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The micro-politics of caring: tinkering with person-centered rehabilitation

GIBSON, BARBARA
TERRY, Gareth
SETCHELL, Jenny
BRIGHT, Felicity A S
CUMMINS, Christine
KAYES, Nicola M
April 2019

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Purpose: In this paper, we critically investigate the implementation of person-centered care with the purpose of advancing philosophical debates regarding the overarching aims and delivery of rehabilitation. While general agreement exists regarding person centered care’s core principles, how practitioners reconcile the implementation of these principles with competing practice demands remains an open question.

 

Materials and methods: For the paper, we drew on post-qualitative methods to engage in a process of “diffractive” analysis wherein we analyzed the micro-doings of person-centered care in everyday rehabilitation work. Working from our team members’ diverse experiences, traditions, and epistemological commitments, we engaged with data from nine “care events” generated in previous research to interrogate the multiple forces that co-produce care practices.

 

Results: We map our analyses under three categories: scripts mediate practice, securing compliance through “benevolent manipulations”, and care(ful) tinkering. In the latter, we explore the notion of tinkering as a useful concept for approaching person centered care. Uncertainty, humility, and doubt in one’s expertise are inherent to tinkering, which involves a continual questioning of what to do, what is best, and what is person centered care within each moment of care. The paper concludes with a discussion of the implications for rehabilitation and person-centered care.

Mobile technology and inclusion of persons with disabilities

THOMPSON, Stephen
May 2018

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This K4D Emerging Issues report highlights research and emerging evidence that show how mobile-enabled services can help increase inclusion of persons with disabilities. The aim is to provide UK Government’s Department for International Development (DFID) policy-makers with the information required to inform policies that are more resilient to the future. This report provides a synthesis of the current evidence on how mobile technology and mobile-enabled services can help increase inclusion of persons with disabilities. It was originally planned that this report would also explore how mobile enabled technology might exacerbate existing inequalities. Some evidence was found to focus on the barriers to ICT that marginalised groups encounter, however, no evidence was found to focus on how mobile technology might exacerbate inequalities. As such, the report focuses on the positive impact that mobile technology has been shown to have in increasing the inclusion of persons with disabilities. 

This report focuses specifically on evidence produced by academic research from low and middle income countries

The grace of motherhood: disabled women contending with societal denial of intimacy, pregnancy, and motherhood in Ethiopia

TEFERA, Balaynesh
et al
September 2017

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Ethiopian disabled women’s experiences of intimacy, pregnancy and motherhood are reported. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants. Interview data revealed that mothers experienced significant challenges with regard to accessibility of health centers, physician’s lack of knowledge about and problematic attitudes toward them and more general societal prejudices towards individuals with disability. The 13 participants were employed women with physical or visual disabilities, and the interviewees were from the Addis Ababa metropolitan area, Ethiopia.

 

Disability & Society, 32:10, 1510-1533

DOI: 10.1080/09687599.2017.1361385

Linking rehabilitation and social work using the personalised social support process: Steps to establish a social work unit and future directions for social work in Cambodian PRCs using the model developed at Kampong Cham

PEARSON, Anita
SONG, Sit
2017

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This publication intends to draw lessons learned from the set-up of a Social Work (SW) unit in the PRC in Kampong Cham province of Cambodia using the Personalized Social Support (PSS) process and provide an example of person-centered approach in rehabilitation service delivery, to be considered by PWDF and other rehabilitation I/NGOs and promoted within other PRCs in Cambodia. The specific objectives of this publication are: 

  • To identify recruitment strategies and clinical activities conducted by the SW unit 
  • To consider the capacity development of SW staff along the development of a SW unit
  • To outline how SW and PSS are linked to the Cambodian Ministry of Social Affairs Veterans and Youth Rehabilitation Guidelines on Physical Rehabilitation in Cambodia4 (also known as the Standard Working Procedures -SWP) with reference to its application.
  • To consider how SW interventions and PSS contributes to service users’ social participation and rights.

Capturing best practices through a ‘’lessons learnt’’ process can be utilized to advocate for the adoption and replication of such a model within wider rehabilitation services in Cambodia.

This publication was developed by a mixed methods approach on the basis of various sources and tools, including:

  • Desk review including collection of documents and tools used by the SW unit, and field visit reports
  • Workshops/meetings with the PRC Manager, PRC Unit heads and Focal Clients (FC) to gain reflections on the process and map a reverse pathway of change
  • Key Informant interviews: Interviews with members of the project team and local authorities.
  • Case study frames were designed and used as well as some questions from SCOPEO5 Quality of life linked to social and personal relationships during the interview. 
  • Interviews with 15 beneficiaries (SW Clients at the PRC) to assess the impact of SW input over a 13 month period from June 2015 to July 2016

Hear my voice: old age and disability are not a curse. A community-based participatory study gathering the lived experiences of persons with disabilities and older people in Tanzania

MRISHO, Mwifadhi
FAKIH, Bakar
GREENWOOD, Margo
STEFF, Marion
2016

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Community based participatory research (CBPR) was used to provide evidence on the specific nature and experiences of persons with disabilities and older people from their own perspectives in Tanzania, through the lens of social, political, economic and cultural inclusion. The aim was to strengthen efforts to provide services for and improve the lives of people living in the rural and urban settings of Nachingwea and Kibaha Urban Municipal Council. Twenty-nine peer researchers (nine persons with disabilities, 10 older people and 10 Tanzanian Non-Governmental Organisation (NGO) members working in these communities) were involved in the study. A total of 106 stories were collected. Eight priority areas emerged and were chosen by peer researchers for further discussion in groups: access to education and quality learning; access to health services; issues fed back from NGOs; poverty relating to income and dependence; attitudes towards witchcraft and albinism; relationship difficulties and marriage breakdowns; sexual violence and gender issues; poor treatment from family
 

Survey of Reproduction Needs and Services: Situation of Persons with Spinal Cord Injuries

JINMING, Z
YUGE, Z
GENLIN, L
YUCHEN, G
SUWEN, C
2014

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Purpose: This article explores the reproductive wants and needs of persons with spinal cord injuries (SCI), along with factors that influence these needs and the services available to them.

 

Method: The study sample comprised persons with SCI from China Rehabilitation Research Centre who matched the research criteria and consented to participate. Data collection took place through questionnaires and in-depth interviews. After the objectives, contents and methods of the survey were explained, 63 respondents answered the questionnaire, and 17 of them (15 men and 2 women) agreed to participate in the in-depth interviews. All the respondents were above 18 years of age, either unmarried or married, and childless.

 

Results: It was found that 85.7% of the respondents wished to have children. The more severe the SCI, the less was the desire for children. Those with higher levels of education were less inclined to have children. While financial situation had little impact on the wish for children, the impact of traditional concepts was significant. The reproductive experiences of other SCI clients had a significant influence on respondents’ desire to have children. More than 50% of the respondents were ignorant that they could have babies after SCI. 96.8% of them believed that a child played an important role in marital stability. Though 54% of the respondents wished to have their sexual and fertility problems addressed in medical and rehabilitation institutions, 93.7% said they had not received any such professional services during the previous year.

 

Conclusions: Although most persons with spinal cord injuries are very keen to have children, their wants and needs are not recognised and little attention is paid to specialized service provision to address their needs. This study suggests that steps such as improving awareness, disseminating knowledge and setting up institutions to provide professional services are necessary to address reproductive needs and to protect the reproductive rights of persons with SCI.

Violence and abuse towards persons with disabilities : international workshop report

DEEPAK, Sunil
et al
2013

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This second part of a community-based rehabilitation workshop report focuses on issues of violence, abuse and sexual abuse towards persons with disabilities. This report presents the information exchanged through formal presentations, personal testimonies, film clips, sharing of experiences and discussions around the workshop theme. The report highlights the main findings and presents five key recommendations
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

Empowering practice

WEETMAN, Robert
October 2010

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"(T)his book was originally written to accompany a training course for people involved in support work. It's directed at people with the imagination and creativity to recognise that 'how we've always done things around here' isn't a good guide to good practice...The book looks in detail about what can go wrong...about how support can be disempowering...The book goes on to discuss alternative ways of working. It takes a look at what overall aims may be appropriate in support work; how different service design might help; what capacity thinking is; and it presents some ideas on how to work in an empowering way"
Version 2b

Community-based rehabilitation : CBR Guidelines|Social component

WORLD HEALTH ORGANIZATION (WHO)
et al
2010

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This component of the CBR Guidelines focuses on social component. It describes "the role of the CBR is to work with all relevant stakeholders to ensure the full participation of people with disabilities in the social life of their families and communities. CBR programmes can provide support and assistance to people with disabilities to enable them to access social opportunities, and can challenge stigma and discrimination to bring about positive social change." The guideline outlines key concepts, and then presents the core concepts, examples and areas of suggested activities in each of the following five elements: Personal Assistance; Relationships, marriage and family; Culture and arts; Recreation, leisure and sport; Justice. This guideline is useful for anyone interested in social component of CBR

What really matters : a guide to person-centered excellence|Application for services for people with mental illness

THE COUNCIL ON QUALITY AND LEADERSHIP (CQL)
2010

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"This guide promotes quality improvement in behavioral health services and supports. These best practices and the resulting quality improvement initiatives can be applied across the range of supports and services for people with mental illness...This manual has eight main sections and each section contains a key factor with its success indicators. We use the term ‘factor’ to refer to the main area: for example, Person-centered Planning. Likewise, each factor has a number of ‘success indicators’ that describe critical aspects of the factor. For each success indicator there are three parts: a statement of the indicator; a brief explanation of the meaning behind this indicator; a description of how organizations apply this indicator in practice"

Reflecting on social roles : identifying opportunities to support personal freedom and social integration

O’BRIEN, John
June 2006

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The purpose of this resource is to "to encourage thoughtful discussion of the meaning of ‘least restrictive and most integrated’ as criteria for service adequacy. With this tool, multiple dimensions of a person's life can be examined, including: home and neighbourhood, family and friends, work, learning, spiritual and religious, community association, sports and fitness, and creative expression"
Version 1

Violence and abuse towards persons with disabilities

AMICI DI RAOUL FOLLEREAU (AIFO)

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This website presents the workshop reports and presentations from the second part of an international workshop on "Going beyond the taboos in community-based rehabilitation (CBR)." The workshop focused on violence and abuse towards persons with disabilities and role of CBR in preventing them and supporting the victims. Links are provided to the workshop report and presentations in pdf format
"Going beyond the taboo areas in CBR" workshop, part 2
Agra, India
30 November 2012

CBR, social relationships, sexuality and reproductive rights

AMICI DI RAOUL FOLLEREAU (AIFO)

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This website presents the workshop reports and presentations of the first part of an international workshop titled: "Going beyond the taboos in community-based rehabilitation (CBR)." The workshop focused on social relationships, sexuality and reproductive rights. Links are provided to the workshop report and presentations in pdf format “"Going beyond the taboo areas in CBR" workshop, part 1
Agra, India
29 November 2012

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