Parents' and children's communication about genetic risk: a qualitative study, learning from families' experiences.
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ABSTRACT:
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.
| S-EPMC3134466 | biostudies-literature
Project description:Current literature is lacking in describing families' experiences in being involved in children's pain management. This study sought to understand children and their parents' experiences with pain management at a tertiary care children's hospital. Twelve child-parent dyads were recruited to participate in the study from January to August 2022. Children and their parents chose whether to be interviewed together or separately. Transcripts were analyzed using inductive, data-driven codes. Codes and themes were developed using a codebook and member-checking. Three main themes were identified: a. Painful experiences can have a significant positive or negative effect on families' lives and healthcare trajectories; b. There can be a mismatch between families' expectations of pain management and how they perceive the pain was managed; c. Families feel that they must advocate for better pain care, but often feel too intimidated to do so, or worry that their concerns will be dismissed by healthcare professionals. Families want healthcare professionals to proactively manage their children's pain, supporting the shaping of early positive memories of the child's healthcare interactions. Healthcare providers must further recognize that poorly treated pain can significantly impact families' lives and should both seek and be receptive to child and parent input for better pain care.
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Project description:This study evaluated the communication experiences of critical care nurses while caring for patients in an intensive care unit setting. We have collected qualitative data from 16 critical care nurses working in the intensive care unit of a tertiary hospital in Seoul, Korea, through two focus-group discussions and four in-depth individual interviews. All interviews were recorded and transcribed verbatim, and data were analyzed using the Colaizzi's method. Three themes of nurses' communication experiences were identified: facing unexpected communication difficulties, learning through trial and error, and recognizing communication experiences as being essential for care. Nurses recognized that communication is essential for quality care. Our findings indicate that critical care nurses should continuously aim to improve their existing skills regarding communication with patients and their care givers and acquire new communication skills to aid patient care.
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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.
| S-EPMC3468607 | biostudies-literature
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.
| S-EPMC7189728 | biostudies-literature
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".
| S-EPMC8077708 | biostudies-literature
Project description:BackgroundCommunication 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.MethodsThis 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.ResultsThe 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.DiscussionThis 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.ConclusionCS 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. .
| S-EPMC7596984 | biostudies-literature
Project description:BackgroundParents and carers supporting a family member presenting with behaviors of concern experience heightened stress. The Low Arousal Approach is a crisis management strategy which recognizes that stress, or physiological arousal, can be expressed through behaviors of concern. This approach aims to equip parents and carers to manage behaviors in a person-centered and non-confrontational way. There is a paucity of published research exploring the experiences of families applying this approach.MethodsSeventeen parents who had received training in the Low Arousal Approach were interviewed to gain their perspectives on supporting their family members using this approach.ResultsThematic analysis revealed themes relating to parental stress, which was related to external pressures, isolation, family stress, and challenges in their caring role. They described encountering negative narratives relating to self-criticism and negative judgments from others. Training in the Low Arousal Approach was related to being empowered through access to evidence, increased confidence, and increased ability to advocate for their family member's needs. Low Arousal was described as a "lifestyle" that enabled increased coping for the family unit as a whole.Discussion/conclusionFindings indicate that it is vitally important to recognize the views of parents and carers, and these are equally as important as the views of professionals. We must understand parents' and carers' needs in order to provide adequate support.
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Project description:Clinical exome sequencing (CES) is an established method for genetic diagnosis and is used widely in clinical practice. Studies of the parental experience of CES, which inform guidelines for best practices for genetic counseling, have been predominately comprised of White, non-Latinx participants. The aim of this study was to explore the parental experiences of CES in a Latinx community and to understand how their experiences are influenced by culture and language. We conducted semi-structured interviews in English and Spanish with 38 Latinx parents of children who had CES. Some of the themes that emerged were common to those previously identified, including a sense of obligation to pursue testing and a mixed emotional response to their child's results. Parents who had lower education level and/or received care from a provider who did not share their language had more confusion about their child's CES results and greater dissatisfaction with care compared with parents who had higher education level and/or received care from a provider who spoke their language. We also found evidence of hampered shared decision making and/or disempowered patient decision making regarding CES testing. Our data suggest unique needs for Latinx families having CES, particularly those who are non-English speaking when an interpreter is used. Our data support the value in continuing to take steps to improve culturally competent care by improving interpretation services and recruiting and training a genetic workforce that is ethnically, linguistically, and culturally diverse.
| S-EPMC8409321 | biostudies-literature
Project description:BackgroundInsights into the immunological role of the gastrointestinal tract in autoimmune conditions have led to the investigation of diet as a potential adjunctive treatment option for juvenile idiopathic arthritis (JIA). The specific carbohydrate diet (SCD) has shown promising results. However, studies on participants' experiences of dietary interventions in JIA are rare. In this study we investigated the experiences of children and parents' who had participated in a four-week intervention with SCD aiming to examine the potential anti-inflammatory effects.ObjectivesTo conduct a qualitative evaluation exploring children's and parents' experiences of the dietary intervention, how they navigated challenges, and their support requirements.MethodsSemi-structured interviews were conducted with 12 children and 15 parents from 13 families, who were interviewed individually and together. The transcripts were analysed using systematic text condensation.ResultsMost participants interviewed found the intervention beneficial, with 12 out of 13 reporting positive effects, such as reduced pain and morning stiffness, and improved gastrointestinal function. Many participants reported being willing to repeat the intervention in the current form. Despite facing challenges, all children followed the diet for one to three months, with some continuing to follow a modified version. Facing the socio-emotional consequences of adhering to the diet was challenging for children. These were handled by focusing on the positive aspects and by relying on the supportive environment available. Parents struggled with practical issues since the diet required hard work, time, and money. Areas identified as requiring additional support include finding simple, quick, and child-friendly solutions, strengthening organizational food skills such as meal planning, and preparation prior to starting the intervention regarding socio-emotional aspects.ConclusionNavigating the dietary treatment was considered challenging, practically for the parents and socio-emotionally for the children. Based on the reported challenges and participants' suggestions the intervention could be optimised by providing support and solutions in relation to the practical issues and better preparation regarding dealing with the socio-emotional consequences. Despite the difficulties, the participants reported overall positive experiences of, and attitudes towards, the current setup. Consequently, dietary interventions, such as the SCD, may be regarded as suitable targets for further research.
| S-EPMC10588234 | biostudies-literature