Parents' motivations, concerns and understanding of genome sequencing: a qualitative interview study.
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ABSTRACT:
SUBMITTER: Lewis C
PROVIDER: S-EPMC7316711 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:OBJECTIVE:To explore parents' perspectives, concerns and experiences of the management of lower respiratory tract infections (LRTIs) in children in primary care. DESIGN:Qualitative semistructured interview study. SETTING:UK primary care. PARTICIPANTS:23 parents of children aged 6?months to 10 years presenting with LRTI in primary care. METHOD:Thematic analysis of semistructured interviews (either in person or by telephone) conducted with parents to explore their experiences and views on their children being prescribed antibiotics for LRTI. RESULTS:Four major themes were identified and these are perspectives on: (1) infection, (2) antibiotic use, (3) the general practitioner (GP) appointment and (4) decision making around prescribing. Symptomatic relief was a key concern: the most troublesome symptoms were cough, breathing difficulty, fever and malaise. Many parents were reluctant to use self-care medication, tended to support antibiotic use and believed they are effective for symptoms, illness duration and for preventing complications. However, parental expectations varied from a desire for reassurance and advice to an explicit preference for an antibiotic prescription. These preferences were shaped by: (1) the age of the child, with younger children perceived as more vulnerable because of their greater difficulty in communicating, and concerns about rapid deterioration; (2) the perceived severity of the illness; and (3) disruption to daily routine. When there was disagreement with the GP, parents described feeling dismissed, and they were critical of inconsistent prescribing when they reconsult. When agreement between the parent and the doctor featured, parents described a feeling of relief and legitimation for consulting, feeling reassured that the illness did indeed warrant a doctor's attention. CONCLUSION:Symptomatic relief is a major concern for parents. Careful exploration of expectations, and eliciting worries about key symptoms and impact on daily life will be needed to help parents understand when a no antibiotic recommendation or delayed antibiotic recommendation is made.
| S-EPMC5640115 | biostudies-literature
Project description:BackgroundNearly 40% of parents with children aged 6 to 17 months consult a healthcare professional when their child has a high temperature. Clinical guidelines recommend temperature measurement in these children, but little is known about parents' experiences of and beliefs about temperature measurement. This study aimed to explore parents' concerns and beliefs about temperature measurement in children.MethodsSemi-structured qualitative interviews were conducted from May 2017 to June 2018 with 21 parents of children aged 4 months to 5.5 years, who were purposively sampled from the METRIC study (a method comparison study comparing non-contact infrared thermometers to axillary and tympanic thermometers in acutely ill children). Data analysis followed a thematic approach.ResultsParents described the importance of being able to detect fever, in particular high fevers, and how this then influenced their actions. The concept of "accuracy" was valued by parents but the aspects of performance which were felt to reflect accuracy varied. Parents used numerical values of temperature in four main ways: determining precision of the thermometer on repeat measures, detecting a "bad" fever, as an indication to administer antipyretics, or monitoring response to treatment. Family and social networks, the internet, and medical professionals and resources, were all key sources of advice for parents regarding fever, and guiding thermometer choice.ConclusionsTemperature measurement in children has diagnostic value but can either empower, or cause anxiety and practical challenges for parents. This represents an opportunity for both improved communication between parents and healthcare professionals, and technological development, to support parents to manage febrile illness with greater confidence in the home.
| S-EPMC7791980 | biostudies-literature
Project description:Whole exome/genome sequencing (WES/WGS) is increasingly offered to ostensibly healthy individuals. Understanding the motivations and concerns of research participants seeking out personal WGS and their preferences regarding return-of-results and data sharing will help optimize protocols for WES/WGS. Baseline interviews including both qualitative and quantitative components were conducted with research participants (n=35) in the HealthSeq project, a longitudinal cohort study of individuals receiving personal WGS results. Data sharing preferences were recorded during informed consent. In the qualitative interview component, the dominant motivations that emerged were obtaining personal disease risk information, satisfying curiosity, contributing to research, self-exploration and interest in ancestry, and the dominant concern was the potential psychological impact of the results. In the quantitative component, 57% endorsed concerns about privacy. Most wanted to receive all personal WGS results (94%) and their raw data (89%); a third (37%) consented to having their data shared to the Database of Genotypes and Phenotypes (dbGaP). Early adopters of personal WGS in the HealthSeq project express a variety of health- and non-health-related motivations. Almost all want all available findings, while also expressing concerns about the psychological impact and privacy of their results.
| S-EPMC4795230 | biostudies-literature
Project description:BackgroundDigital health-tracking tools are changing mental health care by giving patients the ability to collect passively measured patient-generated health data (PGHD; ie, data collected from connected devices with little to no patient effort). Although there are existing clinical guidelines for how mental health clinicians should use more traditional, active forms of PGHD for clinical decision-making, there is less clarity on how passive PGHD can be used.ObjectiveWe conducted a qualitative study to understand mental health clinicians' perceptions and concerns regarding the use of technology-enabled, passively collected PGHD for clinical decision-making. Our interviews sought to understand participants' current experiences with and visions for using passive PGHD.MethodsMental health clinicians providing outpatient services were recruited to participate in semistructured interviews. Interview recordings were deidentified, transcribed, and qualitatively coded to identify overarching themes.ResultsOverall, 12 mental health clinicians (n=11, 92% psychiatrists and n=1, 8% clinical psychologist) were interviewed. We identified 4 overarching themes. First, passive PGHD are patient driven-we found that current passive PGHD use was patient driven, not clinician driven; participating clinicians only considered passive PGHD for clinical decision-making when patients brought passive data to clinical encounters. The second theme was active versus passive data as subjective versus objective data-participants viewed the contrast between active and passive PGHD as a contrast between interpretive data on patients' mental health and objective information on behavior. Participants believed that prioritizing passive over self-reported, active PGHD would reduce opportunities for patients to reflect upon their mental health, reducing treatment engagement and raising questions about how passive data can best complement active data for clinical decision-making. Third, passive PGHD must be delivered at appropriate times for action-participants were concerned with the real-time nature of passive PGHD; they believed that it would be infeasible to use passive PGHD for real-time patient monitoring outside clinical encounters and more feasible to use passive PGHD during clinical encounters when clinicians can make treatment decisions. The fourth theme was protecting patient privacy-participating clinicians wanted to protect patient privacy within passive PGHD-sharing programs and discussed opportunities to refine data sharing consent to improve transparency surrounding passive PGHD collection and use.ConclusionsAlthough passive PGHD has the potential to enable more contextualized measurement, this study highlights the need for building and disseminating an evidence base describing how and when passive measures should be used for clinical decision-making. This evidence base should clarify how to use passive data alongside more traditional forms of active PGHD, when clinicians should view passive PGHD to make treatment decisions, and how to protect patient privacy within passive data-sharing programs. Clear evidence would more effectively support the uptake and effective use of these novel tools for both patients and their clinicians.
| S-EPMC10450536 | biostudies-literature
Project description:To obtain the views of bereaved parents about their interactions with healthcare staff when their baby died just before or during labour. Qualitative in-depth interview study, following an earlier national survey. All interviews took place during 2011, either face-to-face or on the telephone. Data analysis was informed by the constant comparative technique from grounded theory. Every National Health Service (NHS) region in the UK was represented. Bereaved parents who had completed an e-questionnaire, via the website of Sands (Stillbirth and Neonatal Death Society). Of the 304 survey respondents who gave provisional consent, 29 families were approached to take part, based on maximum variation sampling and data saturation. 22 families (n=25) participated. Births took place between 2002 and 2010. Specific practices were identified that were particularly helpful to the parents. Respondents talked about their interactions with hospital staff as having profound effects on their capacity to cope, both during labour and in the longer term. The data generated three key themes: 'enduring and multiple loss': 'making irretrievable moments precious'; and the 'best care possible to the worst imaginable'. The overall synthesis of findings is encapsulated in the meta-theme 'One chance to get it right.' This pertains to the parents and family themselves, clinical and support staff who care for them directly, and the NHS organisations that indirectly provide the resources and governance procedures that may (or may not) foster a caring ethos. Positive memories and outcomes following stillbirth depend as much on genuinely caring staff attitudes and behaviours as on high-quality clinical procedures. All staff who encounter parents in this situation need to see each meeting as their one chance to get it right.
| S-EPMC3586079 | biostudies-literature
Project description:To explore doctors' understanding of individualisation of drug treatments, and identify the methods used to achieve individualisation. In this exploratory study, we used in-depth qualitative interviews with doctors to gain insight into their understanding of the term 'individualised treatments' and the methods that they use to achieve it. 16 general practitioners in 6 rural and 10 urban practices, 2 geriatricians and 2 clinical academics were recruited. Primary and secondary care in South West of England. Understanding of individualisation varied between doctors, and their initial descriptions of individualisation were not always consistent with subsequent examples of the patients they had treated. Understandings of, and methods used to achieve, individualised treatment were frequently discussed in relation to making drug treatment decisions. Few doctors spoke of using strategies to support patients to individualise their own treatments after the consultation. Despite its widespread use, variation in doctors' understanding of the term individualisation highlights the need for it to be defined. Efforts are needed to develop effective methods that would offer a structured approach to support patients to manage their treatments after consultations.
| S-EPMC3657639 | biostudies-literature
Project description:BackgroundThere remains public misconception about antibiotic use and resistance. Preschool children are at particular risk of receiving unnecessary antibiotics because they commonly present in primary care and many childhood infections are self-limiting.ObjectivesThe aim of our study was to explore parents' perceptions and understanding of antibiotic use and resistance in the context of their young child with an acute respiratory tract infection (RTI) and to explore strategies parents would find acceptable to minimize antibiotic resistance for their families.MethodsSemi-structured interviews were conducted with 23 parents of preschool children who recently had an acute RTI across greater Oxfordshire, UK (2016-17 winter). We explored their beliefs about antibiotics, understanding of antibiotic resistance and views on current public antibiotic awareness campaigns at the time. Thematic analysis was used to analyse the data.ResultsParents had a sense of optimism and considered their families to be at low risk of antibiotic resistance because their families were 'low users' of antibiotics. Very few parents considered antibiotic resistance as a possible harm of antibiotics. Parents thought they were acting morally responsibly by following campaign messages. They wanted future campaigns to have a relevant, accessible message for families about the impact of antibiotic resistance.ConclusionsFuture communication about the potential impact of unnecessary antibiotic use and antibiotic resistance needs to focus on outcomes that parents of young children can relate to (e.g. infection recurrence) and in a format that parents will engage with (e.g. face-to-face dissemination at playgroups and parent/child community events) to make a more informed decision about the risks and benefits of antibiotics for their child.
| S-EPMC6524473 | biostudies-literature
Project description:BackgroundElectronic patient portals have become common and offer many potential benefits for patients' self-management of health care. These benefits could be especially important for older adult patients dealing with significant chronic illness, many of whom have caregivers, such as a spouse, adult child, or other family member or friend, who help with health care management. Patient portals commonly contain large amounts of personal information, including diagnoses, health histories, medications, specialist appointments, lab results, and billing and insurance information. Some health care systems provide proxy accounts for caregivers to access a portal on behalf of a patient. It is not well known how much and in what way caregivers are using patient portals on behalf of patients and whether patients see any information disclosure risks associated with such access.ObjectiveThe objective of this study was to examine how older adult patients perceive the benefits and risks of proxy patient portal access by their caregivers.MethodsWe conducted semistructured interviews with 10 older adult patients with chronic illness. We asked them about their relationship with their caregivers, their use of their patient portal, their caregiver's use of the portal, and their perceptions about the benefits and risks of their caregiver's use of the portals. We also asked them about their comfort level with caregivers having access to information about a hypothetical diagnosis of a stigmatized condition. Two investigators conducted a thematic analysis of the qualitative data.ResultsAll patients identified caregivers. Some had given caregivers access to their portals, in all cases by sharing log-in credentials, rather than by setting up an official proxy account. Patients generally saw benefits in their caregivers having access to the information and functions provided by the portal. Patients generally reported that they would be uncomfortable with caregivers learning of stigmatized conditions and also with caregivers (except spouses) accessing financial billing information.ConclusionsPatients share their electronic patient portal credentials with caregivers to receive the benefits of those caregivers having access to important medical information but are unaware of all the information those caregivers can access. Better portal design could alleviate these unwanted information disclosures.
| S-EPMC6240158 | biostudies-literature
Project description:IntroductionPatients living with biliary tract cancer (BTC) experience a decline in health-related quality of life (HRQoL). This study aimed to obtain a comprehensive understanding of the patient experience of BTC-related signs/symptoms and the impacts of these on daily functioning and HRQoL.MethodsPatients with BTC participated in qualitative semi-structured concept elicitation interviews. Signs/symptoms and impacts of BTC were initially explored by targeted literature searches and interviews with five clinicians. Patient interviews were transcribed and coded using qualitative research software. Concept saturation was assessed over five interview waves. A sign/symptom or impact was defined as "salient" if mentioned by ≥ 50% of patients, with a mean disturbance rating of ≥ 5 (0-10 scale). A conceptual model of the patient experience of BTC-related signs/symptoms and impacts was produced.ResultsTwenty-three patients from the USA (78% women; median age: 54 years), diagnosed as having early (n = 3), locally advanced (n = 11) or metastatic (n = 9) disease, were interviewed. Sixty-six signs/symptoms and 12 impacts were identified. Of these, 46 signs/symptoms and 8 impacts were not identified from the targeted literature or clinician interviews. Concept saturation was reached by the fourth of five interview waves. Fourteen disease-related signs/symptoms (including fatigue/lack of energy, abdominal pain, lack of appetite, insomnia and diarrhoea) and three impacts (physical, emotional and cognitive impacts) were deemed "salient". The conceptual model included 50 signs/symptoms and 12 impacts.ConclusionPatients with BTC reported a range of signs/symptoms and impacts that negatively affect daily functioning and HRQoL.
| S-EPMC8594245 | biostudies-literature
Project description:PurposeThis study aimed to elucidate the patient experience of hepatocellular carcinoma (HCC) to guide patient-centered outcome measurement in drug development.MethodsPatients with HCC participated in qualitative interviews to elicit disease-related signs/symptoms and impacts, using discussion guides developed from literature searches and discussions with oncologists. Interview participants rated the disturbance of their experiences (0-10 scale). A conceptual model was developed and mapped against patient-reported outcome (PRO) instruments identified from database reviews.ResultsInterviews were conducted with 25 individuals with HCC (68% were men; median age: 63 years; 12% Barcelona clinic liver cancer (BCLC) stage A; 32% stage B; and 56% stage C) in the USA. Fifty-one HCC-related concepts were identified from the interviews and were grouped into eight sign/symptom categories (eating behavior/weight changes; extremities [arms, legs]; fatigue and strength; gastrointestinal; pain; sensory; skin; other) and four impact categories (emotional; physical; cognitive function; other) for the conceptual model. The most prevalent and disturbing experiences across the disease stages were fatigue/lack of energy and emotional impacts such as frustration, fear, and depression. Abdominal pain and skin-related issues were particularly common and disturbing in individuals with HCC stage C. The EORTC QLQ-C30 and HCC18 were identified as commonly used PRO instruments in HCC studies and captured the relevant signs/symptoms associated with the patient experience.ConclusionPatients with HCC reported a range of signs/symptoms and impacts that negatively affect daily functioning and quality of life. Including PRO measures in HCC clinical trials can provide meaningful patient perspectives during drug development.
| S-EPMC8847294 | biostudies-literature