A nurses’ ethical commitment to people with intellectual and developmental disabilities

Abstract

Aim: This article explores the issues of knowledge deficits of healthcare professionals in meeting the needs of people with IDD throughout the life span, and to identify factors that contribute to these deficits.

Although statistics vary due to census results and the presence of a “hidden population,” approximately 1%–3% of the global population identify as living with an intellectual or developmental disability. People with intellectual or developmental disability experience health inequities and confront multiple barriers in society, often related to the stigma of intellectual or developmental disability. Disparities in care and service are attributed to a lack of knowledge and understanding among healthcare providers about people with intellectual or developmental disability, despite their increased risk for chronic health problems. The near absence of educational programs in nursing both nationally and internationally contributes to this significant knowledge deficit. In addition, ethical considerations between paternalistic beneficence and idealized autonomy have resulted in a lack of clear direction in working with a population that is often ignored or exploited. Nurses who view people with intellectual or developmental disability as vulnerable without assessing or acknowledging their capabilities may err toward paternalism in an effort to “first do no harm.” Likewise, nurses who fail to recognize the challenges and limitations faced by people with intellectual or developmental disability may not provide sufficient protections for a vulnerable person. People with intellectual or developmental disability are not binary, but rather complex individuals with a myriad of presentations. This article seeks to encourage a well-informed model of nursing care. Through an ethical lens, this article explores the nurse’s ethical commitments in cases of victimization, access to care, decision making, and the provision of optimal end-of-life care for people with intellectual or developmental disability.

Keywords

Autism spectrum disorder developmental disability ethics intellectual disability nurses

Introduction

Approximately 1%–3% percent of the global population identify as living with an intellectual or developmental disability (IDD).^1,2 The World Health Organization³ defines intellectual disability as a condition that begins before adulthood that significantly reduces the ability to comprehend new or complex information and learn or apply new skills. As a result, disparities in care and service are attributed to a lack of knowledge and understanding among clinicians about people with IDD, despite their increased risk for chronic health problems. Nurses play a pivotal role in the care of people with IDD. This article explores the ethical obligations that nurses have to people with IDD and their families and caregiver throughout the lifespan. Nurses must be knowledgeable about quality of life, self-determination, vulnerability, and, finally advocacy. The paucity of educational programs within nursing nationally and internationally contributes to the clinical and ethical knowledge deficit. The International Council for Nurses (ICN) Code of Ethics for Nurses states that “Nursing care is respectful of and unrestricted by considerations of age, colour, creed, culture, disability or illness, gender, sexual orientation, nationality, politics, race or social status.”⁴ Similar provisions regarding the obligation for nurses to provide equitable and compassionate care regardless of factors contributing to a person’s health are found in several professional nursing codes of ethics around the world.^5

–8 Nurses have an ethical commitment to provide person-centered and equitable care for people with IDD.⁹

People with IDD generally require assistance with social skills, such as activities of daily living, social problem solving, and financial and time concepts.¹ Some people with IDD have a reduced ability to cope independently and have an impaired ability to function socially.³ People with IDD are hospitalized more frequently and for longer periods than the general population.^10,11 They also experience a greater prevalence of health complications than those hospitalized with similar conditions.¹² In addition to life-limiting illnesses such as progressive cancer or cardiovascular disease, elevated rates of dementia among those aging with IDD are well documented.¹³ Despite these inequities, advances in healthcare together with changing attitudes, have contributed to increased longevity for this population. The number of those 60 years and older is expected to rise twofold by 2030 to nearly 1.2 million.^14,15 These statistics suggest that nurses working in areas other than those specifically devoted to the care of people with IDD will encounter them in their respective practice settings.^12,16

What’s in a name?

Terminology and diagnoses are critical in how people with IDD are perceived and treated in society.¹⁷ Despite being at risk for health and educational disparities, perceived stigma may discourage people from obtaining a clinical diagnosis that could “label them.” Stigma occurs when an association between the label and the diagnosis is made and people are judged according to this label.¹⁷ Stigma has been linked to psychological distress and increased social distance.¹⁷ Stigma specifically associated with people with IDD can negatively impact well-being and quality of life in multiple aspects such as safety, education, employment, health, intimate relationships, reproductive rights, and self-determination.¹⁷ Fears of mistreatment, discrimination, or neglect may be well founded as a result of the depersonalization that labels cause.

The terminology used in the diagnosis can create a label that may medicalize the condition to the degree that the healthcare community may exhibit hubris and discount the insights of the IDD community in advocating for their own needs. Labels can perpetuate stereotypes and depersonalize interactions with people with IDD. Unfortunately, even appropriate diagnostic labels may be used in a derogatory manner. For example, the term “mental retardation” was meant to reflect that the development of the brain had proceeded at a slower pace than what would be anticipated.¹⁷ Over time, the term became pejorative and used beyond the original intent and meaning. The World Health Organization established international consensus to replace the term with intellectual disability.¹⁸ Keith and Keith¹⁹ posit that the term intellectual disability reflects a potentially significant departure from labeling led by the change in social recognition of the locus of the disability. Earlier terms implied the disability was a defect within the person, while intellectual disability suggests a state of functioning reflected in the relationship between the person and the context.¹⁹

The stigma effects of labeling not only affect the lives of people with IDD but also impacts others surrounding the person with IDD, such as family, friends, and caregivers.¹⁹ Parents’ emotional reactions after receiving a diagnostic label include acute grief and chronic sorrow as a result of the loss of the desired healthy baby.²⁰ Notably, as much of the literature focuses on mothers, nurses must be aware that fathers also experience grief, distress, and anger, and may have difficulty expressing these emotions due to societal role expectations.²¹ Conversely, some families may embrace receiving a diagnostic label as this helps obtain appropriate services and care, but this acceptance takes a long period of adaptation and adjustment.²⁰ Thus, the nurse must be aware of the emotional conflict associated with a diagnosis of an IDD and support families appropriately.

Collaboration with family and caregivers

Nurses are uniquely positioned to provide knowledge, and skilled and compassionate care to address needs for people with IDD. Nurses must recognize the spiritual, emotional, physical, and financial challenges individuals and their caregivers confront regarding access to care and/or unmet healthcare needs. People with IDD are living longer lives and nurses must be cognizant and prepared to face the multitude of barriers, inequities, and risks for disparate care that people with IDD may encounter.

Based on our research, many readers may not be familiar with this population. To illustrate these ethical principles in practice, consider the following example:

Charlie is a 50-year-old man with IDD. Charlie’s parents, Marilyn and Frank, have been his primary caregivers since his birth. Recently, Frank passed away and Charlie is having a difficult time coping. Frank never wanted to talk about guardianship or end-of-life issues and now Marilyn is struggling to cope with her own grief and Charlie’s future. Charlie has always lived with his parents and does not adjust well to changes in routine or environment. He is having extreme physical and emotional outbursts and refuses his daily medications. Marilyn is unable to control his behavior and is seeking treatment for Charlie in an acute care setting. Charlie is uncomfortable with the new nursing staff and Marilyn offers advice to the staff on what has been most effective in getting Charlie to calm down, but she was ignored. Marilyn overheard nursing staff making disparaging remarks about her family, and expressing disbelief that she insisted on providing care to an adult son with IDD.

People with IDD are more likely to experience health inequities in quality and access to healthcare because of clinician’s inexperience caring for this population.²² Unfortunately, patients like Charlie are likely to experience a lower quality experience when receiving care due to role confusion between the longtime primary caregiver and the nurse.¹² People with IDD may not be able to sufficiently communicate with the nurse, and therefore the nurse relies heavily on the caregiver to obtain information. In the case scenario, Marilyn attempted to inform the staff of remedies for Charlie’s behavior, but she was ignored. Nurses often lack education and skills to care and effectively communicate with individuals with IDD. As a result, nurses might be unable to identify special needs deficits, and poor staffing can contribute to decreased time and resources necessary to sufficiently address the needs of people with IDD. When nurses are faced with time and training limitations, they may experience ethical uncertainty as to their obligations when the information provided by caregivers would result in a significant change in the plan of care.¹² These barriers have a negative effect on the health and well-being of people with IDD and are challenges that can be addressed through policy, research, and education.¹²

Nurses must be aware of the impact on families and other caregivers of individuals with IDD, which is often unrecognized or acknowledged. Caregiver impact, also known as caregiver burden, results from the demands related to addressing the physical dependence and behaviors of people with IDD and the significant changes in the life dynamics of their caregivers.²³ Some people with IDD exhibit maladaptive or challenging behaviors that present unique demands on caretakers and impact the services received. Because of the ongoing, complex care needs of individuals with IDD, family caregivers may experience more social isolation, depressive symptoms, personal health issues, economic hardship associated with caring for their children, and limited access to care when compared with other families.²⁴ Nurses and staff who care for individuals with IDD may also be at risk for burnout when communication difficulties and challenging behavioral issues arise. Disparaging remarks such as those made toward Marilyn are harmful and threaten the trust inherent in the nurse–patient relationship. Nurses must be sensitive to the difficulty that caregivers face when making decisions on behalf of another person who cannot speak for themselves.

Education

The lack of preparation and familiarity with the IDD population can contribute to negative attitudes of nurses caring for people with IDD, health inequities, challenges with access to care, and significant concern over the quality of care provided.^22,25,26 In a study of 31 Australian nursing schools, 15 provided content related to IDD; however, most schools did not have a faculty member with any IDD experience.²⁷ Only Ireland and the United Kingdom include the opportunity for a nursing subspecialty in intellectual and developmental disability in their undergraduate nursing curriculum.^28
–30 Unfortunately, these courses are not well integrated or have limited inclusion in other fields of pre-qualifying specialism, like adult nursing.³⁰

In the United States, minimal education or clinical opportunities exist in undergraduate and graduate, or nurse practitioner programs.^31,32 In 2018, St. John Fisher College in Rochester, New York, announced the creation of The Golisano Institute for Disability Nursing in the Wegmans School of Nursing.³³ It is the first institute of its kind and is designed to train nurses in field-specific skills and knowledge of people with IDD. The lack of formal education related to IDD is attributed to funding issues, time, existing overloaded curriculum, and too few nursing faculty with interest or knowledge of the subject.^26,31,32

Quality of life and self-determination

Nursing care is a model that extends beyond the ethics of principlism.³⁴ People who are in need of special care, support, or protection because of age, disability, or risk of abuse or neglect are by definition, vulnerable. Gastmans³⁴ calls upon nurses to enlarge the vision of nursing care beyond tasks required to meet the physical and psychosocial needs of a vulnerable person and view their mission as providing what he titled “Dignity Enhancing Care.” In this model, the lived experience of the person with IDD is the starting point for interpretive dialogue with the individual and their caregivers. Nurses are then in a more informed, person-centered position, to develop plans of care that balance providing care for the vulnerable while promoting individual dignity.³⁴ A normative approach to care that enhances dignity must include the perceptions and needs as seen by the vulnerable person. Understanding their needs may prove challenging as people with IDD often have communication difficulties and may demonstrate limitations understanding complex medical information. However, nurses should not assume the person with IDD is absolutely unable to participate in decision making. Many individuals with IDD actively participate in day-to-day decisions. When possible, allowing people with IDD to make decisions in a healthcare setting acknowledges their unique personhood. In practical terms, there may be ethical and legal tensions implementing decision-making rights for people with IDD based on the current understanding of the principle of autonomy.

The concept of autonomy, or self-rule, originated as a political term to describe independent nation-states and was later expanded to include individual self-governance.³⁵ The idea that autonomy is limited when a person has an IDD fails to acknowledge that there are some decisions a person with IDD may participate in safely.³⁶ Encouraging participation in decision making demonstrates respect for the dignity of the individual, regardless of disability. Even for those without a disability, most decisions are relational in nature. For example, people without a disability are dependent upon others to provide accurate information in order to make informed decisions. They are dependent upon an existing facility, skilled caregivers, and financial resources that enable them to see their decisions come to fruition. People with IDD experience the same relational needs but may require additional support. If appropriate supports are in place, people with IDD would have a greater opportunity to experience the dignity enhancing care espoused by Gastmans.

A significant barrier in recognizing and honoring the autonomy of people with IDD is the difficulty assessing their understanding of complex medical information, even when structural elements such as accessible facilities, trained staff, funding sources, and so on are in place. Unfortunately, the barriers in communicating collective, as well as individual, needs have resulted in a deficit of available resources. The authors have observed that there seems to be polarizing viewpoints on how people with IDD are characterized. On one extreme, a singular focus on the abilities and strengths of people with IDD may not reflect the need for significant support to achieve their potential. On the other extreme, focusing exclusively on the disability and need for support may fail to encourage viewing the person with IDD as having strengths and abilities beyond the label. The end result is that people with IDD may be more subject to paternalism or unintentional harm. Nurses should be aware of their own limitations in knowledge and seek to collaborate with the person, their caregivers, and those who are skilled in meeting the needs of this population. The need for collaboration is even more critical when decisions must be made regarding procedures or medications that carry considerable risk. While day-to-day decisions should be encouraged, nurses must recognize that treatment or procedure actions that carry greater risk require greater levels of understanding.³⁷ Because the assessment of understanding is critical to avoid harm, nurses must realize both the ethical and legal requirements when providing care to people with IDD in their respective practices.³⁴ Conveying information appropriately and assessing understanding in the individual is essential.

Decision making for people with IDD is a complicated process that must consider capacity for each treatment choice and support systems (people available in the event the individual lacks the ability to make decisions). Informed consent requires that the provider obtain the patient’s agreement to the medical plan of care, explain the medical opinion about the problem or diagnosis, recommend an appropriate treatment, give a rationale for the recommendation, propose an acceptable alternative, and explain the risks and benefits of the procedure.³⁸ The ability to provide informed consent, or capacity, is a dynamic clinical assessment relative to the decision being made.³⁵ As a result, people with IDD may be able to provide consent for some procedures, based on a current capacity evaluation. However, nurses need to be aware of the legal limitations related to decision making for people with IDD and be able to identify and include the appropriate surrogate or shared decision maker when discussing goals of care.

Surrogate decision makers are individuals who speak on behalf of a patient when a patient is unable to communicate healthcare preferences.³⁸ A surrogate decision maker should use substituted judgment first if appropriate, and then consider the patients best interest if previous values are unknown.³⁹ Ideally, the surrogate decision maker has a relationship with the person with IDD and can provide insights regarding healthcare preferences. Effective communication with the person with IDD and their support systems offers the nurse an opportunity to advocate for safety, human rights, respect, dignity, and inclusion of vulnerable persons as valuable members of society. When a person lacks capacity to make a specific treatment decision, surrogate decision makers strike a balance between respecting the autonomy of the person who is “capable of making informed decisions and protecting those with cognitive impairment.”⁴⁰

Incorporating the preferences of people with IDD in care demonstrates respect, acknowledges capabilities, and improves quality of life.⁴¹ The nurse promotes beneficence and self-determination for people with IDD by ensuring that when healthcare decisions are made, the patient is provided with sufficient and comprehensible information so that the patient can make an autonomous decision. The ICN Code of Ethics states that the nurse shares with society the responsibility for initiating and supporting action to meet the health and social needs of the public, in particular those of vulnerable populations.⁴ The nurse is ethically obligated to promote dignity and protect the vulnerability of people with IDD by identifying the surrogate decision maker and support systems available. Regardless of how decision making is accomplished, nurses recognize the value and worth of each person, encourage participation in activities that improve quality of life, and continually seek to balance respect for autonomy with the need to provide additional support for this underserved population.

Victimization and safety

Internationally, higher rates of victimization have been reported for people with intellectual disabilities, related to violence, injury, abuse and sexual crimes,^42,43 personal and property offenses, and crimes of cyber victimization.⁴⁴ Thus, when compared to the general population, people with IDD are more often victims of crime and abusive incidents.⁴⁵ In addition, fears associated with victimization and exploitation are significant concerns for people with IDD and their families.^46,47 Moreover, the prevalence and incidence rates are believed to be significantly underreported because of myths, and misconceptions, communication challenges, presumptions of capacity and credibility, fear, and lack of resources and collaboration between service providers.⁴³ In the United States, the rate of violent victimization against people with disabilities was at least twice the rate of persons without disabilities from 2009 to 2014.⁴⁸ People with cognitive disability experienced the highest rate (57%) of violent crime (i.e. rape/sexual assault, robbery, aggravated assault) and simple assault (33%).⁴⁸ Crimes of abuse are extremely high in the IDD population. Findings from a recent US study of 350 individuals with developmental disabilities reported 77% with at least one instance of abuse in their lifetime. In childhood, physical abuse, disability-specific abuse, and sexual abuse were frequently identified. As adults, the types of abuse experienced were mixed (i.e. physical and disability specific) with slightly less (23% vs 35%) reporting sexual abuse. However, as adults, women were three times as likely to experience sexual abuse than men.⁴⁹

Tragically, victims of sexual assault are frequently abused by someone known to them, and too often crimes against people with IDD are not reported.⁴³ Deficits in cognitive and interpersonal functioning can increase the risk for exposure to dangerous situations further contributing to the potential for criminal victimization.^50,51 With few of these crimes being reported to police and ever fewer prosecutions, officials hesitate to pursue cases that rely on the testimony of a person with IDD, and negative interactions with police have been reported.⁵⁰ Research suggests that in practice, nurses are challenged in identifying what constitutes significant harm despite ethical obligations of nonmaleficence.⁵² Identification of abuse or neglect appears to be a complex process and reporting among providers is inconsistent even with the assistance of a decision-making tool.⁵² Only 5% of the abused population present physical findings suggestive of abuse.⁵³ Therefore, it is imperative that nurses realize that people with IDD will likely have normal examinations and nurses must be aware of behavioral symptoms of abuse such as self-injury, inappropriate sexual comments, and new presentations of sexualized behavior.⁵³ It is also critical for nurses to be skilled in identifying abuse, including psychological abuse in a timely manner so that appropriate support systems are available for people with IDD.⁵²

End-of-life considerations

Toward the end of the lifespan, the palliative care needs of people with IDD are the same as the general population, but they often have complex medical conditions and challenges that make it more difficult to meet those needs. There is an increasingly robust evidence-informed practice surrounding the provision of optimal palliative and end-of-life care across the lifespan in the general population. However, there is scant empirical evidence around applying such principles to people with IDD, including children, in whom the prevalence of chronic health conditions may necessitate palliative care interventions earlier in life.^54,55 A retrospective study of recent, premature deaths of 247 people with IDD described the deaths as not being planned for, uncoordinated, and poorly managed.⁵⁶ Advance care planning increases compliance with end-of-life wishes and satisfaction with palliative care, but minimal research has been conducted with the IDD population, especially among those with profound conditions.⁵⁵ In addition, while hospice utilization may significantly improve quality end-of-life care, enrollment is often delayed for all people with IDD, including children.⁵⁴ As patient advocates, nurses are obligated to respect the inherent dignity of all people with particular attention to preserving the rights and autonomy of those who are underserved or marginalized.⁵ This ethical obligation is especially important when caring for people with IDD during the transition to palliative and/or end-of-life care.

Decision making during this transition is complicated and issues around protection of vulnerable individuals is critical. However, there is no justification for people with IDD to have less autonomy, choice, or dignity in the experience than others do, to the extent possible.⁵⁷ This respect for autonomy includes the right to be informed about diagnosis and treatment options. Historically, people with severe IDD in particular were often protected from the truth and shielded from understanding the consequences of their diagnosis. While their ability to understand complex concepts such as death, dying, and palliative care may differ and require alternate forms of communication, withholding the truth may severely obstruct optimal end-of-life care. Communicating with people with IDD is a process, and truth-telling should be facilitated so it can contribute to making them better informed.⁵⁸ The Tuffrey–Wijne communication model includes building a foundation of knowledge; assessing capacity; involving family, partners, and IDD healthcare professionals; and providing support to all involved. Assessing capacity, addressed above, is essential to determining a person’s ability to understand and retain knowledge in order to make an informed decision. Initially it is important to consider what background knowledge the person with IDD possesses which depends on their life experiences, worldview, and intellectual capacity. New information has to make sense and may be better understood and retained if provided in singular chunks in order to build a solid foundation of knowledge. Involving those individuals who may have a different understanding of what the person with IDD requires to understand is essential. As caregivers and others may have a close relationship with the person, providing emotional, social, and spiritual support is required. Assessing an individual’s wishes at end of life may also require creativity, such as using pictures, especially with those who are non-verbal or have additional communication challenges. A recent study indicated that elements of a supported decision-making framework may also assist in ascertaining the preferences of non-verbal people with severe IDD.⁵⁹

Nurses are uniquely qualified to promote collaborative planning among providers involved in the transition to palliative and/or end-of-life care for all people, including those with IDD.^60,61 Care coordinator, information broker, and advocate are identified nursing roles in this process which may, ideally, occur in the home or group home or other practice settings, including acute care.⁶² Although additional education may be needed, research suggests that nurses’ participation in this transition may contribute to patient-centered care at the end of life for people with IDD.⁶¹

Advocacy

Nurses are critical advocates for people with IDD, to promote access to regular and quality healthcare, patient autonomy, and the right to self-determination.⁹ Nurses make a significant impact in practice, policy, education, and research regarding stigma, quality of life, access to education, victimization, and safety for people with IDD. Nurses must advocate, educate, and increase awareness of the potential experiences and barriers for people with IDD. Breaking down these barriers requires education and calls for the incorporation of IDD content in nursing curriculum and clinical teaching experiences. Nurses must advocate for clinical screening guidelines to prevent and detect the likelihood of abuse among people with IDD throughout the lifespan. Importantly, nurses need to educate people with IDD that violence or abuse is never appropriate and teach skills of self-protection and self-advocacy. Furthermore, nurses must work with the public and families to increase the reporting of criminal events and victimization to lead to better justice for victims of these crimes. Finally, nurses must use language and promote patients as a whole person, rather than a diagnosis or label. For example, in group settings when stigmatizing language is used, it is important for nurses to demonstrate moral courage and speak up to educate others not to characterize the person with outdated and offensive language.

Conclusion

Nursing’s ethical commitment concerning people with IDD includes a greater understanding and knowledge about the unique challenges and opportunities that exist. This commitment requires that nurses recognize people with IDD as whole individuals, rather than a diagnosis, when developing a plan of care that balances obligations to promote self-determination and safeguard people from harm. People with IDD experience much higher rates of crimes and abuse, including sexual abuse, throughout the lifespan. Nurses must advocate, educate, and increase awareness regarding this criminalization and victimization, including the unique characteristics of the victims of those crimes to help prevent these heinous acts. Nurses must advocate for holistic approaches to providing care to people with IDD and their support systems throughout the lifespan. Nurses must also recognize that the health and well-being of people with IDD is highly dependent upon the health and well-being of their caretakers, which must be considered in the provision of healthcare services. Nursing’s ethical commitment includes supporting the rights and autonomy of all people to be informed about their diagnosis and treatment options including the choice of transition to end-of-life care. Thus, people with IDD should be involved in all aspects of their healthcare including end-of-life care planning and decision making to the fullest extent possible. It is critically important to follow these ethical guidelines. If we are to optimize health and promote wellness for individuals, families and community agencies supporting people with IDD, we must recognize the diversity of the population and support their individual capabilities or need for support in healthcare decision making.

Footnotes

Author contributions

All authors contributed equally to this work.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

ORCID iD

Felicia Stokes

References

Maulik

Mascarenhas

Mathers

, et al. Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil 2011; 32(2): 419–436.

Harris

. Intellectual disability: understanding its development, causes, classification, evaluation, and treatment. New York: Oxford University Press, 2006.

World Health Organization. Definition: Intellectual disability 2018, http://www.euro.who.int/en/health-topics/noncommunicable-diseases/mental-health/news/news/2010/15/childrens-right-to-family-life/definition-intellectual-disability

International Council for Nurses. The ICN code of ethics for nurses. Geneva: International Council for Nurses, 2012, https://www.icn.ch/sites/default/files/inline-files/2012_ICN_Codeofethicsfornurses_%20eng.pdf

American Nurses Association (ANA). Code of ethics for nurses with interpretive statements. Silver Spring, MD: ANA; 2015.

Canadian Nurses Association. Code of ethics for registered nurses. Ottawa, ON, Canada: Canadian Nurses Association, 2017.

UAE Nursing and Midwifery Council. Code of conduct. Dubai, UAE: UAE Nursing and Midwifery Council, 2013.

Nursing and Midwifery Board of Australia (NMBA). Code of conduct for nurses, 2017, http://www.nursingmidwiferyboard.gov.au/Codes-Guidelines-Statements/Professional-standards.aspx

American Association on Intellectual and Developmental Disabilities (AAIDD) and American Nurses Association (ANA). Intellectual and developmental disabilities nursing: scope and standards of practice. 2nd ed. Silver Spring, MD: ANA, 2013.

10.

Glover

Evison

. Hospital admissions that should not happen. Lancaster: Improving Health and Lives: Learning Disabilities Observatory, 2013.

11.

Friese

Ailey

. Specific standards of care for adults with intellectual disabilities. Nurs Manag 2015; 22(1): 32–37.

12.

Lewis

Gaffney Ryan

Wilson Nathan

. A narrative review of acute care nurses’ experiences nursing patients with intellectual disability: underprepared, communication barriers and ambiguity about the role of caregivers. J Clin Nurs 2016; 26(11–12): 1473–1484.

13.

McCallion

Hogan

Santos

, et al. Consensus statement of the International Summit on Intellectual Disability and Dementia related to end-of-life care in advanced dementia. J Appl Res Intellect 2017; 30(6): 1160–1164.

14.

McGinley

. From nonissue to healthcare crisis: a historical review of aging and dying with an intellectual and developmental disability. Intellect Dev Disabil 2016; 54(2): 151–156.

15.

Robertson

Hatton

Baines

, et al. Systematic reviews of the health or health care of people with intellectual disabilities: a systematic review to identify gaps in the evidence base. J Appl Res Intellect 2015; 28(6): 455–523.

16.

Drozd

Clinch

. The experiences of orthopaedic and trauma nurses who have cared for adults with a learning disability. Int J Orthop Trauma Nurs 2016; 22: 13–23.

17.

Werner

Abergel

. What’s in a label? The stigmatizing effect of intellectual disability by any other name. Stigma Health 2018; 3(4): 385–394.

18.

Tasse

Luckasson

Nygren

. AAIDD proposed recommendations for ICD–11 and the condition previously known as mental retardation. Intellect Dev Disabil 2013; 51(2): 127–131.

19.

Keith

. Intellectual disability: ethics, dehumanization, and a new moral community. Hoboken, NJ: Wiley, 2013.

20.

Choi

Lee

Yoo

. Factors associated with emotional response of parents at the time of diagnosis of Down syndrome. J Spec Pediatr Nurs 2011; 16(2): 113–120.

21.

Davys

Mitchell

Martin

. Fathers of people with intellectual disability: a review of the literature. J Intellect Disabil 2016; 21(2): 175–196.

22.

Singer

. Perceptions of school nurses in the care of students with disabilities. J Sch Nurs 2012; 29(5): 329–336.

23.

Barros

ALO

Barros

GLd

, et al. Burden of caregivers of children and adolescents with Down syndrome. Cien Saude Colet 2017; 22(11): 3625–3634.

24.

Heller

Gibbons

Fisher

. Caregiving and family support interventions: crossing networks of aging and developmental disabilities. Intellect Dev Disabil 2015; 53(5): 329–345.

25.

Breau

Aston

MacLeod

. Education creates comfort and challenges stigma towards children with intellectual disabilities. J Intellect Disabil 2017; 22(1): 18–32.

26.

Ilkhani

Glasper

Jarrett

. Nursing curricula relating to care for disabled children: literature review. Int Nurs Rev 2016; 63(1): 78–83.

27.

Trollor

Eagleson

Turner

, et al.

Intellectual disability content within pre-registration nursing curriculum: how is it taught?

Nurse Educ Today 2018; 69: 48–52.

28.

Appelgren

Bahtsevani

Persson

, et al. Nurses’ experiences of caring for patients with intellectual developmental disorders: a systematic review using a meta-ethnographic approach. BMC Nurs 2018; 17: 51.

29.

McCarron

Sheerin

Roche

, et al. Shaping the future of intellectual disability nursing in Ireland. Dublin: Health Service Executive, 2018.

30.

Northway

Jenkins

McMillan

. Editorial. Contemp Nurse 2014; 49(1): 47–49.

31.

Smeltzer

Blunt

Marozsan

, et al. Inclusion of disability-related content in nurse practitioner curricula. J Am Assoc Nurse Pract 2015; 27(4): 213–221.

32.

Auberry

. Intellectual and developmental disability nursing: current challenges in the USA. Nurs Res Rev 2018; 8: 23.

33.

Nation’s first institute to prepare nurses to care for people with developmental disabilities to open at St. John Fisher College in Rochester, NY, 2018, https://www.prnewswire.com/news-releases/nations-first-institute-to-prepare-nurses-to-care-for-people-with-developmental-disabilities-to-open-at-st-john-fisher-college-in-rochester-ny-300740508.html

34.

Gastmans

. Dignity-enhancing nursing care: a foundational ethical framework. Nurs Ethics 2013; 20(2): 142–149.

35.

Beauchamp

Childress

. Principles of biomedical ethics. Oxford: Oxford University Press, 2013.

36.

Frielink

Schuengel

Embregts

PJCM

. Autonomy support in people with mild-to-borderline intellectual disability: testing the Health Care Climate Questionnaire-Intellectual Disability. J Appl Res Intellect 2018; 31(1): 159–163.

37.

Emond Pelletier

Joussemet

. The benefits of supporting the autonomy of individuals with mild intellectual disabilities: an experimental study. J Appl Res Intellect 2017; 30(5): 830–846.

38.

Jonsen

Siegler

Winslade

. Clinical ethics: a practical approach to ethical decisions in clinical medicine. New York: McGraw-Hill, 2010.

39.

Shalowitz

Garrett-Mayer

Wendler

. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006; 166(5): 493–497.

40.

Appelbaum

. Assessment of patients’ competence to consent to treatment. N Engl J Med 2007; 357(18): 1834–1840.

41.

Kerr

Linehan

. Responding to the needs of people with intellectual disability and epilepsy: shared priorities. J Intellect Dev Dis 2015; 40(3): 248–253.

42.

Nixon

Thomas

SDM

Daffern

, et al. Estimating the risk of crime and victimisation in people with intellectual disability: a data-linkage study. Soc Psychiatry Psychiatr Epidemiol 2017; 52(5): 617–626.

43.

McGilloway

Smith

Galvin

. Barriers faced by adults with intellectual disabilities who experience sexual assault: a systematic review and meta-synthesis. J Appl Res Intellect 2020; 33: 51–66.

44.

Alhaboby

Barnes

Evans

, et al. Challenges facing online research: experiences from research concerning cyber-victimisation of people with disabilities. Cyberpsychology 2017; 11: 8.

45.

Fisher

Baird

Currey

, et al. Victimisation and social vulnerability of adults with intellectual disability: a review of research extending beyond Wilson and Brewer. Aust Psychol 2016; 51(2): 114–127.

46.

Young

Dagnan

Jahoda

. Leaving school: a comparison of the worries held by adolescents with and without intellectual disabilities. J Intellect Disabil Res 2016; 60(1): 9–21.

47.

Petersilia

. Crime victims with developmental disabilities: a review essay. Crim Justice Behav 2001; 28: 655–694.

48.

Harrell

. Crime against persons with disabilities, 2009–2014. Statistical tables. Washington, DC: US Department of Justice Statistics, 2016.

49.

Platt

Powers

Leotti

, et al. The role of gender in violence experienced by adults with developmental disabilities. J Interpers Violence 2015; 32(1): 101–129.

50.

Rava

Shattuck

Rast

, et al. The prevalence and correlates of involvement in the criminal justice system among youth on the autism spectrum. J Autism Dev Disord 2017; 47(2): 340–346.

51.

Fogden

Thomas

SDM

Daffern

, et al. Crime and victimisation in people with intellectual disability: a case linkage study. BMC Psychiatry 2016; 16: 170.

52.

Hodges

Northway

. Exploring professional decision making in relation to safeguarding: a grounded theory study of social workers and community nurses in community learning (intellectual) disability teams in Wales. J Appl Res Intellect 2019; 32(2): 435–445.

53.

Koetting

Fitzpatrick

Lewin

, et al. Nurse practitioner knowledge of child sexual abuse in children with cognitive disabilities. J Forensic Nurs 2012; 8(2): 72–80.

54.

Lindley

Colman

Meadows

Jr . Children with intellectual disability and hospice utilization. J Hosp Palliat Nurs 2017; 19(1): 28–33.

55.

Voss

Vogel

Wagemans

AMA

, et al. Advance care planning in palliative care for people with intellectual disabilities: a systematic review. J Pain Symptom Manage 2017; 54(6): 938–960.

56.

Heslop

Blair

Fleming

, et al. The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study. Lancet 2014; 383(9920): 889–895.

57.

Mildred

. Thinking ahead matters: supporting and improving healthcare decision-making and end-of-life planning for people with intellectual and developmental disabilities. Sacramento, CA: Coalition for Compassionate Care of California, 2015.

58.

Tuffrey-Wijne

. A new model for breaking bad news to people with intellectual disabilities. Palliat Med 2012; 27(1): 5–12.

59.

Watson

Wilson

Hagiliassis

. Supporting end of life decision making: case studies of relational closeness in supported decision making for people with severe or profound intellectual disability. J Appl Res Intellect 2017; 30(6): 1022–1034.

60.

Ferguson

. Care coordination at end of life: the nurse’s role. Nursing 2018; 48(2): 11–13.

61.

Wagemans

AMA

van Schrojenstein Lantman-de

Valk HMJ

Proot

, et al. End-of-life decision-making for people with intellectual disability from the perspective of nurses. J Policy Pract Intel 2015; 12(4): 294–302.

62.

Bekkema

de Veer

Albers

, et al. Training needs of nurses and social workers in the end-of-life care for people with intellectual disabilities: a national survey. Nurse Educ Today 2014; 34(4): 494–500.