Effects of a Nurse-led Survivorship Care Program on the Health and Resilience of Primary Caregivers of Patients With Advanced Head and Neck Cancer: A Randomized Controlled Trial

Head and neck cancers (HNCs) rank fifth among the most common cancers worldwide and account for more than 200,000 deaths each year. In the United States, approximately 66,630 people are diagnosed each year, and 15,000 die.1 In Taiwan, it is the fourth most common cause of cancer death among males. The main risk factors are tobacco smoking, betel quid chewing, and alcohol use.2 HNC diagnosis is age-dependent (around 56% of cases are in males aged 40–60 years).3 More than 50% of HNC cases are at an advanced stage when initially diagnosed, and most are treated with multimodal therapy (ie, some combination of surgery, chemotherapy, and radiotherapy). In those with advanced disease, the 5-year survival rate is 40% to 50% and approximately 10% to 50% of patients may have recurrence.4 HNC survivors report physical and psychosocial deterioration and heavily depend on their primary caregivers.5 For primary caregivers, caregiving stress may result in emotional distress, social impairment, and poor physical health, often the result of inadequate coping, maladaptation, and diminished resilience.6

Primary caregivers of cancer patients continue to perform caregiving duties and responsibilities after the patients transition from the hospital to home.7 Social support is an important part of primary caregivers’ adjustment and well-being, as well as a primary factor in the ability of primary caregivers to overcome caregiving stress.8 Caregiving stress may disrupt caregivers’ social connections, which can limit their self-care, leisure activities, and life satisfaction.9 Most primary caregivers of HNC patients are spouses, live with the patient, lack access to alternative care, and provide caregiving over an extended time; these stressful conditions can cause primary caregivers to neglect their own needs so that their physical and mental health decline.10, 11, 12 All these problems may significantly reduce primary caregivers’ resilience. Resilience may reflect an individual's ability to cope with stressful events using available resources,13 adjust to the threat, and return to normal functioning.14 Cancer caregiving is characterized by challenging, exhausting, and troublesome experiences and negatively affects the adaption process.15

A survivorship care plan (SCP) delivers individualized cancer care following initial treatment and provides monitoring for cancer spread, strategies to minimize late effects, empowerment for self-care, a follow-up plan, promotion of well-being, and notice of accessible resources.16,17 Nurse-led care is related to nurses guiding patients/caregivers along a well-defined intervention and coordinating health care providers to help ensure high-quality continuity of care.18 An SCP has been shown to be effective in addressing unmet needs,19 including cognitive deficits, social functioning, and fatigue;20 promoting healthy habits (dietary modification and exercise); and providing a platform for communication with health care providers.21 Thus, an effective SCP emphasizes positive effects on health-related outcomes in cancer patients. Insufficient research has focused on the effects of SCP on caregiver health and resilience. Therefore, the purposes of this study were to assess the effects of a nurse-led SCP on the levels of emotional distress, social support, physical health, mental health, and resilience in the primary caregivers of patients with advanced HNC, from the completion of treatment to early survivorship.

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