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Sharing in the life of the person with disability: A Ghanaian perspective

OWUSU-ANSAH, Frances E
2015

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This thought article was a hermeneutic inquiry into the experiences of informal caregivers of the elderly who are also physically disabled. The experiences of some Ghanaian informal caregivers were examined in three clinical cases and laced with the lived experiences of the author as an informal caregiver and clinician. Two processes were explored. The first relates to how a caregiver is changed through the experience of caregiving by examining the intrapersonal and interpersonal dynamics affecting caregiving. Secondly, the positive ‘shifts’ that occurred in therapy were explored. In the present Ghanaian society it appears that care for the elderly disabled is compounded by the rapid migration of many Ghanaians to ‘greener pastures’ in search of a brighter future, with consequent empty homesteads and fragmentation of the socio-cultural practices that hitherto buttressed informal care for the aged. In the absence of well-established professional care facilities, informal caregiving with its numerous challenges has become the norm for many. This article posited that caregiver self-care is the most important, and yet often forgotten, aspect of informal caregiving. When this is neglected, caregiver burnout is sure to occur, which results in poor physical, mental and emotional health for the caregiver. In this state caregivers may injure both themselves and the care recipients.

Initial experiences of family caregivers of survivors of a traumatic brain injury

BROODRYK, Mandi
PRETORIUS, Chrisma
2015

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Background: There seems to be a paucity of research on the initial subjective experiences of family caregivers of survivors of a traumatic brain injury (TBI).

 

Objective: To explore the challenges that family caregivers face during the initial stages of recovery of a relative who has sustained a TBI.

 

Methods: Thematic analysis was used to explore the findings from semi-structured interviews that were conducted with 12 female family caregivers of relatives who had sustained a TBI.

 

Results: Family caregivers recalled their initial experiences of the shock at hearing the news about their relative’s TBI, negative experiences in hospital and frustrating interactions with healthcare professionals as particularly challenging. 

 

Conclusion: The findings of this study emphasise caregivers’ need for support, information and psycho-education, especially from healthcare professionals, from the very beginning stages of recovery from a TBI. Practical and physical needs with regard to admission to and care in the hospital were also highlighted. This research will hopefully contribute to creating awareness amongst healthcare professionals on how they can contribute to improvement of the services provided by the healthcare system based on the experiences of the caregivers who participated in this study.

 

Caring for a child with Cerebral Palsy: The experience of Zimbabwean mothers

DAMBI, Jermaine M
JELSMA, Jennifer
MLAMBO, Tecla
2015

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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.

Understanding the Lives of Caregivers of Children with Cerebral Palsy in rural Bangladesh: Use of Mixed Methods

Zuurmond, Maria A
Mahmud, Ilias
Polack, Sarah
Evans, Jenny
2015

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Cerebral palsy is the most prevalent health condition linked to childhood disability in Bangladesh, yet support and rehabilitation for this group is limited. Understanding the impact of cerebral palsy at family level is important forthe development of appropriate interventions.

 

Purpose: This study aims to explore the impact on the lives of caregivers of children with cerebral palsy.

 

Methods: The study used mixed methods. The PedsQLTMFamily Impact Questionnaire Module was administered to the main caregivers in 135 families with a child with cerebral palsy and 150 families that did not have a child with a disability, from the same villages. In-depth interviews and observations were undertaken with 10 families, and 2 focus group discussions were conducted with representatives from 14 parent/caregiver groups. The project was conducted from April 2011- April 2013. Data collection was from September 2011- Dec 2012.

 

Results: The mean overall and sub-scale PedsQLTM scores were significantly poorer (p<0.001) for caregivers of a child with cerebral palsy compared to scores from families that did not have a child with disability. Caregivers reported high levels of stress, anxiety, isolation, stigma, physical tiredness, and lack of time to complete everyday tasks. Knowledge and understanding about cerebral palsy was generally low.

 

Conclusion: This study demonstrates the particular vulnerability of families of children with disabilities in resource-limited settings. It reveals the extent of the impact on the caregivers. Interventions therefore need to be holistic, addressing the well-being and empowerment of caregivers as well as children.

Work Ability of Employees with Disabilities in Malaysia

Lavasani, Sobhan
Wahat, NorWahiza Abdul
Ortega, Adriana
2015

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Purpose: Based on a sample of employees with disability, this study aimed to: (1) evaluate the construct validity of work ability index (WAI), core self-evaluation scale (CSES) and job in general index (JIG), in order to make a valid and reliable assessment of their work ability, job satisfaction and core self-evaluation; (2) assess their levels of work ability, job satisfaction, and core self-evaluation; (3) investigate the associations of work ability with job satisfaction and core self- evaluation among them; and, (4) determine which demographic characteristics significantly affect the work ability of employees with disability.

 

Methods: The sample consisted of 275 employees with disability. Data was collected using a self-administered survey.The analysis focussed on: (1) CFA- for evidence of the construct validity of the employed scales; (2) Descriptive analysis - for evaluating the variables of the study; (3) Pearson correlation analysis – for understanding the simple correlation between variables of the study; and, (4) One-way ANOVA- for identifying the demographic factors that influence the work ability of employees with disability.

 

Results: The findings indicated that 29.5% of the participants had poor levels of work ability, while 35.3% reported moderate levels of work ability. Also, 49.1% of the participants reported moderate levels of core self-evaluation, and 70.5% exhibited high job satisfaction. In this study, work ability was found to be associated with core self-evaluation and job satisfaction. Significant differences in work ability levels were found in terms of age, level of education and employment status of the respondents.

 

Conclusion: Work ability among employees with disabilities did not seem to be influenced merely by individual health status. Attitudinal and dispositional factors appeared to have a significant impact on their levels of work ability. Thepotential positive impact of education and employment status on employees’ levels of work ability are highlighted in this study.

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Twenty-five years of Community Living: Changes in Support Staff Perceptions

Wark, Stuart
Bleechmore, Kathleen
2015

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Purpose: The attitudes of support staff towards people with intellectual disability can greatly impact upon an individual’s quality of life and level of social inclusion. However, there are few studies that examine how perceptions and beliefs have changed within one organisation over the past few decades; a period during which there have been major social and government policy changes including deinstitutionalisation, inclusive education and the introduction of the United Nations Convention on the Rights of Persons with Disabilities. In conjunction with a 25th anniversary review of a community-living project in rural Australia, the current research replicated a study from 1987 that examined attitudes of staff with respect to people with intellectual disability, and thematically compared the findings of the two questionnaires.

 

Method: In 1987, a purpose-designed questionnaire was developed and completed by 15 direct care staff. This 10-item tool asked for basic demographic information and for the participants’ perceptions of people with intellectual disability and their own work roles in the disability sector. This tool was replicated in 2013 and was again completed by 15 direct care staff from the same organisation.

 

Results: The thematic analysis indicated a number of differences between the 1987 and 2013 cohorts in regard to their attitudes. The wide acceptance of the rights of people with intellectual disability was one key change. There was an age separation found within the 2013 cohort, with older participants (> 50 years of age) more likely to display similar attitudes to the 1987 group than the younger participants (<30 years old). Dealing with the problem of ageing-related issues, something that was not obvious 25 years ago, was now considered of major importance. There was evidence that disability support was increasingly recognised as a valid career choice, with a substantial difference in motivation found between the two age groups. Across both cohorts, direct exposure to the realities of the job was seen to be the best training for new employees.

 

Conclusions: The past 25 years have seen positive developments in both social acceptance and expectations for people with disabilities. Individuals are now viewed in a realistic but more positive light. As an exemplar of this change, concerns about individuals entering a consenting sexual relationship have changed dramatically, and what was once an issue of major concern is now no longer raised. While the training provided to staff has changed significantly over the past 25 years, on-the-job exposure to people with intellectual disability, combined with support from peers, is still perceived as vital for developing a quality support network.

The Development of a New Quality of Life Questionnaire for Children with Hearing Loss - The Impact of Hearing Loss on Children (IHL-C): Field Testing and Psychometric Evaluation

Raj, Lavanya J
Pitchai, Swarnakumari
2015

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Purpose: To report the development of user-defined, multidimensional, psychometrically sound Quality of Life questionnaires – Impact of Hearing Loss on Children – IHL-C 69 and Brief IHL-C for children with hearing loss, in two languages -Tamil and English.

 

Methods: 421 problem statements from previous qualitative studies were reduced to a 220-item questionnaire with 7 domains (educational implications, social integration, psycho-social well-being, speech, language and communication, family relationships, leisure time activities and general functioning). After field testing, the domain of leisure time activities was dropped, resulting in a 103-item self-administered questionnaire with 6 domains. This 103-item questionnaire was translated from Tamil to English, and self-administered by children with hearing loss (11-18 years of age) in Special schools (n=100) and Integrated schools (n=100), as well as by normal controls in Integrated schools (n=200). Standard methods were used for item reduction and to evaluate psychometric properties.

 

Results: Psychometric item reduction produced the 69-item IHL-C69 (long version) and 48- item Brief IHL-C (brief version) questionnaires. Psychometric evaluation showed that all the domains of both the questionnaires had good acceptability, high internal consistency (alpha >0.80; intrinsic validity >0.80) and test-retest reliability (0.86).The questionnaires significantly distinguished between the children with hearing loss and the normal controls. The domains of both the questionnaires showed moderate evidence of convergent validity, and discriminant validity derived through hypotheses testing showed mixed results. The translation validity was also determined.

 

Conclusion: The IHL-C 69 and Brief IHL-C are reliable and valid user-defined, multidimensional questionnaires, available for the first time in both Tamil and English languagesin Tamil Nadu, India. Designed to analyse the impact of hearing loss and to determine the quality of life of children with hearing loss, the questionnaires could be used to prioritise the goals for rehabilitation intervention for these children.

Nigerian Realities: Can we ignore Traditional Leadership in developing successful CBR?

VERMEER, Bertine
CORNIELJE, Marije T
CORNIELJE, Huib
POST, Erik B
IDAH, Mike A
2015

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Purpose: To study the role of traditional leaders (Sarakuna) who provide a form of social welfare for persons with disabilities in the Hausa society of Northern Nigeria. From the results of this study, lessons are derived for cooperation with Sarakuna in (emerging) Community Based Rehabilitation programmes.

 

Methods: A literature study was done using different (non-)electronic sources. In addition, 26 semi-structured interviews were conducted with different stakeholders (e.g., non-governmental organisations, disabled people’s organisations), and 8 focus group discussions were held with (leaders of) persons with a disability. Question-led analysis was utilised by considering 4 dimensions: rehabilitation outcomes, rehabilitation services, involvement of beneficiaries, and social acceptability.

 

Results: Not much literature is available on the role of traditional leadership in rehabilitation programmes and social welfare. Nevertheless, this study found indications that traditional leadership is still present in contemporary NorthernNigeria. Some Sarakuna improve the socio-economic position of persons with disabilities by functioning as mediators and by their ability to provide social insurance. Their cooperation with multiple stakeholders enables them to distribute food and clothes. Also, since they possess essential information, NGOs are helped to access the community of persons with disabilities. Sarakuna are in a position to promote the inclusion and rehabilitation of persons with disabilities, but often lack necessary skills and training; yet, Community Based Rehabilitation programmes often ignore them.

 

Conclusions and Implications: Community Based Rehabilitation programmes should take better note of social contexts and therefore should also work in the specific context of traditional leadership. In this way, rehabilitation programmes are more likely to meet the expectations of persons with disability.

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