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Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

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

COVID-19 Communication Rights Toolkit

2020

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This toolkit: (1) explains your communication rights; (2) provides tips on advocating for them, and (3) has an accommodation request form you can bring to the hospital.

 

United States version.

Experiences of teaching sexual and reproductive health to students with intellectual disabilities

NELSON, Becky
PETTERSSON, Karen Odberg
EMMELIN, Maria
2020

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There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.

Assessing significant others’ cognitions and behavioral responses in occupational health care for workers with a chronic disease

SNIPPEN, Nicole C
DE VRIES, Haitze J
DE WIT, Mariska
VAN DER BURG-VERMEULEN, Sylvia J
BROUWER, Sandra
HAGEDOORN, Mariet
January 2020

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Purpose: To examine current practices of occupational health professionals in assessing significant others’ cognitions and behavioral responses that may influence work outcomes of workers with a chronic disease.

 

Methods: A survey study among occupational health professionals, focusing on the assessment of illness perceptions, work-related beliefs and expectations, and behavioral responses of significant others of workers with a chronic disease. We performed linear regression analyses to investigate which factors are related to occupational health professionals’ assessment practices. We used thematic analysis to analyze qualitative data on occupational health professionals’ reasons to assess or overlook significant others’ cognitions and behavioral responses.

 

Results: Our study sample included 192 occupational health professionals. Most seldom asked about significant others’ cognitions and behavioral responses. Organizational norms and occupational health professionals’ self-efficacy were related to reported assessment practices. Reasons to assess significant others’ cognitions and behavioral responses included recognizing their influence on work participation, and occurrence of stagnation. However, occupational health professionals indicated some doubt whether such assessment would always contribute to better care.

 

Conclusions: It is not common practice for occupational health professionals to assess significant others’ cognitions and behavioral responses, although they recognize the influence of these factors on work outcomes. More research is needed as to how occupational health professionals can best address the role of significant others, and apply these new insights in their daily practice.

Impact of Exercise Training on Depression among People with Type 2 Diabetes Mellitus: A Narrative Review

KUTTY, N.A.M
PILLAI, D.R
2020

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Purpose: The prevalence of clinically relevant depressive symptoms among clients with Type 2 diabetes mellitus is in the range of 30%. Since these conditions are often under-diagnosed and under-treated in clinical practice, they negatively affect functional recovery, adherence to treatment, and the quality of life. Despite the large body of evidence regarding the effects of exercise training on different aspects of diabetes, no updated conclusive article that reviews depression is available. This article aims to review the current literature on exercise training and its effect on depression in people with Type 2 diabetes mellitus.

 

Method: An electronic search of literature from 2010, highlighting the effects of exercise on depression among Type 2 diabetes mellitus clients, was conducted using Google Scholar and PubMed.  Relevant articles were utilised for this review.  The selected studies are based on relational and rehabilitative exercise training approaches.

 

Results: While most of the studies support the efficacy of exercise training, study settings and described models are not conclusive.  No single clearly defined model exists for exercise training for depression among people with diabetes. There is evidence for the efficacy of supervised aerobic exercise in the treatment of depression, when undertaken three times weekly at moderate intensity, for a minimum of eight weeks. Further research is required to develop specific exercise training models that can be tested in experimental studies for this client group.

 

Conclusion: The current review showed that exercise training can be used to alleviate depression among people with diabetes. Future studies should adopt rigorous methodological criteria to back up the present findings.

How can the health of people with disabilities in humanitarian camps be supported during the COVID-19 pandemic? - Evidence brief

HUNT, Xanthe
2020

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More than 10% of the world’s 35 million displaced people are people with disabilities. People with disabilities and their families are at significant risk of discrimination, stigma, violence, and marginalisation, and get little access to adequate services in humanitarian camps. Disabled people are frequently sidelined during health sector planning in humanitarian camps, and healthcare access is a particular challenge. The COVID-19 pandemic, and measures necessary for its containment, pose a particular threat and challenge in humanitarian settings. Containment measures such as mass ‘stay-at-home' orders, social distancing, self-isolation and quarantine are often unsuitable for, or difficult to implement in, camp settings. People in humanitarian camps, then, need special consideration within the COVID-19 response. However, among people in humanitarian camps, people with disabilities are particularly vulnerable to being left behind or overlooked in COVID-19 planning and programming. Their double vulnerability as refugees and disabled people warrants special consideration.

 

Evidence in considered and recommendations provided.

Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

VAN GORP, Marloes
DALLMEIJER, Annet J
VAN WELY, Leontien
DE GROOT, Vincent
TERWEE, Caroline B
FLENS, Gerard
STAM, Henk J
VAN DER SLOT, Wilma
ROEBROECK, Marij E
December 2019

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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.

 

Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.

 

Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.

 

Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.

How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

JOHNSON, Ensa
NILSSON, Stefan
ADOLFSSON, Margareta
November 2019

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Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.

 

Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).

 

Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.

 

Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.

 

Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

 

 

African Journal of Disability, Vol 8, 2019

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.

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.

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

Social insurance literacy: a scoping review on how to define and measure it

STAHL, Christian
KARLSSON, Elin A
SANDQVIST, Jan
HENSING, Gunnel
BROUWER, Sandra
FRIBERG, Emilie
MACEACHEN, Ellen
October 2019

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Purpose: Sickness insurance and workers’ compensation systems decide on peoples’ eligibility for benefits, and are commonly based on medical certificates and assessments of work ability. Systems differ in the extent to which they preserve clients’ dignity and right to fair assessments. In this article, we define a new concept for studying interactions between individuals and systems: social insurance literacy, which concerns how well people understand the different procedures and regulations in social insurance systems, and how well systems communicate with clients in order to help them understand the system.

 

Methods: The concept was defined through a scoping literature review of related concepts, a conceptual re-analysis in relation to the social insurance field, and a following workshop.

 

Results: Five related concepts were reviewed for definitions and operationalizations: health literacy, financial/economic literacy, legal capability/ability, social security literacy, and insurance literacy.

 

Conclusions: Social insurance literacy is defined as the extent to which individuals can obtain, understand and act on information in a social insurance system, related to the comprehensibility of the information provided by the system. This definition is rooted in theories from sociology, social medicine and public health. In the next step, a measure for the concept will be developed based on this review.

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

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

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.

How do we improve access to healthcare for people with disabilities?

HUNT, Xanthe
August 2019

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Gaining access to healthcare is often a challenge for people with disabilities in low- and middle-income countries. Part of this has to do with a general dearth of healthcare services in low-resource settings. But part of this difficulty has to do with structural, attitudinal, economic and social barriers to participation and healthcare which affect people with disabilities more than people without disabilities. This lack of access to healthcare is a problem because, in general, people with disabilities may need to access healthcare more frequently than people without disabilities. Full and equitable access to quality healthcare is a human right, and an important imperative of the global agenda. This evidence brief summarises what we know about how to improve access to healthcare for people with disabilities in low-resource settings.

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.

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