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"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening.

ABSTRACT: As genome sequencing technology advances, research is needed to guide decision-making about what results can or should be offered to patients in different clinical settings. We conducted three focus groups with individuals who had prior preconception genetic testing experience to explore perceived advantages and disadvantages of genome sequencing for preconception carrier screening, compared to usual care. Using a discussion guide, a trained qualitative moderator facilitated the audio-recorded focus groups. Sixteen individuals participated. Thematic analysis of transcripts started with a grounded approach and subsequently focused on participants' perceptions of the value of genetic information. Analysis uncovered two orientations toward genomic preconception carrier screening: "certain" individuals desiring all possible screening information; and "hesitant" individuals who were more cautious about its value. Participants revealed valuable information about barriers to screening: fear/anxiety about results; concerns about the method of returning results; concerns about screening necessity; and concerns about partner participation. All participants recommended offering choice to patients to enhance the value of screening and reduce barriers. Overall, two groups of likely users of genome sequencing for preconception carrier screening demonstrated different perceptions of the advantages or disadvantages of screening, suggesting tailored approaches to education, consent, and counseling may be warranted with each group.

SUBMITTER: Schneider JL

PROVIDER: S-EPMC4726717 | biostudies-other | 2016 Feb

REPOSITORIES: biostudies-other

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"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening.

Schneider Jennifer L JL Goddard Katrina A B KA Davis James J Wilfond Benjamin B Kauffman Tia L TL Reiss Jacob A JA Gilmore Marian M Himes Patricia P Lynch Frances L FL Leo Michael C MC McMullen Carmit C

Journal of genetic counseling 20150621 1

As genome sequencing technology advances, research is needed to guide decision-making about what results can or should be offered to patients in different clinical settings. We conducted three focus groups with individuals who had prior preconception genetic testing experience to explore perceived advantages and disadvantages of genome sequencing for preconception carrier screening, compared to usual care. Using a discussion guide, a trained qualitative moderator facilitated the audio-recorded f ...[more]

PMID: 26093606

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Project description:BackgroundHealthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms (chronic Lyme disease, CLD), potentially causing these patients to feel misunderstood or neglected by the healthcare system. This study is the first to use a combined medical and communication science approach, and aims to assess patients' experiences with CLD & CLD-related care, identify themes and repertories in these patients' narrations, and provide potential ways to improve communication with them.MethodsInformed by the principles of 'clean language', we conducted focus groups with self-identified CLD patients (N = 15). We asked participants about their experiences with CLD and CLD-related healthcare. We performed thematic analyses using a bottom-up approach based in discourse analysis. We also sought to identify specific types of verbalizations (repertoires) across themes.ResultsParticipants thematised a heterogeneous set of CLD-associated symptoms, which they frequently labelled as 'invisible' to others. Their illness significantly affected their daily lives, impacting their work, social activities, relationships with loved ones, hobbies and other means of participating in society. Negative experiences with healthcare providers were near-universal, also in patients with short-lived CLD-associated symptoms. Verbalizations were notable for frequent use of communicative modes that implicitly create common ground between participants and that give a certain validity to personal experiences (impersonal 'you' and other forms of presupposition).ConclusionCentral themes found in CLD patients' communication are 1. the experience of significant symptoms, 2. for which adequate relief is only rarely found from conventional medical practitioners, and 3. that are largely invisible to the outside world. Verbalizing these themes, patients use various repertoires for their shared experiences, such as a feeling of abandonment or not being heard by the medical system, feelings of loss with respect to their previous health, and the idea that they might have been better off had they been diagnosed sooner. Working with these repertoires will enable healthcare providers to establish a shared perspective with their CLD patients, thus engaging in more fruitful doctor-patient communication. We hypothesize that these findings are not unique to CLD, but may also be applicable to other conditions with an uncertain aetiology, such as Long COVID.

Project description:BackgroundAlthough clinical empathy - the ability of a physician to understand a patient's illness experience, communicate this understanding and act collaboratively to create a treatment plan - provides substantial benefits to both physicians and patients, medical students typically experience a decline in empathy during training. The primary objective of this study was to generate a model of clinical empathy grounded in the perspectives of people with chronic illness living in Canada, to promote empathy-focused curricular development in Canadian medical education.MethodsWe conducted a qualitative focus group study using a constructivist grounded theory approach. We recruited adults (age ≥ 18 yr) with chronic illness who had recently seen a physician in Canada from virtual support groups. Six semistructured virtual focus groups with 3-5 participants each were scheduled between June and September 2021. We coded the transcripts using the constant comparative method, allowing for the construction of an overarching theory.ResultsTwenty patients (17 women and 3 men) participated in the focus groups; 1 group had 2 participants because 1 participant failed to appear. The majority of participants (14 [70%]) had at least a college degree. The mean rating for overall satisfaction with the Canadian health care system was 5.4/10.0 (median 5.0). The emergent theory showed that the perceived presence of physician empathy engendered positive internal processing by patients, leading to increased health care efficacy and enhanced mental health outcomes. Negative patient processing in response to the perceived absence of empathy led to reduced quality of health care delivery (e.g., ineffective referrals and more appointments), increased use of health care resources, disruptions in patients' personal lives, and negative physical and mental health outcomes.InterpretationClinical empathy can have life-altering impacts on patients, and its absence may increase resource use. As empathy involves understanding patients' lived experiences, any valid intervention to improve clinical empathy must be informed by patient perspectives.

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"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening.

Publications

"Is It Worth Knowing?" Focus Group Participants' Perceived Utility of Genomic Preconception Carrier Screening.

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