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Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia.

ABSTRACT: Accessibility to healthcare and rehabilitation services for children with a disability (CWD) is essential to improving their health and wellbeing. However, access to the services, especially in many settings in developing countries with scarcity of resources, is still limited. As part of a qualitative study exploring impacts of caring for CWD on mothers or female caregivers and their coping strategies, this paper describes barriers for access to healthcare and rehabilitation services for CWD in Belu district, Indonesia. One-on-one, in-depth interviews were conducted with 22 mothers or female caregivers of CWD. Participants were recruited using a combination of purposive and snowball sampling techniques. These were supplemented with interviews with two staff of disability rehabilitation centers in Belu to understand any additional barriers. Data analysis was guided by a qualitative data analysis framework. Our analysis identified that lack of affordability of healthcare services (high costs and low financial capacity of mothers) was the key barrier for access to healthcare and rehabilitation services CWD. Religious or faith-based factors, such as being a non-Catholic (Belu is predominantly Catholic), converting from Catholic to other religions, and the belief in children's disability condition as "God's will", were also influencing factors for lack of access to the services. Shortage of staff, distrust in the therapy skills of staff at rehabilitation centers, and unavailability of appropriately trained healthcare professionals were structural or system-related barriers. The findings indicate the need for government-owned and run disability rehabilitation centers (not faith-based), the provision of fully subsidised health insurance to provide free services, and the provision of qualified therapists and healthcare professionals (to build trust) in Belu and other similar settings in Indonesia.

SUBMITTER: Asa GA

PROVIDER: S-EPMC8583444 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Caring for children with a disability can cause a range of psychological and socioeconomic challenges for parents and caregivers, such as anxiety, depression, inability to find affordable and appropriate childcare, loss of income and expenses related to disability specific treatment. As part of a study exploring the impacts of childhood disability on mothers or female caregivers and families, and the copy strategies they used, this paper describes strategies employed by mothers or female caregivers to cope with challenges associated with childhood disability within their family in Belu district, Indonesia. A qualitative approach using one-on-one in-depth interviews was used to collect data from participants (n = 22) who were recruited using a combination of purposive and snowball sampling techniques. Interviews were recorded, transcribed verbatim and imported to NVivo 12 for analysis. A qualitative framework analysis was used to guide data analysis. The conceptual framework of coping strategies guided the conceptualisation and discussion of the findings. The findings showed that active psychological coping strategies, including cognitive or acceptance strategies, knowledge of both health condition and socio-academic related development of children with a disability, and family relationship and support, were used by the participants to cope with psychological challenges facing them. Self-reliance and religious/spiritual coping strategies were also utilised. Sociocultural strategies, such as social withdrawal or disengagement, professional support and culture-based support, were used by the participants to cope with social impacts, stigma, and discrimination associated with childhood disability. Participants also reported using financial strategies such as selling of family assets to cope with the economic challenges. The findings indicate the need for programs and interventions that address the needs of mothers and female caregivers and their families, to assist with effectively managing the significant challenges they face when caring for a child with a disability. Further studies are needed, with a larger number of participants and the inclusion of fathers or male caregivers, in order to better understand the broader coping experience of childhood disability impacts within families.

Project description:BACKGROUND:Malaysia is widely credited to have achieved universal health coverage for citizens. However, the accessibility of healthcare services to migrant workers is questionable. Recently, medical fees for foreigners at public facilities were substantially increased. Mandatory health insurance only covers public hospital admissions and excludes undocumented migrants. This study explores barriers to healthcare access faced by documented and undocumented migrant workers in Malaysia. METHODS:We use qualitative data from 17 in-depth interviews conducted with key informants from civil society organisations, trade unions, academia, medical professionals, as well as migrant workers and their representatives. We interviewed doctors working in public hospitals and private clinics frequented by migrants. Data were analysed using thematic analysis. RESULTS:We found that healthcare services in Malaysia are often inaccessible to migrant workers. Complex access barriers were identified, many beyond the control of the health sector. Major themes include affordability and financial constraints, the need for legal documents like valid passports and work permits, language barriers, discrimination and xenophobia, physical inaccessibility and employer-related barriers. Our study suggests that government mandated insurance for migrant workers is insufficient in view of the recent increase in medical fees. The perceived close working relationship between the ministries of health and immigration effectively excludes undocumented migrants from access to public healthcare facilities. Language barriers may affect the quality of care received by migrant workers, by inadvertently resulting in medical errors, while preventing them from giving truly informed consent. CONCLUSIONS:We propose instituting migrant-friendly health services at public facilities. We also suggest implementing a comprehensive health insurance to enable healthcare access and financial risk protection for all migrant workers. Non-health sector solutions include the formation of a multi-stakeholder migration management body towards a comprehensive national policy on labour migration which includes health.

Project description:ObjectiveTo explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment.DesignA qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers' lived experiences.SettingParticipants were from rural areas attending a metropolitan cancer centre in Australia and social workers.Participants21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100?km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers.ResultsThematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: 'Rural community and culture', 'Life adjustments' and 'Available supports'. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: 'Travel', 'Accommodation' and 'Health system navigation'.ConclusionsCaregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.

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Understanding Barriers to the Access to Healthcare and Rehabilitation Services: A Qualitative Study with Mothers or Female Caregivers of Children with a Disability in Indonesia.

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