Dataset Information

Trapped in a double cage: How patients' partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis.

ABSTRACT:

Background

When confronting a partner's diagnosis of advanced cancer, family caregivers are often protected against severe psychological illness by their mental resilience. However, the current COVID-19 pandemic endangers this resilience through the daily threat of contagion exposure, viral transmission, isolation, and fear of death.

Aim

To examine the experiences of partners caring for a person with advanced cancer during the COVID-19 pandemic.

Setting

Twelve partners (all under the age of 65) of persons newly diagnosed with advanced cancer immediately before or during the pandemic were interviewed. An interpretative phenomenological approach was used in analyzing the data.

Findings

Partners experience the COVID-19 pandemic as "living in a double cage." Due to pandemic mandates and restrictions, the pace of their lives slows. However, COVID-19 does not slow the progression of the cancer, nor does it allow for an escape from the cancer. The pandemic has a significant impact on several elements of resilience. Nevertheless, the participants succeed in adapting and coping in a balanced and creative way despite the new challenges imposed by the pandemic.

Conclusion

The COVID-19 pandemic challenges one's resilience, a process that, under normal circumstances, may evolve while caring for a partner diagnosed with advanced cancer. Although most partners seem to cope adaptively with both advanced cancer and COVID-19, healthcare professionals should be aware of the risk of exhaustion. Furthermore, it can be presupposed that threatened, contextual factors that may support resilience should be preserved to increase the chances for a resilient outcome.

SUBMITTER: Opsomer S

PROVIDER: S-EPMC9087315 | biostudies-literature | 2022 May

REPOSITORIES: biostudies-literature

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Publications

Trapped in a double cage: How patients' partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis.

Opsomer Sophie S Joossens Sofie S De Lepeleire Jan J Pype Peter P Lauwerier Emelien E

Palliative medicine 20220310 5

<h4>Background</h4>When confronting a partner's diagnosis of advanced cancer, family caregivers are often protected against severe psychological illness by their mental resilience. However, the current COVID-19 pandemic endangers this resilience through the daily threat of contagion exposure, viral transmission, isolation, and fear of death.<h4>Aim</h4>To examine the experiences of partners caring for a person with advanced cancer during the COVID-19 pandemic.<h4>Setting</h4>Twelve partners (all ...[more]

PMID: 35272521

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Project description:BackgroundIn the context of life-threatening illness, loss of control is argued as a source of suffering and loss of perceived dignity, whereas having control over the dying process has been seen as a way of maintaining personal independence. Little is known about the meaning of control from the patients' perspectives. Thus, the aim of this study was to explore how patients with advanced cancer understand control, in terms of underlying beliefs, attitudes, and expectations consistent with self-efficacy, in different dimensions of their life, their illness, and their healthcare.MethodsWe conducted semi-structured qualitative interviews using an interpretive phenomenological analysis approach. Patients with advanced cancer from an oncology unit and a palliative care unit from Barcelona (Spain) were recruited. The inclusion criteria were a) ≥ 18 years old; b) fluency in Spanish or Catalan; c) outpatients diagnosed with advanced cancer; d) Eastern Cooperative Oncology Group (ECOG) between 0 and 3; e) judged by their physician or nurse to be emotionally stable; f) considered to have control over their illness and circumstances according to their responsible physician; and g) signed informed consent.ResultsWe interviewed eight participants (ages ranged from 29 to 70 years, six were female). Two themes were identified: 1) factors that influence the perception of control, with subthemes: uncertainty about future suffering, character traits underlying a need for control; sense of lack of care as a source of loss of control; and 2) perceiving control over an uncontrollable illness, explained by perceived control over subjective wellbeing and adjusting the focus of control. The data allowed us to identify strategies that promote a sense of control in these patients.ConclusionsThe illness, according to the participants, was experienced as series of losses. However, attention was often focused on areas where they continued to have control. These findings selectively reflect experiences of those who see themselves able to effect outcomes in life, suggesting future research should address how both family members and healthcare professionals can help to empower all patients.

Project description:BackgroundStudies of the lived experience of chronic obstructive pulmonary disease (COPD) reveal a number of challenges patients face when interacting with healthcare providers that may be exacerbated by unwillingness or inability to quit smoking. However, none have explored, in-depth, primary care experiences among patients with COPD in community healthcare settings.Aims/ objectiveThe study investigated healthcare experiences of patients living independently in the community with COPD who smoked or had recently quit (at most within the last 5 years), seeking care in primary care settings.MethodAn Interpretative Phenomenological Analysis (IPA) involving thirteen participants purposively recruited from social media posts in COPD and carer support groups, general community groups, community noticeboards and paid adverts on social media. In-depth interviews were held between February and April 2022 by phone or Zoom™ and explored patient experience of primary care, focusing on how smoking patterns, addiction and stigma impact upon and shape these experiences.ResultsParticipants were aged between 45 to 75 years. Nine were female and two thirds were current smokers. Problematic experiences including time-constrained consultations, having to self-advocate for care "…go digging myself and then go and see him and say, can we do this, can we do that type of thing?" and guilt about smoking were common. Positive care experiences described non-judgemental interpersonal interactions with doctors, timely referral, proactive care and trust "I have an actual great trust for my GP… they're awesome, they'll look after you". Participants described how their care experience shifted as primary care adapted care delivery during COVID-19.ConclusionsPro-active, empathetic care from general practitioners is desired from patients living with COPD. Stigma and fear of judgement was an important underlying driver of negative care experiences contributing to delayed help seeking from general practitioners.

Dataset Information

Trapped in a double cage: How patients' partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis.

Background

Aim

Setting

Findings

Conclusion

Publications

Trapped in a double cage: How patients' partners experience the diagnosis of advanced cancer in times of the COVID-19 pandemic: An interpretative phenomenological analysis.

Similar Datasets

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