“I don&apos;t know if I understood the whole process from the beginning”: A photo-elicitation exploration of the experience of mastectomy and breast reconstruction decision making

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Abstract

Objectives

Policy and guidance assume that reconstruction following mastectomy will have physical and psychological benefits, however research has disputed whether this is always the case. This study aimed to explore mastectomy experiences and reconstruction decision making.

Methods

Semi-structured interviews about self-curated participant photographs of the breast cancer experience were analysed using interpretative phenomenological analysis (IPA).

Results

Three themes were developed: ‘Life before mastectomy’; ‘I don't know if I understood the whole process from the beginning’; and getting back to ‘normal’.

Conclusions

Decisions regarding reconstruction were influenced by needs of others, and surgeons' communication and behaviour and negative experiences were prominent. Over time participants came to terms with physical and psychological impacts of mastectomy reporting re-finding themselves alongside acceptance of their post mastectomy bodies. However, many participants were living with the fear that their cancer may one day return. Communication skills training for healthcare professionals should be a priority to ensure decisions made result in the best possible outcomes for patients.

Innovation

Photo-elicitation is a novel research method enabling rich investigation of mastectomy experiences. Self-curation of images enables patient-led discussions about mastectomy experience and illustrates the importance of life context. Photographs may have value within clinical training to facilitate understanding of patient experiences.

Highlights

•

Reconstruction decision making following breast cancer mastectomy is complex.
•

Photo-elicitation empowers participants to lead discussions about experience.
•

Participants discussed identity, decision making, and returning to normality.
•

Surgeons influenced decisions and may unwittingly put pressure on patients.
•

Improved surgeon-patient communication and use of decision-aids is needed.

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Most cited references 27

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Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain

Jonathan Smith, Mike Osborn (2015)

Interpretative phenomenological analysis (IPA) is a qualitative approach which aims to provide detailed examinations of personal lived experience. It produces an account of lived experience in its own terms rather than one prescribed by pre-existing theoretical preconceptions and it recognises that this is an interpretative endeavour as humans are sense-making organisms. It is explicitly idiographic in its commitment to examining the detailed experience of each case in turn, prior to the move to more general claims. IPA is a particularly useful methodology for examining topics which are complex, ambiguous and emotionally laden. Pain is a prime exemplar of such a phenomenon: elusive, involving complex psycho-somatic interactions and difficult to articulate. In addition to the 1998 article, published in this Special Issue, two further papers are suggested that the interested reader might wish to look out for.

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Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision.

Edwin G Wilkins, L Goldfarb, C Lowery … (2004)

This study explored patient preferences for involvement in the breast cancer treatment decision and concordance between patients' and physicians' views on decisional role. The impact of demographic and psychosocial characteristics on patients' decisional role was also examined. Women with stage I or II breast cancer who were candidates for either mastectomy or lumpectomy were recruited from a university breast cancer treatment center. Patient interviews were obtained before meeting the surgical oncologist and again after the treatment decision was made but before surgical intervention. Clinician responses were obtained after the consultation. The 101 participants were generally white (97%), married (80%), and well-educated. They reported moderate levels of depression and anxiety but good social support and self-efficacy in communicating with their physician. Before the consultation, 47% of women reported a preference for shared decision making; afterwards, 61% felt they had primary responsibility for the decision. Only 38% of patients agreed with the physician's assessment of how the treatment decision was made. In regression analyses, higher education was significantly associated with patients' preferred level of control (P = .01). There was a trend toward women with greater self-efficacy desiring more active decisional roles (P = .08). Patient preference for decision making did not impact time in the patient-physician encounter, but more influence did increase satisfaction. Limited concordance between patient preference and patient perception and between patient and physician perception in how the treatment decision was made suggests the need for better communication between patient and clinician during a critical treatment encounter for breast cancer patients. Copyright 2004 American Society of Clinical Onocology

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Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction.

Joanne Sheehan, Kerry A. Sherman, Thomas Lam … (2007)

Little is known of the psychosocial factors associated with decision regret in the context of breast reconstruction following mastectomy for breast cancer treatment. Moreover, there is a paucity of theoretically-based research in the area of post-decision regret. Adopting the theoretical framework of the Monitoring Process Model (Cancer 1995;76(1):167-177), the current study assessed the role of information satisfaction, current psychological distress and the moderating effect of monitoring coping style to the experience of regret over the decision to undergo reconstructive surgery. Women (N=123) diagnosed with breast cancer who had undergone immediate or delayed breast reconstruction following mastectomy participated in the study. The majority of participants (52.8%, n=65) experienced no decision regret, 27.6% experienced mild regret and 19.5% moderate to strong regret. Bivariate analyses indicated that decision regret was associated with low satisfaction with preparatory information, depression, anxiety and stress. Multinominal logistic regression analysis showed, controlling for mood state and time since last reconstructive procedure, that lower satisfaction with information and increased depression were associated with increased likelihood of experiencing regret. Monitoring coping style moderated the association between anxiety and regret (beta=-0.10, OR=0.91, p=0.01), whereby low monitors who were highly anxious had a greater likelihood of experiencing regret than highly anxious high monitors. Copyright (c) 2006 John Wiley & Sons, Ltd.

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Author and article information

Contributors

Amy E. Burton

Journal

Journal ID (nlm-ta): PEC Innov

Journal ID (iso-abbrev): PEC Innov

Title: PEC Innovation

Publisher: Elsevier

ISSN (Electronic): 2772-6282

Publication date PMC-release: 12 June 2023

Publication date Collection: 15 December 2023

Publication date (Electronic): 12 June 2023

Volume: 3

Electronic Location Identifier: 100178

Affiliations

Department of Psychology, Health, Science and Wellbeing, Staffordshire University, United Kingdom

Author notes

[* ]Corresponding author at: Staffordshire Centre for Psychological Research, Health, Science and Wellbeing, Staffordshire University, United Kingdom. amy.burton@ 123456Staffs.ac.uk

Article

Publisher Item ID: S2772-6282(23)00058-4 Publisher ID: 100178

DOI: 10.1016/j.pecinn.2023.100178

PMC ID: 10782110

PubMed ID: 38213757

SO-VID: aa457231-8384-4857-aba6-27c9208fc270

License:

This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

History

Date received : 2 December 2022

Date revision received : 1 June 2023

Date accepted : 7 June 2023

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“I don't know if I understood the whole process from the beginning”: A photo-elicitation exploration of the experience of mastectomy and breast reconstruction decision making

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Abstract

Objectives

Methods

Results

Conclusions

Innovation

Highlights

Related collections

Karger: Oncology

Most cited references 27

Interpretative phenomenological analysis as a useful methodology for research on the lived experience of pain

Patient-physician concordance: preferences, perceptions, and factors influencing the breast cancer surgical decision.

Association of information satisfaction, psychological distress and monitoring coping style with post-decision regret following breast reconstruction.

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