The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations.
Resilience is the capacity to cope successfully with various threats. This paper aims to adapt the Resilience-Scale of Schumacher et al. (2004. Die Resilienzskala – ein Fragebogen zur Erfassung der psychischen Widerstandsfähigkeit als Personmerkmal. [The Resilience Scale – A Questionnaire to Measure Mental Resilience as a Personal Characteristic]. Zentrum für Klinische Psychologie, Psychiatrie und Psychotherapie) to measure the tendency of being resilient even before a threat occurs. Since primary school students are exposed to various threats at school, 535 4th grade students of Austrian primary schools were surveyed for the study. The reliability of the short-scale was found to be acceptable (Cronbach’s α = .66), and the tendency towards resilience can be explained by the students’ perception of their social inclusion in class (F (1,252) = 15.11, p<.05) and the relationship with their mothers (F (2, 251) = 10, 02, p<.05). The stability of the students’ tendency of being resilient was only moderate. A similar correlation between resilience and school-wellbeing for victims and non-victims of bullying can be reported. Future studies should focus more on primary school students’ resilience and related protective factors.
Purpose: While ageing is an inevitable phenomenon of life, physical activity is important for healthy ageing. Compared to the other age groups, older adults throughout the world have the lowest rate of participation in recommended levels of physical activity. This study aimed to investigate the physical activity status of the community-dwelling elderly population in Gujarat, India.
Method: This was a cross-sectional study. A door-to-door survey was conducted among selected communities near Vadodara in Gujarat. Based on the inclusion criteria (age≥60years, MMSE-≥24), 347 elderly persons were included in the study. Data was collected using the Global Physical Activity Questionnaire (GPAQ), and analysed using descriptive statistics.
Results: Among the 347 older adults (mean age 67.43±7.46 years) who participated in the study, 159 were male and 188 were female. While 125 participants (36%) were physically active at levels recommended by the World Health Organisation, 222(64%) were physically inactive.
Conclusion: Only 36% of the participants were physically active as per WHO recommendations. The men were more physically active than the women in the study sample. This study implies that there is a need to create an awareness regarding the importance of physical activity for healthy aging.
Purpose: In many nations across the world it has become a priority to stimulate increased physical activity (PA) among elderly persons. This study aimed to find the association between physical activity patterns and enjoyment of physical activity and health-related quality of life (HRQoL) among institutionalised older adults in Malaysia.
Method: A sample of institutionalised older adults (n=134, mean age = 73.72; SD = 8.59) was recruited from the Klang valley in Malaysia. In cross-sectional analyses, their physical activity, enjoyment of physical activity and quality of life were screened using the Physical Activity Scale for the Elderly, the 8-item Physical Activity Enjoyment Scale and the EuroQuol-5 Dimensions-5 Levels questionnaires, respectively. High levels of physical activity were associated with enjoyment of physical activity and health-related quality of life.
Results: In total, 41% of the participants met the guidelines of the Physical Activity Scale for the Elderly and 53% enjoyed physical activity. A positive correlation was found between the level of physical activity and its enjoyment (rs = .355, p <.001). Significant correlations were recorded between the dimensions of health-related quality of life and the level of physical activity (p < 0.001), except for pain/discomfort and anxiety/depression.
Conclusion: Providing opportunities for institutionalised older adults to engage in a variety of activities might help them to identify the kind of physical activity they enjoy and facilitate a lifelong physical activity routine.
The question and the problem:
Symptoms of mental ill-health are common during widespread outbreak of an infectious disease, with high rates of depression, anxiety and post-traumatic stress disorder (PTSD) reported during recent epidemics, such as the recent Ebola crises and SARS-CoV-1. Elevated symptoms of mental ill-health are not limited to patients only, and are seen in healthcare workers, family members and indeed more widely across the general population. Early evidence coming from the COVID-19 pandemic demonstrates high rates of mental ill-health and mental health service provision is needed. This evidence brief summarises evidence on mental health support during COVID-19 and other recent pandemics, informing policy and practice during this crisis.
This blog discusses the impact of Coronavirus (COVID-19) on people with intellectual disabilities.
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
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.
Summaries on the findings from the following queries:
Define mental health and psychosocial support (MHPSS) and intended outcomes of these interventions (at the global level).
What is the evidence on the nature of the problem and the scale of need for MHPSS services in Syria?
What is the evidence on effectiveness of MHPSS interventions in Syria?
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
Research indicates that occupation is important for well-being in people with mental illness, but this has not been extensively studied among those with severe psychiatric disabilities. Social contacts may possibly play a more vital role for them. This study aimed to explore how aspects of occupation and social interaction were related with well-being factors in that group, while controlling for the influence of clinical factors. People with psychiatric disabilities living in congregate supported housing (CSH; N = 155) responded to questionnaires addressing occupation, social contacts and well-being aspects, such as subjective health, quality of life, self-mastery, and personal recovery. A comparison group with psychiatric disabilities who lived in an ordinary flat or house and received outreach housing support (N=111) completed the same instruments. The two groups were compared regarding their pattern of associations between occupation, social contacts, and well-being. Associations between occupation and well-being in the CSH group showed that general satisfaction with everyday occupations in particular was related to all aspects of well-being, whereas activity level and occupational balance were not related to well-being. The relationships were fewer and weaker, in comparison to the group in ordinary housing with outreach support. Indicators of social contacts were basically unrelated to well-being. The study contributes to occupational science by showing that the role of a high activity level for well-being, although important, should not be overemphasized. Future research should focus on narratives to get the voices of people residing in CSH and on exploration of how individually/socially performed occupations are associated with well-being.
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
Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.
Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.
Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
A K4 helpdesk report, commissioned by DFID (UK), provides a rapid review of literature to provide best estimates of psychosocial disability in specific countries in the Middle East.
Topics discussed include:
Prevalence and different forms of mental health conditions and psychosocial disability
Factors influencing prevalence
Differences across demographics
Provision for those with psychosocial disabilities
Background: The purpose of this study was to explore the psychological well-being of adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe. An inclusive community is one that aims to remove exclusionary practices within the community and promote community systems that accept all people irrespective of their difference. Inclusive communities on their own are not uniquely designed for people with disabilities, but most developing countries have adopted them as a basic strategy to influence and enhance psychological well-being of people with disabilities.
Methods: A constructivist lived experience perspective underpinned this research, in which multiple case studies were used to interact with the participants on inclusion and psychological well-being of adolescents with physical disabilities. Purposive sampling was used to select 14 participants (9 males and 5 females). Data were collected through face-to-face interviews and transcribed verbatim. Four themes emerged from the thematic analysis of data sources.
Results: It was found that participants who were adolescents with physical disabilities living in inclusive community settings of Makonde Urban in Zimbabwe were having high levels of autonomy and choice, purpose in life, positive relations with others and good personal growth and self-acceptance.
Conclusion: The findings of this study should enable inclusive communities’ policy-makers and researchers to better understand the psychological well-being of adolescents with physical disabilities living in inclusive communities.
This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.
The Eastern Mediterranean Region (EMR) is witnessing an increase in chronic disorders, including mental illness. With ongoing unrest, this is expected to rise. This is the first study to quantify the burden of mental disorders in the EMR. Data was used from the Global Burden of Disease study (GBD) 2013. DALYs (disability-adjusted life years) allow assessment of both premature mortality (years of life lost–YLLs) and nonfatal outcomes (years lived with disability–YLDs). DALYs are computed by adding YLLs and YLDs for each age-sex-country group.
Purpose: This study assesses the factors that influence the wellbeing of caregivers and their children with a disability, in a rural and an urban site in Ghana. The wellbeing of parents, not surprisingly, influences the wellbeing of their children. A better understanding of the role and challenges faced by parents in caring for their child with a disability will help to improve existing services and support for children with disability.
Methods: Twenty-five parents of children with different disabilities participated in a PhotoVoice study. Photographs taken by parents, to show the challenges they experienced in childcare, were explained and discussed during focus group discussions. The Cantril Ladder was used to discuss subjective wellbeing.
Results: The photographs and discussions with parents indicated that the extensive time spent on their child, the child’s poor health status, and lack of educational opportunities had a negative influence on the wellbeing of both parent and child. Parents struggle to earn an income to provide for a child with disability. This often causes them to sink into (even deeper) poverty, and further increases the challenge to provide the (specific) care that a child with disability needs.
Conclusions and Implications: If governments, non-governmental organisations and community-based organisations want to contribute to the wellbeing of children with disability, they should be aware of the immediate context of the child, namely the family, and of the specific needs of the parents. Since the wellbeing of parents can affect the wellbeing of the child, and a child with disability may often cause further poverty in the family, relieving parents from some of the demands of childcare could help them to generate income, to the ultimate benefit of the entire family. Organisations working for children with a disability should actively involve parents of these children in designing and implementing interventions.
Employment rates amongst disabled people reveal one of the most significant inequalities in the UK today: less than half (48%) of disabled people are in employment compared to 80% of the non-disabled population. Despite a record-breaking labour market, 4.6 million disabled people and people with long-term health conditions are out of work leaving individuals, and some large parts of communities, disconnected from the benefits that work brings. People who are unemployed have higher rates of mortality and a lower quality of life. This green paper sets out the nature of the problem and why change is needed by employers, the welfare system, health and care providers, and all of us. Proposed solutions are set out and views requested. (Consultation now closed)
Background: The needs of caregivers of children with disability may not be recognized despite evidence to suggest that they experience increased strain because of their care-giving role. This strain may be exacerbated if they live in under-resourced areas.
Objectives: We set out to establish the well-being of caregivers of children with Cerebral Palsy (CP) living in high-density areas of Harare, Zimbabwe. In addition, we wished to identify factors that might be predictive of caregivers’ well-being. Finally, we examined the psychometric properties of the Caregiver Strain Index (CSI) within the context of the study.
Method: Caregivers of 46 children with CP were assessed twice, at baseline, and after three months, for perceived burden of care and health-related quality of life (HRQoL) using CSI and EQ-5D respectively. The psychometric properties of the CSI were assessed post hoc.
Results: The caregivers reported considerable caregiver burden with half of the caregivers reporting CSI scores in the ‘clinical distress’ range. Many of the caregivers experienced some form of pain, depression and expressed that they were overwhelmed by the care-giving role. No variable was found to be associated with clinical distress. The CSI demonstrated good overall internal consistency (Cronbach’s Alpha = 0.8), stability over time (Z = 0.87, p = 0.381) and was significantly and negatively correlated with the EQ-5D VAS (Spearman’s rho = −0.33, p = 0.027), demonstrating concurrent validity.
Conclusion: Caregivers must be monitored routinely for their level of distress and there is an urgent need to provide them with support. The CSI is likely to be a valid measure of distress in this population.
Source e-bulletin on Disability and Inclusion