title: Family experience caring for terminally ill patients with cancer in Hong Kong.
abstract: In this study, 24 family caregivers of terminally ill patients participated in in-depth interviews regarding their experiences of giving care. The data were analyzed using grounded theory qualitative method. Commitment emerged as the precondition of the caregiving process. The caregivers did not perceive the work of caring as a burden. Rather, they felt that despite any personal hardships, what they were doing was important to their loved ones and therefore meaningful to them as caregivers. The components of commitment can be described as relational commitment, the act of showing love, and determination. The process of caregiving includes four phases: 1) holding onto hope for a miracle, 2) taking care, 3) preparing for death, and 4) adjusting to another phase of life. A patient-caregiver relationship, Confucian concepts of yi (appropriateness or rightness), and filial duty are reflected in the process of caregiving. Consequences of the process include finding meaning in life and peace of heart and mind. The emotional aspect of the caregiving experience can be described as an intense emotional experience filled with feelings of hope and hopelessness, guilt, fear, and regret. As a result of the caregiving experience, most participants found they have had a change of worldviews and treasure their lives. Findings show a significant need for interventions at each phase of the caregiving process designed to provide effective and culturally sensitive support and affirmation to family members as they care for their loved ones with terminal illnesses.
authors.affiliation: School of Nursing, Hong Kong Polytechnic University, Hung Hom, Kowloon, Hong Kong. hsemok@inet.polyu.edu.hk
authors.forename: Esther
authors.initials: E
authors.lastname: Mok
authors.forename: Faye
authors.initials: F
authors.lastname: Chan
authors.forename: Vivian
authors.initials: V
authors.lastname: Chan
authors.forename: Ellen
authors.initials: E
authors.lastname: Yeung
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D001293:Attitude to Death; D001294:Attitude to Health; D017028:Caregivers / Q000523:psychology*; D004644:Emotions; D004645:Empathy; D005190:Family / Q000523:psychology*; D005260:Female; D006117:Grief; D006301:Health Services Needs and Demand; D006701:Home Nursing / Q000523:psychology*; D006723:Hong Kong; D006801:Humans; D008149:Love; D008297:Male; D008875:Middle Aged; D008960:Models, Psychological; D009013:Morale; D009369:Neoplasms / Q000451:nursing*; D015404:Nursing Methodology Research; D012944:Social Support; D011795:Surveys and Questionnaires; D013727:Terminal Care / Q000523:psychology*