Living with a disability: a qualitative study of associations between social relations, social participation and quality of life

Jespersen, Louise Norman; Michelsen, Susan Ishøy; Tjørnhøj‐Thomsen, Tine; Svensson, Marie; Due, Pernille

doi:10.1080/09638288.2018.1424949

Cited by 37 publications

(26 citation statements)

References 44 publications

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“…In adolescence, social relations become important. For proper social development, it is necessary to make friends of different ages and genders, participate in social activities, and join friend groups (Jespersen et al, 2019 ). Problems such as difficulties in making friends, shyness in relationships with the opposite sex, and the inability to express emotions might be experienced intensely in adolescence (Nesi et al, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

Determining the Religious Coping Styles of Adolescents in Turkey During COVID-19

2021

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We sought to evaluate the religious coping styles of adolescents during the coronavirus disease 2019 (COVID-19) pandemic and its restrictions. The study was conducted online during the 2020 academic year among students in three randomly selected high schools in a city center located in Eastern Turkey. The students studying in the chosen high schools who agreed to participate were included in the study ( n = 514). We found that most adolescents were anxious, had been affected in terms of health and life satisfaction, and felt sad due to isolation. Almost all subjects attached importance to their religious beliefs. The adolescents’ mean Religious Coping Scale score was 2.23 ± 0.50, their mean Positive Religious Coping subscale score was 2.91 ± 0.73, and their mean Negative Religious Coping subscale score was 1.54 ± 0.52. Specifically, male adolescents of ages 15–17 whose incomes were less than their expenditures and who lived in a broken family had the highest level of negative religious coping. In light of these findings, adolescents can be supported by teaching them to develop positive religious coping styles during the COVID-19 pandemic.

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Section: Introductionmentioning

confidence: 99%

Determining the Religious Coping Styles of Adolescents in Turkey During COVID-19

2021

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“…To have support, but also help from family and friends, is considered the main core for gaining quality of life ( 20 ). We found that only one in eight people in our study had a partner (12.7%).…”

Section: Discussionmentioning

confidence: 99%

“…The difference in findings can perhaps be explained by their smaller sample size, slightly different outcomes, and analyses of data. The link between the quality of life and social relations (family, friends, and others), affects an individual's life, both positively and negatively depending on the characteristic of the relationship ( 20 ). Our findings also reinforce the crucial need for good communication abilities, particularly important for social functioning in young adults with CP ( 6 , 12 ).…”

Section: Discussionmentioning

confidence: 99%

Living Conditions and Social Outcomes in Adults With Cerebral Palsy

Pettersson

Rodby‐Bousquet

2021

Front. Neurol.

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Objectives: To analyse the living conditions and social outcomes (housing, engagement in employment or higher education, access to personal assistance and having a partner) in adults with cerebral palsy (CP) relative to their age, sex, communication ability, and motor skills.Methods: Cross-sectional registry-based study of 1,888 adults (1,030 males/858 females) with CP in the Swedish CP follow-up programme, median age 25 years (range 16–78 y). Type of housing, occupation, access to personal assistance and having a partner were analysed relative to their age, sex, and the classification systems for Gross Motor Function (GMFCS) and Communication Function (CFCS). Binary logistic regression models were used to calculate odds ratios (OR) for independent living, competitive employment, and having a partner.Results: Most of the 25- to 29-year olds (55.6%) lived independently, increasing to 72.4% in 40- to 49-year olds, while the majority (91.3%) of those under 20 years lived with their parents. Independent living was almost equal in adults at GMFCS levels I (40.2%) and V (38.6%). This parity was explained by access to personal assistance, which increased with higher GMFCS and CFCS levels. Personal assistance of >160 hours/week was associated with a high probability of independent living (OR 57). In the age span 20–64 years, 17.5% had competitive employment and 45.2% attended activity centres for people with intellectual disabilities. In the younger age group up to 24 years old, 36.9% went to mainstream/higher education and 20.5% went to special schools. In total, 13.4% had a partner and 7.8% lived together. Slightly more women than men had a partner, and most individuals were classified at CFCS level I.Conclusion: Only one in eight adults with CP has a partner, and one in six has competitive employment. Access to personal assistance is the single most important factor for independent living. It is vital to support adults with CP throughout their lifespan to achieve the best possible outcomes in all aspects of life.

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“…15 External observers estimating the quality of life of persons with disabilities tend to vastly underestimate relative to estimations reported by those with disability themselves, who tend to endorse good or excellent quality of life. [16][17][18][19] These tendencies might stem from misguided preconceptions of lower life or hedonic value. In acute settings, parallel preconceptions might result in premature withdrawal of care or withholding of life-saving treatments for patients with disabilities, often stemming from covert or overt beliefs that disabled lives are not worth living and therefore not worth saving.…”

Section: The Heavy Weight Of Biasmentioning

confidence: 99%

Disabling stroke in persons already with a disability

et al. 2020

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Stroke is the second leading cause of death worldwide and a leading cause of adult disability worldwide. More than a third of individuals presenting with strokes are estimated to have a preexisting disability. Despite unprecedented advances in stroke research and clinical practice over the past decade, approaches to acute stroke care for persons with preexisting disability have received scant attention. Current standards of research and clinical practice are influenced by an underexplored range of biases that may hinder acute stroke care for persons with disability. These trends may exacerbate unequal health outcomes by rendering novel stroke therapies inaccessible to many persons with disabilities. Here, we explore the underpinnings and implications of biases involving persons with disability in stroke research and practice. Recent insights from bioethics, disability rights, and health law are explained and critically evaluated in the context of prevailing research and clinical practices. Allowing disability to drive decisions to withhold acute stroke interventions may perpetuate disparate health outcomes and undermine ethically resilient stroke care. Advocacy for inclusion of persons with disability in future stroke trials can improve equity in stroke care delivery.

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Living with a disability: a qualitative study of associations between social relations, social participation and quality of life

Cited by 37 publications

References 44 publications

Determining the Religious Coping Styles of Adolescents in Turkey During COVID-19

Determining the Religious Coping Styles of Adolescents in Turkey During COVID-19

Living Conditions and Social Outcomes in Adults With Cerebral Palsy

Disabling stroke in persons already with a disability

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