For years, families caring for people with disabilities in Sedayu District, Bantul, Yogyakarta, have gone about their daily lives quietly. They wake up earlier, go to bed later, and rarely have time to check their own health. When a community service team from Universitas Gadjah Mada visited Rumah Kebugaran Difabel Pinilih in 2023, what they found was quite alarming: of the 19 family members of people with disabilities who underwent examination, 12 had high blood pressure, and all respondents who completed the mental health questionnaire scored above the threshold for the risk of mental health disorders. Yet none of them appeared to complain.
The community service program, led by dr. Dyah Listyarifah, M.Sc., D.Med.Sci., from the Department of Biomedical Sciences of Dentistry, FKG UGM, targeted people with disabilities and their families in Sedayu, Bantul, a district that recorded 498 people with disabilities in 2020. The program involved an interdisciplinary team from the Master's Program in Biomedical Engineering, Graduate School, UGM, and was funded through a 2023 UGM Graduate School Community Service Grant.
Stiff Muscles, Families Learning to Stretch
Most people with disabilities who visit Rumah Kebugaran Difabel Pinilih experience movement disorders. Some live with cerebral palsy, some experience lower back pain due to herniated nucleus pulposus, while others have flaccid paralysis resulting from polio. These conditions require regular muscle-stretching therapy to prevent further deterioration of motor function.
The problem is that this type of therapy can generally only be performed when volunteer physiotherapists are available or when people with disabilities are able to access medical rehabilitation facilities. Cost, distance, and limited transportation have become barriers that are difficult to overcome.
The community service team therefore adopted a different approach: directly training family members. In August and October 2023, therapy and training sessions were held for 30 to 45 minutes per patient. Families were provided with leaflets, video guides, and direct demonstrations of safe stretching exercises. Evaluation in October showed that families and people with disabilities had begun practicing the exercises at home, although the frequency remained inconsistent because of work commitments.
“Muscle-stretching training for families of people with disabilities improves continuity in maintaining and enhancing their muscle function, because the exercises can be performed more intensively at home with family assistance.” — dr. Dyah Listyarifah, M.Sc., D.Med.Sci., and research team
Numbers Without Symptoms, but Impossible to Ignore
Of the 46 participants who underwent comprehensive health examinations, 25 had high blood pressure, 14 had above-normal cholesterol levels (hypercholesterolemia), and 22 had hyperuricemia, or elevated uric acid levels. The participants' average blood glucose level was 132 mg/dL, with the highest value reaching 349 mg/dL.
What makes these findings even more important is that none of the participants reported significant symptoms. They arrived feeling perfectly fine, but the numbers on their examination results told a different story. Some participants even acknowledged that they had already been prescribed medication for blood pressure or blood glucose, but did not take it regularly because the community health center (puskesmas) felt too far away.
Asymptomatic conditions like these can be particularly dangerous. Untreated high blood pressure can lead to stroke or heart attack. Persistent hyperglycemia can progress to diabetes mellitus, with complications ranging from neuropathy to blindness.
Scores That Speak Louder Than Complaints
The mental health findings were no less concerning. Using the General Health Questionnaire-12 (GHQ-12), all 14 respondents from the family group scored above 12, the threshold indicating a risk of mental health problems. The average individual score was 19.57 out of a maximum of 36.
The Health Utilities Index Mark 3 (HUI3) also detected a considerable decline in general health. Of the eight variables measured, the sharpest declines were observed in memory, vision, speech, mobility, dexterity, and pain.
Two major factors help explain this burden. First, caring for a family member with a disability requires major adjustments to social and professional life. Second, disability often carries long-term financial consequences: expenses increase while income decreases. The combination creates psychological pressure that, if not recognized and addressed, can develop into chronic depression and anxiety.
Support Cannot Stop at a Single Point
The findings from Sedayu emphasize something that is often overlooked: within the disability care ecosystem, the health of family caregivers is just as important as the health of the person with the disability. When the physical and mental condition of family caregivers declines, the quality of care they provide is also affected.
This program demonstrated that simple interventions such as muscle-stretching training and scheduled health screening can open a window that has long remained closed. However, one or two visits are not enough. The research team emphasized the need for sustained support from multiple stakeholders, ranging from academics and local governments to local healthcare facilities.
At Rumah Kebugaran Difabel Pinilih, mothers who have spent years focusing on caring for their family members now know that their own bodies and minds also need care. One question remains: who will make sure they do not have to walk this path alone again?
Authors: Achmad Zam Zam Aghasy, DDS, M.Kes.; Hazra Alifia Muharam
Photo: Freepik
DOI Source: https://doi.org/10.1186/s13033-020-00397-0