“You either sink or you swim, and you're better off swimming”: A qualitative study exploring the self-management experiences of soft tissue sarcoma survivors

Beghean, Rahela; Coffey, Laura

doi:10.1016/j.ejon.2021.102062

Cited by 6 publications

(3 citation statements)

References 51 publications

(61 reference statements)

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“…Eine Sarkomerkrankung und ihre Behandlungen sind für Patient_innen und Angehörige sehr belastend. Sie erleben erhebliche psychosoziale Probleme und Patient_innen haben ein hohes Risiko für funktionelle Einschränkungen, die ihre Aktivitäten, soziale Teilhabe und Lebensqualität beeinträchtigen (Beghean & Coffey, 2021;Weaver et al, 2021a). Sarkome umfassen eine heterogene Gruppe von seltenen, malignen Tumoren mit unterschiedlichen Verläu fen.…”

Section: Hintergrundunclassified

Betreuung durch eine Advanced Practice Nurse: Erfahrungen von Patient_innen mit Sarkom und Angehörigen

Bologna

Kaufmann

Staudacher

et al. 2023

Pflege

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Zusammenfassung. Hintergrund: Sarkome sind eine heterogene Gruppe von seltenen, malignen Tumoren mit unterschiedlichen Verläufen, die das Leben von Patient_innen und Angehörigen erheblich belasten. Aufgrund der komplexen Behandlungen erfolgt die Betreuung der Betroffenen am Sarkomzentrum eines Schweizer Universitätsspitals durch ein interprofessionelles Team. Die Advanced Practice Nurse (APN) ist ein Mitglied des interprofessionellen Teams und betreut Patient_innen und Angehörige über den ganzen Krankheitsverlauf. Bisher wurde die Betreuung durch eine APN aus Sicht von Patient_innen mit Sarkom und Angehörigen in der Literatur wenig beschrieben. Ziel: Es wurde untersucht, wie Patient_innen mit Sarkom und Angehörige die Betreuung durch die APN erlebt hatten. Methoden: Die Studie orientierte sich an der qualitativen Forschungsmethodologie „Interpretive Description“. Einzelinterviews mit sieben Patient_innen und fünf Angehörigen wurden durchgeführt und in einem iterativen Prozess analysiert. Ergebnisse: Für Patient_innen und Angehörige war die Zeit von der Diagnose bis zur Therapie und Nachsorge sehr belastend. Sie erlebten die Betreuung durch die APN während dieser Zeit als große Unterstützung und beschrieben die APN als mitfühlende Vertrauens- und kontinuierliche Ansprechperson, die kompetent vernetzte, informierte und beriet. Schlussfolgerungen: Für Patient_innen mit Sarkomerkrankungen und Angehörige war eine kontinuierliche Ansprech- und mitfühlende, sehr fachkompetente Vertrauensperson wesentlich. Eine APN kann mit ihrer Betreuung diesem Anspruch gerecht werden.

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Section: Hintergrundunclassified

Betreuung durch eine Advanced Practice Nurse: Erfahrungen von Patient_innen mit Sarkom und Angehörigen

Bologna

Kaufmann

Staudacher

et al. 2023

Pflege

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“…18 However, five of seven patients in a study with soft tissue sarcoma noted that FCR was constant, debilitating, and impeded how they lived their lives. 19…”

Section: Introductionmentioning

confidence: 99%

“…18 However, five of seven patients in a study with soft tissue sarcoma noted that FCR was constant, debilitating, and impeded how they lived their lives. 19 The sarcoma population is distinct in that recurrence rates are higher than most other solid cancers, 14 and therefore, the prevalence of FCR could be higher based on this clinical reality. 20 The experiences of FCR in patients with sarcoma and the strategies they develop to deal with the fear remain an unexplored but an important area of research.…”

Section: Introductionmentioning

confidence: 99%

Experiences of fear of recurrence in patients with sarcoma

Vindrola-Padros,

Fern,

Gerrand

et al. 2023

Journal of Psychosocial Oncology Research &Amp; Practice

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Background: Fear of cancer recurrence (FCR) is often described as the most distressing consequence of cancer and has a negative impact on quality of life. There have been few investigations into the FCR in patients with sarcomas. We sought to explore the patient's FCR after a sarcoma diagnosis to determine when these fears were presented and the strategies patients used to address these fears. Methods: This was a secondary analysis of qualitative semi-structured interview data from patients with sarcoma, as part of a study to develop a patient-reported outcome measure. This study included 121 patients from across the United Kingdom aged 13–82 years. Telephone and face-to-face interviews focused on the experiences of living with and beyond a sarcoma diagnosis, based on the domains of quality of life (physical, emotional, and social well-being). A secondary analysis was performed using the Common-Sense Model. Results: The following four key themes were identified: triggers for FCR (symptoms and events), discussion of FCR, consequences of FCR (negative impact on quality of life), and strategies used to deal with FCR. Conclusion: Patients with sarcoma reported a FCR at different stages of treatment and how these fears played a role in their daily lives. Despite these experiences, the identification and management of FCR have not been reported as a core component of routine clinical practice.

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Barriers and facilitators to self-management in people living with a lower-grade glioma

Rimmer,

Balla,

Dutton

et al. 2024

J Cancer Surviv

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Purpose Self-management can have clinical and quality-of-life benefits. However, people with lower-grade gliomas (LGG) may face chronic tumour- and/or treatment-related symptoms and impairments (e.g. cognitive deficits, seizures), which could influence their ability to self-manage. Our study aimed to identify and understand the barriers and facilitators to self-management in people with LGG. Methods We conducted semi-structured interviews with 28 people with LGG across the United Kingdom, who had completed primary treatment. Sixteen participants were male, mean age was 50.4 years, and mean time since diagnosis was 8.7 years. Interviews were audio-recorded and transcribed. Following inductive open coding, we deductively mapped codes to Schulman-Green et al.’s framework of factors influencing self-management, developed in chronic illness. Results Data suggested extensive support for all five framework categories (‘Personal/lifestyle characteristics’, ‘Health status’, ‘Resources’, ‘Environmental characteristics’, ‘Healthcare system’), encompassing all 18 factors influencing self-management. How people with LGG experience many of these factors appears somewhat distinct from other cancers; participants described multiple, often co-occurring, challenges, primarily with knowledge and acceptance of their incurable condition, the impact of seizures and cognitive deficits, transport difficulties, and access to (in)formal support. Several factors were on a continuum, for example, sufficient knowledge was a facilitator, whereas lack thereof, was a barrier to self-management. Conclusions People with LGG described distinctive experiences with wide-ranging factors influencing their ability to self-manage. Implications for cancer survivors These findings will improve awareness of the potential challenges faced by people with LGG around self-management and inform development of self-management interventions for this population.

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“You either sink or you swim, and you're better off swimming”: A qualitative study exploring the self-management experiences of soft tissue sarcoma survivors

Cited by 6 publications

References 51 publications

Betreuung durch eine Advanced Practice Nurse: Erfahrungen von Patient_innen mit Sarkom und Angehörigen

Betreuung durch eine Advanced Practice Nurse: Erfahrungen von Patient_innen mit Sarkom und Angehörigen

Experiences of fear of recurrence in patients with sarcoma

Barriers and facilitators to self-management in people living with a lower-grade glioma

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