Family Perspectives on Long-Term Care Facility Selection and Quality Monitoring for Older Adults in an Emerging Ageing Region of Malaysia: A Qualitative Study

As the world ages, the question of how to care for older adults who can no longer live independently has moved from a private family worry to a global challenge. In many parts of Asia, including Malaysia, the traditional expectation is that children will care for their aging parents at home. This duty, often rooted in deep cultural values of respect and obligation, has long been the primary safety net for the elderly. However, as populations grow older and families become smaller or busier, this home-based model is increasingly strained. When a parent becomes too sick or frail to manage alone, and professional help at home is unavailable or unaffordable, families face a difficult crossroads. They must decide whether to keep struggling at home or to place their loved one in a residential care facility. In regions where government oversight of these facilities is still developing, the burden of ensuring safety and quality often falls entirely on the family members who make the choice to move their relative in.

A recent study conducted in Kuching, Sarawak, offers a clear look at what happens when families are forced to navigate this unregulated landscape. Sarawak is on track to become an "ageing state" before the rest of Malaysia, meaning a larger share of its population will be over sixty-five years old sooner than expected. Researchers interviewed eight family members who had placed relatives in private care homes in the city. These were not casual conversations; the researchers asked deep, open-ended questions about why they chose to move their loved ones, how they picked a specific building, and what their experience was like after the move. The goal was to understand the real-life journey of families who are effectively acting as the only quality control for a system that lacks formal rules.

The story that emerged from these interviews was one of necessity rather than choice. None of the families had planned to move their relatives into a facility as a first option. Instead, they described reaching a breaking point where caring for their loved one at home became physically impossible. One daughter, who was herself recovering from cancer, described the sheer physical effort required to lift her mother from a bed to a wheelchair, a task that became too much for one person to handle alone. For others, the challenge was medical complexity; managing conditions like stroke, dementia, or severe wounds required skills and equipment that domestic helpers or family members simply did not possess. With no community nursing services available to help at home, and no day-care centers to offer a break, moving a relative into a care home became the only remaining path. It was not a decision made lightly, but a structural inevitability forced by a lack of support systems.

Once the decision to move was made, the families faced the daunting task of choosing a place. The researchers found that families did not use a single set of rules for everyone; instead, their priorities shifted depending on how sick their relative was. For families with relatives who were bedridden or required constant medical attention, the most important factor was the facility's medical capability. They needed to know that the home had oxygen tanks, suction machines, and a doctor who could visit. If a place lacked these tools, it was not even considered, no matter how nice the building looked. For families with relatives who could still walk around, the priorities were different. They cared more about the cleanliness of the rooms, the amount of space available, and the attitude of the staff. In both cases, however, families relied almost entirely on word-of-mouth to find these places. There were no official guides, no star-rating systems, and no government directories to help them compare options. They had to trust their friends, neighbors, or personal networks to find a safe place.

The most troubling part of the story began after the move. While the families hoped that moving their relative into a facility would relieve their burden, they often found that the responsibility simply changed form. Many families reported that their trust in the facility eroded over time. They described staff who seemed more focused on finishing their shifts than on the well-being of the residents, leading to issues like pressure sores from not being turned over frequently enough. When families tried to raise concerns, they often met with silence or defensiveness from management. A pervasive fear emerged: if they complained, the staff might neglect their relative in retaliation. This fear was so strong that many families chose to stay silent, even when they saw problems. Instead of relying on the facility to monitor quality, the families took it upon themselves to become inspectors. They checked wounds, counted food portions, and watched the staff closely every time they visited, effectively doing the work of a quality assurance team without any official authority or protection.

The study suggests that in the absence of strong government regulation, families are forced to become the de facto regulators of care. They make the hard choices, pay the bills, and monitor the quality, all while fearing that speaking up could hurt their loved one. The researchers point out that this system is fragile. It works only as long as a family has the time, money, and medical knowledge to watch over their relative. For those without these resources, the risk of poor care is much higher. The findings indicate that to fix this, the system needs to change at three levels. First, more support needs to be given to families to keep people at home longer, so moving to a facility is not the only option. Second, there needs to be a clear way to classify and rate facilities based on the level of medical care they can provide, so families can make informed choices without relying on rumors. Finally, there must be a safe way for families to report problems without fear of retaliation, ensuring that the responsibility for quality care rests with the institutions, not just the worried families. As Sarawak and similar regions continue to age, these lessons highlight the urgent need to build a system where families are partners in care, rather than the only line of defense.