The outcomes of individualized housing for people with disability and complex needs: a scoping review

Figures & data

Table 1. Exclusion criteria development.

	Title/ Abstract screening	Full text screening
Time period	1. Before 1999	1. Before 1999
Publication type	1. In language other than English	1. In language other than English
	2. Grey literature, non peer-reviewed journals, theses, conference proceedings, unobtainable during review period	2. Grey literature, non peer-reviewed journals, theses, conference proceedings, unobtainable during review period
	3. Articles with no extractable data: literature reviews, book chapters, commentary, editorial	3. Articles with no extractable data: literature reviews, book chapters, commentary, editorial
Population	1. Aged under 18 or over 65 years	1. Aged under 18 or over 65 years
	2. Mild disability	2. Mild disability
	3. Does not have complex needs or high support needs	3. Does not have complex needs or high support needs
	4. Mental health without complex needs	4. Mental health without complex needs
		5. Does not provide adequate information to determine population characteristics
Setting	1. Located in institutional or shared living facilities	1. Located in institutional or shared living facilities
		2. Does not specify participants are, or were, living in individualized housing
		3. Doesn't define housing or living situation
Study design	1. Individualized housing is an outcome	1. Independent living is an outcome
		2. Does not separate groups based on living situation throughout paper
		3. Doesn't provide characteristics of people
		4. If includes participants over or under 65 exclude if groups are not separated by age throughout study
		5. If includes various disability levels exclude if groups are not separated based on disability level
		6. If does not separate by disability level must have more than half meeting population criteria
		7. If does not separate by age must have majority under 65 and over 18
		8. If does not separate by housing must have more than half meeting housing criteria

Table 2. Guiding terms used to indicate housing type.

	Individualized	Other	Ambiguous
Descriptors	Personalized housing, independent living, self-directed housing, housing, own home, unsegregated, purpose-built apartment	Group home, agency housing, temporary housing, accommodation, shared supported accommodation, short term accommodation, community-based residential services, segregated, group homes, institution, boarding house, hostel, nursing home, non-community based, family-model homes	Supervised living, semi-independent living, social housing, clustered housing, intentional community, community housing, assisted living, home share, small residential home, dispersed housing, parent or relatives’ home
Characteristics	Choice, tenancy, home ownership, living like everyone else, living an ordinary life, age-appropriate	Placement, service users, clients, consumer, segregated, scheduled routine, isolated, temporary, isolated, segregated, house manager	Person-centred, individualized support, shared facilities, residents

Figure 1. PRISMA flow diagram.

Table 3. Participant characteristics.

Author	Primary disability	Comorbidities	Individualized housing	Comparison setting	Respondent(s)
Bigby et al. [39]	Intellectual disability	An average of 6 additional health conditions such problems with weight, joint and muscle pain, hearing, dental/oral and hygiene, mental health and physical impairments	Supported living* N = 29	Group homes N = 29	Participant Staff member
Cocks et al. [40]	Intellectual disability	Cerebral Palsy, mental illness, Prader-Willi syndrome, epilepsy	Supported living* N = 5	Host family N = 1	Participant Staff member Close other
Emerson et al. [41]	Mental retardation	Autism, mental health and high health needs	Supported living* N = 63	Small (1 to 3 residents) and large group homes (4 to 6 residents) N = 207	Participant Staff member
Emerson and McVilly [42]	Intellectual disability	Not reported	Home owners, people with tenancy, small residential homes* N = 942	Larger homes (4+ residents), nursing homes, NHS provision, adult placement N = 417	Participant Staff member
Felce et al. [43]	Intellectual disability	Triad of impairments characteristic of autism spectrum disorder	Living independently N = 30	Family homes, staffed homes N = 701	Not reported
Friedman [44]	Intellectual and developmental disability	Not reported	Own home* N = 284	Provider owned group homes, state-operated group homes, intermediate care facilities, family home, other (e.g., nursing home, foster care) N = 1,057	Participant
Gardner and Carran [45]	Mental Retardation, Cerebral palsy, Autism, Seizure, Hearing, Vision, Mobility, Physical, Traumatic Brain Injury, Mentally Ill	Not reported	Living independently, supported living arrangements N = 708	Supervised living arrangements, foster families, natural families N = 2305	Participant
Ho et al. [46]	Spinal cord injury, Diabetes, Amputation, Fractured leg or hip, Stroke, Arthritis (hip or ankle), Brain injury & Others	Not reported	Private residences N = 8	Homeless shelters, nursing homes N = 20	Participant
Houseworth et al. [47]	Intellectual disability	Not reported	Living independently (home or apartment) (Total N = 15,248)	Parents or relatives’ home, foster or host home, agency (1-3 residents), agency (4-6 residents), agency (7-16 residents), agency (16+ residents) (Total N = 15,248)	Participant Staff member
Marlow and Walker [48]	Intellectual disability	Autism, Epilepsy, wheelchair users, down syndrome, visual impairment	New-build individual flats* N = 6	Pre-move data N = 6	Close other Staff member
McColl et al. [49]	Acquired brain injury	Not reported	Own apartments* N = 3	Family members, significant others, service providers N = 17	Participant Close other Staff member
McConkey et al. [50]	Intellectual Disability & Mental health problems	Not reported	Personalized arrangements* N = 72	Group homes, congregated settings, family carers N = 84	Participant Staff member
McConkey et al. [51]	Intellectual disability	Epilepsy, medical conditions affecting daily life, autism, feeling down/ depressed	Personalized arrangements (living alone or with a friend)* N = 29	Group homes, congregated settings N = 60	Participant
McConkey et al. [52]	Intellectual disability & mental health problems	Not reported	Personalized arrangements (living alone or with a friend of their choosing) * N = 58	Group homes, congregated settings or family carers N = 75	Participant
Salovita and Aberg [53]	Learning disability	Not reported	Living in an apartment* N = 12	Group homes, institution N = 42	Participant
Sheth et al. [54]	Physical Disability, Psychiatric Disability, Chronic Health Condition, Blindness or Vision Loss, Cognitive Disability, Speech/ Communication Difficulties, Deaf or Hearing Loss Intellectual Disability, Autism, Other Conditions	Respondents could choose more than one disability category	Apartment/condominium/private home/townhouse, public housing, residential group homes (<6 residents), other N = 150	Nursing home, institute for mental disease/ immediate care facility, residential group home (6 + residents), state-operated institution, assisted living N = 150	Participant
Stainton et al. [55]	Intellectual disability	An average of 2 additional diagnoses such as autism, mental illness, communication disorders, physical disability or hearing or vision impairment	Independent home or apartment, agency-owned apartment N = 104	Group home, long-term care or extended care facility, at home with family members, living in "other" type of setting N = 710	Close other
Stancliffe and Keane [56]	Intellectual disability	Cerebral palsy, chronic health problem, deafness, epilepsy, psychiatric and other conditions	Semi-independent living* N = 27	Group homes N = 27	Participant Close other
Ticha et al. [57]	Intellectual disability	Mobility limitations, vision or hearing impairments, mental health diagnosis or taking psychotropic medications, autism	Own home N = 1221	Natural family, host family, Agency 1-3ppl, Agency 4-6 ppl, Agency 7-15 ppl, Agency 16 + ppl N = 7671	Participant Close other
Valk-Kleibeuker et al. [58]	Traumatic brain injury	Not reported	Home N = 45	Rehabilitation centre, nursing home N = 53	Participant Family member Staff member
Wehmeyer and Bolding [59]	Mental retardation	Not reported	Community-based group* N = 91	Community-based congregate group, noncommunity-based congregate group N = 182	Participant
Wehmeyer and Bolding [60]	Intellectual disability	Not reported	Community-based group* N = 31	Community-based congregate group, noncommunity-based congregate group N = 31	Participant

*Includes definition of individualized housing.

Table 4. Study characteristics and outcomes.

Author, Year, Country	Study design, method	Outcomes	Main findings
Bigby et al. [39] Australia, 2018	Mixed Methods, matched sample Survey, semi-structured interviews	Quality of Life Support and participation	Compared to group homes, supported living residents had significantly more access to social clubs and was significantly cheaper
Cocks et al. [40] Australia 2016	Qualitative, consensus-seeking process Semi-structured interview	N/A	Successful approaches to individual supported living are diverse, formal and informal support environments are important factors
Emerson et al. [41] United Kingdom, 2001	Quantitative, cross- sectional Questionnaire, structured interviews	Setting procedures 'Institutional features' Leisure and community-based activities Social networks and support Choice and control over key aspects of life Risk of accidents, injuries, abuse and exploitation	People living in supported living arrangements reported greater choice, more community-based activities, fewer scheduled activities, were more likely to have their home vandalized and were considered at greater risk of exploitation when compared with small group homes; no significant differences between living settings in service costs
Emerson and McVilly [42] United Kingdom, 2004	Quantitative, cross-sectional Secondary analysis of merged data sets	Residential support Community involvement Friendship activities	Supported accommodation residents experienced low levels of friendship activities, residential setting is a more significant determinant of the form and content of friendship activities than participant characteristics
Felce et al. [43] Wales, 2011	Quantitative, cross-sectional Secondary analysis of four merged datasets	Participant’s involvement in domestic activities Variety and frequency of participants’ social and community activities	People living independently participated in significantly more domestic activities compared to people in family and staffed homes
Friedman. [44] USA, 2019	Quantitative, cross-sectional Secondary analysis of survey data	Personal Outcomes	Controlling for impairment level, participants living in their own homes had significantly higher levels of choice and community participation compared to group homes and institutional settings.
Gardner and Carran [45] Columbia, 2005	Quantitative, cross-sectional Secondary analysis of state collected data	Personal Outcomes	Independent living had a significantly greater percentage of personal outcomes than supported living and living with natural families; natural support systems are important for personal safety and freedom from abuse and neglect
Ho et al. [46] USA, 2007	Qualitative, semi-structured focus group discussion	N/A	Participants living in inaccessible apartments or houses worried about their ability to maintain daily living and social activities; participants perceived barrier-free housing to be a pre-requisite for independent living and for ensuring basic health and wellbeing
Houseworth, Stancliffe and Tichá [47] USA, 2018	Quantitative, cross-sectional Secondary analysis of state collected data	Support-related and everyday choice	High levels of support-related choice and everyday choice were significantly associated with living in an independent home or apartment
Marlow and Walker, [48] United Kingdom, 2015	Quantitative, repeated measures, natural experiment Structured interview	Quality of life Emotional well-being Living skills Interactions Staff and carers opinions	Following the move to supported living, tenant’s mood increased and challenging behaviour decreased; changes were maintained after 6 months; time spent in activities outside house was low (inferential statistics not reported)
McColl et al. [49] Canada, 1999	Qualitative, consensus-seeking process	N/A	Common factors that contributed to successful transitions to independent living included support from family and programme personnel; staying away from drugs and alcohol; availability of structured daily activities, financial management and emotion and behaviour self-control
McConkey et al. [50] Ireland, 2016	Quantitative, natural experiment Structured interview	Ratings of Change Choice and Control Daily Activity Relationships Staff Costs	People living in personalized arrangements reported greater choice, control, community engagement and personal relationships as well as lower average staff costs when compared to people living in group homes and congregated settings
McConkey et al. [51] Ireland, 2018	Quantitative, natural experiment Structured interview	Support needs Wellbeing Staff rating	People who moved into personalized living arrangements from congregated settings reported significant improvement in well-being; mean well-being scores were significantly higher for persons with higher support needs.
McConkey et al. [52] Ireland 2019	Quantitative, natural experiment Structured interviews	Social relationships at two time points	People who moved to personalized arrangements had more social relationships compared to those who remained in group settings; changes were maintained after 24 months; one in five persons increased their social relationships due to moving to personalized arrangements.
Salovita and Aberg [53] Finland, 2000	Quantitative, cross-sectional Structured interviews	Self Determination	People who were living in single apartments reported significantly higher levels of self-determination compared to people in group homes and hospital wards; level of disability did not explain differences in self-determination between housing types.
Sheth et al. [54] USA, 2019	Quantitative, cross-sectional Questionnaire	Quality of Life	People who lived in community settings reported significantly higher satisfaction, personal safety, service access, and community integration and inclusion compared to people living in institutional settings.
Stainton et al. [55] Canada, 2011	Quantitative, cross- sectional Questionnaire	Information and planning Access to and delivery of supports Choice and control Community connections Satisfaction with services Overall perception of outcomes	People who living in independent and family homes settings reported significantly greater choice and control in regards to staff compared to group homes and family model homes; group homes and family model homes showed significantly better outcomes on all other measures
Stancliffe and Keane [56] Australia, 2000	Quantitative, matched sample Structured interview Questionnaire Administrative data	Loneliness Safety Quality of life Community living Staff support Service costs	People living in semi-independent arrangements reported significantly more frequent and independent use of community facilities, greater participation in domestic tasks, greater empowerment, less social dissatisfaction; and lower per person expenditure compared to people living in group homes
Ticha et al. [57] USA, 2012	Quantitative, state collected data Structured interviews	Every day and support-related choice	Controlling for personal characteristics, individuals living in their own home had significantly more support-related choices than people living in any other residential arrangement
Valk-Kleibeuker et al. [58] The Netherlands, 2014	Quantitative, longitudinal Structured interviews Questionnaire,	Emotional status Physical and cognitive functioning	Patients discharged home had better mood scores over time than patients discharged to rehabilitation centres or nursing homes. Mood improved 18 months after Traumatic Brain Injury when motor and cognitive outcomes stabilized
Wehmeyer and Bolding [59] USA, 1999	Quantitative, matched sample Questionnaire	Self-Determination Autonomy in Self and Family Care Life and daily choices Satisfaction across employment domains	People who lived in community-based settings reported significantly more self-determination, autonomy and life choices than people who lived in more restrictive settings (e.g., group homes, nursing homes)
Wehymeyer and Bolding [60] USA, 2001	Quantitative, within-subjects Questionnaire	Self-Determination Autonomy in Self and Family Care Life and daily choices	People who moved to community-based settings from more restrictive settings (e.g., group homes, nursing homes) experienced significant increases in self-determination, autonomous functioning and life choices

Table 5. Quantitatively assessed outcomes mapped onto the international classification of functioning, disability and health.

Component	Domain	Measures used	Studies reporting use
Body functions	Mental functions	Aberrant Behaviour Checklist	[41,43]
		Challenging Behaviour Interview	[48]
		Learning Disability Casemix Scale	[42]
		Adaptive Behaviour Scale Part I (ABS)	[39,41,43]
		Adaptive Behaviour Assessment Scale (ABAS)	[48]
		Inventory for Client and Agency Planning (ICAP)	[56]
		National Core Indicators Consumer Survey (NCI-ACS)	[57]
		Functional Assessment Measure	[58]
	Temperament and Personality	Mood, Interest and Pleasure Questionnaire	[48]
		Wimbledon Self-Report Scale (WSRS)	[58]
Activities and participation	General Tasks and Demands	Adaptive Behaviour Scale Part I (ABS)	[39,41,43]
		Adaptive Behaviour Assessment Scale (ABAS)	[48]
		Inventory for Client and Agency Planning (ICAP)	[56]
	Self-care	Selected items from the Health Survey for England 1993 and the Tameside and Glossop Health Needs Survey	[41]
		Weight and Medications	[48]
		Functional Independence Measure	[58]
	Domestic life	Index of Participation in Domestic life (IPDL)	[43]
	Interpersonal Interactions and Relationships	The Index of Participation in Daily Living	[39]
		Index of Community Involvement	[39–42]
		Loneliness Questionnaire	[56]
		Index of Community Integration (ICI)	[43]
		Hourly Observations of Interactions	[48]
		Personal Outcomes Measure (my community, my relationships)	[44]
		Quality of Life Survey	[54]
	Major life areas	Lifestyle Satisfaction Scale - Job Satisfaction Subscale	[59]
		Quality of Life Questionnaire (QOL-Q)	[56]
		Life Experiences Checklist	[48]
		25-item Personal Outcome Measure	[45]
		Well-being Measure	[51]
		Personal Outcomes Measure (my goals)	[44]
	Human rights	Self Determination Scale	[53]
		Arc's Self Determination Scale: Adult Version	[59,60]
		Autonomous Functioning Checklist: Self-Report Version	[59,60]
		Life Choices Survey	[59,60]
		The Choice Scale	[41]
		National Core Indicators Adult Consumer Survey (NCI-ACS)	[47,57]
		Personal Outcomes Measure (my human security, my choices)	[44]
		Quality of Life Survey	[54]
Environmental factors	Natural environment and human-made changes to environment	Architectural Features Scale	[41]
		Residential Services Setting Questionnaire	[41]
	Support and relationships	People We Support Questionnaire	[39]
		Social Capital Questionnaire	[39]
		Social Network Map	[41]
		Service and support section of The Survey of Family Members of People with Disability Who Are Receiving Services from Community Living British Columbia	[55]
		The Risks Scale	[41]
		Quality of Life Survey	[54]
	Services, systems and policies	Group Home Management Interview	[41]
		Residential Services Working Practices Scale	[41]
		Safety Questionnaire (developed by authors)	[56]
Body structures		Support needs (13 items developed by authors)	[50,51]
		Observed Secondary Health Conditions	[39]

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