The role of psychologists in supporting illness-related dying and death: A systematic mixed studies review.

Psychologists remain underrepresented in end-of-life care, and there is limited understanding of their role among healthcare professionals, patients, and caregivers. This systematic mixed-studies review, prospectively registered on PROSPERO (CRD42020215775), explored the role of psychologists, and the facilitators and barriers they experience, in supporting clients with illness-related dying and death. A search of six research databases was conducted in October 2023. Fifty-one studies, mainly qualitative and from the perspectives of psychologists, met inclusion criteria. Thematic synthesis highlighted how psychologists provided expertise across various contexts. They supported clients with preparing for death, and adjusting to dying, provided professional consultancy and support, and undertook leadership in enhancing psychological end-of-life care. Results illustrated the sustaining factors and ongoing challenges working in end-of-life care, namely, the unique nature of navigating the death space, recognition and awareness of psychologists' contribution, and the support, training and development required. Given the universality of dying and death, this review is relevant to psychologists working within and beyond more traditional end-of-life care contexts, such as employee assistance programs, private practice, schools, and other psychological services. Policy, clinical and research implications are discussed, including the need for greater engagement and training of psychologists in the dying and death space.

Analysis of an Australian death database of people with intellectual disability living out of the family home: Place of death and associated variables.

This study reports on a five-year data set about the deaths of 599 individuals in New South Wales Australia, who at the time of their death were living in out-of-home care. Analysis aimed to: i) gain a clearer understanding of place of death for people with intellectual disability; and ii) identify and analyse associated variables to investigate how well they predict place of death for this population. Hospital admissions, polypharmacy and living situation were the strongest standalone predictors of place of death. A hospital death was more likely if the target population were subject to polypharmacy, lived in a group home, had a moderate intellectual disability or had GORD. Death, and place of death, is an issue requiring individual consideration. This study has identified some of the variables that need attention when supporting people with intellectual disability to have a good death.

Specialist palliative care staff's varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews.

BACKGROUND: The cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying. AIM: To explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations. DESIGN: An inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study. SETTING/PARTICIPANTS: Twenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability. RESULTS: Specialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers). CONCLUSIONS: Specialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

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.

The experience of mothers supporting self-determination of adult sons and daughters with intellectual disability.

BACKGROUND: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. METHODS: An interpretative phenomenological analysis (IPA) of eight individual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. RESULTS: Three superordinate themes were identified: (a) support context; (b) continuum of support roles; and (c) mother's personal concerns. CONCLUSION: Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.

A qualitative study of nurses' perspectives of caring for children with intellectual disability and their families in a paediatric acute care setting.

Children with intellectual disability (ID) experience chronic and pervasive limitations across intellectual and adaptive functioning. They are also at risk of developing co-morbidities. They are likely to be hospitalised more frequently and for longer periods of time than other children. The purpose of this study was to understand the experiences of nurses when caring for children and teenagers with ID in an acute paediatric hospital setting. The aim of the research was to inform future directions for the delivery of equitable and effective care for this vulnerable population. This study used a qualitative thematic analysis of individual interviews conducted with eight registered and enrolled nurses who provided care to children and adolescents with ID in an Australian paediatric acute hospital setting. Themes which emerged from this analysis were (1) Recognising similarities and managing differences; (2) Nurse-parent relationships; and (3) Caring for children with ID requires additional time. This study highlights that navigating care delivery and relationships when working with young people with ID and their caregivers in an acute care setting is complex. Nursing children with ID in hospital requires sophisticated skills. To ensure quality healthcare for patients with ID, a range of strategies are proposed.

Nurses working in intellectual disability-specific settings talk about the uniqueness of their role: A qualitative study.

AIMS: To explore the perceptions of Australian nurses working in disability-specific settings and/or roles, about: (a) nursing people with intellectual and developmental disability living in Sydney; and (b) the utility and applicability of professional practice standards designed specifically for intellectual and developmental disability nursing. DESIGN: A qualitative research design was used to guide the study and our analysis utilized the constant comparative approach to thematic data analyses. METHODS: Individual in-person interviews were conducted with 18 nurses working in intellectual and developmental disability-specific settings and/or roles across the state of New South Wales between July - December, 2017. Participants described what it is that sets intellectual and developmental disability nursing apart from other nursing specialties, and the rewards and challenges of their role. Questions were also asked about professional practice standards in general and more specifically intellectual and developmental disability professional practice standards. Data were analysed thematically. FINDINGS: Three themes reflected intellectual and developmental disability nurses' perceptions: (a) a unique investment in the nurse/patient dyad; (b) a bridge between disparate systems; and (c) an ambiguous future. Nurses reported variable understanding of professional practice standards designed for intellectual and developmental disability nursing, but also a belief in their importance. CONCLUSION: The intellectual and developmental disability nurses' experience of care accounts for the specific needs of patients with intellectual and developmental disability and suggests the importance of professional practice standards which acknowledge the changing landscape of care in Australia prompted by the implementation of the National Disability Insurance Scheme.

An exploration of the practice, policy and legislative issues of the specialist area of nursing people with intellectual disability: A scoping review.

The specialist field of intellectual disability nursing has been subjected to a number of changes since the move towards deinstitutionalisation from the 1970s. Government policies sought to change the nature of the disability workforce from what was labelled as a medicalised approach, towards a more socially oriented model of support. Decades on however, many nurses who specialise in the care of people with intellectual disability are still employed. In Australia, the advent of the National Disability Insurance Scheme offers an apt moment to reflect upon these decades of specialised nursing care as the context of this nursing care will continue to evolve. A review of the published literature was conducted to explore what has shaped the field in the past and how this might inform the future of this speciality area under new policy and service contexts. People with intellectual disability have specific health and support needs that require a specialised workforce. Specialist nurses continue to be needed for people with intellectual disability.

Understanding the contemporary role of the intellectual disability nurse: A review of the literature.

AIMS AND OBJECTIVES: To identify the specialist role/s that nurses perform and the specialist skills that nurses use when caring for people with intellectual disability. METHODS: Adhering to the "Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement," various subject headings were used to systematically search six electronic databases for articles published in English between 2000 and 2017. A total of 27 articles were reviewed. RESULTS: The literature demonstrates that similarities exist between the physical care delivered to people with intellectual disability and that delivered to people without intellectual disability. However, skills in the areas of communication, advocacy and person-centred care differ between these two groups. DISCUSSION: Our findings suggest that the skill set of the specialist intellectual disability nurse is not uniquely technical but it is uniquely relational that incorporate increased patience and resilience when developing relationships with the people they care for. CONCLUSION: This review has provided insights into the main differences in the skills required when working with people with intellectual disability compared to working with those without. However, minimal literature was identified that adequately describes what is unique about the performance of the role of specialised intellectual disability nurses-especially in Australia. RELEVANCE TO CLINICAL PRACTICE: Understanding the skills required of nurses caring for people with intellectual disability provides the opportunity for more nurses to develop these specialised relational skills and for this branch of nursing to attract professional recognition that is currently limited.

Choice and Control Within Family Relationships: The Lived Experience of Adults With Intellectual Disability.

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

Knowing, planning for and fearing death: Do adults with intellectual disability and disability staff differ?

BACKGROUND: Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. METHODS: We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. RESULTS: We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. CONCLUSIONS: We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.

End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.

BACKGROUND: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. MATERIALS AND METHODS: Focus groups and individual interviews were conducted, guided by grounded theory methodology. RESULTS: The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner. CONCLUSIONS: End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.

Intellectual disability and mental illness in the NSW criminal justice system.

There has been increasing international, national and local recognition of the need for more appropriate responses and services for individuals who come in contact with the criminal justice system and who have an intellectual disability and mental health issues. This article provides an overview of prevalence data that indicates a significant over representation of people with intellectual disabilities in correctional facilities and reviews the problems facing this population. Findings from two specific evaluation studies undertaken by the Centre for Developmental Disability Studies are presented, along with recommendations for future provision based on these results. One of these projects trialled a case management approach to supporting offenders with an intellectual disability upon their release from prison. The 20-month follow-up found that a number of serious barriers were encountered within the overall system of provision for this population; the most serious of which related to lack of adequate accommodation upon release. The second project involved a two-stage evaluation of one model of provision for individuals with intellectual disabilities who are sex offenders, only some of whom were on parole. This service provided both residential and therapy services in a small group home located in the community. Residents were found to have high levels of emotional and behavioural difficulties, in addition to offending behaviour, that continue to require support and supervision. Critical issues, including guardianship involvement, restrictive practices and retrieval, therapy provision, and risk management issues are discussed in relation to overall clinical and lifestyle outcomes.