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Informal health care by family members of persons with spinal cord injury in Switzerland

Applicant Gemperli Armin
Number 160158
Funding scheme Project funding (Div. I-III)
Research institution Schweizer Paraplegiker-Forschung AG
Institution of higher education Swiss Paraplegic Research - SPF
Main discipline Communication sciences
Start/End 01.11.2015 - 31.05.2019
Approved amount 217'478.00
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All Disciplines (8)

Discipline
Communication sciences
Rehabilitation
Methods of Epidemiology and Preventive Medicine
Medical Statistics
Economics
Health
Public Health and Health Services
Health Education

Keywords (7)

grounded theory; social participation; spinal cord injury; mixed methods research; employment; informal care; community survey

Lay Summary (German)

Lead
Für pflegebedürftige Personen sind ihre Familienmitglieder die unmittelbarsten, vertrauenswürdigsten und oft günstigsten Erbringer von Pflegeleistungen. In der Schweiz erbringen schätzungsweise mehr als hunderttausend Familienmitglieder Pflegeleistungen im Wert von mehreren Milliarden Franken jährlich und entlasten so die Öffentlichkeit. Dies zu Ungunsten der eigenen Entwicklung in Beruf, Familie und Freizeit.
Lay summary
Inhalt und Ziele des Forschungsprojekts

Die Last auf pflegenden Famillienmitgliedern wiegt besonders schwer, wenn für stark abhängige Personen gesorgt werden muss, etwa für querschnittgelähmte Personen. Eine Querschnittlähmung tritt oft unverhofft ein und geht einher mit hoher Abhängigkeit, was die Familenmitglieder herausfordert. Viele Familienmitglieder von querschnittgelähmten Personen nehmen keine andere berufliche Rolle ein als die des Pflegenden des Familienmitgliedes.
Das Forschungsprojekt untersucht die Bedeutung der Pflege eines Famillienmitglieds auf die Lebensumstände des Pflegenden am Beispiel von Personen mit Querschnittlähmung. Mittels statistischer Untersuchungen, sowie Einzelbefragungen, wird ermittelt, wie hoch die erbrachte Pflegeleistung ist, wie diese die berufliche, familiäre und finanzielle Situation des Pflegenden beeinträchtigt und welche Möglichkeiten sich anbieten um die Situation zu Gunsten der Pflegenden zu verbessern.

Wissenschaftlicher und gesellschaftlicher Kontext des Forschungsprojekts

Die Arbeit wird Informationen zur Situation von pflegenden Familienmitgliedern, am Beispiel der Pflege von Querschnittgelähmten, liefern. Sie wird Aufzeigen, welche Faktoren das Gleichgewicht, von Verpflichtungen gegenüber dem Familienmitglied und eigenen Bedürfnissen, begünstigen und welche diesem schaden. Die Studie wird Lösungen aufzeigen, wie die Situation von pflegenden Familienangehörigen verbessert werden kann, basierend auf individuellen Änderungen sowie Massnahmen auf politischer Ebene, welche von den Entscheidungsträgern umgesetzt werden können.
Direct link to Lay Summary Last update: 05.04.2015

Responsible applicant and co-applicants

Employees

Name Institute

Publications

Publication
What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers
Huang Jianan, Pacheco Barzallo Diana, Rubinelli Sara, Münzel Nadja, Brach Mirjam, Gemperli Armin (2019), What influences the use of professional home care for individuals with spinal cord injury? A cross-sectional study on family caregivers, in Spinal Cord, 1-6.

Collaboration

Group / person Country
Types of collaboration
Lucerne Institute of Primary Care Medicine and Community Care Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
- Exchange of personnel
University Medical Center Groningen Netherlands (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication
Department of Health Sciences and Health Policy, University of Lucerne Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Publication

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Health Economics, Management & Policy Conference 2018. Athens, Greece Talk given at a conference Access to Professional Support and Working Decisions 25.06.2018 Athens, Greece Gemperli Armin; Huang Jianan; Rubinelli Sara; Brach Mirjam;
EFPC 2017: The Citizen Voice in Primary Care; a social commitment to “health for all” Talk given at a conference Combination of Informal Care and Professional Home Care 24.09.2016 Porto, Portugal Huang Jianan;
International Spinal Cord Society Annual Scientific Meeting; Vienna, Austria Poster Informal Care by Family Members for Persons with SCI in Switzerland 14.09.2016 Wien, Austria Gemperli Armin; Huang Jianan; Rubinelli Sara; Brach Mirjam;
EFPC 2016: Crosscutting Informal Care and Professional Primary Care Talk given at a conference Informal Care by Family Members of Persons with Spinal Cord Injury in Switzerland – Study Design and Challenges in Study 04.09.2016 Riga, Lithuania Huang Jianan;


Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Rollivision Talk 23.06.2018 Nottwil, Switzerland Gemperli Armin; Huang Jianan; Rubinelli Sara; Brach Mirjam;


Communication with the public

Communication Title Media Place Year
Media relations: print media, online media Pflegende Angehörige - unverzichtbare Unterstützung Paracontact Italian-speaking Switzerland German-speaking Switzerland Western Switzerland 2018
Media relations: print media, online media Pflegende Angehörige - Helden ohne Lobby Paraplegie German-speaking Switzerland Italian-speaking Switzerland Western Switzerland 2017

Associated projects

Number Title Start Funding scheme
153256 The social production of wellbeing in disability: a longitudinal study of persons with spinal cord injury and their caregivers 01.02.2015 Project funding (Div. I-III)

Abstract

The proposed project uses a mixed methods approach to assess and evaluate informal care for persons with spinal cord injury in Switzerland from a caregivers' perspective.Two out of ten persons over the age of 65 are limited in daily activities and their demand for support is high. Family members, being the least expensive, most trusted and most manifest source for care, carry the highest share of care investment estimated of worth 9.5 billion CHF a year. Without a family caregiver, the majority of these costs would be covered by the public. In Switzerland, around 170,000 persons care for a family member and forfeit opportunities for their own personal care, family time and leisure. Moreover, family carers experience reduced social participation and employment opportunities. One quarter of employees have experienced caregiving for relatives, thus impacting their work hours, career choices, salaries or job satisfaction.The caregiver's burden is most pronounced when caring for a highly dependent person. With this respect, spinal cord injury is a model to study informal care in a high capacity setting. Persons with spinal cord injury are often highly dependent, chronically ill, multimorbid and vulnerable individuals. The majority of family caregivers in persons with spinal cord injury assume no roles other than caregiving. The frequency and extent of impact on the caregiver remains to be clarified along with potential strategies to empower the caregiver.This study has overall objective to assess and evaluate the impact of caring on daily activities of family members of people with spinal cord injury, and their perceived needs and preferences. The specific aims are to 1) to describe daily activities, and perceived needs and preferences in family members under the impact of caring; 2) evaluate the associations of these outcomes with characteristics of the caregiver and the person receiving care in order to identify barriers and facilitators of informal care; and 3) identify strategies to empower the family caregivers at the level of support, information services and self-management resources. It does so by employing a cross-sectional survey on family caregivers of individuals with spinal cord injury. Recruitment, anonymization, data entry, and data management will be performed via the Swiss Spinal Cord Injury Cohort Study (SwiSCI) platform. SwiSCI maintains a comprehensive address list of individuals with spinal cord injury in Switzerland. It also houses data from previous cross-sectional surveys and registry studies on individuals with spinal cord injury, which can be linked to the new database on family caregivers. The findings of the survey will lead to subsequent investigations in a qualitative study. For this, caregivers will be selected based on their survey answers and invited for an interview. The interview will be structured around solutions to empower the caregiver. A grounded theory approach will be applied to identify targets for policy interventions.From the perspective of the family caregiver, there are limited studies regarding their career prospects, needs, and preferences. It has never been investigated in family caregivers of persons with spinal cord injury in Switzerland. The proposed study fills a gap by providing estimates on the frequency and extent of the situation and suggesting targets for empowerment of family caregivers. We employ quantitative research methods to assess the magnitude of informal care in Switzerland and rigorous qualitative methods to explore the meaning and understanding of constructs. The study will be empirically based on an extensive survey of persons with spinal cord injury, in Switzerland, living in the community. The study is in line with current research efforts conducted by the study applicants to empower individuals with spinal cord injury, conducted under the SwiSCI research platform. The project will profit from expertise in epidemiological, biostatistical, and survey methods from the main applicant and from expertise in qualitative methods from the co-applicant. Three experts in medical care, economics and spinal cord injury rehabilitation act as study advisors.
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