Attitudes on Palliative Care for Adults with Developmental Disabilities

Sue, Kyle; Mar, Nicole

doi:10.1089/jpm.2020.0274

Cited by 4 publications

(4 citation statements)

References 8 publications

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“…Direct support professionals report varying knowledge and experiences related to death and dying, 21,26 a lack of experience or training in the provision of EOL care, 27 and feel ill-equipped to support individuals with ID with the aspects of EOL 9,21,28-30 . Similarly, knowledge gaps exist for HAPC clinicians caring for individuals with ID related to communication, decision-making, and complex ID-related medical conditions 12,31 . A lack of formal protocols, policies, and guidelines regarding EOL care for people with ID contributes to the gaps in knowledge and care for DSPs and HAPC clinicians 25 …”

Section: Caregiver Considerations For People With Idmentioning

confidence: 99%

“…9,21,[28][29][30] Similarly, knowledge gaps exist for HAPC clinicians caring for individuals with ID related to communication, decision-making, and complex ID-related medical conditions. 12,31 A lack of formal protocols, policies, and guidelines regarding EOL care for people with ID contributes to the gaps in knowledge and care for DSPs and HAPC clinicians. 25…”

Section: The Role Of the Dsp For People With Idmentioning

confidence: 99%

“…There is increasing evidence that having an ID is a risk factor for mortality in multiple illnesses 5-8 . Although adults with ID deserve equal access to high-quality hospice and palliative care (HAPC) as those without ID, palliative care services are underused by adults with ID, 9,10 and there are considerable barriers to overcome 11,12 . Exploring end-of-life (EOL) care for adults with ID is still relatively new, and further work is needed to determine how to best support community agencies and their staff by removing some of the barriers to providing EOL care 2 .…”

mentioning

confidence: 99%

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Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers

Moore

Kates

2022

J Hosp Palliat Nurs

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People with intellectual disabilities (IDs) are living longer, with many experiencing significant barriers to accessing palliative care and hospice services. Families, caregivers, and direct support professionals comprise essential portions of the community of support often surrounding a person with IDs. For a variety of reasons, including clinician bias and communication difficulties, many people with IDs are excluded from critical conversations regarding their health and life. This article uses a blended case study to explore the complexities and unique considerations in ensuring ethical and practical end-of-life care for people with IDs. Decision-making must center on the person with ID and include them in ways they can understand, thus facilitating their right to autonomy. A collaborative approach to care with shared expertise between caregivers and hospice and palliative care services is key to providing effective, patient-centered care at the end of life. There are tremendous areas of opportunity to improve end-of-life care for this population by partnering with people with IDs, their families, and caregivers.

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Section: Caregiver Considerations For People With Idmentioning

confidence: 99%

Section: The Role Of the Dsp For People With Idmentioning

confidence: 99%

mentioning

confidence: 99%

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Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers

Moore

Kates

2022

J Hosp Palliat Nurs

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“…Friedman (2018) noted that, with limited federal‐ and state‐level guidance, the onus of training becomes that of individual organisations. For training on trauma‐informed care, organisational responsibility can be exacerbated by limited understanding of trauma‐informed care, few relevant training resources, and a lack of available funding (Rich et al, 2020; Sue & Mar, 2021).…”

Section: Introductionmentioning

confidence: 99%

Advancing trauma‐informed care in intellectual and developmental disability services: A pilot study of a digital training with direct service providers

Keesler

Purcell

Thomas-Giyer

2023

Research Intellect Disabil

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Background: As trauma-informed care advances in the service delivery system for people with intellectual and developmental disabilities, additional resources are needed to foster staff development. This article describes the development and pilot evaluation of a digital training on trauma-informed care among direct service providers (DSPs) in the disability service industry.Method: Following an AB design, a mixed methods approach was used to analyse the responses of 24 DSPs to an online survey at baseline and at follow-up. Results:The training was associated with increased staff knowledge in some domains and greater alignment with trauma-informed care. Staff expressed a strong likelihood of using trauma-informed care in practice and identified organisational assets and barriers to implementation. Conclusions: Digital trainings can facilitate staff development and the advancement of trauma-informed care. Although additional efforts are warranted, this study fills a gap in the literature regarding staff training and trauma-informed care.

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Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: an Integrative Review

Shady

Phillips

Newman

2022

Rev J Autism Dev Disord

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This integrative review explores the barriers to and facilitators of healthcare access in adults with intellectual and developmental disorders (IDD) and communication difficulties (CD) using Levesque et al.’s conceptual framework of access to health. IDDs are a group of disorders that occur early in childhood and often involve language dysfunction. CDs are prevalent in adults with IDD. Several themes emerged as barriers to access for adults with IDDs and CDs including health literacy, understanding health information, and screening; fear and negative patient expectations; impaired autonomy; time; accommodation needs; insurance coverage and financial hardship; communication; coordination and continuity of care; and supporter presence and inclusion. Communication between providers, patients, and supporters is a significant barrier for adults with IDD and CD. Supplementary Information The online version contains supplementary material available at 10.1007/s40489-022-00324-8.

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Attitudes on Palliative Care for Adults with Developmental Disabilities

Cited by 4 publications

References 8 publications

Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers

Navigating End-of-Life Needs for a Person With Intellectual Disabilities and Their Caregivers

Advancing trauma‐informed care in intellectual and developmental disability services: A pilot study of a digital training with direct service providers

Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: an Integrative Review

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