The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period.

ABSTRACT

AIMS AND OBJECTIVES: To examine the unmet supportive care needs of long-term head and neck cancer caregivers, and the factors associated with those needs. BACKGROUND: Research on the unmet needs of head and neck cancer caregivers is lacking, particularly in the long-term survivorship period. DESIGN: Survey of 197 caregivers. METHODS: The study collected information on caregivers' demographic characteristics and their unmet supportive care needs (as measured by the Partners and Caregivers Supportive Care Needs Survey). An overall score of unmet need was generated, as were scores for four separate domains of unmet needs (emotional, health, information and work/social). RESULTS: Seventy six percentage of respondents were female, and 88% reported being married or living with a partner. Mean age was 57 years. Most caregivers had low levels of unmet needs. Managing fears about the cancer recurring was the most commonly reported individual need, described by slightly more than one in five respondents. The highest levels of need were located in the emotional and the health services domains. Loneliness and financial stress were consistently and significantly associated with high levels of unmet need in the multivariable analysis. CONCLUSIONS: Most head and neck cancer caregivers appear to have low levels of unmet need in the extended survivorship period. The greatest levels of unmet need that are experienced occur in relation to emotional and health service domains. Needs diminish over time. RELEVANCE TO CLINICAL PRACTICE Health professionals should be aware that a minority of long-term head and neck caregivers continue to experience strong fears of cancer recurrence. To reduce unmet needs across multiple domains, health professionals should seek to reduce caregivers' feelings of loneliness, and to assist caregivers to reduce the financial burdens that they experience as a result of long-term caring.