The Invisible Patient: Experiencing the Caregiver Burden as a Cambodian Woman
Savet, a silk weaver and mother of 4, spends a large portion of her day carrying out household chores and tending to her daughter’s needs. 16-year-old Leak, who was diagnosed with an autoimmune disease four years ago, can no longer walk due to the wounds on her feet, and struggles having lost most of her fingers. As a result, Leak no longer goes to school, as her family regularly has to take her to and from the hospital in Phnom Penh, a ferry and long tuk-tuk drive away from their home on Koh Dach. Sitting on a platform outside of her house and descaling fish for her family’s next meal, Savet repeatedly made jokes about how things might be different. Savet is blunt yet humble, as she expresses her deep devotion to her daughter’s health and happiness, but it is clear the strain that Leak’s disability is having on the entire household. Leak also shared her own feelings of guilt:
“[My mother] likes her work, but I cannot help her, so my mom has a lot of responsibilities. Sometimes my mom can’t take care of my legs and they swell up and she always sits and cries alone and she never lets anyone see.”
Leak’s poignant yet powerful expression of her relationship with her mother uncovers an underrepresented issue in disability care. The caregiver burden is the strain put on the person who cares for a chronically ill, disabled, or elderly family member. As the “invisible patient,” the caregiver’s wellbeing is often forgotten or neglected in the process of care. Women and mothers often take on the role of caregiver for their disabled or chronically ill child and face a substantial burden due to the intersection of gender norms, poverty, and social stigma. The “caregiver burden” can encompass the physical, psychological, emotional, social, and financial stressors that manifest because of providing care. For families living in poverty in Cambodia, living with a disabled person is a multidimensional experience impacting the quality of life, mental, and physical wellbeing of the entire household.
Physical and Time Burden
Being the caregiver of a disabled family member takes a huge physical toll. A child’s lack of mobility can lead to caregivers moving them, cleaning them, feeding them, and playing with them to a greater extent than a non-disabled child. Having to perform household chores on top of this, while caring for other family members, leads to chronic distress that can worsen the physical health of the caregiver. In addition to this, mothers with disabled children have to compromise time spent with other family members and time working in order to provide proper care. The caregiver’s own health is often the last to be prioritized, as they don’t have time or mental energy to seek out care or medical help for themselves, nor allow themselves enough rest time, leading to the deterioration of their physical health.
Financial Burden
The challenges of balancing work and care, exacerbated by increased medical expenses for a disabled family member, can put an intense strain on a family’s finances, especially those living in poverty. Cost is a significant contributor to a family’s hesitancy to seek out medical help from professionals. In much of Cambodia, hospitals that claim to be “free” still expect monetary gifts paid to the doctors for their work. Furthermore, hospitals don’t provide food for the patients, so poor families are forced to buy expensive street food rather than cooking for themselves. For most families living in poverty, consistent professional healthcare is not an affordable option.
Lack of Awareness
Further hesitancy to seek out professional help is derived from a lack of awareness about the opportunities for treatment for the disabled family member. Families living in poverty are often forced to navigate the healthcare system themselves, as in Cambodia, there exists very few professional caregiving opportunities, GP referrals, support systems, or other social welfare infrastructure. Caregivers are not well informed on how to care for their child or how to weigh medical advice. Those who do seek out healthcare describe negative experiences, as they often face criticism regarding their treatment of the disabled. Families who have no choice but to seek out the lowest quality of care claim that the hospital system is not a gentle or caring environment that seldom benefits the patient. The inaccessibility of healthcare for families in poverty coupled with the lack of knowledge on proper treatment can create an intense burden on the caregiver.
Social Isolation
Leak describes her experience going out as a disabled person:
“Some people give me dirty looks and distance themselves from me because they discriminate against me. People say that I’m disabled so there’s no need to go out because it will be a burden to them. I try not to let those words get into my head, because I think it’s not good for me.”
Her mother experiences a similar feeling of exclusion and discrimination, as she is judged for having a child with a disability whilst she is simultaneously criticised for her caretaking. The amount of time spent caring for their disabled child makes socialising difficult for caregivers, and when they do, they are faced with a community that is unsympathetic to the responsibility of caregiving. Caregivers can even feel isolation from their own families, who do not take on shared responsibility for the disabled individual or who feel neglected by the caregiver. The deterioration of family and social relations as a consequence of disability care can leave a caregiver feeling incredibly isolated.
Psychological Burden
One of the most challenging aspects of being a caregiver is the emotional burden it carries. Caregivers may experience guilt, blame, or worry regarding the child’s condition and their ability to help them. A community will often put blame on the mothers for the birth of a disabled child, leading the caregivers to believe that they must have done something wrong during pregnancy or that they have failed as mothers. In Cambodia, having a disabled child can relate to the belief in karma, as disability is perceived as a consequence of wrongdoing in a previous life. Raksa, a young teenage girl who cares for her disabled mother, describes the toll that having a disability can have on the entire family’s emotional well-being,
“she got diabetes and became disabled. She had to have a leg amputated to survive […] She refused to give up her leg until her children encouraged her to. But after the surgery she’s at home and in a bad mood. She’s not the same. […] After she underwent surgery, she changed her behaviour. She has bad mood swings and has to have what she wants. So, my family is also having mental crises as a result. If she does not get what she wants, all children in the family also have mental health problems because we can’t please her.”
Caregivers, because of caring for a sick or disabled family member, are more likely to suffer from anxiety and depression, and less likely to receive treatment for it. As forgotten patients, their well-being comes after the well-being of their disabled family member.
Absence of Systems of Care and Ways to Improve
The ability for caregivers and their disabled family members to actively engage in their community and seek support is largely dependent on environmental factors. Lack of accessible public transport, flexible working hours, insufficient disability support, increased expenditures, and non-existent support groups become huge barriers to a caregiver’s ability to provide effective care, and thus can lead to a worsening of their own mental and physical health. This highlights the significance of social support in caregiving, as a community that does not understand the needs nor has the means to access support leaves caregivers and their disabled family members vulnerable to a lower quality of life. Public health systems have a responsibility to provide support systems and develop interventions to lessen the burden of caregiving to those who are most vulnerable. This should take into consideration the improvement of urban and rural planning and transport to make public spaces more accessible, providing more accessible pathways to seek out medical advice and professional care, and establishing caregiver support groups where caregivers can exchange notes, share information, and provide emotional support to one another.
Savet’s case is a common one in Cambodia, where mothers have no choice but to take on a caregiving position for their disabled children. Living in poverty only makes it harder for the mothers to provide proper care while maintaining a standard of living for themselves. The mental and physical toll it takes is profound. To address this problem caregivers need to be given much greater thought and attention in their communities and in government policy, as alleviating the burden of care can be the most effective way to improve the overall quality of care for the patient. More than anything, caregivers need to be seen and cared for just as much as the patient for successful care to be achieved.