Michele Wiese

Learning about dying, death, and end-of-life planning: Current issues informing future actions

Knowing about dying and death is a typical part of lifelong learning, gained through personal experience with the death of loved ones, popular culture, and formal education. Sudden and unexpected death aside, adults in the general community can use this knowledge to plan for the manner of their dying (Brinkman-Stoppelenburg, Rietjens, & van der Heide, 2014). Such planning might include will making, advance care planning, enduring guardianship, organ donation, and for some, decisions about the where and how of end-of-life care. People with intellectual disability, however, are often not afforded similar opportunities to learn about or plan for dying (Forrester-Jones, 2013; Wiese, Dew, Stancliffe, Howarth, & Balandin, 2013). The aim of this paper is to outline current thinking around the need for people with intellectual disability to learn about and understand dying and death. With assistance, people with intellectual disability are able to make major life decisions and plans, such as where and with whom to live (Stancliffe et al., 2011), employment, relationships, and marriage (Healy, McGuire, Evans, & Carley, 2009; Timmons, Cohen Hall, Bose, Wolfe, & Winsor, 2011), and so experience the dignity of self-determination, a basic human right (United Nations, 2006; United Nations General Assembly, 1948). It is unclear, then, why they are not routinely afforded similar self-determination about the end of life. People with intellectual disability should know about dying and death, and experience opportunity equal to other members of the community to plan for it (Wiese et al., 2013). Planning, however, requires having appropriate information (Huneke, Gupta, Halder, & Chaudhry, 2012), and there is mounting evidence that many people with intellectual disability have limited understanding of dying and death (Dusart, 2008; McEvoy, MacHale, & Tierney, 2012), few opportunities to learn about it (Ryan, Guerin, Dodd, & McEvoy, 2011b; Wiese et al., 2013; Wiese, Stancliffe, Dew, Balandin, & Howarth, 2014), and thereby restricted ability to plan for it. People with intellectual disability do not routinely learn about death as part of the natural life course, not if they themselves are dying, nor if others they care about are dying (Ryan et al., 2011b; Wiese et al., 2013; Wiese et al., 2014). This occurs against a policy backdrop in Australia recommending that people with disability should be told about their own dying, and have access to the processes equivalent to the general community so that they can plan for death (Ageing, Disability and Home Care,

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.

More, better, or different? NDIS workforce planning for people with intellectual disability and complex support needs

In Australia the disability sector is radically changing the way services are offered to people with disability under the National Disability Insurance Scheme (NDIS; National Disability Insurance S...

Workforce issues in the Australian National Disability Insurance Scheme: Complex support needs ready?

ABSTRACTAustralias implementation of the National Disability Insurance Scheme (NDIS) relies heavily on a skilled workforce, competent to meet the needs of scheme participants. This article raises concerns about NDIS workforce planning issues as they relate to people with intellectual disabilities and complex support needs. The article uses population level measures to estimate the likely significant presence of NDIS participants with intellectual disabilities and complex support needs, and summarises the predicted growth in the disability workforce. Using these data together with the research literature, a number of challenges to developing and maintaining the skills of the workforce are proposed. If the NDIS is to ensure a workforce ready to support participants with intellectual disabilities and complex support needs, these challenges require immediate action, the absence of which could mean the very real potential of market failure for this vulnerable group.

Assessing knowledge and attitudes about end of life: Evaluation of three instruments designed for adults with intellectual disability†

BACKGROUND This paper examines the development and psychometric characteristics of three instruments about end of life, designed for use with adults with intellectual disability (ID). Respectively, the instruments assess understanding of the concept of death, end-of-life planning, and fear of death. METHODS Part 1: instruments were developed or adapted, and pilot tested with 11 adults with ID and 2 disability staff. Part 2: 39 adults with ID and 40 disability staff were assessed on all three instruments. RESULTS We evaluated comprehensibility, internal consistency, inter-rater reliability, subscale: total score correlations, missing data, and withdrawal. Psychometric findings were mostly good. Overall, 23% of participants with ID withdrew at some point. This outcome may have been as much due to assessment fatigue as to sensitive content. There were no adverse events. CONCLUSIONS People with ID can reliably complete assessments about end-of-life. Generally, each instrument was found to be comprehensible, reliable and valid.

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.

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.

The experiences of parents in supporting their son or daughter with intellectual disability to learn about dying and death

ABSTRACT Background People with intellectual disability have a limited understanding of dying and death. The role of parents in developing the understanding of their son or daughter with intellectual disability about these concepts is unclear. This study aimed to explore parental experiences when talking with their son or daughter with intellectual disability about dying and death. Method Four participants were interviewed about how they discussed dying and death with their son or daughter with intellectual disability. Thematic analysis was used to interpret the findings. Results Parents did more than talk to their son or daughter about death; they involved them in dying and death experiences. Parents’ motivations influenced the way they included their son or daughter in these experiences. Conclusions The parents played an important role in providing learning experiences for their son or daughter with intellectual disability about dying and death.

Family relationships and support for self-determination : the lived experience of adults with intellectual disabilities

Aim: The health-related behaviours of people with intellectual disabilities (ID) are strongly influenced by cultural and social factors such as organisational context yet this has rarely been investigated. This study explores the organisational barriers and solutions to the promotion of healthy lifestyle behaviours for this population. Method:Qualitative methodology was used. Focus groups and interviews were undertaken with staff and managers of residential services. Staff job descriptions were also collected from these services. Thematic content analysis was employed. Results: Three overarching themes were identified. The first two themes relate to organisational barriers to promoting health for individuals with ID. These themes focussed on highlighting how administration and routine tasks were prioritised over the promotion of regular physical activity and a healthy diet. The third theme relates to enablers or strategies for implementing health promotion activities. Conclusions: These findings have international implications on how organisations support people with ID to be more aligned with promoting health.They also highlight the need for organisational culture to facilitate knowledge translation and embrace evidence-based health promotion interventions.Aim: Life expectancy of people with intellectual disability (ID) has increased along with that in the general population. The aims were to estimate prevalence of older people with intellectual disabilities (ID) during 2004-2012, and identify differences in prevalence across counties in Sweden. Method: Individuals aged 55+ years were identified through two national registers; the LSS register and the death register from the Swedish National Board of Health and Welfare. Results: The prevalence of ID was 444 per 100,000 population among the youngest age group 55-59 years old, and it decreased steadily to 65 per 100,000 population among those aged 80+ years old. Higher prevalence was found among men in the youngest age group. Northern counties in Sweden had higher prevalence, whereas prevalence in the middle and the southern regions demonstrated a more widespread distribution. Conclusions: This national study fills the knowledge gap about spatial distributions of older people with ID in Sweden. There is a need to investigate allocated resources and the quality of social service and care provided to individuals with ID in different counties in Sweden. (Less)Full access scientific oral presentations first published: 22 july 2016 https://doi.org/10.1111/jir.12305 citations: 1 maastricht university find full textaboutsectionspdfpdf toolsrequest permissionexport citationadd to favoritestrack citation share give accessshare full text accessshare full text accessplease review our terms and conditions of use and check box below to share full-text version of article.i have read and accept the wiley online library terms and conditions of use.shareable linkuse the link below to share a full-text version of this article with your friends and colleagues. Learn more.copy urlshare a linkshare onemailfacebooktwitterlinkedinreddit psychological coping styles in mothers of children with rare genetic syndromes: associations with mental health d. Adams (conference@dawnadams.co.uk)*, n. Jackson, e. Karakatsani and c. Oliver cerebra centre for neurodevelopmental disorders & university of birmingham, united kingdom aim: to document coping styles used by mothers of children with rare genetic syndromes and explore how these relate to positive and negative maternal mental health. Method: 89 mothers of children with rare genetic syndromes completed questionnaires assessing maternal mental health (hospital anxiety and depression scale, positive and negative affect scale) and maternal coping styles (brief cope). Results: the most frequently reported coping style was problem-focussed coping, and the least frequent was religious/denial. Coping styles were not associated with child age or ability, but were significantly associated with maternal mental health. Higher levels of active avoidance were associated with higher levels of negative affect and increased levels of anxiety and depression. Conversely, higher levels of problem-focussed and positive coping styles were associated with higher levels of positive affect. Conclusions: although this study cannot comment on causation between coping styles and mental health, the identification of a relationship between coping styles and mental health (both positive and negative) highlights a key area for intervention.

Commentary on "It can still happen here: systemic risk factors that may contribute to the continued abuse of people with intellectual disabilities"

Purpose – This commentary takes Marsland et al.’s paper about services at risk of becoming abusive to the people they support, as a platform to consider issues around implementation science and its role in minimising this risk. The paper aims to discuss this issue. Design/methodology/approach – The commentary is a selected review of implementation science. The research is used to define implementation, identify prerequisites, selectively review methods and comment on fidelity. Findings – The commentary proposes that implementation science has an important role in ensuring evidence-based practice transfers from research to disability services. Originality/value – The commentary offers a viewpoint based on combined research evidence and clinical practice.