DeJong et al. 1984;
USA
Downs & Black = 12
Case Series
N=75

Population: 75 individuals; 71% <35 years old, 63 male, 51 had SCI ≥3 years,
Treatment: No treatment. The purpose was to determine factors that predict the ability of persons with SCI to live independently following discharge from rehabilitation.
Outcome Measures: Overall independent living (IL), socio-demographics, disability (Barthel Index and 4 other factors), environmental aspects (attendant care, housing, transportation, work disincentives, services received), and interface variables bridging functional limitations and environmental barriers (unmet equipment needs).

1. Significant predictors of living arrangement outcome were marital status, age at onset, sex (female was associated with greater independence), transportation barriers, medical supervision, and services received.
2. Seven variables explained 63% of the variance in IL outcome; the greatest predictors are marital status; transportation barriers; education level; degree of medical supervision required; economic disincentives; services received; and severity of disability.

Boschen 1988;
Canada
Downs & Black = 14
Observational
N=82

Population: 82 persons;65 male; mean age = 28 (age range = 18-35; 46 with tetraplegia
Treatment: No treatment. The purpose of the study was to examine current accommodations, housing options, and preferences.
Outcome Measures: Questionnaire to identify factors influencing choices of accommodation; preferences of types of housing; and number of housing options perceived to have been available.

1. Seventy percent live in a private house or apartment, 19% live in an apartment project with shared attendant care services, 5% live in an institution, and 6% live in other accommodations; 69% live with one or more people and 31% live alone.
2. Most important accommodation deciding factors in order are: location, wheelchair accessibility, family ties, finances, vacancy, and attendant care availability.
3. Preferred accommodation was own house or apartment.

Boschen 1996;
Canada
Downs & Black = 12
Observational
N=82

Population: 82 individuals with traumatic SCI (age range = 18 – 35), 66 male; with traumatic SCI ≥1 year post- injury, 46 subjects with tetraplegia
Treatment: No treatment. The purpose of this study was to evaluate the correlates of life satisfaction, residential satisfaction, and locus of control among individuals with SCI.
Outcome Measures: self-administered questionnaire (Living with Spinal Cord Injury): residential choices; perceived activities choice scale, activities choice congruence scale; and Locus of Control Scale

1. 57 lived in private houses or apartments (often with parents), 8 in apartment projects with shared attendant services, and 4 in institutions.
2. >50% had to move to new residence due to injury.
3. Half of the respondents reported their current accommodations were determined by them having a physical disability.
4. The greatest single predictor of residential satisfaction is perceived current residential choice.
5. Residential satisfaction was correlated to life satisfaction; one’s living accommodations are central to one’s life situation.

Boschen 1990;
Canada
Downs & Black = 12
Observational
N=82

Population: 82 individuals with traumatic SCI (aged 18-35), mostly male with tetraplegia; age-matched data from the Institute of Behavioural Research Canadian Quality of Life data-bank (1981).
Treatment: No treatment. The purpose of the study was to compare life satisfaction, housing satisfaction, and locus of control between individuals with SCI and non-disabled individuals.
Outcome Measures: Living with a Spinal Cord Injury questionnaire composed of 29 items from the Canadian Quality of Life Survey and 60 items from Locus of Control Scale

1. Life satisfaction and locus of control were significantly lower for individuals with SCI than for the normative sample
2. There was no significant difference in overall residential satisfaction; however those with SCI rated their housing problems as more serious, most often related to environmental barriers
3. Individuals with SCI who lived in private residences had significantly greater residential satisfaction then those in apartment projects; however life satisfaction was not impacted.

Cesar et al. 2002
USA
Downs & Black =10
Observational
N=69

Population: 69 individuals; 55 male and 14 female; ≤5 years post injury; 31 paraplegia and 38 with tetraplegia; living in the community
Treatment: No treatment. Purpose was to assess the living situation of recently injured individuals, to identify any safety concerns, and to address potential solutions to eliminate the concerns.
Outcome Measures: safety in the home environment

1. Most perceived themselves relatively safe in their environment (safe from crime in home, safe going out in neighborhood, feel safer when go out with friends than alone)
2. 45 felt prepared for a fire in their home; 24 expressed a need for assistance with fire safety concerns
3. No statistical difference in overall perceptions of safety between those with paraplegia and those with tetraplegia.

Fuhrer et al. 1990;
USA
Downs & Black = 10
Observational
N=71

Population: 46 independent living centers (ILCs) that have relationships with one or more medical rehabilitation programs (MRPs); 25 MRPs that have relationships with at least one of the 46 ILCs recruited
Treatment: No treatment. Purpose was to identify types and scope of relationships that exist between ILCs and MRPs and to identify barriers and facilities of these relationships.
Outcome: kinds of contacts that exist between the respondent’s center and MRPs, and perceived barriers to a workable relationship with MRPs.

1. Most ILCs and MRPs reported making `referrals to or providing information about` the other; and most ILCs reported `peer counselling of MRP patients` and `training in daily living skills`.
2. 92% of MRPs reported use of ILC services to address housing, 84% for attendant care, 79% for transportation, and 67% for personal/ psychosocial problems, during discharge planning or outpatient follow-up.
3. ILCs with MRP relationships served significantly more people monthly than those without MRP relationship.
4. The use of ILC services was most frequent for individuals with SCI; >70% of individuals with SCI required ILC peer counselling services, >60% required skills training and >55% required discharge planning services.

DeJong & Hughes 1982;
USA
Downs & Black = 10
Observational
N=33

Population: Retrospective population of 111 persons with SCI who were discharged from rehabilitation; Current population of 33 members of the Massachusetts Interagency Council on Independent Living (ICIL) (19 under 35 years old; 20 male; 18 not disabled)
Treatment: No treatment. The purpose of this study was to develop a long-term outcome measure of independent living by identifying outcomes from previous research and ranking and weighing their relevance to current independent living
Outcome Measures: Retrospective extraction of data relating to living environment and productivity; New survey for ranking and weighing living arrangements and productivity.

1. A greater weight is allocated to productivity (57%) than living arrangement (43%) when determining independent living.
2.  ‘living with spouse/significant other and/or children’, ‘living alone’, and ‘living with friends, unrelated persons, and/or siblings’ were ranked and weighted as most positive living arrangements
3. ‘Living with parents and with spouse and/or children’, ‘living with relatives such as grandparents, uncles, aunts, or adult children’, and ‘living with parents or with parents and siblings’, were ranked and weighted as less desirable living arrangements
4. ‘living in an institution’ was ranked and weighted as least positive

Anzai et al. 2006
Canada
Downs & Black = 9
Observational
N=52

Population: 52 individuals; mean age 45.3 ; 40 were male, 33 subjects had a C4 lesion; 31 were categorized as AIS – A
Treatment: no treatment. Purpose of the study was to identify and describe the factors that were associated with whether individuals with high lesion SCI were discharged from rehabilitation to an extended care unit (ECU) versus other settings, including private homes, group homes, and acute care.
Outcome measures: location to where subjects were discharged; individual characteristics, health-related characteristics; personal context, hospitalization factors; and health resources.

1. 21 subjects were discharged to an ECU (12 as a permanent destination, 9 as interim placement). Of the 9, 3 subjects eventually returned to the community.
2. 25 subjects were discharged to a home; 2 to a group home; 1 to a shared care apartment; and 3 to acute care.
3. Univariate analyses revealed 7 factors significantly associated with discharge to an ECU versus community: age, employment at time of injury, pre-existing medical conditions, social support, pre-injury living situation; and insurance or private funding for equipment.
4. Multivariate analysis revealed 4 factors significantly related to location of discharge: insurance; private funding for equipment; age; pre injury living situation;

Forrest & Gombas 1995
USA
Downs & Black = 9
Observational
N = 105

Population: 105 acute SCI subjects, 80 male, mean age 42 yrs (range 17-83), 63 with paraplegia and 42 tetraplegia
Treatment: No treatment; purpose of study was to determine the frequency with which lack of accessible housing delays the discharge of an SCI subject, and the related costs of the delay
Outcome Measures: Frequency and length of delay of discharge due to lack of accessible housing; cost of the delay

1. Of the 105 subjects included in the study, 11 stayed on the rehabilitation unit between 6-210 days longer than was medically necessary because of lack of accessible housing; the average delay in discharge was 60 days
2. The average cost of a 60-day stay at the institution was $29,280, compared to $1,620 at a transitional living unit, which translates to an average saving of $27,660 per patient.

Bergmark et al. 2008
USA
Qualitative
N = 22

Population: 22 traumatic SCI patients, 16 male, mean age at injury 29.2 yrs (range 17-49), mean time post injury 14.4 yrs (range 2-37), injury level C1-C7
Treatment: No treatment; purpose of study was to describe the factors that influence tetraplegic subjects’ residence decisions and the general pattern of  residence among tetraplegic individuals
Outcome Measures: 15 open-ended questions, administered in an interview, either in person or on the phone

1. Subjects lived in 5 kinds of places post-injury: own or friends’ homes, parents’ home, group home/board and care, skilled nursing facilities (SNF), and rehabilitation facilities;
2. Subjects moved on average 3.3 times after discharge
3. Factors influencing residence moves include information, money, accessibility, insurance, intimate relationships, personal assistance and caregiving
4. Subjects living in parents’ home or institutions thought that it was their “only option”, and is seen as a “stepping stone” towards moving into their own homes, which is their goal.