A scoping review to explore the experiences and outcomes of younger people with disabilities in residential aged care facilities

Figures & data

Figure 1. PRISMA flow diagram.

Table 1. Characteristics of included studies.

Authors	Residential context	Method
Barry et al. (1)	Australia Participants had previously lived in/were currently living in Residential Aged Care (RAC) or were a family member of a young person living in RAC	Qualitative Scientific textual analysis of publicly available data (submissions to the 2015 Australian Senate Inquiry). Inductive thematic analysis
Carling-Jenkins et al. (30)	Australia Two participants had moved to a residential aged care facility	Qualitative Two semi-structured interviews. Thematic analysis
Colantonio et al. (31)	Canada All participants living in long-term care homes (designed for older residents)	Quantitative Data from the Ministry of Health Levels of Care dataset
Dearn (32)	Australia All participants were living in, or had recently been discharged from, RAC at time of death. Participants had spent 2–6 years in RAC	Qualitative Unstructured interviews using an explanatory case study approach
Dwyer et al. (33)	Ireland All had lived in a nursing home (approximately 3 years average duration), 2 had transitioned out in the past 5 years	Qualitative Semi-structured interviews, 67–154 minutes each. Interpretative phenomenological analysis
Hay & Chaudhury (34)	Canada 2 geriatric care facilities	Qualitative Semi-structured interviews, 20–85 minutes each. Exploratory qualitative design
Persson & Ostwald (35)	USA All participants were currently living/working in a nursing home	Mixed Methods: Quantitative: Minimum Data Set (MDS) Qualitative: Focus groups (individual and group), 30–60 minutes. Content analysis
Smith & Caddick (3)	UK All had lived in a nursing home (2.3 years average duration), 6 had recently returned to private homes	Qualitative Semi-structured interviews, approximately 120 minutes each. Inductive thematic analysis
Winkler et al. (36)	Australia All had lived in a nursing home; 20 had transitioned into supported shared accommodation	Mixed Methods Qualitative: semi-structured interviews. Inductive thematic analysis Quantitative: survey and structured interview responses
Winkler et al. (37)	Australia All participants had previously lived in aged care	Qualitative Semi-structured interviews (face-to-face), 40–157 minutes (M = 80). Inductive grounded theory approach
Winkler, Sloan & Callaway (7)	Australia Participants were currently living in residential aged care facilities	Mixed Methods Quantitative: Cross-sectional survey Qualitative: Open ended questions – coded into meaningful conceptual units then each category was examined for shared tenets

Table 2. Quantitatively assessed outcome measures mapped onto the international classification of functioning, disability and health.

Type	Component	Domain	Measures used	Studies reporting use
Functioning and disability	Activities and participation	Participation and social role	Resident Choice Scale	(36, 37)
			Role Checklist	(37)
			Community Integration Questionnaire (CIQ)	(37)
			Preference for future accommodation and support	(37)
		Activities of daily living	Activities of daily living via Minimum Data Set (MDS)	(35)
	Body functions	Cognitive functions	Functional characteristics (via MDS)	(35)
Contextual factors	Personal factors		Health (including the incidence of elective and non-elective admissions to an acute hospital in the past 12 months and the number of days in bed in the past week due to illness or injury)	(37)
			Health of the Nation Scale – Acquired Brain Injury (HoNOS-ABI)	(37)
			Overt Behavior Scale (OBS)	(37)
	Environmental factors		Care and Needs Scale (CANS)	(36, 37)
			Residential Classification Scale (RCS)	(37)
			Level of care needed (via Ministry of Health Levels of Care dataset)	(31)
			Potential for discharge (via MDS)	(35)
Multidimensional			Level of awareness	(36, 37)

Table 3. Participant characteristics.

		Data Source
Authors	Participants	Person	Family	Worker	Type of Disability	Other disability related characteristics
Barry et al. (1)	24 young people: 12 male, 12 female; age (years): all under 65 years, mean and range not reported 35 family members: 9 male, 26 female; age (years): mean and range not reported	✓	✓	✗	Acquired neurological disorder (5 traumatic brain injury, 10 non-traumatic brain injury, 6 progressive neurological, 3 not stated)	Not reported
Carling-Jenkins et al. (30)	Families and carers of 3 young people (up to four per young person): 2 male, 1 female; age (years): mean not reported; range = 47–62	✗	✓	✓	Down syndrome and Alzheimer’s disease	Not reported
Colantonio et al. (31)	Administrative data from 154 participants: 105 male, 49 female; age (years): all under 65 years, mean and range not reported	✗	✗	✓	Traumatic brain injury	Not reported
Dearn (32)	Case managers of 3 young people who had died in residential aged care (or in an acute or respite setting after discharge from residential aged care): 1 male, 2 female; age (years): mean (not reported, but 30), range = 24–44	✗	✗	✓	Acquired brain injury, intellectual disability, congenital condition and degenerative condition	Not reported
Dwyer et al. (33)	6 young people: 5 male, 1 female; age (years): mean = 45, range = 38–53	✓	✗	✗	Acquired brain injury	Level of disability: 6 severe*
Hay & Chaudhury (34)	19 young people: 14 male, 5 female; age (years): mean not reported, range = 40–68 (unknown how many over 65)	✓	✗	✓	Neurological conditions (multiple sclerosis, diabetes, substance and mental health conditions)	Level of disability: 11 mild, 8 severe*
Persson & Ostwald (35)	136 young people: 90 male, 46 female; age (years): mean = 51.3, range = 23.6–64.8. Also nursing facility staff and administrative data	✓	✗	✓	Stroke (34%), seizure (24%), hemiplegic (19%), and 20% diagnosed with schizophrenia or bipolar disorders	Not reported
Smith & Caddick (3)	20 young people: 15 male, 5 female; age (years): mean = 31, range = 21–70	✓	✗	✗	Spinal cord injury	Not reported
Winkler et al. (36)	45 young people living in residential aged care: 28 male, 17 female; age (years): mean = 42, range = 20–50. 20 young people living in shared supported accommodation: 14 male, 6 female; age (years): mean = 42, range = 20–50	✓	✓	✗	Acquired brain injury	Support needs: RAC: high (85% daily support required) Shared supported accommodation: high (100% daily support required)
Winkler et al. (37)	7 young people: 4 male, 3 female; age (years): mean = 38.1, range = 20–57. Also a family caregiver of each individual and two support workers nominated by participants	✓	✓	✓	Acquired brain injury	Level of disability: very severe*
Winkler, Sloan & Callaway (7)	61 young people: 38 male, 23 female; age (years): mean = 41.7, range = 20–50. Family, friends, paid workers, residential aged care staff and allied health professionals also provided information	✓	✓	✓	Acquired brain injury	Support needs: 79% required high care, 44% required the highest level of care, and 21% required a “hostel” level of care

Table 4. Quantitative research results.

Authors	Quantitative Results
Winkler et al. (36)	No statistically significant differences between shared supported accommodation and residential aged care residents on characteristics (including age, gender, and length of time living in residential aged care, the amount of time they could be left alone, or level of awareness Residents living in shared supported accommodation had significantly higher scores on meal choice, meal timing, indoor leisure, going out, bed time, clothing, daytime activities, time spent in the shower or bath, access to private area and bedroom furnishing compared to living in residential aged care. There was no significant difference between groups regarding involvement of intimate partners
Winkler, Sloan & Callaway (7)	Young people did not have a choice regarding the time they went to bed (61%) or the content of their meals (80%) Valued life roles were lost: 93% lost being a worker, 87% a home maintainer, 61% a caregiver and 52% lost being a friend A low level of community participation was reported (CIQ; M = 4.82, SD = 3.04) Alternative accommodation and support options were preferred by 81% of young people, including living in shared supported accommodation (71%), a private or family residence (11%) and other options (17%) such as living independently in a unit with individual support or living in a unit attached to a hospital
Persson & Ostwald (35)	No statistical differences between age and functional characteristics, desire to return to the community, family support for discharge, and predicted duration of stay in the nursing home facility Younger residents tended to be isolated: 48% spent most of their time alone or watching television, only 42% had daily contact with relatives and/or close friends, and 19% were involved in group activities. The most common activities were watching television, listening to music, visiting, and participating in religious activities. Less than half went outdoors or participated in exercise or sports It was clinically determined that this population had little potential for discharge and 82% were expected to have a long stay in the nursing home facility 23% of the residents expressed a desire to return to the community, yet only 7% had a support person who was positive toward discharge

Table 5. Author identified themes from qualitative studies.

Authors	Themes and Sub-themes
Barry et al. (1)	1. Experiencing a Health Crisis 2. Being ambushed: Time’s Up? 3. Making a Decision: No Time, No Knowledge, and No Choice 4. No Time: 4.1. A sudden event, 4.2. Time as pressure 4.3. Time to prove oneself 5. No Knowledge: 5.1. Access to knowledge, 5.2. Difficulty absorbing knowledge 6. No Choice
Carling-Jenkins (30)	1. A common story with different endings
Dearn (32)	1. Environment: 1.1. Level of care, 1.2. Expertise, 1.3. Training, 1.4. Equipment 2. Funding: 2.1. Funding delays, 2.3. Dying before funded, 2.4. Prior to funding, 2.5. Life after My Future My Choice 3. Monitoring/Accountability: 3.1. Outcomes, 3.2. Risks/clinical issues, 3.3. Reporting death
Dwyer et al. (33)	1. Corporeal prison of acquired brain injury: broken selves 2. Existential prison of the nursing home: stagnated lives: 2.1. I don’t belong here: living in God’s waiting room, 2.2. Confinement and punishment: What have I done wrong? 2.3. Institutional life: disempowerment and dehumanization
Hay & Chaudhury (34)	1. A New Chapter in Life: 1.1. Defining quality of life, 1.2. Adapting to a new life 2. Experiencing Quality of Life: 2.1. Frustrations, 2.2. Quality of care, 2.3. Environment, 2.4. Unmet needs, 2.5. Money matters 3. Nature of Social Life: 3.1. Challenges in environment, 3.2. Community connections, 3.4. Interactions with other residents
Persson & Ostwald (35)	1. Experiences of residences: 1.1. Regimentation of life, 1.2. Activities give you freedom, Being a captive, 1.3. Our life slices are very different 2. Perceptions of staff: 2.1. It’s a different population, 2.2. Four seasons services on a Motel 6 Budget, 2.3. It takes a community
Smith & Caddick (3)	1. Damage to Quality of Life: 1.1. Lack of Independence: Freedom, 1.2. Control and Flexibility, 1.3. Inability to Participate in Community Life, 1.4. Inability to Sustain to Meaningful Relationships 2. Damage to Physical Health: 2.1. Safety 3. Damage to Psychological Wellbeing 4. Restricted Participation in Work and Leisure Time Physical Activity 5. Life on Hold: Lack of Meaning, Self-Expression, and a Future 6. Loneliness 7. Difficulties with the Re-Housing Process 8. Depression 9. Suicidal Thoughts and Actions
Winkler et al. (36)	1. Rules and routines 2. Communication 3. Things to do 4. Food 5. Home-like environment
Winkler et al. (37)	1. Anticipated outcomes of transitions 2. Key outcomes of transition: 2.1. Independence, 2.1.1. Improved continence, 2.1.2. Getting around and movement, 2.1.3. Speaking, 2.1.4. Swallowing and eating, 2.2. Well-being, 2.2.1. Happier and less distressed, 2.2.2. Less difficult behaviour, 2.3. Soci-Environmental factors that facilitated positive outcomes in the community setting inclusion: 2.3.1. Having things to do, 2.3.2. Being known in the community, 2.3.3. Friends and family 3. Environmental factors: 3.1. Physical, 3.1.1. Staff haven’t got time, 3.1.2. Consistency is so important, 3.2. Attitudinal, 3.2.1. Respect and dignity

Table 6. Policy, practice and research recommendations.

Authors	Policy and Practice Recommendations	Research Recommendations
Barry et al. (1)	Implementation of specialist and skilled independent advocates Development of innovative housing alternatives Increased access to effective, individualized and extended rehabilitation services, particularly within residential aged care A better integrated service system Easy access to comprehensive, consistent written information concerning the availability of and eligibility for rehabilitation, pathways and funding to support future transition from residential aged care Implementation of reliable review mechanisms Improved communication from acute care professionals	Research into the perspectives of those who have avoided residential aged care Research into how discharge criteria and post-acute care availability contribute to the decisions regarding residential aged care
Carling-Jenkins et al. (30)	Increased knowledge and expertise in identifying and addressing care and support needs of Alzheimer’s disease in people with Down syndrome, particularly for aged care professionals	Research into the nexus between disability and aged care supports Research into service pathways and service gaps Larger scale studies to determine when families require strong supports from both the disability and aged care sectors
Colantonio et al. (31)	Examination of the continuum of care for acquired brain injury clients Develop specialist nursing homes that involve rehabilitation consultants Use of alternative community-based and rehabilitation programs	Investigation of how Ontario long-term care home staff are equipped to deal with high need behavioural clients A more in-depth examination of consumers, staff and other stakeholders
Dearn (32)	More support in residential aged care facilities to provide adequate care for young people with complex conditions and disabilities The coroner to consider people under 50 years of age who die in aged care facilities as “reviewable deaths” Procedures that facilitate a stronger interface between health, disability and aging Systematic monitoring of young people in residential aged care	Investigation into the proportion of deaths of young people in aged care that occur due to aspiration pneumonia and choking
Dwyer et al. (33)	Clarification of the acquired brain injury care pathway in Ireland Development of integrated, home-like rehabilitation services in the community and the adoption of a rehabilitative ethos in nursing homes Education of nursing home staff on challenges young people with acquired brain injury face	Replica studies to increase evidence base Research among adults in their twenties to draw comparisons
Hay & Chaudhury (34)	Create a separate wing in care facilities to house younger residents Implementation of responsive care, appropriate activities, staff training, support and resources to better accommodate for younger residents Care facilities need to recognize the shift in clientele and the associated psychosocial needs of this population	Research into the prevalence, rate of increase and the issues and needs of younger residents
Persson & Otswald (35)	Support from top administration in nursing homes to allow nurses to provide a holistic approach to care Environmental changes to nursing homes to facilitate independent movement around the facility and to ensure privacy Separate wing designated to younger residents with more age-appropriate resources Consideration of social needs of younger residents by nurses, the introduction of more engaging activities for the group and making the nursing home more welcoming to visitors Educate staff regarding the needs of younger residents Community volunteers to help provide needed one-on-one interaction and supplement the number of staff for outings Implementation of a thorough needs assessment	More structured instruments and interviews are required to gain more complete information on resident characteristics, reasons for admission, and personal, social, and family history Greater exploration of the psychosocial needs of these residents and the development of intervention studies to test ways to improve their quality of life Research into the knowledge and skills of the nursing staff in order to implement and test training programs Research into the psychological and social implications of repetitive grief due to loss of elderly roommates Issues around intimacy must be explored
Smith & Caddick (3)	Formal and certified training in caring for individuals with Spinal Cord Injury for care home staff Appropriate facilities and equipment to meet the needs of young residents in care homes Faster grant processes to enable young people to move into an adapted home Provide private rooms in the care home for younger residents Regular consultation with young people regarding their needs and how they can be met More accessible housing options (e.g., adapted properties, suitable location, accessible housing register)	Not reported
Winkler et al. (36)	Build, develop and maintain living environments for people with acquired brain injury with high and complex needs Adjust service practice to increase opportunities for choice in daily living The physical design of housing, number of co-residents and culture and ratio of staff to residents, need to be considered in order to maximize choice making	Follow up participants over time Examine the attitudinal environment of paid support longitudinally and how this impacts choice making Research into barriers and facilitators of choice and control for people with acquired brain injury living with high levels of daily support Research to either validate the Resident Choice Scale among this population, or the development of a new measure Consideration of research design which includes structured observation of opportunities for choice making within living environments Research into the support in decision making and choices afforded to people with disability by both disability support providers and the wider community Research on the features of an environment (both built and attitudinal) that create choice for people
Winkler et al. (37)	Not reported	Research into the cost-benefits of moving from aged care to the community utilizing a range of measures Outcome studies need to pilot and utilize tools that can be completed by other informants such as significant others and workers. Moreover, identify suitable measures to evaluate and monitor community-based accommodation and support services for people with severe acquired brain injury Outcome studies which examine the efficacy of these services and document changes in the health and wellbeing of the target group Evaluate and monitor community-based accommodation and support services for people with severe acquired brain injury using suitable measures
Winkler, Sloan & Callaway (7)	The development of holistic, individualized plans in a timely manner to prevent escalation and entrenchment of behaviours Appropriate accommodation and support options that provide a combination of disability supports, rehabilitation and health services for people at risk of admission to residential aged care Education on specific care needs (e.g., appropriate mealtime assistance routines, how to use equipment to ensure meals are undertaken safely) Individually tailored service provisions that consider the person’s capacity to make choices and be involved in planning and support provision. Structure or modify physical and attitudinal environments to minimize confusion or disorientation Training of disability support workers by a multi-disciplinary team to foster community inclusion Staff need the skills to foster communication, making everyday choices, social and family relationships and community inclusion Preventative outreach services, community-based care and specialist support secondary consultation with accommodation support staff can reduce costs of care and improve health and wellbeing	Research into the effectiveness of health promotion and preventative measures to decrease hospital admissions and improve health for young people with acquired brain injury Outcome studies to evaluate the efficacy of services and to document changes in health and wellbeing of young people with acquired brain injury

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