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Introduction Persons experiencing disabilities often face constraints in establishing and maintaining intimate partnerships due to attitudinal barriers and restricted opportunities to meet potential partners [1]. Not only are persons living with disabilities confronted with negative societal attitudes and discrimination Int. J. Environ. Res. Public Health 2020, 17, 7002; doi:10.3390/ijerph17197002 www.mdpi.com/journal/ijerph Int. J. Environ. Res. Public Health 2020, 17, 7002 2 of 11 that limit their opportunities to enter and form lasting partnerships, but they may also hold internalized stigmatizing beliefs, such as feelings of inferiority and beliefs of not deserving intimacy, sexuality, and love [2–5]. Persons living with disabilities are less likely to be married or have an intimate partnership than persons without a disabling condition [1,6–10], and if they marry, they are at increased risk of separation and divorce. People with an early onset of a disabling condition, cognitive impairment, mobility limitations, unemployment, and lower levels of education seem particularly disadvantaged in finding a partner. Besides restricted opportunities in forming partnerships, disability may also affect people’s living situation, since the choice where and with whom to live is often not self-determined but limited by socioeconomic and health-related resources or the lack of stability in a relationship [8]. Furthermore, restrictions in people’s freedom of choice can lead to both being unable to live independently in a one-person household or being excluded from living with others. For example, not finding roommates that wish to share an apartment or the lack of a partnership or parenthood may lead to the involuntary outcome of living alone. A recent study from Sweden documented that individuals experiencing disabilities are as twice as likely to live alone and to report longer periods of living alone than people without disabilities. Conversely, difficulties in living alone in an independent household may be related to limited functional capacity, unavailability of informal support, and lack of adapted housing or assistive devices. This may lead to the situation that people have to live with family caregivers or in institutions such as sheltered accommodation. Investigations into the living situation of people with disabling conditions need to take into account broader societal conditions, as customs related to the living situation vary regionally; for example, living alone is generally less common in Asian as compared to European countries. Moreover, the availability of formal and informal care outside the family might be limited in some settings leading to the necessity for persons experiencing disabilities to live with family who can provide informal care.

Materials and Methods - Design The cross-sectional InSCI community survey was implemented in 22 countries from all continents between 01/2017 and 05/2019 to describe aspects of functioning, health, and well-being of persons with SCI. The networks of the International Society of Physical Rehabilitation and Medicine and the International Spinal Cord Society (ISCoS) were used to establish collaboration between countries. National representatives closely involved in SCI research or clinical practice firstly evaluated the feasibility of implementing a survey in their country and then formally joined the InSCI network at the kick-off meeting in February 2015 in Switzerland to initiate collaboration. A standardized questionnaire consisting of 125 items assessing various aspects of living with SCI was used as described in more detail Int. J. Environ. Res. Public Health 2020, 17, 7002 3 of 11 elsewhere. At least 18-year-old, community-dwelling people with traumatic or non-traumatic SCI, who were able to respond in an available questionnaire language version were eligible for participation. People with congenital etiology, neurodegenerative disorders (e.g., multiple sclerosis) or Guillain Barré syndrome were excluded, as people with these health conditions usually follow different rehabilitation paths and disease progressions than those with acquired SCI. National Study Centers were responsible for recruitment, data collection, and the organization of resources to execute the survey. Sampling frames were defined according to local conditions, including convenience or random sampling. Random sampling based on predefined sampling frames was only possible in 8 countries that had access to hospital or patient organization databases. Due to a lack of access to such databases, 14 countries used convenience sampling methods and recruited individuals visiting health care facilities or joining patient organization events. As indicated by a power analysis, countries were requested to recruit a minimum of 200 participants. A total of 10 countries recruited between 200 and 300 participants as detecting potential participants was challenging because SCI is a rare condition and systematic records were missing or relevant databases were not accessible. Recruitment outcomes of the different countries are reported elsewhere in more detail. Countries offered paper–pencil or online questionnaires and telephone or personal interviews as local circumstances permitted. Ethical approval was obtained from Institutional Review Boards or Ethical Committees in all countries and the study was conducted according to the principles of the Helsinki Declaration (EKNZ, 11042 PB_2016-02608). Informed consent was obtained from each participant and participants could withdraw from the study at any time. Further details on recruitment and data collection procedures, response rates, and a profile of the InSCI population are provided elsewhere.

 

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