Jurnal Paliatif Care.pdf

British Journal of

Learning Disabilities The Official Journal of the British Institute of Learning Disabilities

ORIGINAL ARTICLE

Surveying community nursing support for persons with an intellectual disability and palliative care needs Maria Bailey, Owen Doody and Rosemary Lyons, Department of Nursing and Midwifery, University of Limerick, Limerick, Ireland (E-mail: [email protected])

Accessible summary

• People with intellectual disability live within their community and will require • •

Summary

services to support them at end of life. Often people with intellectual disability are denied access to essential services. This paper identifies the experiences of community nurses caring for persons with an intellectual disability and palliative/end-of-life care needs.

Palliative care services have developed over the years to support all persons with life-limiting conditions. Moreover, services for people with an intellectual disability have moved from the traditional institutional setting to supporting people with an intellectual disability to live in their own community and family home. The expansion of palliative care services and integration of people with intellectual disability into their communities has resulted in an increased demand and greater diversity in the population groups accessing palliative care services. This study aims to describe the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs from the perspective of community nurses. A quantitative descriptive cross-sectional survey was employed. On receipt of ethical approval, data were collected through self-reporting questionnaires and descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents using SPSS version 18. Only 85 people with an intellectual disability were referred to palliative/end-of-life care services over a 3-year period. Those delivering care expressed challenges including, understanding communication styles, late referrals, lack of time, knowledge and skills. Highlighted within the study were the benefits of liaison between family and professional and nonprofessional carers. Findings provide insight into the importance of teamwork, advance planning, knowing the person and best practice in providing palliative/end-of-life care for people with intellectual disability through collaboration. Keywords

doi:10.1111/bld.12105

Access, end-of-life, intellectual disability, palliative care, referral

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Introduction Palliative care services strive to support patients and their family’s quality of life through the prevention and relief of suffering by early identification, impeccable assessment and treatment of physical, psychological and spiritual symptoms (World Health Organisation – WHO 2002). Since its origins, palliative care providers have broadened their services to support all persons with a life-limiting illness regardless of diagnosis (WHO 2002). Internationally, the broad scope of palliative care services aims to provide palliative care according to the level of need regardless of diagnosis and has resulted in an increase in the numbers of patients accessing such services. In addition, changing demographic trends including an ageing population, increased life expectancy for individuals living with lifelimiting illnesses and the impact of illness on individuals’ physical, psychological and social well-being means that the demand for high quality palliative care services is expected to increase (Williams et al. 2010). In the Irish context and coinciding with such developments, Ireland has witnessed an increase in population diversity (Doody & Doody 2012). Such diversity places a greater emphasis on services to provide care appropriate to the needs of the individual and their family with one such population group being persons with an intellectual disability. Ireland, in tandem with the internationally identified phenomenon of an ageing population and changes in life expectancy for persons with an intellectual disability (Kelly 2012), is witnessing a change in the demography of this population group. This change has seen a rise in the older population of people with an intellectual disability of 20% since 1974 with 7677 persons aged between 35–54 and 3538 individuals aged over 55 in 2011 (Kelly 2012). This population increase is largely attributed to increasing numbers of people with an intellectual disability now living into old age (Haveman et al. 2010) and accordingly more likely to develop agerelated illnesses requiring palliative care. In addition, young people with intellectual disabilities, who have a life-limiting illness, are now frequently surviving due to advances in health care (National End of Life Care Programme 2011). With an increased life expectancy there follows a growing incidence of life-limiting illnesses such as cancer, chronic cardiovascular disease, chronic lung disease and dementia (Ellison & Rosielle 2008; McIlfatrick et al. 2011; Tuffrey-Wijne et al. 2007). In the younger age groups, improvements in neonatal and post-natal care has resulted in children with intellectual disability now living longer (Bittles et al. 2002). However, as these children live into adulthood, these young adults may experience longterm and unavoidable chronic conditions, which predispose them to an early death (Tyrer et al. 2007). Causes of death for people with an intellectual disability differ from

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the general population with leading cause of death in the general population identified as cancer followed by ischaemic heart disease and cerebral vascular disease (Doody et al. 2013a). However, for people with an intellectual disability, respiratory disease followed by cardiovascular disease related to congenital heart disease are the leading causes of death with cancer ranked lower (Cooper et al. 2004; Doody et al. 2013a). In 2011, a total of 27 324 people with an intellectual disability were registered on the National Intellectual Disability Database [NIDD]. Of those registered, 8214 (30.1%) were living within full-time residential services, 17, 916 (65.6%) living at home with family compared with 16, 341 (61%) in the 2001 National register figures while the remaining people were living in community group homes (Kelly 2012). This intellectual disability demography reflects Government policy and legislation with a move away from the traditional hospital/institutional care approach (Doody 2012) which is directed towards supporting the person in his/her community (Health Service Executive – HSE 2011). Given this focus on independence and community living for persons with an intellectual disability, it is of concern that services are not consistently designed to assist the person to live within their community and there appears to be a trend towards returning persons to intellectual disability institutional care settings for palliative/end-of-life care. This approach opposes the principles of normalisation and social role valorisation (Wolfensberger 1983), which are closely aligned with philosophies of palliative care and Irish Health Care Policy (HSE & Irish Hospice Foundation 2008; Sinclair 2007). Evidence exists that despite an emphasis on reducing inequalities in palliative care (National Institute for Clinical Excellence 2004), personal, professional and practical misunderstandings persist which create barriers both to access and within palliative care services themselves for marginalised groups such as individuals with an intellectual disability (Bekkema et al. 2014). Therefore, service providers are challenged to improve community management of common and disabling illnesses of later life (HSE 2007). In Ireland, current home help and public health nursing capacity is frequently under-resourced to meet the needs of palliative care patients in the community (HSE 2009). This under-resourcing arguably results in many people with an intellectual disability and palliative care needs being denied access to community resources and services, resulting in a pattern of return to a hospital/ institutional care approach. This pattern is beginning to emerge in the research literature (Chowdhury & Benson 2011; Kerins et al. 2010). However, further inquiry is required to determine current practice. This paper presents research into the incidence and experiences of community nurses caring for persons with an intellectual disability and palliative/end-of-life care needs.

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Method Aim The aim of the study was to describe the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs in one HSE region in Ireland.

Research design An exploratory descriptive survey utilising a cross-sectional self-reporting questionnaire was selected for its ease of use by respondents with the added advantage for coding and usage with computer analysis packages (Bryman 2004; Parahoo 2006). Reliability and validity of the instruments were addressed by piloting the questionnaire (n = 10) to determine whether questions were clear and unambiguous (Coughlan et al. 2007) and an expert review panel (statistician, quantitative researcher, two Palliative Care Clinical Nurse Specialists and a senior researcher) verified face validity of the instrument and assured usability. Based on feedback from the review panel, minor revisions were made to the wording of individual questions. Ethical approval was granted by the University Research Ethics Committee and consent was implied through return of the completed questionnaire. Drawing on previous research (Ryan et al. 2010; Tuffrey-Wijne et al. 2008) and a review of the literature, a questionnaire compromising 26 open and closed questions was developed, piloted and reviewed by an expert panel. The questionnaires comprised of demographic details (Q1–8) of respondent, referral patterns (Q9–12), demographic details of patient/client group (Q13–16), support provided to patients (Q17–20) and professional support issues (Q21–26).

Participants and recruitment The sample consisted of a total population of Public Health Nurses (PHN), Community Nurses, Practice Nurses, Hospice at Home Nurses and Palliative Care Nurses, currently working in a HSE region in Ireland. Access to all nurses was gained through the relevant Directors of Nursing/Public Health Nursing. A research pack containing an invitation letter, information sheet, questionnaire and a stamped, addressed envelope was distributed to the sample population (N = 290). A response rate of 32% (n = 94) was achieved.

Data collection Questionnaire were distributed to a sample of 290 community nurses along with an invitation letter, information sheet and stamped, addressed envelope for return of the com-

pleted questionnaire. Participants were requested to return the questionnaire within 4 weeks, and an electronic reminder was distributed to community nursing services after 2 weeks.

Data analysis Data were analysed using SPSS version 18. Descriptive analysis was conducted to describe frequencies and to identify patterns of the respondents which are reported as statistical summaries. Qualitative data were analysed using Burnard (2011) thematic analysis framework. This involved six steps: taking memos after each interview, reading transcripts and making notes of general themes, repeated reading and generating open-coding headings to describe all aspects of the data, reducing the codes under higher order headings, returning to the data with the higher order codes and collating the organised data for reporting (Doody et al. 2013b). Two members of the research team reviewed the transcripts independently, and findings were compared and discussed until consensus was reached.

Findings Profile of respondents Of the respondents (n = 94), one respondent (1.0%) held a Registered Nurse Intellectual Disability (RNID) qualification, 80.9% (n = 76) had undertaken additional education in their relevant or specialist area. 77.6% (n = 73) held an educational qualification at degree level or above. Table 1 identifies demographic details of the respondents relating to their current role, experience and area of practice. Referral pattern 35.1% (n = 33) of respondents had cared for a person with intellectual disability and palliative care/end-of-life care needs in the last 3 years. 61 (64.9%) respondents had not cared for a person with intellectual disability and provided their reasons for this (Table 2). Table 1 Demographic detail of respondents Current role

Years’ experience

Area of practice

Staff Nurses: 32.1% (n = 27)

1–5 years (n = 33) 35.1% 6–10 years (n = 25) 26.6% 11–15 years (n = 11) 11.7% 16–20 years (n = 13) 13.8% 20+ years (n = 12) 12.8%

43.6% (n = 41) rural 41.5% (n = 39) urban 14.9% (n = 14) rural/urban

Clinical Nurse Specialists: 16.7% (n = 14) Clinical Nurse Managers: 6% (n = 5) Public Health Nurses: 26.2% (n = 22) Assistant Director of Public Health Nursing: 19%(n = 16)

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Table 2 Reasons had not cared for a person with intellectual disability Reason (more than one reason was permitted)

Percentage

No such referral has been made to your team There is a nurse in the team with specific skills and experience in palliative care and caring for persons with an intellectual disability and the patients/clients are referred to him/her I do not consider that you possess the necessary skills and experience to support a person with an intellectual disability and palliative/end of life care needs Other (The person was living in a care home n = 1, the GP did house calls n = 1, Manager role and no direct care/ caseload n = 5, person went back to intellectual disability service n = 3, don’t take intellectual disability referrals n = 2)

70.5% (n = 43) 1.6% (n = 1)

In the past 3 years, a total of 85 referrals for palliative/ end-of-life care were received by 33 nurses, 72.7% (n = 24) of which reported ≤2 cases, 18.2% (n = 6) having ≥ 3 ≤ 5 cases, 9.1% (n = 3) ≥9 cases. The majority of patients/clients were living at home with their family 61.2% (n = 52). A further 23.5% (n = 20) were living in community group homes, 8.2% (n = 7) living within intellectual disability services and 7.1% (n = 6) either living alone (n = 2), in a high support unit (n = 2) or a nursing home (n = 2). Of the clients referred, 68.2% (n = 58) were in the mild to moderate ranges of disability, while 28.2% (n = 24) were within the severe range and 3.6% (n = 3) had a profound disability. The age profile of the patient/clients referred identified 0–12 years 13.8% (n = 13), 13–19 years 11.7% (n = 11), 20–39 years 20.2% (n = 19), 40–59 years 28.7% (n = 27), 60–79 years 23.4% (n = 22) and 80+ years 2.1% (n = 2). Referrals were received from General Practitioners (GP) 37.7% (n = 32), intellectual disability services (residential and community services) 23.5% (n = 20), hospital consultants 15.3% (n = 13) and 23.5% (n = 20) from a range of services such as (hospital referral, combined palliative care team and general practice, mental health, children’s hospital, family member, Jack and Jill1 agency). Within the GP referral pattern, a ratio of 2:1 occurred between rural vs. urban referrals. Overall, the reasons for referral varied, and the reasons identified are presented in Table 3. Support provided Respondents reported a range of services provided to support the patient/client and the liaison aspect of their role with multiple team members and agencies. These included dietician, physiotherapists, general practitioners, pharmacists, day services, speech and language therapist, palliative care team, disability services, Enable Ireland,2 Jack and Jill, home help service, social welfare, acute hospital, 1

A voluntary organisation supporting children with life-limiting conditions living at home.

2

A voluntary organisation supporting people with an intellectual disability and their family.

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13.1% (n = 8) 19.7% (n = 12)

Table 3 Reasons for referral Reason for referral

Examples provided

Support

To provide information and support to the family To support and advise staff To establish and coordinate services To assist in setting up a twilight nursing service in the home Care provision and symptom management Consulting and referrals within the team Nursing advice – pressure relief and skin care Assessment of client Diet and nutrition management Providing nursing care in the home Support patient/client/family choice Providing palliative care Hospital/hospice referral General management of care at end of life

Nursing

End-of-life care

private nursing agency and early intervention services and the range of supports provided is shown in Fig. 1. Of the referrals received for palliative/end-of-life care, 71.8% (n = 61) of patients/clients remained within their home and received support until death. 10.6% (n = 9) were admitted for inpatient care in hospice, 10.6% (n = 9) were referred back to a residential services for people with intellectual disability for care provision and 7% (n = 6) were admitted to a nursing home. Respondents reported a number of factors that they considered facilitated the caregiving process such as family support, teamwork, professional attributes and skills, previous experience of intellectual disability, knowing the patient/client and supportive professional carers within the intellectual disability services. In addition, respondents noted factors that hindered the palliative care-giving process such as lack of education, lack of understanding, lack of confidence, communication skills and lack of resources (Table 4). Professional support issues Within the survey, the professional support section was open to all respondents whether or not they had cared for a person with intellectual disability and palliative/end-of-life care needs. In total, 147 responses were received from the open questions. In relation to the educational support

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Support provided 84.8

90

84.8

80

Frequency

70

57.6

60

51.5

50

39.4 33.3

40 30

15.2

20

12.1 3.0

10

0 e)

on

e

ad

vic e

(N igh tti

tv gh Ni

m

isi

ts

he r Ot ph le Te

Te

Nu rs in gc P le r ar a ph ct e ica on la e ad dv vic ice e ( D Em ay tim ot i o Sy e) na m ls pt up om po m Re rt an fe ag ra em ll t o en ot t he ra Cr g isi en si cy nt er ve nt io ns

0

Range of support Figure 1 Range of supports provided.

Table 4 Factors that facilitate and/or hinder care giving Theme

Facilitating care giving

Hinders care giving

Family involvement and support

Family cooperation and understanding Recognition that the family know the person best. The openness of the family to develop a working relationship with healthcare professional Past experience and care episodes of working with people with intellectual disability and their family/s Development of understanding and skills (non-verbal, observational) Support for team members and colleagues Collaboration, co-ordination and co-operation between all care providers Shared responsibility Recognition and acceptance of the need for palliative care support within the intellectual disability service Willingness of intellectual disability staff to share their knowledge and skill to support palliative care service Knowledge of services available and access that service Humanistic approach – listening, communicating, advising, kindness, awareness, honesty, caring, understanding, sincerity Recognising resources – long term carers of the patient/client. Building a relationship and sharing the journey Building trust of the client and the family Early referral and advance planning

Lack of cooperation from the family member/s Uncertainty causing over protective family member/s

Previous experience of intellectual disability

Teamwork and collaboration

Supportive professional carers in intellectual disability services

Personal attributes

Knowing the person

required to facilitate caring for people with an intellectual disability and palliative/end-of-life care needs, 2.1% (n = 2) respondents reported not having any educational need at present; however, 87.2% (n = 82) identified requiring such

Limited education Lack of understanding and lack knowledge of intellectual disability (specific conditions) Absence of critical team members Decision making processes within organisations and family/s Delay in recognition of transition to end of life Delay in referral to palliative services for end of life care

Fear due to lack of knowledge, education and experience Lack of confidence in communicating with a person with intellectual disability Poor referral information Delayed referral and lack of advanced planning Interpreting communication differences of people with intellectual disability

support in developing understanding and communication skills when working with persons with an intellectual disability. Additionally, 64.9% (n = 61) of respondents requested palliative care education and 76.6% (n = 72) of

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respondents required education regarding the specific health needs of persons with an intellectual disability. The use of sign language was identified by 3.2% (n = 3) as a tool that would effectively support nurses in caring for this patient group. Respondents identified their preferred educational delivery format and mode of educational delivery as in-service education with lectures/workshops scoring highly (Table 5). In addition, the professional support section comprised of three qualitative questions that allowed respondents report on how their role could develop to support people with intellectual disability and palliative/ end-of-life care needs and on resources they considered would facilitate them caring for a person with intellectual disability and palliative/end-of-life care needs. Additionally the open questions allowed for comment on any other aspect of care provision for a person with intellectual disability and palliative/end-of-life care needs. While the questionnaire surveyed the supports that would facilitate and hinder the nurse in caring for a patient/client with an intellectual disability with palliative/end-of-life care needs, the open ended questions captured respondents’ opinions which may have been overlooked or unknown to the researchers in the construction of the questionnaire. While similarities to questionnaire responses were noted, new information was generated and captured in the following three themes: education, communication and collaboration, access to and availability of resources. Education Respondents described several formats through which they might access additional education to support their practice, including in-service and further education in both the areas of intellectual disability and palliative care. Lectures, workshops, university modules and distance learning programmes were reported as a means of accessing these educational supports. Respondents further identified that the education provided should be appropriate to the patient/client needs and practical aspects should be considered to achieve this appropriateness. Table 5 Educational delivery format and mode of delivery Educational delivery format In-service education Workshops University module Conference/ seminar Distance learning University programmes

Mode of delivery 74.5%, n = 70

Lecturer

70.2%, n = 66

64.9%, n = 61 47.9%, n = 45 17%, n = 16

Workshops Distance learning Blended learning

70.2%, n = 66 11.7%, n = 11 9.6%, n = 9

3.2%, n = 3 2.1%, n = 2

Online learning Journal club

8.5%, n = 8 5.3%, n = 5

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Appropriate education is needed that is tailored to the person with intellectual disability and palliative care, but we need to be supported to develop our own approach to the clients and develop our understanding of their condition and fears and of existing intellectual disability services In addition to this education and practice need, respondents identified exposure and experience of caring for a person with an intellectual disability as an important component of role development. More exposure to clients with intellectual disability would give a greater understanding of needs and their family’s needs and help use understanding their disability more. Respondent acknowledged the untapped resource of local intellectual disability services where they could gain some practical and appropriate skills through exposure and experience. We have a wealth of resource here in that there is an intellectual disability sector which we should be tapping into and utilising more. Also noted was a need for education in developing the ability to communicate with persons with an intellectual disability. Workshops are needed to develop an understanding of communication methods and interpreting their needs, sign language is a measure that could facilitate caring for a person with an intellectual disability. It was suggested that in-service education in the area of intellectual disability and palliative/end of life care with opportunities to engage in e-learning activities should be supported. We need to use electronic learning; there are internet journals, online advice forums and networks that are updated regularly and easily interpreted providing advice on care. Public health/community nurses expressed a wish for additional learning opportunities and palliative/end-of-life care education. Staff need training in this field, it is a specialist area and can be quite complex, without the education staff can feel incompetent in this area creating concern and fear around medication and end of life care.

Communication and collaboration Effective communication skills were described as a key factor in supporting patients/clients with an intellectual

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disability and palliative end-of-life care needs. In addition, closer collaboration between both service providers was noted as a strategy to overcome some of the knowledge deficits and education needs described. If we develop closer working relationships and good communication processes with those specializing in care of patients/clients with an intellectual disability this would help and support us in our role. . ..we need a direct link with the intellectual disability nurses who know the client so well. Several respondents highlighted the value of knowing the patient/client particularly where there is an intellectual disability. This was described as significant to understand individual communication pattern, responses and behaviours. Such knowledge could be gained either through direct contact with the patient/client and family/carer or through communication and collaboration with intellectual disability care providers.

Access to and availability of resources Awareness, availability and accessibility to services in the community for persons with an intellectual disability and palliative/end of life care needs were a concern for respondents. The provision of palliative care to persons with an intellectual disability in the community is reliant on: ease of access and availability of resources at the time of need. Respondents suggested additional resources they considered would enhance support to this client group. Five resource categories were identified: physical aids, services including specialised services, time, advanced care planning and funding (Table 6). Woven into this tapestry of support is the requirement to be sensitive of all family member’s needs and wishes. Early referral and advanced care planning was highlighted as

Table 6 Resources required

Input and support from intellectual disability carers who know the person with intellectual disability offer increased opportunities to develop our understanding and we should be able to liaise with the intellectual disability clinical nurse specialist. Such collaborative working was identified as having the potential to reduce fragmentation of services.

Resource required

Respondents specified examples

Physical aids

Greater availability of physical aids Greater availability of equipment Wheelchair access to surgery Wheelchair aids Development of home care support Access to healthcare professionals Early intervention Easy access to acute hospital and reduced waiting times Respite services that are geographically accessible GP being more informed of services 24 h services to provide quality home nursing Extend community care services to all family members Access to specialist/expert palliative care services Community nursing services with nursing resources to support people who need end of life care Additional allocation of palliative care beds locally Availability of night nurses with experience in intellectual disability nursing for patients/clients at home CNS for intellectual disability/palliative care/end-of-life care More time allocated for visits More time for implement care planning Time for evaluation Discharge planning Early referral {to palliative care service} More information on patients/clients treatment/prognosis Knowledge about social history of family PHN to visit the patient/client in hospital prior to discharge Additional funding for nursing care at home in the end stage of life Information on family entitlements Respite

Services/Specialised services

Working together as a team would strengthen the services that sometimes can be fragmented, more communication between all would lead to greater awareness of what is happening to patient/client and be of greater support to all rather than waiting till things go wrong. To achieve closer collaboration and improved communication, shared documentation was identified as a means of developing interagency communication and supporting the patient/client and family through continuity and consistency of care. It would be helpful if client records were available to be utilised in home communications with the family and patient/client and insure they are always at the centre. Respondents emphasised the importance of a whole family approach and while this can be challenging it can also be a source of support for the nurse. Communication is often difficult with the patient/client therefore you involve the family during the visit as they can help you as they know the person well, but you need to consider their needs also be they a parent, sibling or other close family members and while you want to support then you have to know is it their need or the patients/clients need they are identifying.

Time

Advanced care planning

Funding

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essential to provide more time to develop a trusting relationship. It is difficult to get to know a family if you are only introduced at the end stage of life and you have to remember the patient/client is your focus so if it is very late you may be into pain management and have very little time to engage, support and build a relationship with the family.

Discussion Within this study, 61 (64.9%) respondents did not report caring for a person with an intellectual disability and palliative/end-of-life care needs. This needs to be considered in light of the fact that only 32% of the population surveyed responded and the probability is that those who did not respond had not experienced the phenomenon under investigation. This may indicate an even lower level of access; however, respondents may have underreported as they may have unknowingly supported a person with mild intellectual disability. Noteworthy within the findings is that of a population 7142 (26.1%) of people with an intellectual disability, in the HSE region surveyed (Kelly 2012), only 85 people were referred for palliative/end-of-life care in the last 3 years. This represents 1.2% prevalence for all lifelimiting illness within this population group. This is striking given that the incidence of life-limiting conditions in persons with an intellectual disability is higher than that of the general population and that the incidence of referrals to palliative care in the general population is approximately 2.5% (HSE 2013). In contrast, Stein (2008), in the United States, showed a greater usage of hospice services by persons with an intellectual disability, with an average of between 1 and 3 people being referred for palliative care to both hospices and community homes during a 1-year period. Murray et al. (2013) report that one of the reasons for referral to palliative care services in a general population is frequently for emotional and spiritual support, with respite for patients and families. Given the complex needs of people with an intellectual disability, it is a concern that respondents did not identify or report psychological and social support as a reason for referral. Evident within this study is respondents’ limited experience of caring for persons with an intellectual disability, and this is similar to (McCarron et al. 2010). This limited experience created issues for the respondents regarding communication, symptom assessment, difficulty determining patient understanding and knowledge of intellectual disability services. These factors are widely recognised within the literature (Cartlidge & Read 2010; Read & Thompson-Hill 2009; Stein 2008; Tuffrey-Wijne & McEnhill 2008;

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Tuffrey-Wijne et al. 2007, 2008). Furthermore, given that intellectual disability services are the main service providers for this patient group, it follows that they will increasingly have to plan for end-of-life care (TuffreyWijne 2009) and it is noteworthy within this study that 71.8% (n = 61) of patients/clients remained within their home and received support until death. Intellectual disability services should therefore familiarise themselves with palliative care services so that they know when, where and who to contact for advice and support (Stein 2008; Tuffrey-Wijne et al. 2008). However, the literature has found that intellectual disability nurses, who provide day-to-day care report a lack of knowledge, feel unprepared to address palliative/end-of-life care, and indicate a need for specialised palliative care training and support (Cross et al. 2012; Fahey-McCarthy et al. 2009). It is therefore essential that both palliative/end-of-life care and intellectual disability service providers should have the appropriate knowledge, skills and attitudes towards death and dying which are crucial for professional carers particularly for this marginalised population (Read et al. 2007). Respondents in this study suggest that intellectual disability and palliative care disciplines are largely working independently of each other. Recognition of this phenomenon is encouraging in that it suggests a willingness to develop closer collaborative working practices, whereby the strengths of one discipline can counteract the challenges experienced by the other. McCarron et al. (2011) suggested that collaboration helps capitalise on each other’s expertise and that specialist’s from palliative care services and intellectual disability services working together is an important future direction of collaborative working. However, collaboration requires greater crosstraining to promote the development of a mutual understanding as to when and how to involve each other in the care process. Research has consistently shown that collaboration between intellectual disability services and palliative care services is crucial to ensure optimal palliative/end-of-life care for people with intellectual disabilities (Tuffrey-Wijne 2012). Although there is willingness for collaboration, such willingness alone is not sufficient to guarantee effective collaboration. Ryan et al. (2010) notes that while partnership working creates opportunities for cooperation and service improvement, clashes of professional interests and organisational culture may arise. Collaborative education offers the potential to demystify staff anxieties, fears and apprehensions when nursing persons with an intellectual disability and palliative/end-of-life care needs (Cartlidge & Read 2010). Collaborative education courses enhance the knowledge base and provide participants with opportunities to discuss practice issues together (Balasubramanian & Read 2012; Cross et al. 2012).

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Within this survey, respondents identified in-service education and workshops as a means to support their educational needs and suggested lectures as their preferred mode of delivery. However, given the current economic climate with employment embargos and nonreplacement of staff, the uptake of such educational programmes may be limited and unsustainable. de Vlieger et al. (2004) argue that professionals need a variety of knowledge and skills to provide comprehensive, multidisciplinary end-of-life care to the person and their family; therefore, service providers need to consider how best to support educational opportunities for staff through e-learning modules or programmes offered by universities. A strong relationship between organisations is required to forge effective alliances with those they serve (Fahey-McCarthy et al. 2009). The depth of the relationship within this alliance will predict how well clients’ goals are met. In addition, the recognition of shared goals can foster an alliance that allows residential care providers of people with an intellectual disability to collaborate with palliative care professionals to identify how they can work together to provide the highest quality care to patients at the end of life (Kirkendall et al. 2012). Discovering similarities in philosophies of care can foster mutual agreement concerning dynamics and the ways that complementary care can occur. The most fruitful realisation may be that each organisation/service would not be able to provide high-quality care without the assistance of the other (Kirkendall et al. 2012; TuffreyWijne et al. 2007).

Conclusion This study provided an overview of the provision of community nursing support for persons with an intellectual disability and palliative/end-of-life care needs in an Irish HSE region. Issues raised within this study include challenges in communicating with patients/clients, issues with pain and symptom assessment and the need to take time and gain the trust of the patient/client through a need for a collaborative approach. Most nurses in the survey had limited experience of caring for patients/ clients with an intellectual disability, and many felt that they lacked the knowledge and skills required to support this group of patients/clients. Respondents identified their intellectual disability nursing counterparts as a possible resource for support. Palliative/end-of-life care requires health professionals from different disciplines to work together for the patient and family using a collaborative model of care (McDonald & McCallin 2010). While the findings relate specifically to the palliative care context in one HSE region, the issues identified in this study are likely to be comparable to other palliative care services both nationally and internationally. As access to palliative

services appears limited, service providers need to find ways of redressing this balance. A good starting point would be to build links with intellectual disability services and it would be beneficial if the presence of an intellectual disability were documented at the point of first contact with palliative care services. This strategy would facilitate audit of referral and referral patterns for this population group. New developments, such as education programmes should be relevant to the provision of palliative care for persons with an intellectual disability. Future studies should include people with intellectual disability and their families/carers as informants; this is particularly important when evaluating the way in which palliative care is experienced and investigating the subjective views of the problems that people with an intellectual disability and their families/carers encounter. Families know the person best and their involvement should be acknowledged and valued as an integral and valuable part of care planning which results in a wealth of information that positively influences care provision (Hickman et al. 2007). Involving family, client and health care professionals optimises the opportunity for quality care where individual needs are met and a seamless service is provided for the client, thus safeguarding the health and well-being of the family as a caregiver unit (Jeon 2004).

Acknowledgements The authors acknowledge the support of The Irish Hospice Foundation for funding this study through the small grants scheme.

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