grounded theory; social participation; spinal cord injury; mixed methods research; employment; informal care; community survey
Huang Jianan, Münzel Nadja, Scheel-Sailer Anke, Gemperli Armin (2021), Who are the beneficiaries and what are the reasons for non-utilization of care respite and support services? A cross-sectional study on family caregivers, in BMC Health Services Research
, 21(1), 637-637.
Zanini Claudia, Amann Julia, Brach Mirjam, Gemperli Armin, Rubinelli Sara (2021), The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury, in Spinal Cord
, 59(5), 493-503.
Huang Jianan, Pacheco Barzallo Diana, Rubinelli Sara, Münzel Nadja, Brach Mirjam, Gemperli Armin (2021), Professional home care and the objective care burden for family caregivers of persons with spinal cord injury: Cross sectional survey, in International Journal of Nursing Studies Advances
, 3, 100014-100014.
Gemperli A, Rubinelli S, Zanini C, Huang J, Brach M, Barzallo D (2020), Living situation of family caregivers of persons with spinal cord injury, in Journal of Rehabilitation Medicine
, 52(11), jrm00124-jrm00124.
Diviani Nicola, Zanini Claudia, Jaks Rebecca, Brach Mirjam, Gemperli Armin, Rubinelli Sara (2020), Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland, in Patient Education and Counseling
, 103(8), 1531-1537.
Zanini Claudia, Fiordelli Maddalena, Amann Julia, Brach Mirjam, Gemperli Armin, Rubinelli Sara (2020), Coping strategies of family caregivers in spinal cord injury: a qualitative study, in Disability and Rehabilitation
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
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.