Treatment Engagement and People with Intellectual Disability

Stancliffe, Roger J.; Durvasula, Seeta; Wilson, Nathan J.; Lewis, Peter

doi:10.1002/9781119129530.ch21

Cited by 4 publications

(5 citation statements)

References 32 publications

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Section: Discussionmentioning

confidence: 99%

“…35,56 With their understanding of the person, these caregivers can become communication supporters for people with intellectual disability, 22,57 and help bridge the communication gap between the dying person and palliative care staff. 58 It is important to note that caregivers may, with albeit good intention, hinder conversations about dying and death with the purpose of protecting the dying person. As illustrated in this study, people with intellectual disability may have an awareness of their dying, and if they are not explicitly informed unnecessary confusion and personal distress may result.…”

Section: Main Findingsmentioning

confidence: 99%

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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

et al. 2021

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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.

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Section: Discussionmentioning

confidence: 99%

Section: Main Findingsmentioning

confidence: 99%

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

et al. 2021

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“…By contrast, greater self‐reported familiarity was from registered nurses working in paediatrics or with people with ID and/or ASD and these findings are supported by other studies where registered nurses in these speciality areas report greater confidence navigating the complexity of issues, both at the individual and system levels (Bur, Missen & Cooper, 2021; Lewis, Wilson, Jaques, O'Reilly, & Wiese, 2019; Wilson, Wiese, Lewis, Jaques, & O'Reilly, 2019). These complex issues cover a range of things, but perhaps most importantly are adjustments to communication to assist with the vital process of consent and decision making that are so important to self‐determination in health care (Stancliffe et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

“…). These complex issues cover a range of things, but perhaps most importantly are adjustments to communication to assist with the vital process of consent and decision making that are so important to self-determination in health care (Stancliffe et al, 2020).…”

Section: Discussionmentioning

confidence: 99%

Registered nurses' awareness and implementation of reasonable adjustments for people with intellectual disability and/or autism

Wilson

Pracilio

Kersten

et al. 2022

Journal of Advanced Nursing

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Aim To describe Australian registered nurses' awareness, and implementation of reasonable adjustments within their practice when caring for people with intellectual disability and/or autism. Additionally, the association between key demographic, workforce, and respondent variables and familiarity of the term and regularity of use was explored. Design Cross‐sectional survey. Methods Survey data were collected between August and October 2020 using an online survey tool. Data were analysed using descriptive and inferential statistics. Results Familiarity of the concept of reasonable adjustments was relatively low, compared to respondents who report applying adjustments when caring for people with intellectual disability and/or autism. Higher levels of confidence, comfort, and knowledge when caring for this cohort were associated with greater awareness and application of reasonable adjustments. Conclusion A higher volume, and diversity in type of, nursing education related to care for people with intellectual disability and/or autism is indicated.

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“…International evidence recognises that people with intellectual disability have poorer health [ 11 ], greater health comorbidities [ 12 ], present more often for treatment [ 13 ], have more complex needs [ 14 ], experience increased polypharmacy [ 15 ] and die earlier [ 16 ] compared to the general population. Furthermore, healthcare services have been identified as ill-equipped to respond to the needs of a person with intellectual disability.…”

Section: Introductionmentioning

confidence: 99%

Fourth year intellectual disability student nurses’ journey and future work intention: a qualitative study

et al. 2022

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Background The aim of this qualitative study is to explore the views and experiences of final year BSc intellectual disability nursing students’ journey, future work plans and examine factors influencing their migration intentions following graduation. Methods A qualitative component of a mixed methods study where a focus group interview was conducted with final year BSc intellectual disability nursing students (n = 10) from one University in Ireland in June 2019. A topic guide was utilised, and participant’s were interviewed about their programme, future work plans and migration intentions. An inductive approach was utilised, and data were analysed using a pre-existing framework for initial coding and thematic development. Duffy’s conceptual model of identity transformation provided a structure to analyse the data and map themes onto the conceptual framework. Results The findings were mapped onto the five stages of Duffy’s (2013) conceptual model of identity transformation: Pre-Entry; Reaffirming; Surmounting; Stabilising and Actualising. Findings indicate that further work is required to promote intellectual disability nursing and address professional esteem issues, support for education and professional development, such as providing career guidance opportunities prior to course completion, development of clinical skills within their education programme and support for the professional development of new graduates. Participant’s identified uncertainty about career opportunities and saw scope for future professional development opportunities particularly in community-based work. Conclusion This study has identified that final year intellectual disability nursing students are uncertain about career options and opportunities for intellectual disability nurses in other country’s. There is an urgent need for the intellectual disability nursing profession to articulate their practice and advocate for their role and contribution to the care of people with intellectual disability. This study identified a clear need for direction and information regarding intellectual disability nursing roles and career opportunities.

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Treatment Engagement and People with Intellectual Disability

Cited by 4 publications

References 32 publications

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

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

Registered nurses' awareness and implementation of reasonable adjustments for people with intellectual disability and/or autism

Fourth year intellectual disability student nurses’ journey and future work intention: a qualitative study

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