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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

Impact of Covid-19 on the education of children with disabilities in Malawi: results from a survey with parents

MBUKWA-NGWIRA, Jenipher
TANEJA JOHANSSON, Shruti
SINGAL, Nidhi
March 2021

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The overall objective of this study was to examine the impact of school closures due to Covid-19 on the education of children with disabilities attending primary schools. Using phone surveys, 99 parents/carers were interviewed to gain insight into the educational experiences of their children, any barriers faced and their main concerns. All the families had at least one child with a disability in the 6-15 years age group, with approximately six families reporting two or more children with disabilities (though not in the same age range)

Altered cervical posture kinematics imposed by heavy school backpack loading: A literature synopsis (2009–2019)

ELLAPEN, Terry J
PAUL, Yvonne
HAMMILL, Henriëtte V
SWANEPOEL, Mariëtte
2021

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Background: Habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception.

 

Objective: Present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function.

 

Method: An electronic literature appraisal adopting the Preferred Reporting Items for Systematic Reviews, using Google Scholar, Science Direct, EMBASE, AMED, OVID, PubMed and Sabinet search engines, was instituted during 2009–2019. Key search words: schoolbag, backpack, carriage, cervical posture and children. The quality of the studies was assessed using the Downs and Black Appraisal Scale.

 

Results: 583 records were initially identified which was reduced to 14 experimental and observational studies. A total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. The studies mean rating according to the Downs and Black Appraisal Scale was 76.3%. The average craniovertebral angle (CVA) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). Backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean CVA decline of 3.5°.

 

Conclusion: Backpack carriage alters cervical posture, resulting in smaller CVA and compromised pulmonary function. There is no consensus of the precise backpack mass that initiates postural changes. Girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata.

The impact of COVID-19 measures on children with disabilities and their families in Uganda

MBAZZI, Femke Bannink
NALUGYA, Ruth
KAWESA, Elizabeth
NIMUSIIMA, Claire
KING, Rachel
VAN HOVE, Geert
SEELEY, Janet
2021

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To understand the impact of the COVID-19 public health response on families of children with disabilities in Central Uganda we conducted phone interviews with parents and children during the first 5 months of the outbreak (March - July 2020). Most parents and children were well informed about COVID-19 and were keen to adhere to government prevention measures. The majority said lock-down measures had a negative effect on their mental and physical health, social life, finances, education and food security. Access to medical services and medication for chronic illness had been limited or absent due to restrictions in travel, some facilities restricting access, and limited financial resources. The majority of parents reported loss of work which resulted in difficulties in finding enough food and paying rent. Parents worried about children missing education and friends. We suggest greater attention to children with disabilities and their families when implementing mitigating and long-term responses.

Life Accomplishment, Social Functioning and Participation of South-Eastern Nigerians with Lower Limb Amputation

Akosile, Olusanjo Christopher
Okonkwo, Arinze Christian
Maruf, Adesina Fatai
Okoye, Chiebuka Emmanuel
2020

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Purpose: For a better understanding of the possible impact of impairments and disabilities on the life of individuals with lower limb amputation,it is important to explore the levels of Life Accomplishment (LA), Social Functioning and Participation (SFP) among them.The present study, set in South-Eastern Nigeria, aimed to study these levels and the influence of selected clinical and demographic variables on these constructs.

 

Method: This cross-sectional survey involved 60 individuals with lower limb amputation (46 unilateral, 14 bilateral) recruited from all the five South-Eastern Nigerian States. The Social Functioning Questionnaire (SFQ), Participation Scale and Life Habit Questionnaire were used for measuring levels of social functioning, social participation and life accomplishment, respectively. Data was analysed using descriptive statistics of frequency count, percentages, mean and standard deviation. Mann-Whitney U and Kruskal-Wallis tests were used to test the hypotheses. Alpha level was set at 0.05.

 

Results: Most of the participants (51.7%-58.3%) had low levels of social functioning across SFQ domains. Most of them (61.7%) had severe participation restrictions, and they all had reduced life accomplishments. Participants with bilateral amputation had poorer levels of social functioning (P<0.0001), participation restriction (P<0.0001), and life habits accomplishment (P<0.0001) than their counterparts with unilateral amputation. Individuals with below-knee amputation had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with above-knee amputation. Participants with prosthetic mobility aids had significantly better levels of social functioning (P<0.0001) and participation (P<0.0001) than those with no prosthetic mobility aids. There was no significant difference in the levels of social functioning and participation between male and female participants, but female participants had statistically significant (P<0.0001) higher scores in nine out of twelve life habit domains than their male counterparts.

 

Conclusion and Implications: Low social functioning, severe participation restrictions, and reduced life accomplishments were prevalent among individuals with lower limb amputation, particularly amongthose with bilateral and above- knee amputations. There is a need to routinely evaluate the studied constructs among individuals with lower limb amputation. The provision of prosthetic aids may help to improve their levels of life accomplishment, social functioning and participation.

A rapid assessment of the status of children with disabilities in Somalia

WAITHIRA MGUBUA, Jane
September 2020

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The main objective of this assessment was to explore the barriers faced by children with disabilities in the cities of Mogadishu, Galkaio, Baidoa and Kismaio in Somalia and assess how different stakeholders have sought to address these barriers. The findings of the Assessment are intended to serve as a limited baseline data to inform future programming in the area, both by the government and its local and international partners.

The Assessment used a mixed-methods approach, combining qualitative and quantitative research methods. The Assessment team interviewed 20 key informants, held four focus group discussions (FGDs) with 48 support persons and another four FGDs with 48 children with disabilities. The quantitative survey covered 100 support persons.

Development of self-help groups for caregivers of children with disabilities in Kilifi, Kenya: Process evaluation

GONA, Joseph K.
NEWTON, Charles
HARTLEY, Sally
BUNNING, Karen
July 2020

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Background: Caring for a child with disabilities in a resource-poor setting brings many challenges to the caregiver. We examined the development of self-help groups for caregivers in a rural part of Kenya.

 

Objectives: To conduct a process evaluation on the development of self-help groups during a 10-month set-up period, focusing on implementation and mechanisms associated with their functional status.

 

Methods: Using a realist evaluation design, we set up 20 self-help groups for 254 caregivers. An evaluation was conducted to investigate implementation and mechanisms of impact. Implementation focused on caregiver registration, community group support and monitoring visit compliance. Data were collected from group registers, records of meetings and field notes. Mechanisms of impact employed a framework of strengths–weaknesses–opportunities–threats to review the groups at the end of the 10-month set-up period.

 

Results: Recruitment resulted in registration of 254 participants to 18 groups – two groups disbanded early. Post-evaluation included 11 active and 7 inactive groups. Compliance with the monitoring visits was consistent across the active groups. All groups engaged in ‘merry-go-round’ activities. The active groups were characterised by strong leadership and at least one successful income generation project; the inactive had inconsistent leadership and had dishonest behaviour both within the group and/or externally in the community. Mediators associated with functional status included the following: available literacy and numeracy skills, regular meetings with consistent attendance by the members, viable income generating projects, geographical proximity of membership and strong leadership for managing threats.

 

Conclusion: Self-help groups have the potential to progress in resource-poor settings. However, critical to group progression are literacy and numeracy skills amongst the members, their geographical proximity, regular meetings of the group, viable income generating projects and strong leadership.

 

 

African Journal of Disability, Vol 9, 2020

Including parents in inclusive practice: Supporting students with disabilities in higher education

DUMA, Princess T.
SHAWA, Lester B.
October 2019

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Background: While a number of research studies have endeavoured to understand students with disabilities’ experience in higher education and have recommended ways to effectively support student success, the role of parental support has been neglected. Many studies have been hampered by a limited understanding of students with disabilities and have, in particular, underestimated students’ ‘access to economic, social and cultural forms of capital’ that caring parents provide.

 

Objectives: This article seeks to explore students with disabilities’ experiences of parental support in the South African higher education context. The research question guiding this article is: What forms of economic, social and cultural capital do parents and extended families provide to students with disabilities to enable them to succeed in higher education?

 

Method: In-depth semi-structured individual and focus group interviews were conducted with 17 students with disabilities at two universities of technology. The interview transcripts were thematically analysed with a view to understanding Pierre Bourdieu’s forms of capital that parents provided.

 

Results: The study found that while parents are not always able to provide material support, they offered rich and varied forms of social and cultural capital that enabled students with disabilities’ academic success.

 

Conclusion: Given that parental support plays an important role in the success of students with disabilities, and this role changes as these students become more independent, this study recommends the need for universities to also pay more attention to involving parents in the education of the former. It is hoped that putting in place appropriate forms of parental involvement can create a conducive environment for universities to provide inclusive education holistically.

 

 

African Journal of Disability, Vol 8, 2019

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

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

Adapting and pre-testing the World Health Organization’s Caregiver Skills Training programme for autism and other developmental disorders in a very low-resource setting: Findings from Ethiopia

TEKOLA, Bethelem
et al
May 2019

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The World Health Organization’s Caregiver Skills Training programme for children with developmental disorders or delays teaches caregivers strategies to help them support their child’s development. Ethiopia has a severe lack of services for children with developmental disorders or delays. This study explored the perspectives of Ethiopian caregivers, professionals and other stakeholders to inform adaptation and implementation of the World Health Organization’s Caregiver Skills Training in Ethiopia. Data collection included (1) a consultation and review, comprising stakeholder meetings, review of draft Caregiver Skills Training materials and feedback from Ethiopian Master Trainees and (2) a pre-pilot including quantitative feasibility and acceptability measures and qualitative interviews with caregivers (n = 9) and programme facilitators/observers (n = 5).

 

Autism 2020, Vol. 24(1) 51–63

https://doi.org/10.1177/1362361319848532

Family-based activity settings of children in a low-income African context

BALTON, Sadna
UYS, Kitty
ALANT, Erna
2019

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Background: There has been an overwhelming call to improve the understanding of how children develop within an African context as Euro-American definitions of competence have been uncritically adopted as the norm for children in Africa. The activities that children engage in within the family setting are seen as important to understand how children develop within context. The use of activity settings is closely aligned with a strengths-based perspective of family-centred practice and contributes to improved sustainability of intervention.

 

Objectives: This study that was conducted in Soweto, South Africa, aims to describe activity settings that typically developing young children in low-income African contexts participate in.

 

Method: A descriptive design using structured interviews was utilised to obtain information about activity settings that children aged 3–5 years and 11 months engaged in. Structured interviews with 90 caregivers were conducted.

 

Results: Findings show that children participate in a variety of activities with varied participation levels. The types of activities are dependent on the context and perceptions of caregivers.

 

Conclusion: These findings draw attention to understanding activities that children engage in within the family context.

 

African Journal of Disability, Vol 8, 2019

Views from the borderline: Extracts from my life as a coloured child of deaf adults, growing up in apartheid South Africa

HARRISON, Jane
WATERMEYER, Brian
2019

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Background: Over 90% of Deaf parents have hearing children, but there are very few, if any, studies that have explored the life worlds of hearing children of Deaf adults (CODAs) in South Africa. This article is an account of part of the life experiences of a female hearing child who was born and raised by her Deaf parents in apartheid South Africa in the 1980s.

 

Objectives: This study used auto-ethnography to explore the socialisation of a female coloured CODA during the height of South Africa’s apartheid era, in order to shed light on intersectional influences on identity and selfhood. The study was intended to contribute to the limited knowledge available on the life circumstances of CODAs in Global South contexts.

 

Methods: Evocative auto-ethnography under a qualitative research paradigm was used to explore the life world of a now adult female hearing child of Deaf parents. Her thoughts, observations, reflections and involvements are articulated in a first person written narrative that is presented in this article. A thematic analysis approach was used to analyse data, and the themes that emerged are: (1) CODAs as language brokers, (2) being bilingual and trilingual, (3) being bicultural, (4) role reversal and parentification and (5) issues of identity. A discussion of these themes is interwoven with the literature, in an effort to provide a rich and robust analysis that contributes to the body of knowledge.

 

Results: Multiple identity markers that include disability, gender, race, age, nationality, culture and language intersect to frame the life world of a hearing child of Deaf parents who grew up in the apartheid era in South Africa. The result is both positive and negative life experiences, arising from being located simultaneously in both a hearing and Deaf world.

 

Conclusion: This study suggests that, in part, the life world of a hearing child of Deaf parents is multi-layered, multidimensional and complex; hence, it cannot be presented with a single description. Recommendations that inform policy and practice are outlined in the concluding section of the article.

 

 

African Journal of Disability, Vol 8, 2019

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Disability and unpaid care work

CBM AUSTRALIA
2019

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This report looks at the impact of unpaid care work on disability inclusive programming and shares some practical ideas for how to address this based on experiences of CBM partners and other agencies. 

 

Programme experience discussed include:

  • Building agency and relationships: a community mobilisation approach in Jharkhand, India
  • Engaging men as care advocates in the Phillipines
  • Recognising and supporting care givers in Ghana
  • Good practice

 

Perceptions of primary caregivers about causes and risk factors of cerebral palsy in Ashanti Region, Ghana

KYEI, Ernest Appiah
DOGBE, Joslin
2019

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Purpose: Cerebral palsy (CP) is the most common chronic childhood disability, but in most cases the primary causes are largely unknown. The study sought to determine the perceptions about the causes and risk factors of CP among primary caregivers of children with CP in the Ashanti region of Ghana.

 

Method: A descriptive study design with a quantitative approach was used. A simple random sampling technique was adopted to select 100 participants from among the primary caregivers whose children with CP were attending the physiotherapy unit of the Komfo Anokye Teaching Hospital in Ashanti region.  A structured questionnaire was administered to the respondents and data were analysed using SPSS version 21.0.

 

Results: CP was perceived as a disease caused by witchcraft (40%), punishment from God or Gods (12%), or by being cursed (10%). More than half (54%) of the respondents did not know of any risk factor for CP.

 

Conclusion and Implications: The perceived negative causes, as well as ignorance about the risk factors for CP, could result in primary caregivers stopping their children with CP from availing of the physiotherapy services. Public education and campaigns should focus on the causes and risk factors for CP, in order to change negative perceptions and improve awareness among the general public.

‘We create our own small world’: daily realities of mothers of disabled children in a South African urban settlement

VAN DER MARK, Elise J
CONRADIE, Ina
DEDDING, Christine W M
BROERSE, Jacqueline E W
2018

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Parents of disabled children face many challenges. Understanding their experiences and acknowledging contextual influences is vital in developing intervention strategies that fit their daily realities. However, studies of parents from a resource-poor context are particularly scarce. This ethnographic study with 30 mothers from a South African township (15 semi-structured interviews and 24 participatory group sessions) unearths how mothers care on their own, in an isolated manner. The complexity of low living standards, being poorly supported by care structures and networks, believing in being the best carer, distrusting others due to a violent context, and resigning towards life shape and are shaped by this solitary care responsibility. For disability inclusive development to be successful, programmes should support mothers by sharing the care responsibility taking into account the isolated nature of mothers’ lives and the impact of poverty. This can provide room for these mothers to increase the well-being of themselves and their children.

Perceptions and satisfaction of caregivers regarding rehabilitation services from selected rehabilitation centres in the Western Cape

MLENZANA, Nondwe B.
EIDE, Arne H.
FRANTZ, Jose M.
2018

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Background: Understanding caregivers’ views on rehabilitation services is important as it may assist in informing healthcare services and patient management.

 

Objectives: The aim of this study was to explore caregivers’ perceptions and satisfaction regarding rehabilitation services in the Western Cape, South Africa, and to inform clinical practice and policy in this emerging field.

 

Method: This study used a descriptive, qualitative design using in-depth interviews with conveniently selected participants. Interviews were conducted with 13 caregivers of patients with: amputations (3), cerebrovascular accidents (5) and neuromuscular disorders (5). Thematic content analysis was conducted with the transcripts.

 

Results: Four key themes emerged, which were (1) financial difficulties, (2) caregiver and therapist relationships, (3) facility management and (4) caregiver experience with service delivery.

 

Conclusion: Based on the participants’ feedback, the rehabilitation services seem to be meeting the basic rehabilitation needs of the patients; however, the needs of the caregivers require attention.

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