Defining dignity at the intersection of disability: a scoping review

Figures & data

Table 1. Inclusion and exclusion criteria for review.

	Inclusion Criteria	Exclusion Criteria
Population	People 18 years of age or older who identify and/or are diagnosed with disability, impairment, illness or injury.	Nurses, health clinicians, or family members as the primary sample population (could be included in sample population if the perspectives of the primary participants were also included). Children
Context	Living with dignity in all life spaces and domains.	Dying with dignity, end-of-life, palliative care, aged care/ nursing homes and/or terminal illness.
Concept	Dignity and dignified care as the critical focus (aims or research question).	Dignity as a finding or explicated in the discussion but not the critical focus of the research aims and design.
Type of studies	Full-text empirical studies - quantitative, qualitative and mixed methods - focused on dignity from the perspective of the participants. Peer-reviewed in academic journals, any field. English 2012–2023	Literature reviews, theoretical papers, evaluations of dignity therapies, implementation studies, protocols, conference abstracts, books, news. Grey literature was excluded.

Figure 1. Flow diagram for review (adapted from PRISMA).

Table 2. Characteristics of included studies.

Author/ Year/ Country	Research questions/aims	Study design	Study Population	Definition of dignity	Key findings
Avestan et al. 2015, Iran [55]	Explore cancer patients’ perceptions of respecting their dignity and related variables.	Descriptive-correlational study	People with cancer 250 participants 5 days passed admission	None articulated	Key threats to dignity include illness related concerns, such as pain, anxiety, fear of death and feeling uncertain about illness. Personal factors can enable or threaten dignity. Social factors, such as private environments and social support can support or threaten dignity. Uncertainty about the ability to work and keeping jobs as well as economic status can threaten dignity.
Azadi et al. 2020, Iran [43]	Explore the perception of dignity for Iranian cancer patients.	Qualitative study Semi-structured interviews	People with cancer 20 participants Life expectancy of more than 6 months	Feeling of worth and pride, related to religion. A person feels “dignified because of some god-given potentials such as the power of reasons, self-awareness and free will.”	Dignity is threatened when people felt like a burden to others, experienced physical distress, medical uncertainty, and privacy boundaries were threatened. In the Iran context, there were additional concerns related to family, including dysfunctional family units and role displacement.
Bagheri et al. 2018a, Iran [36]	Understand the relationship between factors related to dignity based on the Dignity Model. Test the validity of the Dignity Model.	Cross-sectional descriptive-correlational study	People experiencing heart failure (class II-IV). 130 participants In-patient cardiac ward	Dignity is a cultural concept. Based on individual attitudes, values and perceptions. Means being treated with respect.	Social dignity is the biggest single factor impacting on the dignity of patients with heart failure. Dignity is threatened by increased frequency of hospitalisation, increased illness related worries, change in status within family unit and feeling like a burden. Positive interpersonal interactions and communication with respect can enable dignity. Environmental facilities and physical space can also increase dignity.
Bagheri et al. 2018b, Iran [37]	Determining the relationship between illness-related worries and social dignity in patients with heart failure.	Descriptive-analytic design	People experiencing heart failure (class II-IV). 130 participants In-patient cardiac ward	Dignity is a cultural concept. Based on individual attitudes, values and perceptions. Means being treated with respect.	There is significant statistical correlation between illness-related worries and social dignity. The presence of illness, progression of illness, and feeling like a burden to others are threats to dignity.
Bagherian et al. 2020, Iran [40]	Examine the perception of dignity in Iranian cancer patients.	Qualitative study Semi-structured interviews	People with cancer 16 participants In-patient internal medicine ward	Dignity is a cultural concept that reflects religions and cultural beliefs. It is an important element of human rights.	Improving dignity for patients is an essential of nursing care. Key threats to dignity include nudity, illness disclosure, lack of information and understanding. Privacy is critical as are respecting human values, autonomy and transparency. Equality of care and empathy are important enablers of dignity.
Collins et al. 2023, UK and Ireland [44]	Examine experiences of pregnancy, birth and early parenting to correlate with dignity and respect.	Qualitative, narrative study	Women with physical or sensory impairment(s) and one or more children 10 participants	None articulated.	Effective communication with women with disability is best for respecting women’s dignity in childbirth. The impact of less dignified care can deter women from attending birth facilities and have a long-term impact on self-confidence and self-worth.
Frounfelker and Bartone 2021, United States of America [52]	Explore factors that lead to higher satisfaction for participants in day treatment programs who have intellectual disability.	Grounded theory qualitative study	People with intellectual disability, family and staff 25 participants	None articulated.	Building strong relationships between parents, staff, administration and participants creates a positive environment, which increases independence and increases a sense of value and dignity.
Gibson et al. 2012, Canada [45]	Undertake an ethical analysis of what constitutes an adequate home environment for adults with significant mobility disabilities.	Qualitative study Interviews	People with mobility disability and key decision-makers 19 participants Aged 18–55	Dignity is a multidimensional construct and subjective experience of individuals’ own self-worth and self-esteem, as well as the respect and esteem that others show them.	There are 7 threshold conditions are necessary for dignity-enabling homes: (1) ability to form and sustain meaningful relationships; (2) access to community and civic life; (3) access to control and flexibility of daily activities; (4) access to opportunities for self-expression and identity affirmation; (5) access to respectful relationships with attendants; (6) access to opportunities to participate in school, work or leisure; (7) access to physical, psychological and ontological security.
Hubbard et al. 2018, Australia [53]	Trail feasibility and acceptability of a photograph next to the bed in hospital.	Qualitative study Focus groups	People in a geriatric medicine ward, their family and staff members 39 participants	Dignity encompasses respect, honour, esteem and being treated as a human being in a non-judgemental environment.	Dignity comes from the promotion of self-identity, personalising the environment and making connections that are intertwined in the concept of “knowing the person.” Patient dignity can be practically facilitated by use of a tangible item that meaningfully promotes patient identity, social connection and personalisation of space.
Jensen, 2018, United States of America [54]	Understand how humor was used to create a culture of dignity around the stigma of mental illness and homelessness.	Qualitative study Observations Semi-structured interviews	People who attend, work at, and volunteer at a hospitality home 15 participants Some with mental illness	Dignity is rooted in daily communicative practice and negotiation between culturally embedded interactants.	Humor and counter-intuitive communication practices were used to cocreate a communicative context that enabled dignity for the guests. Humor can be used to create a culture of dignity as a communicative process.
Khorasanizadeh et al. 2018, Iran [56]	Understand perspectives about the observance of dignity of patients.	Cross-sectional quantitative study	Staff, nursing students, and people receiving care in a psychiatric ward 300 participants Staff, students and clients in equal distribution	Dignity is defined as independence and respect.	Good communication and respect are integral to the observance of patients’ dignity.
Kirk et al. 2021 [46]	Explore the meaning that elite athletes with disabilities ascribe to their participation in a sport focused disability awareness program intended for undergraduate kinesiology majors.	Phenomenological qualitative study	Elite athletes with physical disabilities 4 participants Aged 20–29	Dignity is related to self-esteem, worth, autonomy and respect from others.	Showcasing elite athletes as elite resulted in being viewed as worthy of respect and esteem. They also want to be treated as individuals with self-worth. Athletes felt a sense of pride and autonomy related to dignity.
Kracmarova et al. 2022, Czech Republic [57]	Explore the factors that contribute to dignity for men and women with dementia.	Cross-sectional study conducted as part of a longitudinal study.	People with early-stage dementia 316 participants Community-dwelling Aged 60+	Dignity is a multidimensional construct that includes perception, knowledge and emotions related to competence or respect. It is a subjective experience of individual’s own self-worth and self-esteem, as well as the respect and esteem that others show them.	People who live in their own homes experience less affronts to dignity. Dignity is enabled by positive attitudes to aging and higher self-sufficiency in activities of daily living. Dignity is inhibited by pain and depression.
Lind et al. 2014, United States of America [3]	Explore the ways in which dignity was defined negotiated, and conferred during patient and provider interactions. Goal of suggesting ways in which patient dignity can be maintained.	Mixed-methods qualitative case study	Veterans with spinal cord injury and staff at a VA hospital 102 participants 48 veterans receiving inpatient care 54 staff	Dignity defined as self-respect, how people are treated by others and how they feel about themselves. Self-advocacy, self-reliance and pride are closely associated.	Patient dignity is sometimes compromised and best practices for negotiating care are not always implemented. There is a dual definition of dignity- the dignity of self and dignity of other. It is critical to negotiate patient care amongst interdisciplinary teams and patients. Flexibility is key.
Lopez et al. 2017, Canada [47]	Adaptation of the Patient Dignity Question was formalised for persons receiving treatment for TB.	Qualitative study Patient dignity question Interviews	People with tuberculosis 31 participants Out-patients	Dignity implies that all persons have inherent worth and value. It is associated with flourishing of personhood and is essential to the condition of being human.	The Patient Dignity Question is critical for delivering person-centred care. Only 1/3 of Health Care Professionals indicated that the PDQ influenced them in various ways.
Philipp et al. 2016, Germany [58]	Explore the extent to which early and advanced cancer patients undergoing oncological treatment experience loss of dignity at baseline and after 3 months.	Quantitative questionnaire study	People receiving curative and palliative oncological treatment. 178 participants Both in-patient and out-patients	Dignity is constructed through social relationships and human dignity recognises the inherent value of people.	Loss of dignity is a frequent problem for cancer patients. Detrimental interactions that weaken the sense of dignity may result from discrepancies with patients’ need for autonomy and security. Tailoring social support to patients needs may also help conserve dignity.
Podolinska and Cap, 2021, Slovakia [48]	Identify the impact of MS on the dignity of patients.	Descriptive qualitative study	People with Multiple Sclerosis. 8 participants	Dignity is intrinsic and extrinsic. Intrinsic dignity relates to internal and essential characteristics. Extrinsic dignity relates to external, acquired and dynamic quality can be violated and lost.	Illness related factors of MS can violate patients’ dignity due to radical life changes and deprivation of their previous life. Stigma, prejudice, and pity as well as worries about the future can negatively impact on dignity.
Rannikko et al. 2019, Finland [41]	Create a theoretical construct to describe the dignity realisation of patients with stroke in hospital care.	Grounded theory qualitative study	People with stroke 16 participants Neurological hospital ward	There are 5 types of dignity realisation- person- related dignity, independence-related dignity, social-related dignity, care-related dignity, Jacobson’s dignity. Human dignity represents the value of every human being and social dignity manifests in the relation to both self and others.	Maintenance of patient dignity may result in better patient outcomes and shorter stays in hospital. Losing control of the future and feeling dependent may impact on dignity. The patient being valued, with independence may enhance dignity.
Tehranineshat et al. 2021, Iran [49]	Identify and describe burn patients’ dignity.	Descriptive qualitative study	People with burns, their family and caregivers, and nurses 25 participants In-patient burn unit	Dignity is comprised of intrinsic personhood, rational/behavioural sociability, respect and independence.	Burn patients are in a particularly precarious dignity position, due to the nature of injury, duration of hospital stay and the impact of injury on their lives.
Tomkins et al. 2013, Australia [50]	Understand factors influencing satisfaction or dissatisfaction of people with aphasia in regards to their healthcare.	Qualitative descriptive phenomenology study	People with aphasia 50 participants	Dignity is feeling recognised and accepted as an intelligent and important person, and more specifically that they remained the same person, despite their communication disorder.	Dignity and respect are a core factor of patient satisfaction.
Ziakova et al. 2020, Slovakia [42]	Explore the sense of dignity experienced by people with Multiple Sclerosis.	Interpretative phenomenological analysis design	People with Multiple Sclerosis 14 participants	Human dignity is a universal principle belonging to human by virtue of being human. Dignity of self is a quality of self-respect and self-worth that is identified with characteristics such as confidence and integrity. Dignity refers to the ways in which resect and worth are conveyed through interaction.	Dignity encounters promote satisfaction with care, positively impact on health and well-being, and increase feelings of safety. However, dignity encounters don’t always occur.
Zotterman et al. 2022 [51]	Describe experiences of dignity encounters from perspective of people with long-term illness and their relatives.	Qualitative descriptive design	Couples with one partner with a long-term illness 5 couples, 10 participants total Aged 65–87	Dignity encounters result when people have a supported, accessible primary care contact; are listened to and understood; and are treated with respect.	Dignity encounters promote satisfaction with care, positively impact on health and well-being; and increase feelings of safety. Dignity is a prerequisite for caring and trusting relationships where the patients and close relatives’ needs and resources are supported and protected. When a patient was seen holistically as an entity with physical, psychological, social and existential needs.

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