Background: Caregivers are instrumental to the health and well-being of gynecologic cancer patients and assume many roles associated with managing care: communication with healthcare providers, aiding in symptom management, and providing emotional and physical (eg, transportation, home care tasks) support. As care continues to shift to the outpatient setting and patients move through the disease trajectory, caregivers are increasingly asked to undertake tasks previously provided by formal caregivers (eg, medical assistants, nurses). Family caregivers can be deeply affected by the demands of caregiving and experience high levels of unmet needs that can contribute to physical and mental distress. Although there is a growing body of literature related to caregiver needs, a paucity of research exists identifying key support elements instrumental to improving emotional and physical well-being of caregivers in the field of gynecologic oncology.
Objectives: The objective of this study was to describe the priority needs of caregivers of patients with gynecologic cancers and determine the set of essential elements of caregiver support to be provided in gynecologic cancer programs.
Methods: Over the course of 1 year, 56 multidisciplinary stakeholders, including caregivers, patients, and clinicians, participated in a multistep research study using a modified Delphi approach to generate a set of essential elements for caregiver support. The process culminated in a research roundtable where stakeholders discussed, synthesized, and prioritized essential support services using 3 rounds of consensus-building activities. Basic descriptive statistics were performed to provide means and rankings back to stakeholders prior to each round.
Results: Stakeholders prioritized the top 3 needs of caregivers as: (1) To obtain information about their loved one’s cancer (M = 4.18, SD = 4.33); (2) How to provide support and comfort to their loved one (M = 3.18, SD = 3.92); and (3) How to maintain their own emotional health and well-being (M = 2.94, SD = 3.90). Of 68 potential elements of support generated from a literature review and stakeholder input, 15 Essential Elements of Support were identified to address the needs of caregivers of women with gynecologic cancers. The support elements ranged from immediately actionable (eg, a designated point person to help caregivers navigate the system, information for the caregiver on managing the patient’s symptoms, and skilled-care training) to more aspirational supports (eg, integrative services focused on the health and well-being of the caregiver).
Conclusions: Caregivers are an integral part of cancer care, although their needs are inconsistently addressed by the healthcare team. Oncology nurse navigators could provide a critical role in ensuring that family caregivers are prepared and supported to effectively care for themselves and their family member with cancer. To provide comprehensive quality care, navigators should work with other clinicians to provide caregivers with the Essential Elements of Support identified in this study and continue to build systems to incorporate caregivers’ needs.