting with others (McConkey et al. 2004). Overnight respite provides carers with more time to enjoy these opportunities and includes many forms such as residential programs, holiday breaks, host family programs and stays in hospitals/hospices. Unfortunately, some carers find that even multi-day respite is insufficient in providing them with enough time to relax.

Because the current definitions of respite do not include a specific time frame for respite, the qualifying duration of respite is open to interpretation. Some carers feel that the service must be long enough for the carer to relax and unwind in order for it to be considered respite (Mansell and Wilson 2009). If the carer’s needs are met during the break, then the service can be officially deemed respite. Sometimes the carer simply wants a break to go to the supermarket, spend time with other family members, or be able to participate in activities they are otherwise unable to do. These desires may not require overnight care, or a shorter period of respite such as daytime care may be enough to satisfy these needs.

Articles or studies that list frequencies of respite use or discuss respite in general will often separate daytime care and respite into separate categories (e.g., Barron, McConkey and Mulvaney 2006). They are included together in the overall grouping of support services, but are distinguished as separate forms of support. In contrast, multiple articles do include daytime care as a form of respite despite its brief nature (Hayes et al. 1995; Upshur 1982b).

The NIDD specifically includes daytime programs as a form of respite—suggesting that a service does not have to be provided overnight in order to be officially considered respite (Kelly and Kelly 2012). When Al-Kandari and Al-Qashan (2010) examined the influence of respite use on the self-efficacy of mothers in Kuwait, they specifically looked at the use/non-use of an afternoon program for children, which was also referred to as ‘child’s leisure time’. There are multiple forms of daytime services, such as when the respite provider serves as an ‘escort’ to recreational activities (Chou, Tzou et al. 2008). Participation in daytime ‘extra activities’ such as playgroups or clubs was the most commonly rated ‘extremely valuable’ respite service by carers from the study in McConkey and Adams (2000). In theory, because current definitions do not explicitly state a required duration of respite, daytime care does satisfy one of the major characteristics of respite: it is a short-term service where another individual provides care.

It may be that conceptualisations of respite should centre more on respite as a support service that provides opportunities for carers to participate in activities other than caretaking. Less focus on the length of care will enable carers to discover and obtain support that meets their specific needs rather than excluding potentially helpful services. The concept of time is not as important as acknowledging that there is a shift in the caregiving responsibilities where the carer is not the primary caregiver during respite and is receiving supportive care.

Process versus outcome

Having reviewed the literature on respite, we began to discuss whether respite should be considered as a process or an outcome. Respite is commonly referred to as a ‘break’ in both the explicit and implicit definitions of the term. However, do we define this break by the aspects and characteristics of respite or by the end results of the service? Dossetor, Nicol and Stretch (1993) proposed that respite could be either a ‘constructive, supportive and therapeutic’ resource or a precursor to institutionalisation (p. 393). The first type of respite they identify is described as an outcome—the positive results of the service for the caretaker.

The second classification of respite (a precursor to institutionalisation) implies that respite can also be a process, a means to get towards a specific outcome (institutionalisation). In 1997, Paige claimed that the deinstitutionalisation movement of the 1970s led to the increased awareness and use of respite care (as cited in Upshur 1982b). Although Paige (1997) and Dossetor et al. (1993) disagree on whether respite is a movement away from or towards institutionalisation, Paige, like Dossetor and colleagues, also implies that respite is a process, because it is really an alternative service. The discussion on whether respite is a movement away from or towards institutionalisation may depend on the type of respite provided, i.e. the duration and location. Week-long respite in a service setting such as a group (or larger) home could be construed as ‘getting ready for’ institutional living in the future, whereas respite provided with another family may be part of the move away from reliance on institutional-type care.

In the literature, respite is referred to as a process when it is included in statistics concerning service use, in articles where family members describe what they want their relative to experience in respite, and in the few articles concerning the specific characteristics of respite models (e.g. McConkey and Adams 2000; McConkey, Gent et al. 2011; McConkey, Kelly et al. 2011). Respite is also presented as a process when caregivers discuss the characteristics they need included in the service. However, it appears that in many of these cases, the wants/needs are requested in order for the family to have a proper break and respite might be more adequately defined as an outcome. Of the individual case studies found in this literature review, many caregivers mentioned that they needed respite in order to get a break.

Recipients of respite

It is difficult to ascertain who the true recipient of respite is simply by examining the literature. Three of the five explicit definitions in Table 1 mention the recipients of respite care, but they each claim a different recipient. Chou et al. (2008) specifically state that respite is for the individual with ID whereas Upshur (1982a) describes respite as a service for the families. Commonwealth-State Disability Agreement in Table 1 declares both the individual and their caregivers as users of respite. Interestingly, some articles refer to the family member with an intellectual disability as the ‘service user’, implying that they are the main focus of respite (Mansell and Wilson 2009; Dillenburger and McKerr 2010).

It seems that when respite is implied to be a process and is discussed in terms of types and characteristics, the individual with an ID is considered the main recipient of respite care because they are the direct users of the service. However, when respite is examined as an outcome and in terms of benefits from using respite, both the individual and their caregivers can be considered as the recipients of the service. For individuals with intellectual disabilities, respite can be a source for outside social interaction, a vacation-like break, as well as promoting independence and being an alternative to routine structure (McConkey et al.2004).

However, this depends on what type of respite is provided. It may be important to keep in mind that the person with ID does not necessarily request respite, and indeed to ask the question if it meets their needs. At the same time, caregivers want to make it known that they are also recipients of respite because they benefit from the service as well (Mansell and Wilson 2009). While the types of respite programs discussed in the literature clearly take the service user into consideration, it is also necessary to remember that they are not the sole recipients of the service, or perhaps even the primary recipients of the service.

Conclusion

Although respite care is widely provided and associated with high costs, its definition and constituents are poorly understood. Family members interviewed in Mansell and Wilson’s (2009) study expressed frustration at what they deemed the ‘professional definition’ of respite, because it does not emphasise or acknowledge that respite is not only for the individual with ID, but is a service for the carers as well. This prompts the need to examine who frames the discourse on respite and who should be responsible for defining it. In order to design solutions that will meet individual needs, it is imperative that the family members have a more central role in defining respite. Although there is a limited amount of information from the literature specifically concerning the conceptualisation of respite, we have been able to identify specific characteristics that must be acknowledged in the development of a broader understanding of the service. There are strong disagreements concerning what should or can be considered respite in terms of the formality of care provided, as well as the duration and location of the service.

However, these major themes continue to reflect the fact that families have varied and particularised needs that can be satisfied through the utilisation of different models of respite. Respite must be a flexible and responsive service in order to ensure that each family’s needs are met. It may be more appropriate to conceptualise respite as a form of support where another individual temporarily adopts an aspect or element of the caregiving role, rather than limiting it to a specific service that is dependent on formality, duration, location, etc. The larger aim of this literature review was to reframe the discourse around respite and present a new conceptualisation of the service that focuses equally on the needs of the person and the family. Through the adoption of a more inclusive understanding of respite, we will be able to design solutions and define the subcategories of respite care in order to better meet the needs of the true recipients of respite—the individual with ID and their families.

Author Bio

Ciara Willett recently completed her degree in psychology at St Mary’s College, Maryland, USA. She joined the research team on this project during a summer internship with the UCD Centre for Disability Studies (UCD-CDS) in 2013. Suzanne Guerin is Director of the UCD-CDS. Fiona Keogh is the Head of Research and Evidence at Genio, and Philip Dodd is Head of the Department of Psychiatry at St Michael’s House Intellectual Disability Services.

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