Does talking about end of life with adults with intellectual disability cause emotional discomfort or psychological harm?

BACKGROUND: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. METHODS: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and comparison (n = 20) participants with intellectual disability. End-of-life 'encounters' (conversations/activities about end of life) were monitored, including comfort ratings. RESULTS: Overall, 79% of encounters were rated very comfortable/somewhat comfortable. Participants initiated 69% of encounters. There was no significant pre-post change in depression or fear of death. Anxiety improved significantly. CONCLUSIONS: This is the first controlled, longitudinal study providing robust evidence about whether discussing end of life leads to emotional discomfort or psychological harm. Data showed adults with intellectual disability can safely engage in conversations/activities about end of life. The high percentage of participant-initiated encounters showed participants wanted to talk about end of life.

Facilitating personal development for public involvement in health-care education and research: A co-produced pilot study in one UK higher education institute.

BACKGROUND: Public involvement in the education of students enrolled on higher education programmes has gained impetus. For students enrolled on professional health-care programmes and health-related modules in the UK, there is also a requirement by professional bodies to include "service user" involvement in preparation for entry to a professional health-care register and continuing professional development. Actively involving patients and members of the public in research is also a requirement by many research funders. In this article, the term Patient and Public Involvement (PPI) will be used throughout to include lay members, volunteers, user and carers. OBJECTIVES: A unique pilot study was introduced across a health faculty to integrate PPI in a deliberate way. It aimed to provide an educational, focused programme of events that was meaningful to develop and inform peoples' knowledge, skills and confidence for their involvement in the health faculty. DESIGN: PPI members volunteered to sit on a steering group to determine the educational journey; the outcomes of three focus groups with PPI members (N = 32) and academics informed the programme content which included a range of workshops covering the exploration of public roles and barriers to involvement, introduction to research and interviewing skills. RESULTS: The workshops were well attended, and outcomes indicated the importance of co-production when designing, delivering and evaluating programmes. DISCUSSION: Co-production underpinned this pilot study, resulting in a programme which was meaningfully received by public contributors. RECOMMENDATIONS: Co-production was seen as integral to this research to ensure that outcomes were indeed "fit for purpose".

Supporting people with an intellectual disability and dementia: A constructivist grounded theory study exploring care providers' views and experiences in the UK.

BACKGROUND: There is a need to better understand the experiences and support needs of paid and family carers of people with an intellectual disability and dementia, and the role of Intellectual Disability Dementia Care Pathways (IDDCPs). This study explored the experiences of carers, and IDDCPs and other support structures within those experiences. METHODS: A constructivist grounded theory methodology was implemented. Data were obtained through 23 semi-structured interviews with two family carers, eight paid carers and eight healthcare professionals. FINDINGS: The study's theory produced five interrelated categories: Impact of Dementia, Challenging the Diagnosis Process, Continuum of Support, Continuity and Continuum of Understanding. CONCLUSIONS: Findings have demonstrated the importance of planning and supporting carers' holistic needs; the role of an IDDCP in the post-diagnostic support (or lack of it) for carers; and the importance of a timely diagnosis of dementia. Recommendations for practice are offered.

Last months of life of people with intellectual disabilities: A UK population-based study of death and dying in intellectual disability community services.

BACKGROUND: Population-based data are presented on the nature of dying in intellectual disability services. METHODS: A retrospective survey was conducted over 18 months with a sample of UK-based intellectual disability service providers that supported over 12,000. Core data were obtained for 222 deaths within this population. For 158 (71%) deaths, respondents returned a supplemented and modified version of VOICES-SF. RESULTS: The observed death was 12.2 deaths per 1,000 people supported per year, but just over a third deaths had been deaths anticipated by care staff. Mortality patterns, place of usual care and availability of external support exerted considerable influence over outcomes at the end of life. CONCLUSION: Death is not a common event in intellectual disability services. A major disadvantage experienced by people with intellectual disabilities was that their deaths were relatively unanticipated. People with intellectual disabilities living in supported living settings, even when their dying was anticipated, experienced poorer outcomes.

How might organisational institutionalism support the challenges of the modern hospice?

The external environment within which UK charitable hospice care operates is changing. More people are dying with conditions other than cancer; however, this disease still dominates modern hospice care. Organisational institutionalism offers a theoretical lens through which to consider the challenges facing the hospice movement. Concepts such as legitimacy, decoupling, deinstitutionalisation, and reinstitutionalisation can help hospice leaders understand the challenges of change and some of the strategies that can be employed at local and national levels. This paper outlines a number of environmental and influencing factors driving and impacting change. A model of institutional change is introduced, explored, and considered from the context of hospice. When it comes to understanding change, legitimacy is a major concept introduced to challenge and pose questions for hospices to address. This paper proposes a model demonstrating a perspective regarding the current structure of services within hospice organisations. The model argues that only hospice care for people with cancer is truly institutionalised and that other areas of care lack comparable legitimacy. It provides 3 directions for hospice in addressing the challenges faced: (i) decoupling, (ii) deinstitutionalisation then reinstitutionalisation, and (iii) a new social movement. The paper concludes with recommendations for future consideration.

Encountering offenders in community palliative care settings: challenges for care provision.

BACKGROUND: There is very little research into the way that offender management strategies impinge on the practices and decision-making of palliative care personnel in community settings. AIMS: To improve understanding of the challenges that community palliative care service providers encounter when caring for people who have been sentenced to custody and are under the supervision of the prison or probation services. METHODS: This paper discusses one part of a larger multidisciplinary study on bereavement, loss and grief in the criminal justice system. It reports the findings from a focus group with 10 health professionals working within specialist community palliative care services. Thematic analysis was undertaken to identify and explicate the most significant themes arising from the transcript data. RESULTS: There were situations where the participants were able to identify that patients were under the jurisdiction of the criminal justice system or had relatives in custody. Three themes emerged that highlighted distinctive aspects of providing care to this patient group. These themes were: patients under prison, probation or police supervision altered the dynamics of care provision; prisoners were restricted from supporting or contacting their dying relatives in the community; and participants (professionals) were obstructed from supporting patients at home because of criminal or antisocial behaviour by relatives of the dying. CONCLUSIONS: Health professionals face multiple challenges that curtail them from fully realising the aims of palliative care for patients and relatives under criminal justice supervision, in ways that merit further consideration and research.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care.

BACKGROUND: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. AIM: To define consensus norms for palliative care of people with intellectual disabilities in Europe. DESIGN: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. SETTING AND PARTICIPANTS: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks. RESULTS: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted. CONCLUSION: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

Musculoskeletal pain in older adults at the end-of-life: a systematic search and critical review of the literature with priorities for future research.

BACKGROUND: Pain is an important issue in end of life care. Although musculoskeletal pain is common in older adults, it is rarely associated with the cause of death and may be overlooked as death approaches. Hence a major target for improving quality of life may be being missed. METHODS: The aim of this study was to systematically search and critically review the literature on musculoskeletal pain at the end of life. Amed, Cinahl, Internurse, Medline, Psych Info, Web of Knowledge and Cochrane review databases were searched for relevant research up to September 2012. The search strategy combined key words expanding the terms 'palliative' for population, 'musculoskeletal' for exposure, and 'pain' for outcome. Predefined inclusion and exclusion criteria were applied. RESULTS: Five relevant papers and one letter to the editor were found, including case studies and epidemiological research. Current evidence suggests musculoskeletal pain is common in older adults at the end of life and that it can have a substantial impact on individual experience. No information about community based treatment of musculoskeletal pain at the end of life was found. CONCLUSION: Priorities for future research include high quality epidemiological studies to establish the prevalence, natural history, impact, assessment, patient priorities and outcomes associated with musculoskeletal pain in the end of life period, and intervention research that provides an evidence base for treatment.

Using action research to design bereavement software: engaging people with intellectual disabilities for effective development.

BACKGROUND: Loss is a universal experience and death is perceived as the ultimate loss. The overarching aim of this research is to produce a qualitative, flexible, interactive, computerised tool to support the facilitation of emotional expressions around loss for people with intellectual disabilities. This paper explores the process of using Participatory Action Research (PAR) to develop this tool. MATERIALS AND METHODS: Participator Action Research provided the indicative framework for the process of developing a software tool that is likely to be used in practice. RESULTS: People with intellectual disability worked alongside researchers to produce an accessible, flexible piece of software that can facilitate storytelling around loss and bereavement and promote spontaneous expression that can be shared with others. CONCLUSION: This tool has the capacity to enable individuals to capture experiences in a storyboard format; that can be stored; is easily retrievable; can be printed out; and could feasibly be personalised by the insertion of photographs.

Hospice nurses' perceptions of caring for patients with a non-malignant diagnosis: a single-site case study.

In the early stages of its development in the UK, palliative care focused almost exclusively on the care of patients with cancer, with efforts concentrated on relieving distressing physical symptoms in the last few weeks of life-often referred to as terminal care. It is increasingly expanding to include non-malignant conditions, but is still predominantly accessed by cancer patients. This paper presents findings from a small-scale qualitative study into nurses' experiences of providing hospice care for patients with a non-malignant diagnosis. Two focus groups were conducted with nurses in one established UK hospice. The results highlight the importance of timely educational preparation, the need for proactive thinking regarding the shifting medical profiles of health care in the UK, and the need for hospice managers to critically consider existing infrastructures (including supervision and support) in anticipation of diverse patient populations. The paper also reiterates that collaboration remains the key to effective support.

Critical reflections on end-of-life care for people with intellectual disabilities: a single case study approach.

People with intellectual disabilities (ID) are enjoying increasing longevity, but are simultaneously having to cope with the additional health problems associated with ageing. Even though people with ID are reported to have worse health than the rest of the population, resulting in greater health-care needs, they also have poorer health care than the average person, including including-end-of-life care. The aim of this paper is to explore the challenges to providing effective end-of-life care for a person with an ID by using critical reflection from a nursing care perspective on an illustrative case study. Death never occurs in a vacuum but rather occurs in a social context, and the social context here was crucial to providing appropriate end-of-life care. It is hoped that the paper will promote discussion both around end-of-life care generally and in relation to this marginalized population.

The involvement of users and carers in health and social research: the realities of inclusion and engagement.

In this article we explore the challenges to researchers intending to involve vulnerable populations in health and social care research, and provide evidence-based recommendations to support the proactive inclusion of these populations in the research process. We provide a rationale for the study, followed by the introduction and descriptions of our research experiences (presented as two case studies) to provide a contextual backcloth for the discussion.We highlight the inherent challenges in empowering vulnerable populations in research, based on the combination of our own and other people's experiences. Collectively, these illustrate and underpin practice issues, relate theory to practice in a meaningful way, and facilitate the recognition of the realities in future development in this important area of involving users and carers. We conclude by providing recommendations for future practice and research development from a wider, international perspective.

Accessing vulnerable research populations: an experience with gatekeepers of ethical approval.

Accessing vulnerable populations for research purposes can be difficult, as participants must be sheltered from research that might be insensitive, intrusive, and potentially distressing. People diagnosed with a life-limiting condition may be vulnerable, and involving such people in research samples may be fraught with difficulties. Nevertheless, it is important that these vulnerable populations participate in health and social-care research so that their requirements and opinions can be learnt. This paper describes an experience of proceeding through an ethical approval process for a proposed qualitative research study into the preferred place of death of a group of potentially vulnerable hospice patients. Research of this nature had never been undertaken at the hospice before, and the researchers expected to encounter a degree and variety of gatekeeping when seeking access to this sensitive population.

Identifying, documenting, and reviewing preferred place of death: an audit of one UK hospice.

BACKGROUND: Current UK health-care policy suggests that good end-of-life care includes choosing a place for death. This paper examines the extent to which patients' preferred place of death (PPD) is identified, documented, and reviewed in one UK hospice. METHOD: A total of 150 case notes were audited using a data capture form. Case notes of patients who died in January 2008 (n=50), January 2009 (n=50), and January 2010 (n=50) were accessed during September-November 2010. The data are presented using descriptive statistics. RESULTS: PPD was documented in 28 cases (18.6%), conversations about end-of-life preferences were documented in 16 cases (10.6%), and preferences were reviewed in 6 cases (4%). Of the 28 patients whose preferences were documented, 25 (89.2%) died in their stated place of choice. CONCLUSIONS: Rates of PPD identification, documentation, and review were low at this hospice. This raises further research questions about how and why end-of-life choices are being made.

Evidence and practice: a review of vignettes in qualitative research.

BACKGROUND: Developing and working through a PhD research study requires tenacity, continuous development and application of knowledge. It is paramount when researching sensitive topics to consider carefully the construction of tools for collecting data, to ensure the study is ethically robust and explicitly addresses the research question. AIM: To explore how novice researchers can develop insight into aspects of the research process by developing vignettes as a research tool. DISCUSSION: This article focuses on the use of vignettes to collect data as part of a qualitative PhD study investigating making decisions in the best interests of and on behalf of people with advanced dementia. Developing vignettes is a purposeful, conscious process. It is equally important to ensure that vignettes are derived from literature, have an evidence base, are carefully constructed and peer-reviewed, and are suitable to achieve the research's aims. CONCLUSION: Using and analysing a vignette enables novice researchers to make sense of aspects of the qualitative research process and engage with it to appreciate terminology. IMPLICATIONS FOR PRACTICE: Vignettes can provide an effective platform for discussion when researching topics where participants may be reluctant to share sensitive real-life experiences.

The Liverpool Care Pathway in intensive care: an exploratory study of doctor and nurse perceptions.

The Liverpool Care Pathway (LCP) provides an evidence-based framework of care for the dying patient and provides guidance on comfort measures, discontinuation of inappropriate interventions, anticipatory prescribing, holistic care and care of the family after death. End-of-life care is becoming an important issue in critical care, and the LCP has been adapted for use in intensive care units in the United Kingdom. A qualitative study using descriptive phenomenology was used to explore doctor and nurse experiences of the impact of the LCP in two intensive care units in a 1000-bed teaching hospital in the north-west Midlands. The staff experience of the LCP was dependent on their role, with mixed reports about frequency of use and level of education received on the LCP. Education and adequate support was identified as being pivotal to the successful implementation of any type of LCP.

Exploring the needs of hospice staff supporting people with an intellectual disability: a UK perspective.

As the English National Health Service (NHS) celebrates its 60th anniversary, the challenges of providing equal access to health services for all remain numerous and complex. For certain groups in society, accessing appropriate, quality health care may be fraught with difficulties. While people with an intellectual disability (ID) may have additional health-care needs, they often struggle to acquire the health care they require, particularly when they have a life-limiting condition. This article introduces a qualitative research study conducted in a North Staffordshire hospice. This study explored the hospice staff's perceptions of their own professional needs while caring for a person with an ID who required palliative or terminal care within the hospice setting. This article will define the population involved, explore the literature which provides a contextual backdrop against which the research sits, introduce the methods and procedures used, and describe and discuss these findings in relation to the palliative care provision for people with an ID from a hospice perspective. It concludes by recognizing that appropriate education and training remain essential preparation for hospice workers when caring for someone with an ID. This article should be of interest to clinicians in both palliative care and ID services, to managers and providers of such services, to those educators keen to maintain contemporary palliative care practice, and to researchers.

End-of-life care in intellectual disability: a retrospective cross-sectional study.

BACKGROUND: Adults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown. AIM: To describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population. DESIGN: Nationwide population-based postbereavement survey. PARTICIPANTS: 38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths. RESULTS: Decedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population. CONCLUSIONS: Access to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.