Background
In 2020, the number of new cancer cases was estimated at 20 490 862 worldwide up from 18.1 million in 2018 and 14.1 million in 2012. Since the 2000s, cancer treatments have significantly improved, allowing either a cure or control of the disease. Patients share their experience of the disease and use supportive care solutions through involvement in patient associations and online forums. All the associations were built on the principle of “peer support,” which is based on mutual aid between people who suffer or have suffered from the same somatic or psychological illness or had the same life experience.
This experiential knowledge can be explored to understand the role of peers and associations in the appropriation of their cancer.
Methods
A qualitative phenomenological study was undertaken through semi-structured interviews with 12 participants. Interviews were audio-recorded, transcribed verbatim, then analyzed by means of triangulation up to the point of theoretical saturation by a semio-pragmatic method.
Results
Four categories emerged: (1) “Transforms a painful experience into a positive one. It mobilizes the human values of sharing, love, and humility, which facilitates resilience”; (2) “The characteristics of the association, a non-medical place between people sharing a common destiny, resonates with patients’ needs and improves their well-being”; (3) “The association transforms the patients’ experiences by facilitating engagement that leads to a patient-expert (empowerment)”; and (4) “Understanding what is happening to them is soothing, reassuring, because patients’ concerns need to be heard and their care understood”.
Conclusions
This study highlights patient associations can serve as the mediator of NPI and facilate the empowerment of breast cancer patients.
Practice implications
Educating health professionals in initial and continuing education about non-pharmacological interventions will be a major issue. Teaching the patient-centred approach to health professionals is one of the priorities in initial and continuing medical education.
Practitioners must know that women do not consider their first pelvic examination as another medical examination. This intimate examination is considered an important rite of passage to adulthood and life as a woman. The experience of their first pelvic examination will impact their subsequent gynaecological follow-up.
Objective: To understand the perceptions and attitudes of general practitioners (GPs) regarding children with an Autism Spectrum Disorder (ASD). Design: Phenomenological qualitative study. Setting: Three focus groups, clinical settings. Subjects: French GPs. Main outcome measures: 22 GPs took part in the study divided among three focus groups. They were volunteers to participate. Data were transcribed verbatim and analysed using a grounded theory data analysis, completed with a semiopragmatic analysis. Results: Representing autism as a strange disorder in the doctor-patient relationship, GPs perceive a loss of sensory contact with the child with ASD that prevents the usual professional relationship between doctor and patient. They disengage themselves from monitoring the subject, concentrating on supporting the family. According to them, their role was to refer the patient to a specialist in the case of clinical intuition, but they have several reasons to give themselves time, all the more so because once the diagnosis is made, they lose sight of the patient and their place in the care pathway. GPs expressed the need to acquire skills and strategies to communicate with the autistic child to recover their role and values. Conclusion: GPs are disconcerted by the idea of communicating with children with ASD, as it takes them out of their usual professional benchmarks. They need communication tools that enable them to regain their role and relational value of the patient-centred approach. Beyond this, the question of the 'ethics of care' of the patient with a joint attention disorder is raised.
KEY POINTSGPs are disconcerted with the idea of communicating with children with ASD. GPs need communication tools that enable them to regain their role and relational value of the patient-centred approach. The question of the 'ethics of care' of the patient with a joint attention disorder is raised.
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