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

Abstract

AimAlthough 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.

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

“…13 These findings were supported by a second qualitative study, exploring ovarian cancer caregiver experiences specifically. 17 This study found caregivers expressed a need to protect the person, but also to engage in self-protection strategies. These protective strategies were used by caregivers to decrease the likelihood of experiencing distress associated with the fear of the survivor's cancer returning, such as minimising concerns.…”

“…A caregiver-specific FCR model explaining the relationship between themes was proposed (See Figure S1). 17 Fear and uncertainty were central to caregiver experiences, which resulted in attempts to exert control and a sense of personal responsibility. 13,17 Driving fear was the caregiver's role as protector, which was dual in nature: (i) to manage the caregiver's own worries and fears, and/or (ii) to protect the survivor from distress.…”

“…17 Fear and uncertainty were central to caregiver experiences, which resulted in attempts to exert control and a sense of personal responsibility. 13,17 Driving fear was the caregiver's role as protector, which was dual in nature: (i) to manage the caregiver's own worries and fears, and/or (ii) to protect the survivor from distress. This can result in a conspiracy of silence between the caregiver and the person with cancer.…”

“…This can result in a conspiracy of silence between the caregiver and the person with cancer. 13,17 Underpinning caregiver FCR was the fear of one's family member dying, driving protective behaviours. 17 This model identified unique aspects of caregiver FCR not captured in current patient models.…”

“…17 This model identified unique aspects of caregiver FCR not captured in current patient models. 17 Currently, definitions of FCR conflate the terms recurrence and progression, 4 though recent research in cancer survivors suggests these may be separate, but related constructs. 18 To date, differences between FCR and fear of progression (FoP) have not been explored in people providing care.…”