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Knowledge of, beliefs about and attitudes to disability: implications for health professionals

MASASA, T
IRWIN-CARRUTHERS, S
FAURE, M
2014

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Background: South Africa is a multicultural, multiracial and multilingual nation with many different values, traditions and cultural practices. Different belief systems may give rise to different attitudes and practices relating to disability, which may impact on rehabilitation. The purpose of this study was to investigate the knowledge, attitudes and beliefs relating to disability in three broad cultural groups in the Western Cape.

 

Method: Sixty primary caregivers were interviewed by using a knowledge, attitude and belief (KAB) survey in a structured interview format. Probability and non-probability (systematic and purposive) sampling were used. The study used both quantitative and qualitative methods.

 

Results: While caregivers from coloured and white communities generally had become acquainted with disability from an early age, caregivers in black communities often only learnt about disability following the birth of a disabled child. All caregivers had only a rather rudimentary knowledge of the causes of disability, but held positive attitudes towards people with disabilities and their integration into society. The qualitative data showed some differences in beliefs between the three groups in relation to the causes of disability and the need for rehabilitation. The data also revealed negative experiences across the groups in relation to education and the availability of transport, particularly amongst caregivers from black and coloured communities.

 

Conclusions: Health professionals need to understand the culture, values, beliefs and expectations of their clients when providing rehabilitation services within a community-based model. There appears to be a need for improved disability awareness in schools and amongst transport service providers.

Factors that influence doctors in the assessment of applicants for disability grant

TUMBO, JM
2014

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Background: A disability grant is the financial assistance given by the government to South African citizens and bona fide refugees who have debility that results in inability to work. Doctors in state hospitals and clinics are tasked with the duty of assessing applicants for this grant. Ideally, the assessment is done by an institutional committee consisting of a doctor, physiotherapist, social worker, occupational therapist and specialised nurses. However, this is not always the case because of a shortage of personnel, particularly in rural areas. A lack of clear guidelines for the assessment process has led to confusion and differences in the outcomes. This poses major problems for the doctors, as well as the applicants, who often are dependent on the grant for survival. The aim of this study was to explore the factors that influence doctors in the assessment of applicants for a disability grant.

 

Methods: A qualitative study using free attitude interviews was conducted amongst doctors involved in the assessment process in Limpopo province. Content analysis was used to identify themes from the interviews.

 

Results: The assessment process was not entirely objective and was influenced by subjective factors. These included the mood of the doctors, emotions such as anger and sympathy, and feelings of desperation. Perceptions by the doctors regarding abuse of the system, abuse of the grant, the inappropriateness of the task, lack of clear guidelines and the usefulness of the committees were important in decision making. The doctors’ personal life experiences were a major determinant of the outcome of the application.

 

Conclusion: The assessment of applicants for a disability grant is a subjective and emotional task. There is need for policy makers to appreciate the difficulties inherent in the current medicalised process. Demedicalisation of certain aspects of disability assessment and other social needs that doctors do not view as a purely clinical functions is necessary. In addition, there is a need for clear, uniform policy on and guidelines for the management of the grant, the role of the doctor has to be defined, healthcare practitioners must be trained in disability assessment, institutional committees should be established and intersectoral initiatives should be encouraged to address issues of poverty and dependence.

Survey of Reproduction Needs and Services: Situation of Persons with Spinal Cord Injuries

JINMING, Z
YUGE, Z
GENLIN, L
YUCHEN, G
SUWEN, C
2014

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Purpose: This article explores the reproductive wants and needs of persons with spinal cord injuries (SCI), along with factors that influence these needs and the services available to them.

 

Method: The study sample comprised persons with SCI from China Rehabilitation Research Centre who matched the research criteria and consented to participate. Data collection took place through questionnaires and in-depth interviews. After the objectives, contents and methods of the survey were explained, 63 respondents answered the questionnaire, and 17 of them (15 men and 2 women) agreed to participate in the in-depth interviews. All the respondents were above 18 years of age, either unmarried or married, and childless.

 

Results: It was found that 85.7% of the respondents wished to have children. The more severe the SCI, the less was the desire for children. Those with higher levels of education were less inclined to have children. While financial situation had little impact on the wish for children, the impact of traditional concepts was significant. The reproductive experiences of other SCI clients had a significant influence on respondents’ desire to have children. More than 50% of the respondents were ignorant that they could have babies after SCI. 96.8% of them believed that a child played an important role in marital stability. Though 54% of the respondents wished to have their sexual and fertility problems addressed in medical and rehabilitation institutions, 93.7% said they had not received any such professional services during the previous year.

 

Conclusions: Although most persons with spinal cord injuries are very keen to have children, their wants and needs are not recognised and little attention is paid to specialized service provision to address their needs. This study suggests that steps such as improving awareness, disseminating knowledge and setting up institutions to provide professional services are necessary to address reproductive needs and to protect the reproductive rights of persons with SCI.

Caregiver’s Involvement in Early Intervention for Children with Communication Disorders

MALAR, G
SREEDEVI, N
SURESH, C
2014

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Purpose: Since very young people benefit from early identification of communication disorders, the primary caregivers (generally the parents) become the fulcrum of the intervention services provided. This article deals with the measures taken to empower caregivers, as part of the early intervention services offered at the All India Institute of Speech & Hearing (AIISH) in Mysore city in India, and the impact this has had on their wards’ progress.

 

Method: A survey was conducted among the caregivers of 205 clients who availed of early intervention services. Five-pronged data were collected, pertaining to family demographic details, early intervention measures for their children with communication disorders, type and intensity of caregiver empowerment measures provided along with early intervention services, resultant caregiver participation in the education and training of their wards, and the consequent development in children with communication disorders. The mutual influences among these factors were analysed using simple correlation measures.

 

Results: The findings revealed that informal, but continuous and consistent efforts to empower parents, such as counselling and guidance, had a better impact. Empowered caregivers in turn contributed towards the education and training of their children with communication disorders, resulting in improved development of their wards’ communication skills and academic achievements.

 

Conclusion: The evidence adds strength to recommendations that caregiver empowerment and participation need to become integral components of early intervention services for young children with special needs.

Effect of an Experiential Dysphagia Workshop on Caregivers’ Knowledge, Confidence, Anxiety and Behaviour During Mealtimes

HETTIARACHCHI, S
KITNASAMY, G
2013

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Purpose: Children with cerebral palsy who have associated feeding difficulties are at risk of aspiration and poor nutrition. This study aimed to measure the changes in knowledge, confidence, anxiety and behaviour among 25 Sri Lankan mothers with responsibility for feeding children diagnosed with cerebral palsy, after they attended an experiential workshop.

 

Method: Data collection was done through pre- and post-workshop questionnaires, observations and semi-structured interviews.

 

Results: There was a significant improvement in reported levels of knowledge and confidence and a decrease in the caregivers’ level of anxiety during mealtimes. The qualitative data analysis indicated changes in participant knowledge, particularly about the signs of aspiration and positioning during mealtimes. Observations showed better adherence to recommendations on communication, bolus size and utensils.

 

Conclusion: The findings support the utility of experiential training for caregivers, to ensure that children with cerebral palsy are fed safely.

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

Quantitative Exploratory Evaluation of the Frequency, Causes and Consequences of Rehabilitation Wheelchair Breakdowns delivered at a Paediatric Clinic in Mexico

TORO, M L
GARCIA, Y
OJEDA, A M
DAUSEY, D J
PEARLMAN, J
2012

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Purpose: The United Nations Convention on the Rights of Persons with Disabilities recognises assistive technology such as wheelchairs (WCs) as a tool for social inclusion for this population. In less resourced settings, organisations lack information about effective models of WC service provision. The goal of this study was to investigate the lifespan of WCs and whether they provided reliable mobility, at one clinic in Mexico.

 

Methods: Caregivers of children, who had requested replacements for their WCs from a clinic in Mexico, were interviewed in Spanish. Among others, the questions pertained to repairs/modifications, adverse events and WC usage characteristics. The owners exchanged their WCs for new ones at the clinic, and the maintenance status of each returned WC was evaluated using the WC Assessment Checklist (WAC).

 

Results: Twenty-three donated WCs, used by children aged 3 to 14 years for an average of 19 months, were evaluated. Brakes (n=18), seat and back-sling upholstery (n=11 and 7 respectively), and armrests (n=14) were the components that failed most frequently. A total of 26 adverse events due to WC failure were reported. Adverse events were significantly associated with poor WAC scores (rs=-0.544, p=0.007).

 

Conclusions: Poor WC reliability, associated with adverse events which could undermine social engagement, indicates the need for a stronger WC and for regular maintenance. For instance, brake failures which were most often associated with adjustment issues, could have been resolved with maintenance, while seat and back-sling upholstery and armrest failures suggest that the WC may not be appropriate for the environment. Future work should investigate the robustness of these WCs using standardised methods (ISO 7176), as well as the impact of maintenance interventions on WC reliability.

Family perceptions of intellectual disability: Understanding and support in Dar es Salaam

ALDERSEY, Heather M
2012

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When attempting to understand the construct of intellectual disability in different contexts, speaking to family members in addition to the individual with the disability may provide new insight about understandings of and responses to intellectual disability in society and may help to identify the forms of support that are available or needed to ensure the quality of life of people with disabilities. This article outlines and discusses interviews that were conducted in Dar es Salaam, Tanzania, with family members of children and adults with intellectual disabilities. These interviews explore how families came to understand that their child had an intellectual disability; the availability of family support; and family hopes and dreams for the future, and were a part of a wider exploratory study that gathered insight from individuals with disabilities, families, and other providers of support to explore understandings and perceptions of disability in Dar es Salaam. Understanding family experiences will help researchers, policy makers, non-governmental organisations, and others to identify family strengths and family support needs which can ultimately improve family quality of life and the quality of life of the member with a disability.

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa

GRUT, Lisbet
MJI, Gubela
BRAATHEN, Stine H
INGSTAD, Benedicte
2012

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Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalization of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognized and utilized.

Improving Accessibility to Medical Services for Persons with Disabilities in Thailand

NUALNETR, N
SAKHORNKHAN, A
2012

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Purpose: This action research aimed at developing an action plan to improve the accessibility to home health care and assistive devices for persons with disabilities in a rural community, and to evaluate changes in the numbers of such persons who received appropriate home health care and assistive devices after a three-month implementation of the action plan.

 

Method: The study was conducted at a sub-district of Maha Sarakham Province, Thailand. The main beneficiaries were 99 persons with disabilities (mean age 55.4±18.7 years). Group meetings were organised for persons with disabilities, caregivers, and various community members. An action plan for improving the accessibility of persons with disabilities to home health care and assistive devices was collaboratively formulated and implemented for three months.

 

Results: The main strategy for improving accessibility was to increase the competency of village health volunteers in providing home health care and assistive devices to persons with disabilities. After the three-month action plan implementation, the number of persons with disabilities who received appropriate home health care, i.e. at least once a month, significantly increased from 33.3% to 72.2% (Chi-square test, P<0.01, 95% CI 18.5 to 59.3). The number of persons who received assistive devices suited to their disabilities also significantly increased from 33.3% to 58.3% (Chi-square test, P=0.03, 95% CI 3.5 to 46.5).

 

Conclusions: Under the supervision of physical therapists and/or other allied health professionals, the village health volunteer is likely to be a key person for improving the accessibility to home health care and assistive devices for personswith disabilities in a rural community.

 

Limitations: The study was limited to only one sub-district. No comparable areas were studied. Further, since the study recruited persons with disabilities from a rural community, applicability of the findings to persons with disabilities in an urban community should be considered judiciously.

The Community Based Rehabilitation Programme of the University of the Philippines Manila, College of Allied Medical Professions

MAGALLONA, M L M
DATANGEL, J P
2012

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Purpose: This paper reports the process of development of a CBR programme by UP Manila College of Allied Medical Professions, and its impact on the stakeholders: persons with disabilities, students and alumni, CBR workers, local leaders and the agencies involved in the programme.

 

Method: The impact of the programme was assessed through interviews, questionnaires, focus group discussions and review of secondary data and records.

 

Results: The programme results show that the condition of persons with disabilities has improved and there has been a remarkable change in their knowledge, attitudes and skills. The positive attitudes, skills and values of students were enhanced, and the CBR programme was a “character builder” for them as rehabilitation professionals. The CBR workers who participated in the programme learnt to appreciate the potential of persons with disabilities and to accept their limitations. Another key result was the pledge by local leaders to sustain CBR in their own villages.

 

Conclusions: The students and alumni reported that the CBR programme should be replicated for nation-building. The different stakeholders reported that it helped improve the quality of life of people with disabilities and contributed to community development.

Complexities in the Provision of Respite Care to Family Carers of Persons with Intellectual Disabilities

MANNAN, H
O'BRIEN, P
MCCONKEY, R
FINLAY, F
LAWLOR, A
HARRINGTON, G
2011

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Purpose: Respite care is generally thought to benefit family carers of persons with intellectual disabilities and is regarded as an important component of family-centred services. However, the complexities associated with the provision of such services, from the carer’s perspective, have been rarely investigated.

 

Method: This qualitative research study was carried out through a participatory action research process that involved collaboration among researchers and family members as co-researchers. Seven focus groups, involving seventy family carers (fifty mothers, fifteen fathers and five sisters), were held in seven locations across the Republic of Ireland.

 

Results: Three main themes dominated the discussions. The first theme related to the ambivalence of carers towards using respite services, as expressed in their reluctance to relinquish care-giving for even a short period; the feelings of guilt they experienced; and the greater needs of other carers. The second theme related to the benefits of respite breaks, but these were solely with respect to the carer and other family members, rather than to the person with an intellectual disability. The third theme regarding the quality of provision was dominated by concerns for the care the person received in using the services.

 

Conclusions: Respite care has the potential to make a difference, and these findings call for building much- needed alliances between all members of the family and professionals. This is in order to support one another through the difficulties associated with the redesign of existing respite provision, and the extension of these services to the growing number of carers who require respite breaks.

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