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“Rehabilitation: Family Role within the UK in comparison to Turkey”

Periodic Reporting for period 1 - RE-FRUIT (“Rehabilitation: Family Role within the UK in comparison to Turkey”)

Reporting period: 2016-08-01 to 2017-08-31

* This project explores family role in in-patient rehabilitation in the UK, as compared to Turkey.

* This focus is important, because rehabilitation is a key turning point in the lives of many disabled people. It promotes independence, and active life after acquired injury. Families often play a vital role in rehabilitation. Yet sociology of rehabilitation and the literature on the role of the family in it are underdeveloped. This is a vital gap, since families can be both enabling and disabling, by acting as providers of greatest support, but also as agents, who reproduce disabling ideologies. The assumptions of the health care systems in Turkey and the UK differ, when it comes to family involvement. The former assumes that families will stay in the hospital and take on loads of responsibilities. Whereas in the latter the National Health Services assume that hospitals will attend to all patients’ needs, whether or not family members are available. This diversity provides a fruitful ground to compare disabled people’s experiences of family involvement.

* The project has 4 objectives:
(i) To explore the activities that families undertake throughout rehabilitation.
(ii) To explore how disabled people and their families experience this process.
(iii) To investigate the experience of people who lack family support.
(iv) To compare this new evidence with data previously gathered on rehabilitation in Turkey.
"1- In line with the first work package (WP), ethics approvals were attained (The REC ethics and HRA approvals, the research passport) and literature was reviewed. This was the first milestone.

2- In line with the second WP, data were collected at a UK rehabilitation hospital. The fieldwork comprised interviews, focus group discussions and participant observation. Interviews were carried out in the amputee and neurological rehabilitation services with 10 patients (6 from the amputee ward, 4 from neurological services), and 8 family members (3 from the amputee ward, 5 from neurological services). Patients’ age ranged from 40 to 81. Most patients were in their 70s. Three focus group discussions involved doctors (n=4), nurses (n=5), and physio- and occupational therapists (n=6); participant observation was undertaken with 5 families during visiting hours (2 from the amputee ward, 3 from neurological services); finally 5 interviews were done with academics, who are experts in the field. All interviewees had mental capacity; they could consent and talk. Our first contact was initiated by a staff member. Then, we were invited to meet with the patients/families. The fieldwork finished at the end of February 2017 as proposed. This was the second milestone.

3- In line with the third WP, the data were analysed in relation to the rerviewed literature. This analysis prepared us for dissemination activities (conference presentations and manuscript preparations). This was the third milestone.

4- Dissemination activities continued throughout the year. After finishing the fieldwork we also started writing up manuscripts. We attended two major international disability conferences: At the 14th Nordic Network on Disability Research Conference in Örebro, Sweden, we focused on the role of the family in in-patient rehabilitation in the UK. At the European Society for Disability Research Conference in Lausanne, Switzerland, we focused on a comparison of family role in Turkey and the UK. Furthermore we organised a workshop for the hospital staff (approximately 20 staff members). Another dissemination activity involved a seminar at the University of East Anglia, that focused on the Turkish experience of rehabilitation, but also highlighted some differences between Turkey and the UK. The participants were scientists from different health-related disciplines, and students. We attended the ""Disability and Rehabilitation Exchange Event"" at the UEA, where we presented a summary of our research project. We have already submitted one manuscript on “rights-based rehabilitation” to a special issue of Social Inclusion. The paper is written in collaboration with two UEA colleagues. We submitted a second manuscript to Disability & Rehabilitation. This manuscript compares family involvement in in-patient rehabilitation in the UK and Turkey. We started writing a third manuscript that concentrates on the UK experience. The key researcher in this project plans to write a further paper later in the year, which will highlight her reflexive account of doing research in two settings with diverse understandings of ethics and culture in health care delivery. An online essay was written for the most important webportal to bring almost 100.000 disabled people and their friends together in Turkey. Currently this essay is going through a process of editing and correcting. The two researchers have also been working on the promised bid for funding to do research on rehabilitation and disability identity formation of ex-combatants. For this purpose a two-day sand-pit was organised that brought together about 30 UEA scholars. Currently the research team is in the process of writing up the application for a Global Challenges Research Fund.

5- The researcher attended the following training activities:
Introduction to Grounded Theory, UEA.
Introduction to Focus Groups, Oxford University.
Introduction to Systematic Reviews, UEA.
Writing Qualitative Data, University of Southampton.
How to Write Research Grant Applications, UEA.
Narrative Analysis in Action, UEA.
* Progress beyond the state of the art:
Family role in rehabilitation has often been an area of interest for rehabilitation sciences. Yet, this literature usually assumes family presence as positive and describes ways of integrating families to the process. Thus, a critical, sociological focus on family role is lacking. This project opens up a new line of inquiry within disability studies, which has hitherto neglected sociology of rehabilitation. Through first-person accounts, the project makes it possible for disabled people have their voices heard and shape rehabilitation practices.

We argue that family presence enriches social interaction during rehabilitation. Patients often experience this as positive (both in the UK and in Turkey). Yet, intense family involvement can also feel overwhelming, where meaning of disability is associated with a loss of privacy and individuality (as experienced often in Turkey). In-patient rehabilitation is different from other regular treatment processes. It often takes longer and aims at a transition to a new life with a new bodily status. The benefits and drawbacks of family role need to be understood in this context.

*Potential impacts:
The results of this study have already reached out to disability scholars across Europe. The researcher participated in two of the most important academic conferences in the field (ALTER-European Society for Disability Research and NNDR-Nordic Network on Disability Research). The research results will also reach out to policy makers. The researcher has been invited to present her findings in the board meeting of the regional NHS trust. The research results have been shared by hospital staff as well. All of these dissemination activities will give voice to disabled patients and facilitate their inclusion into processes that shape in-patient rehabilitation.