Ableism among children and youth with acquired brain injury and their caregivers: a systematic review

Lindsay, Sally; Patel, Stuti; Ragunathan, Sharmigaa; Fuentes, Kristina

doi:10.1080/02699052.2023.2184869

Cited by 8 publications

(4 citation statements)

References 50 publications

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Section: Key Ethical Topics In Neuropalliative Carementioning

confidence: 99%

“…Ableism, or discrimination in favor of able-bodied people, 8 is relevant in how people with neurologic disorders experience the world and in how clinicians counsel patients about medical decision-making. Ableism is a form of discrimination that can be detrimental to patients and their families and can be experienced on an individual or structural level.…”

Section: Ableismmentioning

confidence: 99%

“…Finally, ableism acknowledges how our biases about having particular cognitive or physical abilities can lead to differential perceptions of the value of a person's life and can result in the perpetuation of injustices. 8 We will use clinical cases of adults and children with neurologic disease as a foundation for discussions about the key ethical topics in neuropalliative care. We highlight several nuances in the interpretation of these ethical principles when they may be in cooperation or conflict with one another in the context of caring for patients with neurologic illness.…”

Section: Key Ethical Topics In Neuropalliative Carementioning

confidence: 99%

“…Parents of children with neurologic impairment often feel that their child's care team has limited understanding of their child's care needs and that this disconnect can negatively affect their care. 8,39 Mr. Johnson may also experience structural ableism in how he moves about the world. With his quadriparesis, he likely has limited options for mobility unless his community has accessible transportation and establishment options.…”

Section: Ableismmentioning

confidence: 99%

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Exploring Ethical Dimensions in Neuropalliative Care

Gula,

Walter,

Morrison

et al. 2024

Semin Neurol

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Neurologic illnesses can be challenging to diagnose, involve changes in consciousness, and are often complicated by prognostic uncertainty. These disorders can affect how individuals interact with their environment, and as a result, many ethical concerns may arise related to their medical care. Key ethical issues in neuropalliative care include shared decision-making, evolving autonomy and capacity, best interest and harm principles, beneficence and nonmaleficence, futile and inappropriate care, justice and equity, and ableism. The four core principles of medical ethics, beneficence, nonmaleficence, justice, and autonomy, are foundational in considering approaches to these ethical challenges. Shared decision-making is rooted in the principle of autonomy. Evolving autonomy and capacity evoke autonomy, beneficence, and nonmaleficence. The best interest and harm principles are rooted in beneficence and nonmaleficence. Questions of futility and inappropriate care are founded in the principles of nonmaleficence, autonomy, and justice. Ableism invokes questions of nonmaleficence, autonomy, and justice. Practitioners of neurology will encounter ethical challenges in their practice. Framing decisions around the core ethical principles of beneficence, nonmaleficence, autonomy, and justice will help clinicians navigate challenging situations while acknowledging and respecting each patient's individual story.

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Section: Key Ethical Topics In Neuropalliative Carementioning

confidence: 99%

Section: Ableismmentioning

confidence: 99%

Section: Key Ethical Topics In Neuropalliative Carementioning

confidence: 99%

Section: Ableismmentioning

confidence: 99%

See 2 more Smart Citations

Exploring Ethical Dimensions in Neuropalliative Care

Gula,

Walter,

Morrison

et al. 2024

Semin Neurol

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Understanding barriers and facilitators to long-term participation needs in children and young people following acquired brain injuries: a qualitative multi-stakeholder study

Keetley,

Manning,

Williams

et al. 2024

Brain I.

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Background This study focused on exploring the longer-term participation needs of children and young people with acquired brain injury (CYP-ABI) and their families in one region of the UK and identifying the barriers and facilitators of their participation and well-being to inform the development of a behavioural change intervention for clinical implementation. Methods Qualitative interviews were conducted with CYP-ABI and parents. Focus groups were created with health, education, care and charity stakeholders. The International Classification of Functioning, Disability and Health (ICF) and the Behaviour Change Wheel (BCW) were used to map needs, barriers and facilitators. Results A total of 10 CYP/parent dyads (n = 20) and 17 health, education, care and charity stakeholders were included in this study. Unmet participation needs were mapped to the ICF and barriers/facilitators to the BCW. Significant unmet needs impacting CYP-ABI participation and family well-being were found. Barriers spanned ‘Capability’, ‘Opportunity’ and ‘Motivation’, the greatest being knowledge, skills, social influences, environmental context and resources, social identity and emotion. Facilitators included increasing awareness and understanding, supporting parents, long-term access to specialist assessment and rehabilitation, peer support and integrated collaborative pathways. Conclusion The long-term impact of ABI on CYP and families’ participation and well-being were significant, with barriers spanning every sector and level of society. Implementation of collaborative, cross-sector (education, health and social care) accessible and family-centred care pathways is needed to meet the long-term needs of CYP-ABI and their families, ensuring equity of access. Multi-modal, family-centred, needs-led, theory-based interventions should be co-developed with CYP, families and stakeholders to improve the health and well-being outcomes and the lives of CYP-ABI and their families.

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