Kyra Webb

Development and validation of the CARE‐FCR: A caregiver‐specific measure of fear of cancer recurrence and progression

AbstractObjectivesFear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE‐FCR).MethodsFour‐hundred and thirty‐eight caregivers (56% female, Mage = 50.53 years, SD = 17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE‐FCR. Convergent validity was assessed using pre‐existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta‐cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2 weeks later to assess test‐retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis.ResultsEFA indicated a 3‐factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test‐retest reliability was adequate. Internal consistency for the CARE‐FCR was strong, overall Cronbach's α = 0.96 (progression = 0.94, recurrence = 0.92 and communication = 0.78).ConclusionsWe present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE‐FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

AbstractAimAlthough there is growing research exploring survivor fear of cancer recurrence (FCR), little is known about caregiver FCR. To date, examination of caregiver FCR has largely been conducted through the lens of survivor conceptualisations, limiting the development of caregiver‐specific models, measures, and interventions. This study aimed to explore experiences of FCR among caregivers of people with ovarian cancer.MethodsSemi‐structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed an online survey collecting participant and patient demographic characteristics, information about the survivor's disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI‐c). Qualitative interviews explored caregiver fears, how fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis using a Framework Approach was used to analyse the results.ResultsTwenty‐four caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis identified four inter‐related themes and associated sub‐themes: (1) Fear and uncertainty; (2) Liminality; (3) Hopelessness and (4) Caregiver's protection of the person and self (caregiver's role as protector). Underpinning these themes was an overarching fear of one's family member dying.ConclusionsCaregivers supporting people with ovarian cancer experience worries and concerns related to cancer recurrence or progression. These experiences are conceptually different to survivor experiences. Fear of one's family member dying, and the dual nature of caregiver protection/self‐protection mean it is imperative that interventions are tailored specifically to caregiver needs. Future research facilitating the development of appropriate measures and interventions is essential to reduce caregiver FCR.