Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Tranberg, Mattias; Andersson, Magdalena; Nilbert, Mef; Rasmussén, Birgit H.

doi:10.1177/1359105319890407

Cited by 34 publications

(30 citation statements)

References 36 publications

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“…Avoiding conversations and limiting self‐disclosure to protect ones' partner, known as “protective buffering,” has been linked to worse individual and relationship outcomes 34,35 . Caregivers are often in the unique position of sharing the patients' stress, but feeling unable or unwilling to share the stress of caregiving with their partners 36 . To protect the relationship, yet benefit from exploring thoughts and feelings, other research suggests that emotional disclosure about cancer‐related stress may be less beneficial between patient and spouse caregiver; 20,37 rather, disclosing to someone other than the spouse may be a better coping strategy.…”

Section: Discussionmentioning

confidence: 99%

In‐home conversations of couples with advanced cancer: Support has its costs

et al. 2020

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Objective: The goal of this study was to describe the quality of naturalistic communication between patients with advanced cancer and their spouse caregivers using observational methods. We also assessed the association between patient and caregiver communication behaviors and psychological and physical health using the actor-partner interdependence model. Methods: Data on 81 dyads were gathered as part of a prospective observational study. Patients with advanced cancer and their spouse caregivers completed demographic, physical health, and emotional well-being questionnaires. Cancer and relationship communication captured in "day-in-the-life" audio recordings were coded using Gottman's Turning System to assess the quality of bids for attention and responses. Results: Bids for attention were most often informational (Low Bids) and responses were mostly positive and effortful (Turn Towards); patients and caregivers did not significantly differ in communication behavior. More effortful bids for attention (High Bids) were associated with more positive and effortful responses. Patient communication behaviors were significantly associated with caregiver emotional well-being, whereas caregiver communication behaviors were significantly associated with their own emotional well-being and patient physical health. Conclusions: While patients may benefit from caregivers' more positive and engaged communication at home, the emotional labor of focusing on and engaging the patient may take a toll on caregivers' own well-being. This work contributes to the understanding of what everyday communication looks like for patients with advanced cancer and their spouse caregivers and how this communication may impact physical and psychological health. Our findings provide a foundation to develop guidelines for psychosocial couple-based interventions.

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Section: Discussionmentioning

confidence: 99%

In‐home conversations of couples with advanced cancer: Support has its costs

et al. 2020

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“…Although carers are an essential part of the healthcare system, there has historically been little recognition of the needs of carers 29 . Carers may feel invisible to health professionals and receive limited support options compared to the patient, even though they can experience equal or greater distress 30,31 . Carers may also be reluctant to receive or access support themselves; in the current study, the following reasons were given: not realising they needed support, feeling guilty about seeking support, lacking access to supports and feeling like supports were not intended for them.…”

Section: Discussionmentioning

confidence: 90%

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

et al. 2021

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Objective Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. Methods An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi‐structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. Findings Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. Conclusions Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer‐specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.

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“…Over and above the cancer survivor themselves, cancer affects the entire family. Family carers ("carers") provide informal caregiving support to their family member diagnosed with cancer and may experience commensurate or greater distress than the patient [9]. Similar to patients, cancer carers must manage anxiety over a possible recurrence and manage a changed life after treatment [10].…”

Section: Introductionmentioning

confidence: 99%

“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

et al. 2021

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Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

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Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care

Cited by 34 publications

References 36 publications

In‐home conversations of couples with advanced cancer: Support has its costs

In‐home conversations of couples with advanced cancer: Support has its costs

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study

“We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

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