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Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.

ABSTRACT: BACKGROUND:We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents. METHODS:Focus groups were held in Toronto and Calgary, including both in-person and remote participants (via videoconference). Discussions centred on experience with retinoblastoma, knowledge of the disease and engagement with research. Focus group transcripts were evaluated by inductive thematic analysis. RESULTS:Four focus groups (3 in Toronto, 1 in Calgary) were held with a collective total of 34 participants. Retinoblastoma had a substantial impact on the life of participants, but overall, patients reported being able to adapt and persevere. Experiential knowledge of retinoblastoma was identified as distinct from the theoretical knowledge held by their clinicians. Participants indicated they often acted as a knowledge broker, communicating information about the cancer to their social networks. Participants were willing to engage in research as partners, but recognized barriers such as time and appropriate training. CONCLUSIONS:Patients view their experiential knowledge of retinoblastoma as valuable to improving care and directing research. There is a unique role for research engagement in meeting the educational needs of patients.

SUBMITTER: Moses C

PROVIDER: S-EPMC7321723 | biostudies-literature | 2020 Jun

REPOSITORIES: biostudies-literature

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Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.

Moses Catherine C Flegg Kaitlyn K Dimaras Helen H

Health expectations : an international journal of public participation in health care and health policy 20200229 3

<h4>Background</h4>We launched a patient engagement strategy to facilitate research involvement of the retinoblastoma (childhood eye cancer) community in Canada. To inform our strategy, we aimed to uncover the experiences with retinoblastoma, knowledge of retinoblastoma and research engagement among retinoblastoma survivors and parents.<h4>Methods</h4>Focus groups were held in Toronto and Calgary, including both in-person and remote participants (via videoconference). Discussions centred on expe ...[more]

PMID: 32113195

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Project description:BackgroundClinical research nurses (CRNs) have first-hand experience with ethical challenges and play a crucial role in upholding ethical conduct and adherence to the principles of informed consent in clinical research. This study explores the ethical challenges encountered by CRNs in the process of obtaining informed consent for clinical research.MethodsA qualitative exploratory design. Semistructured interviews (n = 14) were conducted with diverse CRNs in Sweden. These CRNs covered a wide range of research fields, including pharmaceutical and academic studies, interventions, and observational research, spanning different trial phases, patient categories, and medical conditions. The interviews were analysed using inductive qualitative content analysis.ResultsThe analysis identified three main categories: (i) threats to voluntariness, (ii) measures to safeguard voluntariness, and (iii) questionable exclusion of certain groups. CRNs face challenges due to time constraints, rushed decisions, information overload, and excessive reliance on physicians' recommendations. Overestimating therapeutic benefits in stages of advanced illness emerged as a risk to voluntariness. CRNs outlined proactive solutions, such as allowing ample decision-making time and offering support, especially for terminally ill patients. Concerns were also voiced about excluding certain demographics, such as those with language barriers or cognitive impairments.ConclusionsIn conclusion, upholding ethical research standards requires recognising various factors affecting patient voluntariness. Researchers and CRNs should prioritise refining the informed consent process, overcoming participation challenges, and aligning scientific rigour with personalised care. Additionally, a concerted effort is vital to meet the diverse needs of patient populations, including equitable inclusion of individuals with language barriers or cognitive limitations in clinical studies. These findings have significant implications for enhancing the ethics of clinical research and advancing person-centred care.

Project description:BackgroundSexual dysfunction is common in midlife women and can have a significant negative impact on quality of life. Although treatments exist, there is little research on which sexual function outcomes and treatments midlife women prefer.AimTo better understand the sexual function outcomes that were most important to sexually active women 45 to 60 years old and the types of treatments they would prefer from individual interviews and focus groups.MethodsTwenty individual interviews and three focus groups (N = 39) were led by a trained facilitator, audio recorded, and transcribed. Two investigators developed a codebook, and the primary investigator coded all data. A second investigator coded five randomly selected interviews to ensure intercoder reliability. Codes relating to outcomes and treatment preferences were examined to identify central themes.ResultsThe mean age was 52.8 years (range = 45-59). When asked what they would want a sexual dysfunction treatment to do, women sought solutions to specific sexual problems: low desire, vaginal pain and dryness, and decreased arousal or ability to achieve orgasm. However, when asked about the most important aspect of their sex life, most women indicated emotional outcomes, such as enhanced intimacy with their partner, were most important to them. Most women preferred behavioral over pharmaceutical treatments, citing concerns about side effects. These women felt that behavioral treatments might be better equipped to address physical and psychological aspects of sexual problems.Clinical implicationsThis study highlights the importance of considering not only physical but also emotional outcomes when evaluating and treating sexual dysfunction in midlife women. It also emphasizes the importance of developing behavioral treatments in addition to pharmaceutical treatments.Strengths and limitationsBy using a qualitative approach, this study allowed women the time and space to speak their own words about their experiences with sexuality at midlife. In addition, different racial and ethnic groups and menopausal statuses were represented. Limitations include limited generalizability, as is true for most qualitative research. In addition, although most women did endorse sexual problems, we did not exclude women with no sexual complaints.ConclusionsMidlife women value physical and emotional outcomes with regard to sexual function. Many midlife women in this sample expressed a preference for behavioral approaches over pharmaceutical approaches for the treatment of sexual dysfunction. Thomas HN, Hamm M, Hess R, et al. Patient-Centered Outcomes and Treatment Preferences Regarding Sexual Problems: A Qualitative Study Among Midlife Women. J Sex Med 2017;14:1011-1017.

Project description:ObjectivesTo explore the negative recollections of prostate cancer patients regarding the attitudes and language used by the doctors in delivering their diagnoses in Japan, in order to improve patient-centred communication.Design and settingThis is a qualitative secondary analysis of the prostate cancer narrative data from the Database of Individual Patients' Experiences-Japan archives. A thematic analysis was conducted regarding negative recollections of doctors' words/attitudes when delivering a cancer diagnosis. Recruitment was based on maximum variation sampling. Participants were recruited from medical institutions, patient associations and through media advertisements.ParticipantsMen with a diagnosis of prostate cancer (n=51).FindingsOf the 51 participants, 17 had negative recollections of the doctors' words/attitudes during the delivery of the cancer diagnosis. After thematic analysis, 11 categories emerged: 'Surprised by the abrupt disclosure of the diagnosis', 'Displeased by the direct disclosure of the diagnosis to the patient in the absence of family members', 'Unable to accept the doctor's negative words in the explanations', 'Unable to understand the doctor's technical jargon', 'Distrust due to failure in diagnosis based on previous examinations', 'Aggrieved at the doctor's unwillingness to allow questions', 'Dissatisfied with explanations involving facts only', 'Indignant over the unexpected disclosure of life expectancy', 'Unable to accept the doctor's blame for the delay in the initial hospital visit', 'Uncomfortable with the usage of inappropriate metaphors' and 'Pessimistic thoughts despite optimistic explanations'.ConclusionsIt is clear that patients have recollections of a variety of negative experiences regarding the words/attitudes of their doctors at the time they received their prostate cancer diagnosis. Thus, the use of narrative data would facilitate the appropriate application of commonly used guidelines for the delivery of cancer diagnoses tailored to individual patients in clinical practice.

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Project description:BackgroundCare continuity by a dedicated, well-trained primary care physician (PCP) has shown to improve health outcomes of patients with non-communicable diseases (NCDs). In Singapore's fee-for-service primary care system, patients can choose to consult any PCP in either a public (polyclinic), private (General Practitioners/ GP), or both types of clinics, resulting in potential fragmented care. Decision-making by patients in selecting their preferred PCP remains unclear. This study aims to explore the personal factors influencing the choice of PCP among patients with NCDs in primary care.MethodsThis qualitative research study was conducted in a typical polyclinic. In-depth interviews were conducted on patients with NCDs. Purposive sampling was implemented to enrol patients who had previously consulted PCPs in polyclinics and GP clinics, garnering their perspectives and experiences of care received from both providers. Interviews were audio-recorded, transcribed, and audited. Data was coded and analysed using thematic content analysis to identify emerging themes. The physician-specific factors which influence patients' decision-making of PCP selection are presented here.ResultsTwenty-one Asian patients aged 38 to 82 years were interviewed. They preferred PCPs with an approachable and genuine demeanour, exhibiting empathy and compassion. They valued the PCPs' verbal, non-verbal and listening skills. Regarding professional qualities, patients wanted PCPs to demonstrate competency and a patient-centred care approach. Some selected their PCP based on compatible age and gender that they felt comfortable with. Establishing good rapport with their PCP and maintaining continuity of care were deemed as major factors in patients' PCP selection.ConclusionPatients tended to select PCPs based on their personal characteristics, interpersonal skills, professional attributes, demographics, and the physician-patient relationship. PCPs should be aware of these attributes and demonstrate them during their patient interaction. Leveraging on this enables PCPs to build rapport with their patients and maintain care continuity to optimize their health outcomes.

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Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.

Publications

Patient knowledge, experiences and preferences regarding retinoblastoma and research: A qualitative study.

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