Yu-Ping Chang, UB assistant professor of nursing and first author on research recently published in the Journal of Aging Studies, examined the angst that arises for Chinese family caregivers who can no longer look after elders with advanced dementia.
Chang studied the decisional conflict endured by Chinese families when considering nursing home placement for their relatives.
“Decisional conflict is generally understood to be about individuals who make medical decisions for themselves and is described as a state of uncertainty related to making a tough decision,” Chang explains.
However until Chang’s study, little was known about decisional conflict among Chinese surrogate decision makers–usually family members–who are thrust into a role of making life-altering choices for others.
According to previous research, family caregivers across cultures view placing their loved ones in a long-term care facility as a failure of care-giving responsibility, accompanied by feelings of sadness, guilt, and resentment as well as relief.
But Chinese families, while experiencing these universal feelings, also have to deal with two powerful cultural forces: an obligation to involve the “family collective” and “xiao,” which is translated as filial piety.
The Chinese concept of filial piety, which is inherited from the Confucian ideals, requires children to be respectful of parents, putting parents’/elders’ needs first at all times. The family collective requires that decisions about elders be made by the family as a whole, not by one individual even if that person is the primary caretaker.
Chang explains that these two Chinese values add even more complexity to the decision of placing loved ones in nursing homes.
For this study, Chang and her research team recruited and interviewed 30 Chinese family caregivers from a gero-psychiatric university-based outpatient clinic and a community-based private nursing home, both in Taiwan. They asked questions such as, “how did you feel about placing your family member in a nursing home,” “how did you deal with the difficulties,” and “how did others influence your decision.”
What emerged from Chang’s research were six themes describing factors that created decisional conflict among the Chinese caregivers when considering nursing home placement. They are:
1. The Chinese value of filial piety — most adult children and grandchildren caregivers consistently referred to placement as a violation of filial piety and regarded it as abandonment.
2. Limited financial resources and information — the high cost of good quality care increased caregivers’ financial burden; in addition, some caregivers reported confusion and lack of information regarding how to select a quality facility.
3. Placement willingness of the older adult — some caregivers knew that the elder would not accept placement; caregivers clearly pointed out their elders’ refusal of placement was one of the most difficult experiences during the entire process
4. Family disagreement — although the primary family caregiver of the older adult recognized the need for placement, the placement decision was expected to be collectively made with other family members who held more authority within the family.
5. Distrust of nursing home quality — the majority of caregivers often reported worry and concern regarding the quality of care provided in nursing homes citing poor nutrition, poor hygiene, risk for falls and negligent nursing care.
6. Limited nursing home availability — participants described difficulty in finding nursing homes that would care for patients with dementia. Two caregivers experienced their relatives being “kicked out” of facilities because of uncontrollable behaviors related to dementia.
Chang’s research shows that with the older adult population — the fastest growing cohort in Taiwan — it is imperative for clinicians to understand factors influencing family caregiver decisional conflict so that appropriate support can be given. In addition, her findings reveal that improvement in the quality of care and the availability of nursing homes and their staffs specializing in dementia care were of greatest concern to family caregivers.
“Also, because females in many cultures may experience more interpersonal difficulty when making important decisions, future research should take into consideration the role of gender in deciding on nursing home placement in order to better understand the impact of cross-cultural differences,” said Chang.
Chang notes that with a rapidly growing Asian-American population in North America, it is crucial for health care providers from various cultural and ethnic backgrounds to be aware of and sensitive to values influencing Chinese family caregiver decision making so that proper support, resources and interventions can be implemented for Chinese families.
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