‘Still living with it even though it's gone’: Using interpretive phenomenological analysis to explore shared experiences of living with and beyond breast, prostate, and colorectal cancer

Boutillier, Clair Le; Urch, Catherine; King, Alex; Barry, Claire; Mansfield, Louise; Archer, Stephanie

doi:10.1016/j.ejon.2021.102067

Cited by 6 publications

(3 citation statements)

References 49 publications

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“…The sharing of cancer experiences can be ambiguous due to the subjective nature of how events are processed. Indeed, patients who have already undergone surgery and/or pharmacological treatments share their emotional experiences, which may foster a sense of hope and compassion for other patients with early-stage PCa [ 33 , 34 ], although this may not be sufficient to enhance awareness of the disease’s mental health risks, symptoms, and feasible treatments. In addition, the videos aimed at patients have greater Understandability compared to content addressed to Healthcare Workers, but there are no major differences in GQS.…”

Section: Discussionmentioning

confidence: 99%

Mental Health of Prostate Cancer Patients: Content Review on YouTubeTM

Muzii

Bello

Carraturo

et al. 2023

IJERPH

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The aim of this study is to evaluate YouTube™ content in terms of the quality of information available about prostate cancer (PCa) in relation to incidence, symptomatology, and potential treatments for patients’ mental health. We searched on YouTube™ for terms related to mental health combined with those relating to prostate cancer. Tools for audio–visual-content PEMAT A/V, Global Quality Score, and DISCERN score were applied for the assessment of videos’ quality. A total of 67 videos were eligible. Most of the analyzed YouTube™ videos were created by physicians (52.2%) in contrast to other author categories (48.8%). According to the PEMAT A/V, the median score for Understandability was 72.7% and the overall median score for Actionability was 66.7%; the median DISCERN score was 47, which correspond to a fair quality. Only videos focusing on the topic “Psychological Effects and PCa treatment” were significantly more accurate. The General Quality Score revealed that the majority of YouTube™ videos were rated as “generally poor” (21, 31.3%) or “poor” (12, 17.9%). The results suggest that the content of YouTube™ videos is neither exhaustive nor reliable in the current state, illustrating a general underestimation of the mental health of prostate cancer patients. A multidisciplinary agreement to establish quality standards and improve communication about mental health care is needed.

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Section: Discussionmentioning

confidence: 99%

Mental Health of Prostate Cancer Patients: Content Review on YouTubeTM

Muzii

Bello

Carraturo

et al. 2023

IJERPH

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“… 6 We then conducted a study to explore the shared experience of living with and beyond breast, prostate or colorectal cancer and identified three superordinate themes: (1) the cancer shock, (2) managing cancer and getting through and (3) getting over cancer. 7 These themes can be accommodated by the ARC framework, reinforcing the usefulness of a framework for services.…”

Section: Problemmentioning

confidence: 98%

Improving personalised care and support planning for people living with treatable-but-not-curable cancer

Le Boutillier,

Jeyasingh-Jacob,

Jones

et al. 2023

BMJ Open Qual

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People living with treatable-but-not-curable (TbnC) cancer encounter cancer-related needs. While the NHS long-term plan commits to offering a Holistic Needs Assessment (HNA) and care plan to all people diagnosed with cancer, the content, delivery and timing of this intervention differs across practice. Understanding how people make sense of their cancer experience can support personalised care. A conceptual framework based on personal narratives of living with and beyond cancer (across different cancer types and all stages of the disease trajectory), identified three interlinked themes: Adversity, Restoration and Compatibility, resulting in the ARC framework.Our aim was to use the ARC framework to underpin the HNA to improve the experience of personalised care and support planning for people living with TbnC cancer. We used clinical work experience to operationalise the ARC framework and develop the intervention, called the ARC HNA, and service-level structure, called the ARC clinic. We sought expert input on the proposed content and structure from patients and clinicians through involvement and engagement activities. Delivered alongside standard care, the ARC HNA was piloted with patients on the TbnC cancer (myeloma and metastatic breast, prostate or lung) pathway, who were 6–24 months into their treatment. Iterations were made to the content, delivery and timing of the intervention based on user feedback.Fifty-one patients received the intervention. An average of 12 new concerns were identified per patient, and 96% of patients achieved at least one of their goals. Patients valued the space for reflection and follow-up, and clinicians valued the collaborative approach to meeting patients’ supportive care needs. Compared with routine initial HNA and care plan completion rates of 13%, ARC clinic achieved 90% with all care plans shared with general practitioners. The ARC clinic adopts a novel and proactive approach to delivering HNAs and care plans in a meaningful and personalised way.

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“…IPA has origins in psychology and is theoretically grounded in hermeneutics, phenomenology, and idiographic approaches. The method is specifically suited to investigate the similarities and differences in the lived experiences of individuals who share a complex and emotionally charged life experience, such as undergoing tumor screening; IPA has been used successfully in other studies on lived experiences of cancer (Le Boutillier et al, 2022;Maguire et al, 2014;McGeechan et al, 2018). We closely followed the recommendations published by Smith et al (2022) in the most recent edition of their guide to IPA.…”

Section: Me Thodsmentioning

confidence: 99%

Lived experiences of undergoing regular tumor screening in patients with multiple endocrine neoplasia types 1 and 2 (MEN1/MEN2)

Haneveld

Valk

Leeuwaarde

2023

Journal of Genetic Counseling

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Targeted screening programs for individuals with an increased risk for cancer have become increasingly available. Patients with multiple endocrine neoplasia (MEN), rare genetic conditions associated with the development of tumors in the endocrine glands, undergo intensive surveillance from an early age. Quantitative research has shown that patients with MEN experience fear of disease occurrence in themselves and their family members. However, little is known about the role that intensive, lifelong screening plays in the lives of individuals. This study investigates the lived experiences of patients with MEN undergoing regular tumor screening through an interpretative phenomenological analysis of interviews with 12 patients with MEN1, MEN2A, or MEN2B syndrome. Four experiential group themes are identified: coming to the foreground/fading into the background, relating to uncertainty, experiencing control, and familial context. Screening is characterized as an ambiguous experience that brings MEN to the foreground and may both exacerbate MEN‐related uncertainty as well as provide a sense of control over the disease. The experience of undergoing screening is strongly influenced by the familial context, as participants care for and are cared for by family members and understand their disease through familial experiences. Good care according to patients with MEN includes providing family‐centered care, addressing the impact on daily functioning and the meaning of illness, support in the interpretation of physical complaints, facilitation of patient experiences of control, and careful attunement to patient needs within a good doctor–patient relationship.

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‘Still living with it even though it's gone’: Using interpretive phenomenological analysis to explore shared experiences of living with and beyond breast, prostate, and colorectal cancer

Abstract: Title: 'Still living with it even though it's gone': Using Interpretive Phenomenological Analysis to explore shared experiences of living with and beyond breast, prostate, and colorectal cancer.

Cited by 6 publications

References 49 publications

Mental Health of Prostate Cancer Patients: Content Review on YouTubeTM

Mental Health of Prostate Cancer Patients: Content Review on YouTubeTM

Improving personalised care and support planning for people living with treatable-but-not-curable cancer

Lived experiences of undergoing regular tumor screening in patients with multiple endocrine neoplasia types 1 and 2 (MEN1/MEN2)

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