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Prevalence, identification, and interference of pain in young children with cerebral palsy: a population-based study

TEDROFF, Kristina
GYLLENSVARD, Mirja
LOWING, Kristina
September 2019

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Objective: To explore the presence of pain, how pain was addressed by physicians and parents, and how pain affected everyday life in young children with cerebral palsy (CP).

 

Methods: Children with CP, aged 5–10 years, participated in this cross-sectional study. Data were collected from medical records spanning a period of two years and by a standardized parental interview that included six structured questions and the Pain Interference Index.

 

Results: A total of 118 children, with a mean age of 7.4 years (SD 1.5), participated in the study. The parents of 81% of these children were interviewed. Pain was reported in 52% of the children, and pain was present at all severity levels. The prescription of analgesics was documented in 25% of these children’s medical records. Fifty-nine percent of the children with pain received analgesics from their parents. Pain restricted the children’s everyday lives particularly concerning sleep, school work and being with friends.

 

Conclusions: Half of this group of young children with CP were reported to have pain. Pain restricted the children's everyday lives and seemed to be under-treated. If pain can be addressed early, the children's everyday lives are likely to be improved.

Effects of assistive technology for students with reading and writing disabilities

SVENSSON, Idor
NORDSTRÖM, Thomas
LINDEBLAD, Emma
GUSTAFSON, Stefan
BJÖRN, Marianne
SAND, Christina
ALMGREN/BÄCK, Gunilla
NILSSON, Staffan
2019

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Background: 

Assistive technology has been used to mitigate reading disabilities for almost three decades, and tablets with text-to-speech and speech-to-text apps have been introduced in recent years to scaffold reading and writing. Few scientifically rigorous studies, however, have investigated the benefits of this technology.

 

Purpose: 

The aim was to explore the effects of assistive technology for students with severe reading disabilities.

 

Method: 

This study included 149 participants. The intervention group received 24 sessions of assistive technology training, and the control group received treatment as usual.

 

Results: 

Both the intervention and control groups improved as much in 1 year as the normed population did. However, gains did not differ between the groups directly after the intervention or at 1 year of follow-up.

 

Conclusions: 

The use of assistive technology seems to have transfer effects on reading ability and to be supportive, especially for students with the most severe difficulties. In addition, it increases motivation for overall schoolwork. Our experience also highlights the obstacles involved in measuring the ability to assimilate and communicate text.

Inter- and intra-household perceived relative inequality among disabled and non-disabled people in Liberia

CAREW, Mark T.
COLBOURN, Tim
COLE, Ellie
NGAFUAN, Richard
GROCE, Nora
KETT, Maria
July 2019

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Evidence suggests that people with disabilities are the most marginalised and vulnerable group within any population. However, little is known about the extent of inequality between people with and without disabilities in contexts where the majority of persons experience extreme poverty and hardship. This includes in Liberia, where very little is understood about the lives of disabled people in general. This study uses a multidimensional wellbeing framework to understand perceived relative inequality associated with disability by assessing several facets of wellbeing across and within households containing disabled members (N = 485) or households with no disabled members (N = 538) in Liberian communities (Total individuals surveyed, N = 2020). Statistical comparisons (adjusted for age, sex, education and wealth differences and clustered at the household, village and county level) reveal that disabled Liberians are managing similarly to non-disabled Liberians in terms of income and education, but experience many perceived relative inequalities including in life satisfaction, transport access, political participation and social inclusion.

 

PLoS ONE 14(7)

https://doi.org/10.1371/journal.pone.0217873

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial

HEPPE, Eline C M
WILLEMEN, Agnes M
KEF, Sabina
SCHUENGEL, Carlo
May 2019

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Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.

 

Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.

 

Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.

The effect of a serious game on empathy and prejudice of psychology students towards persons with disabilities

OLIVIER, Linda
STERKENBURG, Paula
Van RENSBURG, Esmé
2019

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Background: Much has been done regarding the promotion of equality in rights in terms of legislation, but persons with disabilities remain marginalised in society. Negative attitudes and prejudice contribute towards numerous challenges for persons with disabilities.

 

Objectives: This study investigated the level of empathy and prejudice of students towards persons with disabilities, and the effect of the use of a serious game to enhance empathy and reduce prejudice.

 

Method: A randomised controlled experiment with pre-test, post-test and follow-up test was used. Availability sample (N = 83) of psychology university students (22% males; 78% females) was divided into an experimental group that played the serious game The World of Empa and two control groups. The first control group received texts on case studies and information on reacting in a sensitive and responsive way, and the second control group received no intervention.

 

Results: Participants have average levels of empathy (score: 32 to 52) and strong prejudice (score: 0.08 to −0.87) towards persons with disabilities. The intervention results in a slight short-term effect for prejudice and sub-scale measurements of empathy. A slight improvement was noted in participants’ ability to transpose themselves imaginatively into the experience of disabled characters.

 

Conclusion: The findings contribute to the understanding of empathy as a dynamic component that can be positively influenced by, for example, a serious game. These results have teaching implications on the facilitation of empathy. The short-term effect on empathy and prejudice towards persons with disabilities may contribute to bridge the inequality experienced by persons with disabilities.

 

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

Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India

GOVINDASAMY, Karthikeyan
DHONDGE, Suresh
DUTTA, Ambarish
MENDIS, Tina
2019

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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.

 

Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes. 

 

Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.

 

Conclusions:  In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.

 

Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.

 

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Stereotypes about adults with learning disabilities: Are professionals a cut above the rest?

JAMAL, Gulgoona
2019

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Purpose: The study examined the differing perceptions of professionals and the public (non-professionals) regarding life success for adults with learning disability (LD).

 

Method: The sample (N = 342) consisted of 175 professionals (P) and 167 non-professionals (NP), with a mean age of 30.02 years and S.D. = 12.42 years. Their perceptions about life success of an individual with learning disability were studied with the help of four vignettes that provided hypothetical information about the age, class, and hobbies of a college student. The four vignettes were identical in describing the student and only differed in terms of gender (M and F), and presence and absence of learning disability (LD and NLD).

 

Results: No significant difference was found between attitudes held by professionals and non-professionals. Both the groups showed significantly greater negative attitudes about perceived life success for adults with learning disability than for those without learning disability. The results have been discussed with the help of social psychological theories in the areas of attitude, bias, and stigmatization.

 

Conclusion and Implications: It is clear that a negative bias exists toward individuals with learning disability in the urban Indian milieu. The fact that not only the public but also professionals were biased against individuals with learning disability regarding their life success implies that negative stereotypes are deeply embedded. This research may provide the impetus to address issues like prevalence of stigma against learning disability in society, its effective attenuation as well as equality and inclusion for individuals with learning disability.

Cross-sectional Survey to Assess Prevalence of Disability and Access to Services in Albay Province, The Philippines

HODGE, Marcus
BOLINAS, Amable
JAUCIAN, Erlynn
BONEO, Rebecca
SCHAPIRA, Allan
VILLANUEVA, Mary Mediatrix V
2017

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Aim:  A cluster randomized cross-sectional survey to assess the prevalence of disability and access to support services was conducted in Albay Province, the Philippines in April 2016.

 

Method:  The population-based survey methodologies developed by the Washington Group of the United Nations Statistical Commission and UNICEF were utilized.  A sample of 70 barangays (the 3rd level administrative division in the Philippines) was selected as clusters, with probability proportional to size, and 30 households were selected randomly in each barangay to be surveyed.

 

Results:  The estimated prevalence of disability using the standard criteria of the Washington Group and UNICEF among children (2-17 years old) was 2.0% and for adults (≥18 years old) it was 6.5%.  The estimated prevalence of disability was higher in rural than in urban areas.  Deficiencies in the performance of existing services were identified; access by children with disabilities to support services was lowest in rural highland and rural plain barangays.

 

Conclusions: There was a large unmet demand for support services addressing the needs of persons with disabilities in Albay Province, especially in rural highland areas.  Persons with disabilities were disadvantaged in access to education and employment; many had not been educated in their basic rights.

 

Implications:  To identify, educate and fully support persons with disabilities, community-based rehabilitation (CBR), health and other rehabilitation services must communicate effectively with each other, their current work should be mapped and analysed, their comparative strengths identified, and their future work coordinated.  It is a priority to educate persons with disabilities and their families about their rights, and facilitate their access to support services; this requires increased investment in communication targeting persons with disabilities and the communities, especially rural.  Providers caring for persons with disabilities need to work in partnership to identify unreached persons with disabilities.  Prevalence surveys, with stronger focus on the profiles and performance of CBR and related services, would add to the evidence-base to improve the quality and coverage of services for persons with disabilities.

Public health, research and rights: the perspectives of deliberation panels with politically and socially active disabled people

BERGHS, Maria
ATKIN, Karl
GRAHAM, Hilary
HATTON, Chris
THOMAS, Carol
2017

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Public health research purports to provide the evidence base for policies, programmes and interventions to improve the health of a population. However, there is increasing awareness that the experiences of disabled people have played little part in informing this evidence base. This paper discusses one aspect of a study commissioned by England’s National Institute for Health Research (NIHR) to review the implications for public health of theories and models of disability. This part of the study focused on the development of a tool or decision aid to promote ethical inclusion of disabled people in public health randomised controlled trials (RCTs) and evaluative research. The tool was introduced at four regional ‘deliberating panels’ involving politically and socially active disabled people. In addition, we held a panel with public health professionals. The deliberation panels debated how the focus of public health was narrowing, why disability was excluded and positive and negative issues with using rights to guide research and evaluative practice. Politically active disabled people argued for a social model of human rights to guide any rights based tools or decision aids in public health and disability research.

Research Protocol: Development, implementation and evaluation of a cognitive behavioural therapy-based intervention programme for the management of anxiety symptoms in South African children with visual impairments

VISAGIE, Lisa
LOXTON, Helene
SILVERMAN, Wendy K
2015

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Background: Childhood anxiety presents a serious mental health problem, and it is one of the most common forms of psychological distress reported by youth worldwide. The prevalence of anxiety symptoms amongst South African youth is reported to be significantly higher than in other parts of the world. These high prevalence rates become even more significant when viewed in terms of children with visual impairments, as it is suggested that children with physical disabilities may be more prone, than their non-disabled peers, for the development of psychological difficulties. 

 

Objectives: The main aim of this study is to develop, implement and evaluate a specifically tailored anxiety intervention programme for use with South African children with visual impairments.

 

Method: A specifically tailored cognitive-behavioural therapy-based anxiety intervention, for 9–13 year old South African children with visual impairments, will be evaluated in two special schools. The study will employ a randomised wait-list control group design with pre- postand follow-up intervention measures, with two groups each receiving a 10 session anxiety intervention programme. The main outcome measure relates to the participants’ symptoms of anxiety as indicated on the Revised Child Anxiety and Depression Scale.

 

Conclusion: If the anxiety intervention programme is found to be effective in reducing symptoms of anxiety, this universal intervention will lay down the foundation upon which future contextually sensitive (South African) anxiety intervention programmes can be built.

 

Effects of Multisensory Training on Balance and Gait in Persons with Type 2 Diabetes: A Randomised Controlled Trial

KUTTY, N A M
MAJIDA, N A
2013

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Purpose: Progressive deterioration of physical function occurs in persons with Type 2 diabetes and peripheral neuropathy. This study assessed the effects of multisensory training on balance and gait in persons with diabeticneuropathies.

 

Method: Thirty two persons with peripheral neuropathies were enrolled, randomised, and subdivided into 2 groups - an experimental group of 16 participants with diabetes (65 ± 2.12 years) and a control group of 16 participants with diabetes (68 ± 2.17 years). For 6 weeks, both groups were given health education on diabetes for 30 minutes a week. In addition, the experimental group practised a multisensory exercise programme for 30 minutes, 3 times a week over 6 weeks. Outcome measures used were ‘timed up and go’ test for assessing balance and ‘6-minute walk’ test for gait. Standard descriptive statistics were used to report means, standard deviation, and range for baseline characteristics. Paired and unpaired ‘t-tests’ were used wherever necessary, to determine significant differences in data among groups and between pre-test and post-test scores (p<0.05).

 

Results: By the end of the trial period, the intervention group showed a significant improvement in scores of the ‘timed up and go’ test (t= 14.7092), but there was no statistically significant difference in the ‘6-minute walk’ test scores (p=0.7206, t= 0.3644).There was no difference for both measures in the control group.

 

Conclusion: The study showed that multisensory exercises could improve balance in persons with Type 2 diabetes and peripheral neuropathy. The findings suggest that along with physiological sensory factors, cognitive-behavioural factors and strengthening of the lower limb muscles should be considered when treating diabetic persons with gait alterations.

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