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

OBJECTIVES: Fear 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). METHODS: Four-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. RESULTS: EFA 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). CONCLUSIONS: We 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.

AIM: Although 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. METHODS: Semi-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. RESULTS: Twenty-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. CONCLUSIONS: Caregivers 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.

Caregiver fear of cancer recurrence: A systematic review and meta-analysis of quantitative studies.

OBJECTIVE: Fear of cancer recurrence (FCR) is reported by both cancer survivors and caregivers however less is known about caregiver FCR. This study aimed to (a) conduct a meta-analysis to compare survivor and caregiver FCR levels; (b) examine the relationship between caregiver FCR and depression, and anxiety; (c) evaluate psychometric properties of caregiver FCR measures. METHODS: CINAHL, Embase, PsychINFO and PubMed were searched for quantitative research examining caregiver FCR. Eligibility criteria included caregivers caring for a survivor with any type of cancer, reporting on caregiver FCR and/or measurement, published in English-language, peer-review journals between 1997 and November 2022. The COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) taxonomy was used to evaluate content and psychometric properties. The review was pre-registered (PROSPERO ID: CRD42020201906). RESULTS: Of 4297 records screened, 45 met criteria for inclusion. Meta-analysis revealed that caregivers reported FCR levels as high as FCR amongst survivors, with around 48% of caregivers reporting clinically significant FCR levels. There was a strong correlation between anxiety and depression and medium correlation with survivor FCR. Twelve different instruments were used to measure caregiver FCR. Assessments using the COSMIN taxonomy revealed few instruments had undergone appropriate development and psychometric testing. Only one instrument met 50% or more of the criteria, indicating substantial development or validation components were missing in most. CONCLUSIONS: Results suggest FCR is as often a problem for caregivers as it is for survivors. As in survivors, caregiver FCR is associated with more severe depression and anxiety. Caregiver FCR measurement has predominately relied on survivor conceptualisations and unvalidated measures. More caregiver-specific research is urgently needed.

A qualitative exploration of fear of cancer recurrence in caregivers.

OBJECTIVE: Fear of cancer recurrence (FCR) is one of the most common unmet needs for cancer patients and caregivers. Yet little is known about the potentially unique nature of caregiver FCR. Our research aimed to address this gap by qualitatively exploring the features and impact of caregiver FCR. METHODS: Eighteen semi-structured telephone interviews with cancer caregivers were conducted to explore the content and impact of caregiver fears and worries about cancer recurrence or progression. Data analysis used a Framework Approach. RESULTS: Qualitative analysis identified three themes (1) fear of the patient suffering, (2) the need to protect the patient from a recurrence and/or cancer-related distress, and (3) caregiver's sense of unpreparedness and uncertainty. Underpinning these themes was an overarching sense of personal responsibility for the life of the patient. This overarching theme was identified as a key driver of caregivers' personal and patient-centred fears. CONCLUSIONS: Our findings confirm the conceptual differences between patient and caregiver FCR. Future research must therefore acknowledge the unique experiences of caregivers and prioritise the development of empirically driven theoretical models, instruments, and interventions for caregiver FCR.