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Critique of deinstitutionalisation in postsocialist Central and Eastern Europe

MLADENOV, Teodor
PETRI, Gabor
2019

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In this paper, we explore critically deinstitutionalisation reform, focusing specifically on the postsocialist region of Central and Eastern Europe (CEE). We argue that deinstitutionalisation in postsocialist CEE has generated re-institutionalising outcomes, including renovation of existing institutions and/or creation of new, smaller settings that have nevertheless reproduced key features of institutional life. To explain these trends, we first consider the historical background of the reform, highlighting the legacy of state socialism and the effects of postsocialist neoliberalisation. We then discuss the impact of ‘external’ drivers of deinstitutionalisation in CEE, particularly the European Union and its funding, as well as human rights discourses incorporated in the UN Convention on the Rights of Persons with Disabilities. The analysis is supported by looking at the current situation in Hungary and Bulgaria through recent reports by local civil society organisations. In conclusion, we propose some definitional tactics for redirecting existing resources towards genuine community-based services.

Feeling controlled or being in control? Apps for self-management among older people with neurological disability

WINBERG, C
KYLBERG, M
PETTERSSON, C
HARNETT, T
HEDVALL, P-O
MATTSSON, T
LEXELL, E Månsson
2019

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Purpose: 

The aim of this paper was to describe how people living with a neurological disability such as multiple sclerosis, Parkinson’s disease and stroke reason regarding using apps to facilitate self-management in everyday life.

 

Material and methods: 

A qualitative research approach with a focus group methodology was used. The sample comprised 16 participants, 11 men and 5 women, with an average age of 64 years (ranging from 51–80 years). Six participants were diagnosed with multiple sclerosis, six with Parkinson’s disease and four with stroke. Data were analyzed using thematic analysis, which is a method for identifying, analyzing and reporting patterns.

 

Results:

 The results formed two themes. The first theme “using apps to have control of my health” comprises two subthemes; “monitor and take responsibility for a healthy lifestyle” and “compensate to facilitate everyday life”. The second theme “using the app as a tool and means for communication” also comprised two subthemes; “dare to trust the app” and “feeling safe when sharing information with health care professionals”.

 

Conclusions:

 The use of apps put increased responsibility on the person and had the possibility to make them more involved in their own care. The use of an app can facilitate a healthy lifestyle and help to monitor disease-specific symptoms. In order to be able to use apps for communication with the health care sector legislation and safety issues need to be considered.

Gaps in access and school attainments among people with and without disabilities: a case from Nepal

EIDE, Arne H
LAMICHHANE, Kamal
Neupane, Shailes
November 2019

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Aim: Many children with disabilities in low- and middle-income countries do not attend school and one-third are out of school. In order to ensure that education is for all including children with disabilities, research is needed on barriers to schooling to identify targets for intervention. The study will examine the determinants of school achievement among persons with and without disabilities as well as among each type of impairment.

 

Methods: The study will utilize data from a recent national, representative household survey on living conditions among persons with and without disabilities. The individual level data used in this article comprise 2123 persons with and 2000 persons without disabilities.

 

Results: The results show that an alarmingly high proportion of persons in Nepal have not accessed formal education, with access being significantly lower among persons with disabilities. While the results may be influenced by the assumed relationship between disability and poverty, results from analyzing the cross-sectional data cannot be conclusive on the influence of disability vs. poverty in determining differences in access and school attainments. Increased environmental barriers, higher age, rural location, and increased levels of disability were found to be associated with lower educational achievement. Pronounced differences in access to education were found between impairment types, with individuals with physical impairments achieving the highest level and individuals with multiple impairments, hearing and mental impairments achieving lowest.

 

Conclusions: It is necessary both to strengthen the entire educational sector and at the same time allocate resources that will ensure that all children are on board and that particular efforts are implemented to cater for those who are easily side-lined.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Children with hearing impairment in Malawi, a cohort study

MULWAFU, Wakisa
et al
October 2019

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The aim of this research was to assess the outcome of children with ear and hearing disorders 3 years after initial diagnosis, in terms of referral uptake, treatment received and satisfaction with this treatment. It also aimed to assess the social participation of the affected children, specifically, their ability to make friends and communicate needs, and their enrolment at school

752 children had been diagnosed in 2013 as having a hearing impairment and 307 (40.8%) children were traced for follow-up in 2016. 

 

Bulletin of the World Health Organization, Volume 97, Number 10, October 2019, 645-728

http://dx.doi.org/10.2471/BLT.18.226241

Aid out of reach: A review of the access to humanitarian aid for women and men, girls and boys with disabilities affected by Cyclone Idai, Mozambique

BAART, Judith
WESTER, Mirian
2019

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The objective of this study is to generate empirical evidence on the barriers to accessing aid for women and men, girls and boys with disabilities in a post-Cyclone Idai context. By doing so, it also seeks to contribute to policy development for an inclusive humanitarian response in Mozambique

The research followed a qualitative design, using interviews and focus group discussions followed by inductive analysis to reveal dominant themes and stories. Data was collected in 30 in-depth interviews with women and men, girls and boys with disabilities and/or caregivers in communities (Beira), as well as in resettlement sites (Dondo).

Including parents in inclusive practice: Supporting students with disabilities in higher education

DUMA, Princess T.
SHAWA, Lester B.
October 2019

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Background: While a number of research studies have endeavoured to understand students with disabilities’ experience in higher education and have recommended ways to effectively support student success, the role of parental support has been neglected. Many studies have been hampered by a limited understanding of students with disabilities and have, in particular, underestimated students’ ‘access to economic, social and cultural forms of capital’ that caring parents provide.

 

Objectives: This article seeks to explore students with disabilities’ experiences of parental support in the South African higher education context. The research question guiding this article is: What forms of economic, social and cultural capital do parents and extended families provide to students with disabilities to enable them to succeed in higher education?

 

Method: In-depth semi-structured individual and focus group interviews were conducted with 17 students with disabilities at two universities of technology. The interview transcripts were thematically analysed with a view to understanding Pierre Bourdieu’s forms of capital that parents provided.

 

Results: The study found that while parents are not always able to provide material support, they offered rich and varied forms of social and cultural capital that enabled students with disabilities’ academic success.

 

Conclusion: Given that parental support plays an important role in the success of students with disabilities, and this role changes as these students become more independent, this study recommends the need for universities to also pay more attention to involving parents in the education of the former. It is hoped that putting in place appropriate forms of parental involvement can create a conducive environment for universities to provide inclusive education holistically.

 

 

African Journal of Disability, Vol 8, 2019

A university’s response to people with disabilities in Worcester, Western Cape

MÜLLER, Jana V.
NED, Lieketseng
BOSHOFF, Hananja
October 2019

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Background: The call for institutions of higher education to foster interaction with communities and ensure training is responsive to the needs of communities is well documented. In 2011, Stellenbosch University collaborated with the Worcester community to identify the needs of people with disabilities within the community. How the university was engaging with these identified needs through student training still needed to be determined.

 

Objectives: This study describes the engagement process of reciprocity and responsivity in aligning needs identified by persons with disability to four undergraduate allied health student training programmes in Worcester, Western Cape.

 

Method: A single case study using the participatory action research appraisal methods explored how undergraduate student service learning was responding to 21 needs previously identified in 2011 alongside persons with disability allowing for comprehensive feedback and a collaborative and coordinated response.

 

Results: Students’ service learning activities addressed 14 of the 21 needs. Further collaborative dialogue resulted in re-grouping the needs into six themes accompanied by a planned collaborative response by both community and student learning to address all 21 needs previously identified.

 

Conclusion: Undergraduate students’ service learning in communities has the potential to meet community identified needs especially when participatory action research strategies are implemented. Reciprocity exists when university and community co-engage to construct, reflect and adjust responsive service learning. This has the potential to create a collaborative environment and process in which trust, accountability, inclusion and communication is possible between the university and the community.

 

 

African Journal of Disability, Vol 8, 2019

The role of rehabilitation care workers in South African healthcare: A Q-methodological study

GAMIET, Shamila
ROWE, Michael
October 2019

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Background: The South African Department of Health identified the need to train a new cadre of community health worker (CHW) in the field of rehabilitation as part of their 2030 Health Plan that aims to improve primary healthcare (PHC) and community-based rehabilitation (CBR). Community health workers can be effectively utilised in CBR if their role is understood and their potential is not limited by professional protectionism and scepticism. A clear understanding of the scope of practice of a new cadre will minimise resistance by health professionals.

 

Objectives: The aim of this study was to explore rehabilitation health professionals’ perception of the role of the new cadre, called rehabilitation care workers (RCWs), in South African healthcare.

 

Methods: Q-methodology was used to gather and interpret the data. A convenient sample of 16 health professionals participated in the study. Participants ranked statements about the role of the RCWs from strongly agree to strongly disagree. Data were entered into PQMethod software program for statistical and factor analysis.

 

Results: Two factors emerged. Participants loading onto Factors 1 and 2 were of the opinion that RCWs’ role would be to strengthen PHC and CBR and to promote participation of people with disabilities (PWD) in intermediate care and community.

 

Conclusion: Rehabilitation health professionals’ positive perception of the new cadre is encouraging so that it could ensure their effective utilisation in CBR. Rehabilitation care workers were perceived as capable of enhancing the lives of PWD by ensuring inclusive development.

 

 

African Journal of Disability, Vol 8, 2019

Medication management for people with disabilities

SINGLECARE
September 2019

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This guide provides tips for people with disabilities and their caregivers to properly handle prescriptions and manage medications. Practical advice is given on:

  • How to read medication labels
  • Managing medications at home
  • Medication strategies for people with visual impairments
  • Medication management for people with a physical disability and/or mobility limitations
  • Medication management for people with intellectual disabilities
  • Tips for effective medication management as the caregiver of a person with a disability

Disability Inclusion Helpdesk Report : What works in mental health services and community interventions to support people with mental health conditions and psychosocial disabilities: a rapid evidence review

MILLS, China
AHLENBÄCK, Veronica
HAEGEMAN, Emma
September 2019

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Summaries on the findings from the following queries:

What works to develop quality services and community interventions to support people with mental health conditions and psychosocial disabilities and wellbeing for all, across the lifecycle?

What are examples of effective interventions in this area?

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

Experiences of primary caregivers of children with cerebral palsy across the trajectory of diagnoses in Ghana

KYEREMATENG, Joana D.A
EDUSEI, Anthony
DOGBE, Joslin A.
OPUKU, Maxwell P.
NKETSIA, William
HAMMOND, Chrales
AFRIYIE, Sally A.
September 2019

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Background: Cerebral palsy (CP) is a non-progressive disorder of posture or movement caused by a lesion to the developing brain that results in functional limitations. The diagnosis of CP can vary from one child to another, causing family stress because of vague and unknown outcomes of the disorder. Although there are negative attitudes in Ghanaian societies towards primary caregivers and children with disabilities, fewer attempts have been made to understand their experiences.

 

Objectives: The main aim of this study was to explore the experiences of primary caregivers across the trajectory of the diagnosis (before, during and after) of CP in the setting of a tertiary hospital.

 

Method: Using Social Capital Theory as framework, 40 primary caregivers of children with CP, who were receiving treatment at a major referral hospital in Ghana, were interviewed about their experiences before, during and after diagnosis.

 

Results: The results that emerged from the thematic analysis were discussed as follows: experiences before diagnosis, experiences during the diagnosis and experiences after the diagnosis. Particularly, participants discussed their inability to access essential services such as education for their children with CP.

 

Conclusion: In light of systemic challenges faced by participants and their children with CP, the need for health policymakers to prioritise the public education about CP, promoting the well-being of caregivers and other implications of the study have been discussed.

 

 

African Journal of Disability, Vol 8, 2019

Quality of Life of Persons with Disabilities in Southern Nations, Nationalities, and Peoples’ Region, Ethiopia

BAART, Judith
SCHIPPERS, Alice
META, Mamush
2019

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Purpose: There is very little demographic or prevalence data  regarding persons with disabilities in Ethiopia, let alone data on more in-depth factors such as access to services or quality of life. This study aimed to find out about the current quality of life of persons with disabilities in Southern Nations, Nationalities, and Peoples’ Region (SNNPR), Ethiopia.

 

Method: The WHO CBR Indicator Survey was used to measure quality of life, and the Washington Group Short Set was included to allow disaggregation of the data by different types of functional limitations. Interviews were conducted with 966 persons with disabilities in 10 towns in SNNPR. The majority of data collectors were persons with disabilities themselves.

 

Results: People with disabilities who were surveyed generally regarded their health as good (65.9%). Very few had significant levels of education (16.5% were completing higher education). Only 6.7% were working for wages and 45.2% were reportedly working on their own account. Hardly any of them (2.9%) stated that their money was sufficient for their needs. Only a small group (38%) felt valued in their community. Just over half of the respondents (56.6%) were members of a Disabled Persons’ Organisation (DPO) or any other self-representing group.

 

Conclusion: Persons with disabilities scored relatively or extremely low in all areas of life measured with the CBR Indicator Survey (health, education, livelihood, social and empowerment). The survey will be repeated after a few years in the same communities to measure changes over time, and persons without disabilities will be included in order to draw comparisons.

 

Implications: Public and private organisations in SNNPR need to become more accessible and inclusive of persons with disabilities so as to improve their quality of life.

The concept of welfare technology in Swedish municipal eldercare

FRENNERT, Susanne
BAUDIN, Katarina
September 2019

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Purpose: An ageing population presents a challenge for municipal eldercare in Sweden due to difficulties recruiting staff and there being a strained economy. A strategy involving welfare technology is presented as one such solution. An important group to carry out this strategy involves those who work with welfare technology in municipal eldercare. In this paper we describe their perception of welfare technology, and the challenges and opportunities they perceive in utilizing it.

 

Methods: A self-administered online questionnaire was distributed to all Swedish municipalities and answered by 393 respondents. Analyses show that the respondents were representative of the different professions who work with welfare technology within municipal eldercare.

 

Results: Welfare technology was perceived as being more reliable and safer than humans with regards to supervisions and reminders. The respondents acknowledged factors that slowed down the implementation of welfare technology in municipal eldercare organizations, such as resistance to change, lack of finances, lack of supporting evidence, lack of infrastructure, high staff turnover, difficulties with procurement and uncertainties about responsibility and laws.

 

Conclusions: We found that the people who work with and make decisions about welfare technology in municipal eldercare organizations were generally very positive about the deployment and use of such technology, but there appear to be problems within municipal eldercare organizations to realize this vision. The lack of structured implementation processes and coherent evaluation models indicates inequality of the access to welfare technology and, as a result, even though Swedish eldercare is publicly funded, the availability of welfare technologies and their usage differ between municipalities.

What interventions are effective to support home-based carers?

HUNT, Xanthe
August 2019

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Question & problem

Many people with disabilities require the assistance of other people in order to go about their daily lives. In high-income countries, home-based carers are professional or para-professional workers who provide assistance to people with disabilities, in their homes. They are often well-trained, and remunerated for their services. However, individuals with disabilities in many low- and middle-income countries (LMIC) predominantly live with their family, and receive home-based care from family members. There are some stresses associated with giving care to others, and these include burnout, compassion fatigue, and an array of emotional and social consequences related to the caring role. The carers, too, need care. This evidence brief summarises what we know about how to support home-based carers, taking into consideration that these people, in LMIC, are often untrained, unpaid family members of the person for whom they are caring.

Gender, sexuality and relationships for young Australian women with intellectual disability

O’SHEA, A
FRAWLEY, P
2019

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Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.

Equal reproduction rights? The right to found a family in United Nations’ disability policy since the 1970s

VAN TRIGT, Paul
2019

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With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.

This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.

The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Growing up with a disability following paralytic poliomyelitis: experiences from persons with late effects of polio

SJODAHL HAMMARLUND, Catharina
LEXELL, Jan
BROGARDH, Christina
August 2019

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Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.

 

Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.

 

Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.

 

Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.

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