Enablers of Careful Hand Feeding Decisions for Persons With Advanced Dementia in Hong Kong: A Qualitative Study of Chinese Family Surrogates
Jacqueline K. Yuen, David Amorim, Irene Au, Vivian Weiqun Lou, Sandra M. ShiABSTRACT
Background
Deciding whether to initiate tube feeding is a significant challenge for family surrogates of persons with dementia. Although clinical guidelines recommend careful hand feeding due to lack of benefit of tube feeding, tube feeding remains the default intervention in Asia. This study aimed to identify factors that enabled Chinese family surrogates to choose careful hand feeding in contexts where tube feeding is the dominant practice.
Methods
We conducted a qualitative descriptive study nested within a larger observational cohort study evaluating outcomes of nasogastric tube feeding versus careful hand feeding in hospitalized patients with advanced dementia. We purposively sampled Chinese family surrogates who had made feeding decisions for relatives admitted to two public hospitals with established careful hand feeding programs in Hong Kong. Semi‐structured interviews explored factors influencing tube feeding decisions, and transcripts were analyzed using thematic analysis.
Results
Thirty surrogates were interviewed. Five key enablers of careful hand feeding decisions were identified: (1) prioritization of comfort and quality of life, (2) respect for patient preferences, (3) prior knowledge and experiences, (4) endorsement from physicians and family members, and (5) availability of caregiver support for hand feeding. A hierarchical relationship emerged: values and preferences drive initial inclination, reinforced by physician and family endorsement and prior knowledge. Ultimately, the necessary condition is the practical feasibility of hand feeding which supersedes all other considerations.
Conclusions
Choosing hand feeding is a value‐based decision that is only realized when adequate caregiver support exists. Health systems must provide training in dementia feeding management, timely advance care planning, and practical feeding support to enable evidence‐based and value‐concordant feeding decisions in dementia care.