Joanne Shaw

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.

Feasibility and Acceptability of the Fear‐Less Screening and Stratified‐Care Model for Fear of Cancer Recurrence Among People Affected by Early‐Stage Cancer

ABSTRACTObjectivesFear of cancer recurrence (FCR) is a prevalent unmet need for people affected by cancer, in the context of limited healthcare resources. Stratified‐care models have potential to meet this need, while reducing resource demands. This study aimed to evaluate the feasibility and acceptability of screening procedures and interventions within the Fear‐Less stratified‐care model among those impacted by early‐stage cancer.MethodsPeople affected by breast, head and neck, or gynaecological cancer, who had completed curative treatment, were screened for FCR. Individuals experiencing moderate FCR (scored 13–21 on the Fear of Cancer Recurrence Inventory‐Short Form; FCRI‐SF) were offered a purpose‐developed clinician‐guided self‐management intervention, while those experiencing severe FCR (FCRI‐SF score ≥ 22) were offered individual therapy (ConquerFear). Re‐screening and evaluation measures were completed post‐intervention.ResultsSeventy‐six (70%) of 109 eligible people completed screening, with 53/76 participating in the Fear‐Less model evaluation. Thirty‐nine of 53 participants reported FCR and were referred to an intervention; 30/39 (77%) accepted the referral. Fifteen (83%) of 18 participants completing the self‐management intervention reported reading ≥ 75% of the resource at 5 weeks, with 10/18 (56%) reporting clinically meaningful (≥ 10%) reductions on the FCRI‐SF post‐intervention. Qualitative feedback indicated screening and the stratified‐care received were acceptable.ConclusionsScreening procedures and interventions forming the Fear‐Less model appear feasible and acceptable for identifying and treating FCR among people affected by early‐stage cancer. Although further research is required to evaluate its efficacy, this model has the potential to meet a major unmet need, where psychosocial services are limited amid increased demand.Trial RegistrationThis study was retrospectively registered on the Australian New Zealand Clinical Trials Registry (ACTRN12622000818730) on 10/6/2022.