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
2.1. Theoretical Framework
2.2. Study Setting
2.3. Study Design, Recruitment of Participants, and Data Collection
2.4. Data Analysis
2.5. Ethical Consideration
3.1. Sociodemographic Profile of the Participants
3.2. Financial Barriers
“I reduced the length of physical therapy from 2 h every three days to 1 h every three days because it was expensive ($12 per hour), and I could not afford it (the mother and her child accessed the therapy in Surabaya, not in rehabilitation services in Belu). Now, you know, I do not take my son (with a disability) to any therapist anymore. I just look after him. I do not want to buy herbal medicines, which are expensive, from Java or Bali”(R11: 39-year-old mother).
“I usually kept silent anytime the doctor or nurses recommended my son (with a disability) to be taken to Kupang or Java. My mind goes straight to money anytime they said these places. To be honest, my husband and I could not afford travel, accommodation, and to buy recommended medicines. Most of the cases, I stopped visiting the doctor and stopped buying recommended medicines”(R17: 48-year-old mother).
“Having private insurance means we have to pay every month. To be honest, we cannot afford it, as my husband’s income is for daily expenses, and I am just a housewife with no income. One of my neighbours told me that the monthly health insurance fee of BPJS (Health Care and Social Security Agency) is approximately IDR 5000–100,000 ($4–$8,) which sounds cheap, but it is still expensive for my family. Anytime people suggest me to have health insurance for my son (with a disability), I said it is expensive for us. We are four in this house, and how can we afford?”(R5: 42-year-old mother).
“I was once told by the doctor about BPJS (health insurance), but I could not afford the monthly fee, so I do not apply for it. I do not have income, that is why I hardly bring my granddaughter to hospital for medical check-up”(R1: 59-year-old grandmother caregiver).
“I never think about insurance. It is too expensive for us. I am a single mother of three kids; one of them has specific condition (living with a disability). I do not know where the kids’ father is. I do not regularly access healthcare services for my child (with a disability) because I do not have enough money. I cannot afford health insurance either, even just for the one with a disability. I work in the kitchen in a hotel. Sometimes I am a cleaner in the hotel. If I need to buy medicines, I ask for help from my boss, the owner of the hotel”(R17: 48-year-old mother).
“We (the woman and her husband) do not have monthly salary, and therefore, we do not have health insurance or do regular medical check-up and treatment for my child (with a disability). My husband’s salary as a carpenter is about IDR 100,000 to 150,000 (±$10 to 15) per day. But, you know, it depends on the calling (casual work) from his supervisor. It is not enough for daily living expenses. If the doctor or nurses said that certain medicines require insurance to be able to access them for free, then I just go back home”(R1: 46-year-old mother).
“I know for sure that most parents or caregivers of children with a disability have low economic status. Most of them do not have permanent income and rely on casual work, which is uncertain, sometimes available, sometimes not. So, things like medical treatments or therapies and health insurance for their children with specific needs seem not the number one priority for many because they are struggling with daily basic needs. The children (with a disability) that we are taking care of in this rehabilitation centre are all from poor families who cannot take care of them properly”(staff member at a disability rehabilitation centre).
3.3. Religious or Faith-Related Factors
3.3.1. Converting Religion Due to Marriage and Being a Non-Catholic
“Previously, I was a Catholic, but then I converted to Muslim because my husband is a Muslim. I know quite well about the rehabilitation centre for children with a disability organised by Catholic nuns. However, you know, I am reluctant and feel embarrassed to take my son there because I am afraid if they ask what my religion is”(R8: 43-year-old mother).
“I know religion is not a matter for accessing rehabilitation services. I feel embarrassed to access because I have converted my religion due to marriage, and I follow my husband’s religion. My son is living with a disability, and I am supposed to take him to Catholic rehabilitation centre, but I am concerned with how people might think of me. I was afraid of neighbour’s cynical attitudes”(R13: 47-year-old mother).
“The majority population here is Catholic, and I know there are rehabilitation centers for children with a disability managed by Catholic nuns. I am a Christian (Protestant denomination), I never visited those rehabilitation centers because I think they just serve Catholic people”(R13: 47-year-old mother).
3.3.2. Unacceptability of Services for Religious Reasons
“One day, I talked about the Catholic rehabilitation centers to my husband before we decided to take my son to Surabaya. He (the husband) looked unhappy. I could see from his face that I knew he did not want”(R8: 43-year-old mother).
“It is not easy to convince my husband to take my son (with a disability) to any Catholic rehabilitation centers. He (her husband) thinks if I often visit the rehabilitation centers, my son will become a Catholic”(R19: 45-year-old mother).
“It is clear that non-Catholic parents do not send their children (CWD) to us (to be taken care of at the rehabilitation centre). I think the main reasons are because this rehabilitation centre is run by Catholic nuns, and here, we also teach the children how to pray and pray together as parts of our daily activities. Non-Catholic parents may be concerned with these things, which makes sense…”(a staff member at a disability rehabilitation centre).
3.3.3. Beliefs in God’s Will
“My son has cognitive problem. That’s what the doctor said to me. I do not think my son needs therapy to help him be smarter than he is at the moment. I am happy as long as he is healthy. I do not want to force him to be smart. I believe maybe God wants him to be like he is today”(R16: 49-year-old mother).
“I believe that everything happens for a reason and God’s permission. My faith tells me that God has a plan for everybody, and I believe God has a plan for my daughter and our family through her condition. So, I do not want to think too much about treatment or therapy for her condition…”(R20, 39-year-old mother).
3.4. Structural or System Related Barriers
3.4.1. Shortage of Staff at Rehabilitation Centers and Lack of Trust
“I know from my neighbours that the rehabilitation centers for children with a disability are free. However, the Catholic nuns serve and care for many children with a disability. If I took my daughter (with a disability) there, it might add more workload for the nuns”(R4: 50-year-old mother).
“I once asked people (volunteer workers) at the disability rehabilitation centers, and I was told that the rehabilitation centers find it difficult to get people to be trained as therapists”(R15: 52-year-old mother).
“I doubt the skills of the therapists in the rehabilitation centers here. I watched on TV many children (with a disability) died due to malpractice therapy. I do not want my son (with a disability) getting the same experience; otherwise, his condition might get even worse”(R15: 52-year-old mother).
“I know the disability rehabilitation centers have a sincere heart to help children with a disability. However, to be a therapist, someone needs to have a certified training. If they do not have a certificate that allows them to do the therapy, then I still doubt, and I do not put my daughter at risk”(R7: 49-year-old mother).
“We are taking care of tens of children in this rehabilitation centre, and for sure, we have very limited staff. We always try to do our best with very limited available resources to help the children because this is our mission. A few nuns here dedicate themselves to help the children”(a staff member at a disability rehabilitation centre).
3.4.2. Unavailability of Specialists Trained in Treating Different Types of Disabilities
“I once asked the doctor whether there is any specialist in autism in our district, and the doctor said no. He (general practitioner) just recommended me to go to Java to do therapy for my child with a disability”(R17: 48-year-old mother).
“My nephew has walking difficulty. I never take him to a specialist because I think there is no specialist here. There are many nurses or health workers but not for disability issues. Here, having a child with a disability means you have to help yourself, as there are no healthcare professionals or health workers who are specialised in any disability conditions”(R2: 48-year-old female caregiver/aunty).
3.5. Low Perceived Need for Health Care or Treatment for CWD
“My son has a problem with thinking, attention, and memory. He does not need a teacher or a therapist to teach or train him be good academically”(R16: 49-year-old mother).
“My neighbours encouraged me to take my daughter who cannot speak to therapists, but I said no because what my daughter needs is understanding. I and also other people around her just need to understand her. That is what she needs, and I do not think she needs therapists to be able to speak”(R3: 43-year-old mother).
“Sometimes my husband and I felt bored whenever we visited general practitioners. My son has a hearing impairment. I think general practitioners treat my child like a normal child. But anyway, we cannot do anything. We cannot expect more than that, as there is no specialist in our district. Sometimes, I feel that it is useless to consult general practitioners or nurses”(R11: 39-year-old mother).
“As I said before, I do not know much about the services at the rehabilitation centers of the Catholic nuns. I heard information about these rehabilitation centers, but it is just mouth-to-mouth information from friends and families because they know that my child has special needs. I do not hear it from the nuns; that is why, like I said earlier, I do not even know that they also serve kids who are not Catholic”(R13: 47-year-old mother).
“We do not carry out seminars or information sessions for communities; I am not sure about the reasons why. I guess budget and limited number of staff we have might also be the reasons… I am not sure whether there are people who do not know about the services provided by this congregation”(a staff member at a disability rehabilitation centre).
Study Limitations and Strengths
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
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|Type of Disability||Number of Children||Age Range (Years)|
|Mental and physical impairment||4||10–16|
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Asa, G.A.; Fauk, N.K.; Mwanri, L.; Ward, P.R. 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. Int. J. Environ. Res. Public Health 2021, 18, 11546. https://doi.org/10.3390/ijerph182111546
Asa GA, Fauk NK, Mwanri L, Ward PR. 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. International Journal of Environmental Research and Public Health. 2021; 18(21):11546. https://doi.org/10.3390/ijerph182111546Chicago/Turabian Style
Asa, Gregorius Abanit, Nelsensius Klau Fauk, Lillian Mwanri, and Paul Russell Ward. 2021. "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" International Journal of Environmental Research and Public Health 18, no. 21: 11546. https://doi.org/10.3390/ijerph182111546