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Impact of lived experiences of people with disabilities in the built environment in South Africa

McKINNEY, Victor
AMOSUN, Seyi L.
August 2020

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Background: In spite of legislations and policies to ensure an inclusive society in South Africa for the accommodation of people with disabilities, there are reports that they still struggle to move freely within society.

 

Objectives: As part of a larger qualitative exploratory study on the preparation of undergraduate civil engineering students in a local university to contribute to the development of an inclusive society, this article seeks to understand the impact of the lived experiences of people with disabilities in their interaction with the built environment.

 

Method: Four persons with disabilities, considered to be knowledgeable about South African legislations relating to disability, were purposely selected to each share one specific experience whilst interacting with the built environment. The transcribed texts of the interviews were analysed by using the phenomenological–hermeneutic method.

 

Results: The participants exhibited strong desires to participate in society. However, the sense of loss of control and independence as they encountered challenges in the built environment changed the euphoria to disempowerment, rejection, anger and despondency. In spite of their experiences, participants expressed a commitment towards overcoming the challenges encountered in the broader interest of people with disabilities.

 

Conclusion: A deeper understanding of the impact of the experiences of people with disabilities when they participate within the built environment in South Africa revealed a broad spectrum of negative emotions, which may impact the quality of life and well-being of the participants.

 

 

African Journal of Disability, Vol 9, 2020

Association of anxiety and depression with physical and sensory functional difficulties in adults in five population-based surveys in low and middle-income countries

WALLACE, Sarah
MACTAGGART, Islay
MORGON BANKS, Lena
POLACK, Sarah
KUPER, Hannah
June 2020

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The aim of this study was to assess the association between anxiety and depression with physical and sensory functional difficulties, among adults living in five low and middle-income countries (LMICs).

A secondary data analysis was undertaken using population-based disability survey data from five LMICs, including two national surveys (Guatemala, Maldives) and 3 regional/district surveys (Nepal, India, Cameroon). 19,337 participants were sampled in total (range 1,617–7,604 in individual studies). Anxiety, depression, and physical and sensory functional difficulties were assessed using the Washington Group Extended Question Set on Functioning. Age-sex adjusted logistic regression analyses were undertaken to assess the association of anxiety and depression with hearing, visual or mobility functional difficulties.

The findings demonstrated an increased adjusted odds of severe depression and severe anxiety among adults with mobility, hearing and visual functional difficulties in all settings (with ORs ranging from 2.0 to 14.2) except for in relation to hearing loss in India, the Maldives and Cameroon, where no clear association was found. For all settings and types of functional difficulties, there was a stronger association with severe anxiety and depression than with moderate. Both India and Cameroon had higher reported prevalences of physical and sensory functional difficulties compared with Nepal and Guatemala, and weaker associations with anxiety and depression

Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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The aim of this study was to investigate access for Malawian prosthetic and orthotic users with lower limb disabilities to basic human rights such as health and a standard of living adequate for health, education, work, marrying and establishing a family, and voting. A further aim was to investigate differences among subgroups based on gender, level of income, and residential location.

A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2020.1752316

The value of a short practical training course for newly qualified therapists working with children with cerebral palsy in South Africa

BAKUWA, Takondwa C
PILUSA, Sonti
SALOOJEE, Gillian
April 2020

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Background: Cerebral palsy (CP) is the most common and most complex disabling disorder in children. Newly qualified therapists are expected to manage CP despite feeling inexperienced and inadequately prepared. Short postgraduate practical training courses could potentially help bridge this readiness gap. However, the value of these short courses in addressing the knowledge and experience gap is unknown.

 

Objectives: To establish the value of a short practical training course on the self-perceived readiness of newly qualified South African trained therapists to work with children with CP.

 

Method: Secondary analysis of records on therapists’ immediate evaluation of a short practical training course on CP management was completed. The analysis included records from 11 courses collected over a 2-years period (2015–2017). Paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. Qualitative data were analysed inductively to determine themes.

 

Results: The majority of therapists had their expectations met by the course. Therapists’ self-perceived level of knowledge about various aspects of CP after the course changed significantly. Therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. They demonstrated readiness to adopt positive attitudes, perceptions and practice following the course.

 

Conclusion: A short practical postgraduate training course in CP is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. It is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with CP.

 

 

African Journal of Disability, Vol 9, 2020 

Functional outcome of stroke inpatients according to human immunodeficiency virus status: A feasibility study

HARTLEY, Tasneem
BURGER, Marlette
ESTERHUIZEN, Tonya M
INGLIS-JASSIEM, Gakeemah
March 2020

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Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.

 

Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.

 

Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.

 

Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.

 

Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.

 

 

African Journal of Disability, Vol 9, 2020

Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)

CLEMENTE, Mirna
MIGUEL, Marilis Dallarmi
FELIPE, Karina Bettega
SCHWANTES, Ivan Marangon
JUNIOR, Darlan França Ciesielski
SCHWANTES, Athos Marangon
SCHONHOFEN, Christian Burmeister
ALVES, Tabea Epp Kuster
BRAZ, Tiago Volpi
FERNANDES, Luiz Claudio
MIGUEL, Obdulio Gomes
2019

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Purpose: It is well established that physical exercise, in general, decreases anxiety and depression. Para sport or sport for people with disabilities is used as a rehabilitation strategy to improve their quality of life. This study aimed to investigate people with disabilities who practise wheelchair fencing, sedentary people with physical disability and conventional fencers, assessed by Short Form 36 (SF-36), by comparing the groups.

 

Method: Forty-two people from Physical Disability Association of Parana (ADFP) answered SF-36 and were divided into three groups: Conventional Fencers (CF), Wheelchair Fencers (WF), and Sedentary People with Physical Disability (SD).

 

Results: This study was the first to report the Health-Related Quality of Life (HRQOL) of conventional fencers, wheelchair fencers, and sedentary people with physical disability, using SF-36. The data demonstrated high scores in CF and WF, on seven SF-36 scales of the eight-scale profile, including functional and mental health, role physical, bodily pain, general health perception, vitality, social functioning, mental health. Moreover, the sedentary group had lower scores in most of the domains when they were compared to CF.

 

Conclusion: The results might provide supportive evidence that HRQOL of WF has demonstrated a positive effect on people with disability since para sport has been used as a rehabilitation programme.

 

Implication: The implementation of a public campaign is recommended, about sport as a health promoter for disability and rehabilitation. By involving healthcare providers from the area, people with disabilities can be encouraged to participate in para sport.

Barriers and Facilitators to Community Ambulation in Maharashtra, India: Perception of Individuals with Stroke

SHAIKH, Atiya A
ATRE, Janhavi Jagdish
2019

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Purpose: The study aimed to understand the self-perceived environmental barriers/ facilitators to community ambulation among stroke survivors in Maharashtra State, India.

 

Method: The Facilitators and Barriers Survey /Mobility Questionnaire (FABS/M) was used to collect information from a convenience sample of 50 individuals with stroke. Data was analysed using descriptive statistics in Statistical Package for Social Sciences (SPSS) 22.00.

 

Results: Curbs, gravel surfaces, rain, noise, and crowd were marked as barriers by 56%, 58%, 52%, 36% and 50% of the participants, respectively. Ramps, elevators, and flat surfaces were reported as facilitators by 42%, 70% and 82% of the participants, respectively. Participants also mentioned the absence of automatic doors and escalators in community areas (92% and 88%), specialised exercise equipment, handrails and specialised bathroom equipment at home (92%, 50% and 52%), and inaccessibility to public places (50%), as barriers to easy mobility. 

 

Conclusions: To enhance community mobility of individuals with stroke, environmental barriers should be reduced and facilitators should be enhanced. The marked absence of facilitators in the environment should be rectified and appropriate steps should be taken to enhance ambulation. 

 

Limitations of the study are the small sample size. Factors like balance, economic status, physical activity of the stroke individuals and severity of stroke were also not considered.

Factors that relate to sport participation of adolescents with a mobility impairment

MOLL, Aletta M.
BESTER, Garfield
September 2019

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Background: There are multiple factors that make it difficult for learners with a mobility impairment to participate in sport, if not impossible. Unfortunately, it is not known which of these factors can be considered as the most important ones.

 

Objectives: The main objective was to obtain clarity on the factors that differentiate best between learners who participate in sport and those learners who are not participating.

 

Method: In total, 140 boys and girls with different types of mobility impairments participated. Information was obtained on inevitable factors such as age and gender, structure factors such as type of school and hostel dwelling and personal factors such as emotions and relationships with parents and peers.

 

Results: Four factors emerged that explained 22% of the variance in the distinctive characteristics of the group that participates in sport and the non-participating group. Age was the most important variable explaining 9% of the variance followed by trust (an emotional variable), gender and health.

 

Conclusion: Children with a mobility impairment should be encouraged to start participating in sport at an early age. Specific attention should be given to girls who are more reluctant to participate. Health is a factor that can inhibit sports participation; however, it should not be overemphasised. The emphasis should rather be on the development of trust, which will help adolescents with an impairment to take responsible risks in an adaptive sports environment.

 

 

African Journal of Disability, Vol 8, 2019

Access to primary care for persons with spinal cord injuries in the greater Gaborone area, Botswana

PAULUS-MOKGACHANE, Thato M.M.
VISAGIE, Surona J.
MJI, Gubele
September 2019

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Background: People with spinal cord injury (SCI) often have great need for healthcare services, but they report access challenges. Primary care access to people with SCI has not been explored in Botswana.

 

Objective: This study aimed to identify barriers and facilitators that users with spinal cord injuries experience in accessing primary care services in the greater Gaborone area, Botswana.

 

Methods: A quantitative, cross-sectional, observational study was conducted. Data were collected with a structured questionnaire from 57 participants with traumatic and non-traumatic SCI. Descriptive and inferential analysis was performed.

 

Results: The male to female ratio was 2.8:1. The mean age of participants was 40 years (standard deviation 9.59). Road traffic crashes caused 85% of the injuries. Most participants visited primary care facilities between 2 and 10 times in the 6 months before the study. Participants were satisfied with the services (63%) and felt that facilities were clean (95%) and well maintained (73.5%). Preferential treatment, respect, short waiting times and convenient hours facilitated satisfaction with services. Availability was hampered by insufficient provider knowledge on SCI as indicated by 71.9% of participants, and shortage of consumables (80.7%). Structural challenges (42.1% could not enter the facility by themselves and 56.5% could not use the bathroom) and lack of height-adjustable examining couches (66.7%) impeded accessibility. Cost was incurred when participants (64.9%) utilised private health services where public services failed to address their needs.

 

Conclusion: Primary care services were mostly affordable and adequate. Availability, acceptability and accessibility aspects created barriers.

 

 

African Journal of Disability, Vol 8, 2019

A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa

KYAZZE, Michael
WESSON, Janet
NAUDE, Kevin
August 2019

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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.

 

Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.

 

Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.

 

Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.

 

Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.

 

 

African Journal of Disability, Vol 8, 2019

Participation restrictions and vocational rehabilitation needs experienced by persons with a unilateral lower limb amputation in the Western Cape, South Africa

YU, Tak Wing
ENNION, Liezel
2019

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Background: Vocational rehabilitation (VR) aims to rehabilitate a person with an amputation back into actively participating in society. Even though lower limb amputation (LLA) surgery is commonly performed in South Africa (SA), little research has been published on the participation restrictions experienced by and vocational needs of persons with LLA in the Western Cape (WC).

 

Objectives: The aim of this study was to determine and explore the participation restrictions and VR needs of persons with a unilateral LLA in the WC.

 

Method: A mixed-methods approach and a sequential exploratory design were utilised to collect data from 50 persons with an LLA. Participants were conveniently sampled within the Cape Metropole region of the WC, SA. The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) tool was used to collect the quantitative data, and telephonic interviews were conducted for qualitative data collection.

 

Results: A third (28%) of participants in this study were unemployed, and only 14% (n = 7) of the participants owned or used a prosthesis. In addition, 50% of the participants either had a disability grant or were on pension. The participation restrictions identified were mainly related to mobility where 74% (n = 37) of participants had extreme difficulty with mobility in general, 92% (n = 46) struggled with walking distances longer than 1 km and 80% (n = 40) had extreme difficulty in completing household tasks quickly. The main VR needs identified in this study were the inadequate rehabilitation services that target ambulation (standing and walking) to facilitate employment.

 

Conclusion: Persons with a unilateral LLA still experience significant difficulties in mobility 3 months post-amputation, which negatively affects their participation in society and vocational activities.

 

African Journal of Disability, Vol 8, 2019

Associations between health behaviour, secondary health conditions and quality of life in people with spinal cord injury

MASHOLA, Mokgadi K.
MOTHABENG, Diphale J.
2019

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Background: The development of secondary health conditions (SHCs) after spinal cord injury (SCI) is common and can affect an individual’s emotional well-being, and his or her health-related quality of life (QOL). Little is known about relationships between performing health-benefiting behaviours and the presence (or absence) of SHCs and QOL, particularly in South Africa.

 

Objectives: This research study was conducted in order to determine the associations between health behaviour, SHCs and QOL in people with SCI (PWSCI).

 

Method: This cross-sectional study included 36 PWSCI discharged from a private rehabilitation facility in Pretoria, South Africa. The PWSCI completed questionnaires pertaining to lifestyle, independence, presence of SHCs, social support and QOL. Data were analysed using descriptive and inferential statistics such as correlation tests and chi-square test of independence (x2) using the SPSS v25. Moderate, moderately high and high correlations are reported (Pearson r ≥ 0.4). Results were significant if p < 0.05.

 

Results: Participation in health-benefiting behaviour was associated with increased QOL (r = 0.457, p < 0.01) and increased social support from family and friends (r = 0.425, p < 0.01), which was associated with increased QOL (r = 0.671, p < 0.001). Not participating in specific neuromusculoskeletal health behaviours was found to be associated with the overall presence of SHCs (r = -0.426, p < 0.01).

 

Conclusions: Participating in health-benefiting behaviour can reduce the development of SHCs and subsequently increase QOL in PWSCI. Health professionals must focus on minimising the development of SHCs by providing specific education on good health-benefiting behaviour.

 

African Journal of Disability, Vol 8, 2019

‘We only got Coca-Cola’: Disability and the paradox of (dis)empowerment in Southeast Nigeria

NWOKORIE, Okechukwu V.
DEVLIEGER, Patrick J.
2019

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Background: Empowerment is the generic name for support services for persons with disability in Nigeria. In it, the elites of the society play leading roles. Special events such as anniversaries, Christmas seasons, wealthy people’s birthdays, investiture of new titles and campaigns before general elections often provide occasions for empowerment programmes.

 

Objectives: This article explores discourses of empowerment of persons with disability in Southeast Nigeria. We concentrate on the relation between local elites and the disability community and how it impacts our understanding of empowerment. Conceptualising empowerment as worldmaking, and disability as something that is ambiguous, we challenge the assumption that the aim of empowerment of disabled people is to improve their (disabled people’s) quality of life.

 

Method: This article relies on research data (collected between January 2014 and January 2017) comprising 72 interviews and participant observations from 27 persons with disability, and 13 social workers and senior government officials.

 

Results: We conclude that discourses of empowerment of disabled people frame disability as loss and tend to conceal the personal stories and survival operations of disabled people.

 

Conclusion: Empowerment discourses ironically provide the platform for local power elites to ‘ride’ to fame on the backs of disabled to extend their influence in society. In the current neoliberal environment of unequal access to opportunities, disabled people must ‘play along’ as a survival strategy. Our qualitative data provide opportunities to reflect on the tensions between the ‘local and the global’, thus indicating how disability issues intersect with other wider questions.

 

 

African Journal of Disability, Vol 8, 2019

India inclusion summit 2018

March 2019

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India Inclusion Summit is a community driven initiative that aspires to build an Inclusive India by 2030. It is an annual event that began in 2012 to create awareness about disabilities and the need for Inclusion. The event brings together thought leaders and unsung heroes from the field of disability and inclusion to deliberate, discuss and drive change in our society.

 

Videos of some of the presentations are available including:

My Journey and ‘Deaf gain’ing an accessible India:  Vaibhav Kothari (18 mins), signed

You’re not just special. You’re Special Edition:  SwarnaLatha (11 mins)

Don’t let disability come in the way of things you love: Zoyeb Zia (10 mins), signed

The Adventure of Autism and quest to serve each other: Rupert Isaacson (20 mins), signed

Making a billion people read despite their disabilities: Brij Kothari (21 mins), signed

The ability needed to be whoever you want to be: Devika Malik (13 mins), signed

Everyone has something to give: Suchitra Shenoy (11 mins), signed

From being inclusive to doing acts of inclusion: Yetnebersh Niguissie (12 mins), signed

Finding your missing piece: Jerry White (18 mins), signed

Listening to the voice within that opens infinite possibilities: Rajni Bakshi (15 mins), signed

Being a mother is the most satisfying role: Suhasini Maniratnam (21 mins) signed

 

 

Developing country-specific wheelchair service provision strategic plans for Romania and the Philippines

GOWRAN, Rosemary
et al
March 2019

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The process used to support the development of wheelchair service strategic plans in Romania and the Philippines is described. The paper considers the influences, meaning, challenges and developments when producing strategic priorities within two different contexts.

 

Journal of Disability and Rehabilitation: Assistive Technology, Volume 14, 2019 - Issue 6

Development of the Wheelchair Interface Questionnaire and initial face and content validity

RISPIN, Karen
DAVIS, Abigail B.
SCHEAFER, Vicki L
WEE, Joy
2019

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Background: Because resources are limited in low- and middle-income countries (LMIC), the development of outcome measures is of interest. Wheelchair outcome measures are useful to support evidence-based practice in wheelchair provision.

 

Objectives: The Wheelchair Interface Questionnaire (WIQ) is being developed to provide a professional perspective on the quality of the interface between a wheelchair and its user. This article discusses the development of the WIQ and its face and content validity.

 

Method: During field studies in Kenya, we sought to include professional report data on the wheelchair–user interface that could be analysed to inform design changes. None of the existing measures was focused on the interface between users and their wheelchairs. The WIQ was developed to meet this need. To investigate face and content validity, 24 experienced wheelchair professionals participated in a study that included two rounds of an online survey and a focus group in Kenya.

 

Results: Responses were categorised by topic and the WIQ was modified following each iteration. Participants affirmed the usefulness of a brief professional report measure to provide a snapshot of the user–wheelchair interface. Participants emphasised the importance of brevity, wide applicability and provision of specific feedback for wheelchair modification or design changes. The focus group agreed that the final version provided useful data and was applicable to virtually all wheelchair users in LMIC.

 

Conclusion: These preliminary studies indicate initial face and content validity of the WIQ as a method for providing a professional perspective on the interface between a user and his or her wheelchair.

 

African Journal of Disability, Vol 8, 2019

Improvements in health-related quality of life and function in middle-aged women with chronic diseases of lifestyle after participating in a non-pharmacological intervention programme: A pragmatic randomised controlled trial

BARNES, Roline Y
JELSMA, Jennifer
PARKER, Romy
2019

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Background: Musculoskeletal diseases consume a large amount of health and social resources and are a major cause of disability in both low- and high-income countries. In addition, patients frequently present with co-morbid chronic diseases of lifestyle. The area of musculoskeletal disease is restricted by a lack of epidemiological knowledge, particularly in low- and middle-income countries.

 

Objectives: This pragmatic randomised controlled trial assessed the benefits of a 6-week physiotherapy intervention for middle-aged women with musculoskeletal conditions compared to usual care.

 

Method: A weekly 2-h educational programme utilising a workbook, discussion group and exercise class was presented for the intervention group, while the control group received usual care. The primary outcome was health-related quality of life. Parametric and non-parametric data were used to determine the equivalence between the groups.

 

Results: Twenty-two participants were randomised to the intervention and 20 to the control group. The control group demonstrated no within-group improvement in health-related quality of life items, compared to significant improvements in two items in the intervention group. The change in median utility score within the intervention group was twice as large as the change in the control group. With regard to self-efficacy, the intervention group demonstrated significant within-group changes in perceived management of fatigue and discomfort.

 

Conclusion: The positive impact of the intervention on the participants suggests that the programme should continue at the clinic in question, but should be presented at a more convenient time for participants who work, as recruitment to the study was less than anticipated. Primary health care systems in South Africa urgently need to put structures in place for effective management of the functional impact of chronic diseases of lifestyle and musculoskeletal conditions. It is time for physiotherapists and possibly other health care professionals to participate in the development of appropriate community level interventions to address the functioning and quality of life of individuals living with the diseases.

 

African Journal of Disability, Vol 8, 2019

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

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