Challenges in providing end-of-life care for people with intellectual disability: Health services access.

Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end ‐ of ‐ life care services. However, limited knowledge is available regarding what barriers to accessing end ‐ of ‐ life care support are evident, particularly comparatively across rural and metropolitan locations. Methods: Focus group interviews were undertaken with 35 direct ‐ care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. Results: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of “isolation,” “support from doctors,” “general health support access” and “internal staffing issues.” Conclusions: Improved access to end ‐ of ‐ life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Australia; end of life; health services; intellectual disability; metropolitan; palliative care

Across the developed world, people with intellectual disabilities are living longer than at any previous point in recorded history (Australian Bureau of Statistics [3] ; Coppus, [13] ; Shooshtari, Naghipur, & Zhang, [35] ). Life expectancy has increased dramatically, with some subgroups of this cohort seeing a sixfold improvement over the last century (Arvio, Salokivi, & Bjelogrlic ‐ Laakso, [2] ; Bittles et al., [7] ; Carter & Jancar, [9] ; Glasson et al., [19] ). This emerging “ageing” of the intellectual disability population has been identified for the past few decades (e.g., Bigby, [6] ; Janicki, Otis, Puccio, Rettig, & Jacobson, [23] ), and this demographic shift has resulted in increased prevalence of different terminal illnesses amongst adults (van den Akker, Maaskant, & van der Meijden, [1] ; Cooke, [12] ; Goddard, Davidson, Daly, & Mackey, [20] ; Sullivan, Hussain, Glasson, & Bittles, [39] ). In turn, this has led to greater need for end ‐ of ‐ life supports for adults with intellectual disability which have either not been required or appropriately recognized and supported in the past (Read & Elliott, [29] ; Todd, [41] ; Todd, Bernal, & Forrester ‐ Jones, [42] ; Wiese, Dew, Stancliffe, Howarth, & Balandin, [53] ).

Bureaucratic and practice barriers have been identified that limit the rights of people with intellectual disabilities to access appropriate end ‐ of ‐ life support (Read & Todd, [31] ; Todd, [40] ; Wark, Hussain, & Edwards, [50] ), and this is resulting in suboptimal care being provided to a highly vulnerable section of the community (Read, [28] ). There is ongoing uncertainty across rural and metropolitan areas of Australia on how to best support individuals with intellectual disability during their end of life (Wark, Hussain, & Edwards, [49] ; Wiese, Stancliffe, Balandin, Howarth, & Dew, [54] ), both in terms of how and where such services should occur, and with respect to the intersection between disability providers and the mainstream and specialist health services (Wiese, Stancliffe, Dew, Balandin, & Howarth, [55] ; Wiese, Stancliffe, Read, Jeltes, & Clayton, [56] ).

The Australian disability sector is currently undergoing major reform through the introduction of a nationwide insurance model that underpins the provision of support. The National Disability Insurance Scheme [NDIS] has been operating in trial locations since 2014, and Australia ‐ wide implementation commenced on 30 June 2016 (Commonwealth of Australia [11] ). The NDIS was proposed by the Commonwealth Government's Productivity Commission report into disability care as a mechanism to ensure that all people with disabilities are able to access appropriate care and support (Australian Government Productivity Commission [4] ). However, the emerging issues of ageing and end ‐ of ‐ life care were not specifically reviewed within this disability report as they were considered to be instead covered by the Productivity Commission's simultaneous examination of mainstream ageing, although ultimately this did not occur (Australian Government Productivity Commission [5] ; Parmenter, [27] ). It is still uncertain whether the new NDIS framework of support will address the existing concerns about access to mainstream and specialist end ‐ of ‐ life care services. There is confusion regarding the healthcare support roles expected of specialist disability services under the NDIS and particularly in relation to generalist care that traditionally occurs through mainstream health providers (Wark, Hussain, & Edwards, [51] ).

Although the NDIS is a national reform, its implementation is occurring through existing state jurisdictions (e.g., Department of Human Services [15] ,[16] ) which may result in differences in provision of end ‐ of ‐ life care across Australia. In New South Wales [NSW], the Ombudsman provides a bi ‐ annual report on all reviewable deaths of people with disability in the state. The most recent report specifically noted the ongoing need for access to more appropriate support and care models during the end of life of people with disabilities (NSW Ombudsman [25] ). It has been previously recognized that people with intellectual disability are likely to receive poor quality of care within the mainstream health sector across their lifespan (Scheepers et al.[34] ; Emerson & Hatton [17] ; Iacono et al. [22] ) and specifically during end of life (Tuffrey ‐ Wijne, Hogg, & Curfs, [43] ; Tuffrey ‐ Wijne, McEnhill, Curfs, & Hollins, [44] ; Tuffrey ‐ Wijne, Whelton, Curfs, & Hollins, [45] ; Wiese et al., [54] ; Wiese, Dew, et al.,[53] ). However, there is limited local research regarding access to end ‐ of ‐ life care services for people with intellectual disability (Wiese, Stancliffe, et al., [55] ) and particularly for individuals who reside outside of metropolitan locations (Wark, Hussain, & Edwards, [47] ). Without knowledge of the types of support services being accessed, what barriers to access are evident and what models are valued, recommendations to address the concerns of the NSW Ombudsman and to improve the implementation of the NDIS remain difficult to quantify.

In response to the identification of these issues, this article reports upon the data collated from seven focus groups from rural and metropolitan areas of New South Wales and Queensland in Australia, with a specific focus on the staff’ perceptions of the strengths and barriers associated with health service access. It is part of a larger project designed to gain the direct input of support staff in both rural and city locations who have assisted individuals with intellectual disability during their end of life.

To gain direct input from care staff across a diverse geographic area of both metropolitan and rural locations, a focus group interview model (Morgan 1998) using a thematic analysis methodological approach (St John, [37] ) was chosen as the research framework. A semistructured interview guide was developed prior to commencement to assist with initiating group discussions regarding end ‐ of ‐ life care support for people with intellectual disability. Examples of initiating questions include “Do you use any health ‐ care services to help support someone requiring end ‐ of ‐ life care?”, “What support do they get from doctors or health professionals?”, “What is good in the health ‐ care services you use?”, “What could be better about the services you use?” and “Are there any barriers to accessing health ‐ care services?”; however, the interactions between group members ultimately guided each discussion. Formal ethical approval for this project was provided by the University of New England's Human Research Ethics Committee.

The target participants for the focus groups were paid disability support staff who worked in either NSW or Queensland, Australia, and who had provided end ‐ of ‐ life support to an individual with an intellectual disability. A purposive sample using a typical ‐ case model approach (Palys, [26] ) was selected to ensure representation of both rural and metropolitan locations and that participants had been directly involved in the provision of end ‐ of ‐ life care.

Consultation with a steering committee composed of people with intellectual disability, carers and service providers provided a list of six suitable sites, two metropolitan and four rural, and appropriate disability support organizations within these locations. This range of settings was nominated as it was perceived that there may be differences in responses based upon the relative size of the community and access to healthcare services. Therefore, the selected sites included two smaller rural towns (population of up to 15,000 people), one small rural city (between 15,000 and 50,000 people), one regional centre (between 50,000 and 150,000 people) and two metropolitan locations (over 1 million people). The two metropolitan locations represented an innercity suburb and an outercity region. Two smaller rural towns were included as it was initially thought recruitment may be harder in these locations.

Members of the research team directly approached each of the nominated disability organizations to recruit voluntary participants for a focus group at that location. Approval for recruitment was given by each of the organizations, which then internally distributed an information sheet to all staff who met the criteria of having provided end ‐ of ‐ life care support to people with intellectual disability. Subsequent information sessions conducted by the researchers were held at each location, with interested participants then invited to immediately take part in a focus group.

It was predetermined that each focus group should have between four and twelve individuals (Sim, [36] ), with a preference for smaller groups to facilitate meaningful discussion between all participants. The date and time for the focus group interviews were determined in consultation with the disability organization. In the regional centre, a second focus group was conducted later on the same day to ensure all interested individuals could participate, which resulted in seven separate focus groups across the nominated six locations. Each focus group was moderated by a member of the research team, with administrative and technical support from a second researcher. Participants were advised that the focus group interviews would take between 30 mins and an hr; however, there was potential to extend beyond that timeframe if the participants wished to continue. After gaining approval from all participants, each focus group interview was recorded on two digital devices, and the researchers completed a field ‐ note summary after each session to assist with transcription and interpretation.

All data were independently transcribed, with pseudonyms allocated to each participant. Thematic analysis based upon the approach of Braun and Clarke ([8] ) was undertaken by members of the research team, with coding assigned to reflect participants’ experiences of mainstream and specialist healthcare sectors. Three members of the research team began by familiarizing themselves with the data from the seven focus groups and then established initial thematic codes. Following this preliminary review, discussion took place between the researchers to agree upon a coding structure for the full analysis. Members of the research team then undertook the full thematic analysis using this coding structure to refine the data into thematic areas.

Any disagreements were resolved through discussion; a fourth member of the research team was nominated to act as an independent arbiter if agreement could not be reached but this step was not required. Themes were identified across the collated data from the seven focus groups with a goal of identifying patterns and important issues associated with healthcare access for people with intellectual disability during end of life. While it is argued that the frequency of an issue being mentioned does not necessarily align with the importance of the issue (Braun & Clarke, [8] ), a frequency analysis on the number of statements relating to health service access issues was conducted to provide further insight regarding potential differences between locations.

As part of member checking, a draft version of this paper was provided to four focus group participants. They were asked to assess whether it accurately reflected their perceptions and perspectives, with specific reference to the concepts of credibility and usefulness (Charmaz, [10] ). All four did not identify any discordance or recommend any changes.

To facilitate continuity and ease of reading, the results and discussion sections have been combined, with recommendations and conclusions then following.

A total of 35 individuals participated in seven focus groups across the six locations. The average duration of each focus group was one hour (mean: 61 mins; range: 31–73 mins). There was an average of five participants, with a range between four and seven participants. In response to individuals’ concerns, demographic data such as age and educational background were not recorded for each participant to ensure confidentiality of responses. However, it was verbally confirmed in each focus group that participants had supported an individual during end of life and were still actively working in the disability field. Overall, the focus groups had a significant gender bias [24 females to 11 males]; however, this ratio generally represents the gendered nature of Australia's disability workforce (Martin & Healy, [24] ). The strategy of recruiting across four rural and two metropolitan locations resulted in an imbalance in the overall participation rates with 13 metropolitan and 22 rural participants.

A comparison of the rural and metropolitan data was undertaken by the research team to gauge whether there were any major differences in reporting of issues. This review indicated that there was no significant disparity, with the exception of physical access to specialist healthcare services. The focus groups in all four rural locations were more likely to report difficulty in getting appointments and timely support from specialists than the metropolitan sites. This issue will be reviewed in greater detail in the following sections. The frequency analysis of the transcribed focus group data indicated that there were 262 separate statements across the seven focus group interviews relating to the health services experiences of people with intellectual disability during their end of life. This represented an average of 37 statements per interview. A direct comparison indicated that metropolitan groups had a mean of 36 statements about health services, while rural groups were similar with an average of 38 statements. There were similarly no discernible patterns between the four rural areas.

The thematic analysis of the overall data identified four key thematic areas. These thematic categories included “isolation,” “support from doctors,” “general health support access” and “internal staffing issues.” These issues are discussed sequentially below. To protect the confidentiality and anonymity of both participants and individuals with intellectual disability, all potentially identifiable details have been removed from direct quotes and replaced with a string of asterisks (*). For reasons of space, some of the selected quotes are from one individual, but were chosen as being representative of the wider discussion undertaken within the focus group. To provide context to the reader, a pseudonym, gender and geographic identifier for each quoted participant are included.

Isolation, defined in this context as an inability to access desired and necessary support, was identified as a major problem within all focus group interviews. The term “isolation” was chosen as best reflecting the frustration staff expressed in being aware of the existence of support services, but then being unable to access them consistently or when needed. This theme was exemplified by discussion within a small rural town focus group, where Carolyn [female] described a situation where “we knew that we couldn't actually provide that to our clients….when we went looking for