Development of a communication and health literacy curriculum: Optimizing the informal cancer caregiver role

Abstract

Objective: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends). Methods:A three-step process was conducted: (a) two-round online Delphi method process with experts (n = 9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n = 32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n = 6) to explore caregiving experiences and curriculum content topics.Results: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information;working with health care providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care.Conclusions: This theoretically grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes. K E Y W O R D S cancer, caregiver, communication, curriculum, health literacy

Trajectory of Psychosocial Measures Amongst Informal Caregivers: Case-Controlled Study of 1375 Informal Caregivers from the English Longitudinal Study of Ageing

“…Whilst not being clinically significant, the CASP pleasure domain demonstrated a decline reported by non-caregivers but maintained static for caregivers over time. This may seem surprising, where caregiving is often perceived as a stressful not pleasurable activity [7,8]. However previous qualitative research has reported the positive experiences that caregiving can offer in some instances [28][29][30].…”

“…Furthermore, caregivers were not selected based on a specific illness or medical condition of the care-recipients. Previous evidence has frequently focused on examining informal caregiver outcomes for caregivers with specific diseases [8,11,19]. Accordingly, this analysis provides new insights to the wider community.…”

“…Previous literature has indicated that informal caregiving is associated with poorer psychological wellbeing and reduced perceived social worth and loneliness [7,8]. The latter is particularly important given that loneliness can negatively influence higher-order cognitive processes such as attention, memory, emotional regulation, and logical reasoning [9].…”

eTRIO trial: study protocol of a randomised controlled trial of online education modules to facilitate effective family caregiver involvement in oncology

“…30 Caregiver self-efficacy has been identified as an important component of a caregiver's coping, with higher caregiver self-efficacy associated with lower caregiver burnout and psychosocial distress as well improved patient well-being. 31 32 Wittenberg and colleagues 33 recently published a Delphi consensus curriculum for cancer caregivers identifying seven key areas for future intervention development, one of which focuses on caregivers working with health professionals, including preparing for consultations, sharing information, asking and prioritising questions and communicating patient need. A paucity of targeted education for cancer Open access caregivers to more confidently and skilfully engage with oncology clinicians remains.…”

Development of a Health Literacy Program for Parents of Children with Cancer: A Mixed-Methods Study Protocol

“…For example, the low health literacy of caregivers can cause incorrect clinical decisions affecting the child's treatment course. Moreover, the rate of going to emergency and hospitalization increases among them, and in general, they spend more medical costs (12,18). Health literacy is especially important for patients with cancer because decisionmaking for prevention, screening, and treatment in the oncology environment is complex.…”