Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The “Lives at Risk Study”

Rapport, Frances; Khanom, Ashrafunnesa; Doel, Marcus A.; Hutchings, Hayley; Bierbaum, Mia; Hogden, Anne; Shih, Patti; Braithwaite, Jeffrey; Clement, Clare

doi:10.1177/1049732317730569

Cited by 11 publications

(25 citation statements)

References 49 publications

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“…Another common visual approach is photo-elicitation, which asks for feedback to images. In photo-elicitation projects, such as the Lives at Risk Study highlighted in Rapport et al (2017), study participants are responding to visual and text stimuli, which is most often produced by the researchers (15). The researchers’ image selection guides and influences the conversation.…”

Section: Methodsmentioning

confidence: 99%

Pre‐surgical, surgical and post‐surgical experiences of weight loss surgery patients: a closer look at social determinants of health

et al. 2018

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Using a novel qualitative approach, Photovoice, researchers assessed social, psychological, physical and economic barriers encountered by patients of weight loss surgery. Applying the Photovoice approach and Williams' theory of narrative reconstruction for qualitative interviewing, the research team set out to investigate the bariatric patient experience from pre-surgery to hospitalization to post-surgery. Fifteen participants were given digital cameras and asked to take photographs that represented their weight loss journeys. Photographs and qualitative interviews were used to theorize the role played by comorbidities, social determinants of health, provider communication experiences and understanding of insurance coverage in patient outcomes. Several themes emerged from the interviews and photographs including themes centred around: (i) racial/ethnic standards of beauty; (ii) gender expectations; (iii) comorbidities, depression/disordered eating and obesity discrimination and (iv) financial hardship impacting adherence. Photographs also illuminated the impact of hospital and state-wide policies on patient lives. Results suggest that Photovoice may be a useful adjunct to standard-of-care to help patients identify barriers, and to identify shortcomings in health services. Additional screening tools for gender- and income-related barriers (and concomitant referrals to support services) provide an opportunity to improve patient care and reduce post-operative readmissions.

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Section: Methodsmentioning

confidence: 99%

Pre‐surgical, surgical and post‐surgical experiences of weight loss surgery patients: a closer look at social determinants of health

et al. 2018

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“…Even though risk is expressed in terms that are clinical (impacting on a person's physical health) patients can also experience risk in ways that are non‐clinical (impacting on their quality of life) or in terms of psychosocial implications (impacting on their relationship and mental health) . Risk communication in this study builds on our previous work in understanding how risk is discussed with patients, and expressed, in breast cancer …”

Section: Introductionmentioning

confidence: 94%

“…16 Risk communication in this study builds on our previous work in understanding how risk is discussed with patients, and expressed, in breast cancer. 17,19 2 | ME THOD…”

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confidence: 99%

Appraising risk in active surveillance of localized prostate cancer

Hogden

Churruca

Rapport

et al. 2019

Health Expectations

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ObjectivesMen diagnosed with low‐risk prostate cancer are typically eligible for active surveillance of their cancer, involving monitoring for cancer progression and making judgements about the risks of prostate cancer against those of active intervention. Our study examined how risk for prostate cancer is perceived and experienced by patients undergoing active surveillance with their clinicians, how risk is communicated in clinical consultations, and the implications for treatment and care.MethodParticipants were nine patients and three clinicians from a university hospital urology clinic. A staged, qualitative, multi‐method data collection approach was undertaken, comprising: observations of consultations; patient and clinician interviews; and patient surveys. The three data sets were analysed separately using thematic analysis and then integrated to give a comprehensive view of patient and clinician views.ResultsThirty data points (eight patient surveys; 10 observations of consultations between patients and clinicians; 10 patient interviews; and two clinician interviews) combined to create a detailed picture of how patients perceived and appraised risk, in three themes of “Making sense of risk”, “Talking about risk” and “Responding to risk”.ConclusionEffective risk communication needs to be finely tuned and timed to individual patient's priorities and information requirements. A structured information exchange process that identifies patients' priorities, and details key moments in risk assessment, so that complexities of risk are discussed in ways that are meaningful to patients, may benefit patient care. These findings could inform the development of patient‐centric risk assessment procedures and service delivery models in prostate cancer care more broadly.

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“…refinement of the method led to group analysis workshops [36] where shared understandings were noted across working groups.…”

Section: Level One: the Individual Patient Modelmentioning

confidence: 99%

Determinants of health and wellbeing in refractory epilepsy and surgery: The Patient Reported, ImpleMentation sciEnce (PRIME) model

Rapport

Shih

Faris

et al. 2019

Epilepsy & Behavior

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This paper offers a new way of understanding the course of a chronic, neurological condition through a comprehensive model of patient-reported determinants of health and wellbeing: The Patient Reported ImpleMentation sciEnce (PRIME) model is the first model of its kind to be based on patient-driven insights for the design and implementation of initiatives that could improve tertiary, primary, and community healthcare services for patients with refractory epilepsy, and has broad implications for other disorders; PRIME focuses on: patient-reported determinants of health and wellbeing, pathways through care, gaps in treatment and other system delays, patient need and expectation, and barriers and facilitators to high-quality care provision; PRIME highlights that in the context of refractory epilepsy, patients value appropriate, clear, and speedy referrals from primary care practitioners and community neurologists to specialist healthcare professionals based in tertiary epilepsy centers. Many patients also want to share in decisions around treatment and care, and gain a greater understanding of their debilitating disease, so as to find ways to self-manage their illness more effectively and plan for the future. Here, PRIME is presented using refractory epilepsy as the exemplar case, while the model remains flexible, suitable for adaptation to other settings, patient populations, and conditions; PRIME comprises six critical levels: 1) The Individual Patient Model; 2) The Patient Relationships Model; 3) The Patient Care Pathways Model; 4) The Patient Transitions Model; 5) The Pre-and Postintervention Model; and 6) The Comprehensive Patient Model. Each level is dealt with in detail, while Levels 5 and 6 are presented in terms of where the gaps lie in our current knowledge, in particular in relation to patients' journeys through healthcare, system intersections, and individuals adaptive behavior following resective surgery, as well as others' views of the disease, such as family members.

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Women’s Perceptions of Journeying Toward an Unknown Future With Breast Cancer: The “Lives at Risk Study”

Cited by 11 publications

References 49 publications

Pre‐surgical, surgical and post‐surgical experiences of weight loss surgery patients: a closer look at social determinants of health

Pre‐surgical, surgical and post‐surgical experiences of weight loss surgery patients: a closer look at social determinants of health

Appraising risk in active surveillance of localized prostate cancer

Determinants of health and wellbeing in refractory epilepsy and surgery: The Patient Reported, ImpleMentation sciEnce (PRIME) model

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