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The social production of wellbeing in disability: a longitudinal study of persons with spinal cord injury and their caregivers

English title The social production of wellbeing in disability: a longitudinal study of persons with spinal cord injury and their caregivers
Applicant Brinkhof Martin
Number 153256
Funding scheme Project funding (Div. I-III)
Research institution Schweizer Paraplegiker-Forschung
Institution of higher education Swiss Paraplegic Research - SPF
Main discipline Sociology
Start/End 01.02.2015 - 31.05.2018
Approved amount 194'919.00
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All Disciplines (2)

Discipline
Sociology
Rehabilitation

Keywords (6)

Social relationships; Wellbeing; Productive activities; Disability; Spinal Cord Injury; Caregivers

Lay Summary (German)

Lead
Soziale Einflüsse auf das Wohlbefinden bei Behinderung: eine Längsschnittstudie bei Personen mit Rückenmarksverletzung und deren PartnernThe social production of wellbeing in disability: a longitudinal observational study of persons with spinal cord injury and their caregivers in SwitzerlandKurztitel: pro-WELLLaufzeit: 36 MonateProjektnummer: SNF 100017_153256/1Principal Investigator (PI) und Co-PI: Dr. Martin Brinkhof und Dr. Christine Fekete, Schweizer Paraplegiker Forschung-AG, Nottwil
Lay summary

Hintergrund und Ziele des Forschungsprojektes

In dieser Längsschnittstudie werden Zusammenhänge zwischen bezahlter/unbezahlter Arbeit, engen zwischenmenschlichen Beziehungen

und dem Wohlbefinden von Personen mit Rückenmarksverletzung und deren pflegenden Partnern untersucht. Die Studie basiert auf der Annahme,

dass das Erbringen von Leistung und die Zugehörigkeit zu einem Kreis nahestehender Personen wichtige psychische Bedürfnisse darstellen, deren

Erfüllung sich positiv auf das Wohlbefinden auswirkt. Dies ist jedoch gemäss unserer Hypothese nur dann der Fall, wenn ein ausreichendes Mass an

Autonomie, ein fairer Tausch zwischen Geben und Nehmen und ein zuverlässiger sozialer Rückhalt gegeben sind. Fehlen diese Bedingungen, geht dies

mit einer Verschlechterung des Wohlbefindens einher. Diese Zusammenhänge werden bei beiden oben genannten Gruppen untersucht. Darüber hinaus

wird geprüft, ob die unterstellten Auswirkungen bei sozial benachteiligten Personen besonders stark sind.

 

Forschungsmethodik

Die Daten werden mittels Fragebogen und Telefoninterview zu drei Messzeitpunkten während 12 Monaten erhoben. Dazu sollen 200 Personen mit

Rückenmarksverletzung und deren pflegende Partner befragt werden (n=400). Diese Studie ist die erste Teilstudie im Rahmen der Swiss Spinal Cord Injury

Cohort Study (SwiSCI), der europaweit grössten Studie mit rückenmarksverletzten Personen. Die Daten werden sowohl im Quer- als auch im Längsschnitt

anhand von Korrelations- und Regressionsanalysen ausgewertet, zum Zwecke weiterführender Analyse werden  Strukturgleichungsmodelle eingesetzt.

 

Erwarteter Nutzen

Da diese Studie konkrete – und somit potenziell veränderbare – Lebensumstände mit Einfluss auf das Wohlbefinden untersucht, erhoffen wir uns aus den

Ergebnisse auch praktisch hilfreiche Erkenntnisse und Folgerungen für die Betroffenen. 

Direct link to Lay Summary Last update: 26.06.2014

Responsible applicant and co-applicants

Employees

Name Institute

Publications

Publication
The impact of loneliness and relationship quality on life satisfaction: A longitudinal dyadic analysis in persons with physical disabilities and their partners
Tough Hannah Brinkhof Martin, Siegrist Johannes, Fekete Christine (2018), The impact of loneliness and relationship quality on life satisfaction: A longitudinal dyadic analysis in persons with physical disabilities and their partners, in Journal of Psychosomatic Research, 110, 61-67.
Work and family conflicts in employees with spinal cord injury and their caregiving partners
Fekete Christine, Siegrist Johannes, Tough Hannah, Brinkhof Martin (2018), Work and family conflicts in employees with spinal cord injury and their caregiving partners, in Spinal Cord, 56, 63-70.
Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland
Fekete Christine, Tough Hannah, Siegrist Johannes, Brinkhof Martin (2017), Health impact of objective burden, subjective burden and positive aspects of caregiving: an observational study among caregivers in Switzerland, in BMJ Open, 7(12), e017369..
Subjective caregiver burden and caregiver satisfaction: The role of partner relationship quality and reciprocity
Tough Hannah, Brinkhof Martin, Siegrist Johannes, Fekete Christine (2017), Subjective caregiver burden and caregiver satisfaction: The role of partner relationship quality and reciprocity, in Archives of Physical Medicine & Rehabilitation , 98(10), 2042-2051.
Social relationships, mental health and well-being in physical disability: A systematic review
Tough Hannah, Siegrist Johannes, Fekete Christine (2017), Social relationships, mental health and well-being in physical disability: A systematic review, in BMC Public Health , 17, 114.
Vitality and mental health in disability: Associations with social relationships in persons with spinal cord injury and their partners
Tough Hannah, Fekete Christine, Brinkhof Martin, Siegrist Johannes (2017), Vitality and mental health in disability: Associations with social relationships in persons with spinal cord injury and their partners, in Disability and Health Journal , 10, 294-302.
Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL)
Fekete Christine, Fekete C Brinkhof Martin, Tough Hannah, Siegrist Johannes (2017), Longitudinal study of social participation and well-being among persons with spinal cord injury and their partners (pro-WELL), in BMJ Open, 7, e011597.
Fair opportunities, social productivity and well-being in disability: Towards a theoretical foundation
Siegrist Johannes, Fekete Christine (2016), Fair opportunities, social productivity and well-being in disability: Towards a theoretical foundation, in Journal of Rehabilitation Medicine , 48, 494-499.

Collaboration

Group / person Country
Types of collaboration
Seniorprofessorship 'Work Stress Research', Faculty of Medicine, University of Duesseldorf Germany (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
University Medical Centre Utrecht and Rehabilitation Centre De Hoogstraat Netherlands (Europe)
- in-depth/constructive exchanges on approaches, methods or results

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Swiss Public Health Conference Talk given at a conference The impact of close social relationships on subjective well-being in persons with physical disabilities and their caregiving partners: A longitudinal analysis. 22.11.2017 Basel, Switzerland Brinkhof Martin; Tough Hannah;
International Spinal Cord Society - Annual Scientific Meeting Poster Objective burden, subjective burden or lack of positive aspects of caregiving: What matters most for caregivers‘ health? 24.10.2017 Dublin, Ireland Brinkhof Martin; Fekete Christine;


Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Klinisches Forschungsmeeting, Swiss Paraplegic Center Talk 23.01.2018 Nottwil, Switzerland, Switzerland Tough Hannah; Brinkhof Martin; Fekete Christine;
Workshop of the SwiSCI Interest Group 'Psychosocial Perspective' Workshop 01.12.2017 Basel, Switzerland Tough Hannah; Fekete Christine;


Self-organised

Title Date Place
Workshop for study participants and other interested stakeholders 08.09.2017 Nottwil, Switzerland

Communication with the public

Communication Title Media Place Year
Print (books, brochures, leaflets) Special edition of the SwiSCI newsletter: pro-WELL results Italian-speaking Switzerland Western Switzerland German-speaking Switzerland Rhaeto-Romanic Switzerland 2018
New media (web, blogs, podcasts, news feeds etc.) Continuous communication of all pro-WELL results SwiSCI homepage Western Switzerland International Rhaeto-Romanic Switzerland Italian-speaking Switzerland German-speaking Switzerland 2015

Awards

Title Year
Best PhD Abstract Award of the Swiss School of Public Health (SSPH+): Tough H, Brinkhof MWG, Siegrist J, Fekete C: The impact of close social relationships on subjective well-being in persons with physical disabilities and their caregiving partners: A longitudinal analysis. Oral presentation at Swiss Public Health Conference, Basel, 2017 2017
Outstanding Postdoctoral Fellow Poster Award of the International Spinal Cord Society (ISCoS): Fekete C, Tough H, Siegrist J, Brinkhof MWG. Objective burden, subjective burden or lack of positive aspects of caregiving: What matters most for caregivers‘ health? Poster presentation at the ISCoS Conference, Dublin, 2017 2017

Associated projects

Number Title Start Funding scheme
160158 Informal health care by family members of persons with spinal cord injury in Switzerland 01.11.2015 Project funding (Div. I-III)
166603 Differences in mortality patterns and life expectancy between spinal cord injured persons and the general population in Switzerland since 1990 01.04.2017 Project funding (special)

Abstract

This longitudinal study analyses associations of socially productive activities (paid work, voluntary work, caring, housework) and of close social relationships (partner, other confident) with wellbeing in persons with spinal cord injury (SCI) and in their caregiving partners. The analysis is based on the theoretical assumption that productive activities and close social relationships are important for wellbeing because, under favourable conditions, they enable people to experience personal autonomy, reciprocal exchange and social support. Conversely, under adverse conditions, wellbeing may be reduced due to a lack of experiences of autonomy, reciprocity and support. We analyse these associations both, cross-sectionally and longitudinally using structural equation modelling. Moreover, we test whether these associations are particularly strong in the group of persons exposed to stressful socioeconomic circumstances, e.g., financial hardship (moderation hypothesis). Data are collected by computer-assisted telephone interviews and questionnaires at three measurement waves over one year in a sample of at least 200 persons with SCI and 200 caregiving partners. This is the first nested project within the Swiss Spinal Cord Cohort Study (SwiSCI), the largest investigation of persons with SCI in Europe and one of the first epidemiological studies on the lived experience of persons with disabilities. As the proposed project addresses tangible - and potentially modifiable - conditions of people’s proximal social environment with impact on wellbeing, its results are expected to guide practical measures of reducing the burden of disability.
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