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Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.

ABSTRACT: Little is known about how parents explain to their children their risk of inheriting a gene that may cause disease in the child or in the child's future progeny. This study explored how genetic risk information is shared between family members and the factors affecting it, to ascertain the implications for children, young people and their parents to inform future service development and provision. A volunteer group of parents, children (8-11 years) and young people (12+ years) in families affected by or at risk of one of six inherited genetic conditions was interviewed. The semi-structured interviews explored the roles of family members, the language used and the self-reported psychological outcomes in a discussion on genetic risk information. The findings were analysed using grounded theory. A total of 33 families participated, which included 79 individuals. Parents often found discussing genetic risk information very difficult and emotionally painful. Discussions were not usually planned and often a major event prompted parents to finally explain genetic risks to their children; however, children usually preferred to learn about the genetic condition gradually throughout childhood. Parents identified a number of challenges they faced related to talking to children, and many thought health professionals should provide more advice to assist them in providing developmentally appropriate information. We therefore conclude that greater emphasis is required in supporting parents and children in discussing genetic risk information throughout their child's development. Open communication about genetic risks throughout childhood seemed to help children and parents cope better and come to terms with the implications of the genetic condition.

SUBMITTER: Metcalfe A

PROVIDER: S-EPMC3097166 | biostudies-other | 2011 Jun

REPOSITORIES: biostudies-other

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Project description:BackgroundRecruiting children to clinical trials is perceived to be challenging. To identify ways to optimise recruitment and its conduct, we compared how parents and practitioners described their experiences of recruitment to clinical trials.Methods and findingsThis qualitative study ran alongside four children's clinical trials in 11 UK research sites. It compared analyses of semi-structured interviews with analyses of audio-recordings of practitioner-family dialogue during trial recruitment discussions. Parents from 59 families were interviewed; 41 had participated in audio-recorded recruitment discussions. 31 practitioners were interviewed. Parents said little in the recruitment discussions contributing a median 16% of the total dialogue and asking a median of one question. Despite this, parents reported a positive experience of the trial approach describing a sense of comfort and safety. Even if they declined or if the discussion took place at a difficult time, parents understood the need to approach them and spoke of the value of research. Some parents viewed participation as an 'exciting' opportunity. By contrast, practitioners often worried that approaching families about research burdened families. Some practitioners implied that recruiting to clinical trials was something which they found aversive. Many were also concerned about the amount of information they had to provide and believed this overwhelmed families. Whilst some practitioners thought the trial information leaflets were of little use to families, parents reported that they used and valued the leaflets. However, both parties agreed that the leaflets were too long and wanted them to be more reader-friendly.ConclusionsParents were more positive about being approached to enter their child into a clinical trial than practitioners anticipated. The concerns of some practitioners, that parents would be overburdened, were unfounded. Educating practitioners about how families perceive clinical trials and providing them with 'moral' support in approaching families may benefit paediatric research and, ultimately, patients.

Project description:BackgroundThere is little research on parents' experiences of suspected adverse drug reactions in their children and hence little evidence to guide clinicians when communicating with families about problems associated with medicines.ObjectiveTo identify any unmet information and communication needs described by parents whose child had a suspected adverse drug reaction.MethodsSemi-structured qualitative interviews with parents of 44 children who had a suspected adverse drug reaction identified on hospital admission, during in-patient treatment or reported by parents using the Yellow Card Scheme (the UK system for collecting spontaneous reports of adverse drug reactions). Interviews were conducted face-to-face or by telephone; most interviews were audiorecorded and transcribed. Analysis was informed by the principles of the constant comparative method.ResultsMany parents described being dissatisfied with how clinicians communicated about adverse drug reactions and unclear about the implications for their child's future use of medicines. A few parents felt that clinicians had abandoned their child and reported refusing the use of further medicines because they feared a repeated adverse drug reaction. The accounts of parents of children with cancer were different. They emphasised their confidence in clinicians' management of adverse drug reactions and described how clinicians prospectively explained the risks associated with medicines. Parents linked symptoms to medicines in ways that resembled the established reasoning that clinicians use to evaluate the possibility that a medicine has caused an adverse drug reaction.ConclusionClinicians' communication about adverse drug reactions was poor from the perspective of parents, indicating that improvements are needed. The accounts of parents of children with cancer indicate that prospective explanation about adverse drug reactions at the time of prescription can be effective. Convergence between parents and clinicians in their reasoning for linking children's symptoms to medicines could be a starting point for improved communication.

Project description:BACKGROUND:Early intervention and conversation about a child's weight may offer an important chance of success in reducing weight and implementing a healthier lifestyle. This review explores the most effective ways to notify parents and children about the child's weight as well as their preferences and experiences around weight notification. METHODS:We systematically searched nine databases for relevant primary research. Records were independently screened by two authors. We extracted data into a form designed for this review. Effect data was analysed using narrative synthesis and qualitative data using a best-fit framework synthesis. We assessed our confidence in the evidence using GRADE and GRADE-CERQual. RESULTS:Studies of effect found that the format of feedback made little or no difference in parents attending further treatment, recognising their child as overweight or obese, reactions to the way the weight notification is given, motivation for lifestyle change, understanding how to reduce the risk of overweight, or taking any action. However, parents receiving feedback with motivational interviewing have somewhat greater satisfaction with the way the healthcare provider supports them. Qualitative studies found that parents had clear preferences for the format, timing, content and amount of information they wanted to receive in relation to both the weighing process and weight notification. They also had clear preferences for how they wanted health care providers to interact and communicate with them and their children. Both parents and children often felt that they were not receiving enough information and worried about how their results would be kept private. Many parents experienced an emotional response when told about their child's weight ranging from positive, disbelief and negative feelings. Those who reacted with disbelief or negatively were less likely to accept their child's weight status and/or act upon the notification letter. No studies reported results for children who were underweight. CONCLUSIONS:Based on these qualitative results people working with weight assessment and notification programs should consider parents' preferences when developing feedback formats, considering the mode of feedback they are going to use and provide parents and children with tailored feedback and personalized follow up once a child is identified as overweight or obese.

Project description:BACKGROUND:Communication skills (CS) are vital for doctors. Indeed, as the most important element of consultations, are highly valued by patients. CS are core, teachable skills, however, have not been widely taught in South Asian medical schools, unlike their western counterparts. Patan Academy of Health Sciences, is one of the first in Nepal to have CS central to its' aims and curriculum. CS are taught from the first weeks of medical school and re-enforced during preclinical study (first 2 years). Our study seeks to explore students' perceptions and experiences of CS teaching in this South Asian, Nepal context. METHODS:This study is a qualitative evaluation of a CS course in Nepal, exploring the experiences and perceptions of participants. The study aims to also identify aspects that were helpful or not for student learning and areas for potential development. A purposive sample of twenty: second, fourth and Intern year students was selected for interview. Data were collected through audio recorded semi-structured interviews following a piloted schedule. Interview transcripts were manually coded and thematically analysed. Codes were arranged into themes and subthemes. RESULTS:The two main themes: 1. Positivity 2. Experiential learning. Results demonstrate participants' positive perceptions of CS teaching: believing it is important, effective, relevant and valuable for personal development. Participants identified experiential learning features as valuable for CS acquisition. Intern students recognised CS relevance and requested expanding teaching to clinical years,incorporating challenging communication scenarios. DISCUSSION:This study shows that PAHS' CS course is well perceived and valuable to learners. Experiential learning is powerful for CS development. Expansion of formal, structured CS teaching through all years in a spiral curriculum, should be considered. Violence towards doctors in South Asia is increasing. Students recognised CS teaching's significance in addressing this. CONCLUSION:CS teaching,still in its' infancy in South Asia, is a pressing issue for medical educators here. Our study provides evidence it is well perceived with positive impacts in this context, particularly when employing experiential learning. Medical schools in south Asia should be encouraged to incorporate and strengthen their CS teaching curriculum. .

Project description:BackgroundTooth decay has a significant impact on children, their families and wider society. The dental consultation provides an opportunity to prevent tooth decay by engaging in an effective oral health conversation with parents and children. However, there is limited literature which explores how these oral health conversations are delivered, received, and understood.AimTo explore the common facilitators of delivering oral health advice from dental teams, parents' and children's experiences, to identify and inform practical recommendations for clinical practice.MethodThe current paper used a qualitative supplementary analysis to reanalyse data of existing published studies by applying a different research question. Qualitative focus groups were undertaken following a semi-structured interview guide with 27 dental team members (dentists, dental nurses, practice managers and receptionists), 37 parents and 120 children (aged 7-10 years old) in the northern region of England. Thematic analysis informed the identification of themes and aggregation of findings.ResultsThree overarching themes were developed: (1) An engaging and personalised dental visit for parents and children; (2) Dental teams, parents and children working collaboratively to improve oral health habits; and (3) Recommending appropriate oral health products. Many parents and children had little recollection of any preventive oral health conversations when visiting the dentist. Practical solutions were identified by different stakeholders to facilitate three-way, personalised, non-judgemental and supportive oral health conversations. Adopting these innovative approaches will help to enable parents and their children to adopt and maintain appropriate oral health behaviours.ConclusionUnderstanding the context and triangulating the experiences of stakeholders involved in preventive oral health conversations for young children is an essential step in co-designing a complex oral health intervention. This study has provided recommendations for dental practices and wider paediatric health care services. Furthermore, the findings have informed the design of a complex oral health intervention called "Strong Teeth".

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Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.

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