From bystander to enlisted carer – A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct

Gerhardt, Stine; Dengsø, Kristine Elberg; Herling, Suzanne Forsyth; Thomsen, Thordis

doi:10.1016/j.ejon.2019.101717

Cited by 7 publications

(8 citation statements)

References 23 publications

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“…Our finding about enduring concurs with a similar study 40 about spouse caregivers of patients with cancer in pancreas, duodenum, and bile duct. These authors show how spouse caregivers take on a substantial care burden while putting their own lives on hold and putting difficult feelings aside to support and outwardly remain positive to their partner, to keep the partner’s spirits up.…”

Section: Discussionsupporting

confidence: 92%

“…A concerning finding is that healthcare professionals gave the impression that the spouse caregivers were assumed to have the ability and resources to manage the care of their partner at home. Identical findings are documented in Gerhardt and colleagues' 40 study of spouse caregivers experiencing transcending from bystanders to silently enlisted caregiver during their partner's treatment. They lacked support and instruction to perform the caring task for their partner and felt overwhelmed by the tacit expectation to do so.…”

Section: Enduring Everyday Lifementioning

confidence: 79%

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Spouse Caregivers’ Experiences of Suffering in Relation to Care for a Partner With Brain Tumor

2021

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Background: Spouses often undertake the main caring role for a partner with primary malignant brain tumor (PMBT). Yet, demanding and challenging caring responsibilities especially because of the partner's cognitive declines can affect the spouse caregiver's well-being. Objective: The aim of this study was to investigate spouses' experiences of suffering in their role as main caregiver of a partner with PMBT. Methods: A hermeneutical qualitative design was used to collect and analyze data. Ten spouses (aged 36-76 years) were interviewed in depth twice 1 year apart, using semistructured interview guides. Results:The spouse caregivers' experiences of suffering in their role as their partner's main caregiver were interpreted according to 3 central themes: "Enduring everyday life," "Being overlooked and hurt," and "Being acknowledged and feeling good." Conclusion: Spouse caregivers of a partner with PMBT are suffering from exhaustion and suppression of their own emotions to endure the caring responsibilities. They need support to manage their everyday hardship; however, their experiences seem to be easily overlooked. This causes disappointment and hurts their dignity. Acknowledgment through simple acts of practical help or time to talk are consoling and alleviate their experiences of suffering. Implications for Practice: An intervention that supports healthcare professionals to facilitate the spouse caregivers' suffering is welcoming. The focus of the intervention may involve a sensitive awareness toward the spouse caregiver's individual resources and limitations and the relational and communicative competences of the healthcare professionals in their encounters with spouse caregivers that avoid hurting the spouse caregiver's dignity.

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Section: Discussionsupporting

confidence: 92%

Section: Enduring Everyday Lifementioning

confidence: 79%

Spouse Caregivers’ Experiences of Suffering in Relation to Care for a Partner With Brain Tumor

2021

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“…The adverse effects of informal caregiving are increasingly appreciated in various diseases including cancer [ 9 , 10 ]. In cancer, family members and friends are seldom prepared to be caregivers [ 11 ] and are thrust into the role at the time when they are coming to terms with the diagnosis.…”

Section: Introductionmentioning

confidence: 99%

Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer

Chong

Crowe

Mentor

et al. 2022

Support Care Cancer

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Purpose Informal caregivers play an important supportive care role for patients with cancer. This may be especially true for pancreatic cancer which is often diagnosed late, has a poor prognosis and is associated with a significant symptom burden. We systematically reviewed the evidence on caregiver burden, unmet needs and quality-of-life of informal caregivers to patients with pancreatic cancer. Method PubMed, Medline, CINAHL and Embase databases were systematically searched on 31 August 2021. Qualitative and quantitative data on informal caregivers’ experiences were extracted and coded into themes of burden, unmet needs or quality-of-life with narrative synthesis of the data undertaken. Results Nine studies (five qualitative, four quantitative), including 6023 informal caregivers, were included in the review. We categorised data into three key themes: caregiver burden, unmet needs and quality-of-life. Data on caregiver burden was organised into a single subtheme relating to symptom management as a source of burden. Data on unmet needs was organised into three subthemes need for: better clinical communication; support and briefings for caregivers; and help with navigating the health care system. Data on quality-of-life indicate large proportions of informal caregivers experience clinical levels of anxiety (33%) or depression (12%-32%). All five qualitative studies were graded as good quality; three quantitative studies were poor quality, and one was fair quality. Conclusion High-quality pancreatic cancer care should consider the impacts of informal caregiving. Prospective longitudinal studies examining multiple dimensions of caregiver burden, needs, and quality-of-life would be valuable at informing supportive care cancer delivery to pancreatic cancer informal caregivers.

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“…Participants also highlighted the need for their family to receive emotional support. Family may take on the role of 'enlisted carer' without sufficient support or knowledge of what to expect, and, as patients themselves do, they may also hide their anxieties and present a positive appearance to the person with cancer 42 . While family members can accompany the patient to hospital appointments, surgeons and oncologists do not have clinical responsibility towards them.…”

Section: Comparison With Previous Literaturementioning

confidence: 99%

‘You know where we are if you need us.’ The role of primary care in supporting patients following pancreaticoduodenectomy for cancer: a qualitative study

et al. 2022

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BackgroundTen percent of patients diagnosed with pancreatic cancer undergo pancreaticoduodenectomy. It is known that these patients have unmet psychological support needs, and GPs are key in enabling effective coordination of care for people living with life-shortening conditions.AimTo explore patients’ perspectives on the role of primary care in their management, and their sources of support.Design and settingInductive qualitative study of patients who had undergone pancreaticoduodenectomy between six months and six years previously for pancreatic or distal biliary duct cancers. Participants were recruited by Clinical Nurse Specialists from a single National Health Service Trust in Northwest England.MethodSemi-structured interviews, either face-to-face or via video link, were conducted with 20 participants. Interviews were audio-recorded, transcribed and anonymised. Thematic analysis utilized principles of constant comparison.ResultsParticipants described immense treatment burden and uncertainty around the role of the GP in their ongoing care. They recognised that GPs may have little experience of patients who have undergone pancreaticoduodenectomy, but felt that GPs can play a vital role in offering support. Participants wished for emotional support post-operatively, and valued support networks including family and friends. However, they found expressing their deepest fears difficult. Participants felt they would value greater recognition by primary care of both physical and psychological sequelae of major pancreatic surgery, and the impact on their families.ConclusionPatients may feel a ‘burden’ to both healthcare professionals and their own support networks following pancreaticoduodenectomy. Primary care is in a key position to proactively offer psychological support.

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From bystander to enlisted carer – A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct

Cited by 7 publications

References 23 publications

Spouse Caregivers’ Experiences of Suffering in Relation to Care for a Partner With Brain Tumor

Spouse Caregivers’ Experiences of Suffering in Relation to Care for a Partner With Brain Tumor

Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer

‘You know where we are if you need us.’ The role of primary care in supporting patients following pancreaticoduodenectomy for cancer: a qualitative study

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