Angela Fenwick

Parent-child communication about sexual and reproductive health in rural Tanzania: Implications for young people's sexual health interventions

BackgroundMany programmes on young people and HIV/AIDS prevention have focused on the in-school and channeled sexual and reproductive health messages through schools with limited activities for the young peoples families. The assumption has been that parents in African families do not talk about sexual and reproductive health (SRH) with their children. These approach has had limited success because of failure to factor in the young persons family context, and the influence of parents. This paper explores parent-child communication about SRH in families, content, timing and reasons for their communication with their children aged 14-24 years in rural Tanzania.MethodsThis study employed an ethnographic research design. Data collection involved eight weeks of participant observation, 17 focus group discussions and 46 in-depth interviews conducted with young people aged 14-24 years and parents of young people in this age group. Thematic analysis was conducted with the aid of NVIVO 7 software.ResultsParent-child communication about SRH happened in most families. The communication was mainly on same sex basis (mother-daughter and rarely father-son or father-daughter) and took the form of warnings, threats and physical discipline. Communication was triggered by seeing or hearing something a parent perceived negative and would not like their child to experience (such as a death attributable to HIV and unmarried young persons pregnancy). Although most young people were relaxed with their mothers than fathers, there is lack of trust as to what they can tell their parents for fear of punishment. Parents were limited as to what they could communicate about SRH because of lack of appropriate knowledge and cultural norms that restricted interactions between opposite sex.ConclusionsDue to the consequences of the HIV pandemic, parents are making attempts to communicate with their children about SRH. They are however, limited by cultural barriers, and lack of appropriate knowledge. With some skills training on communication and SRH, parents may be a natural avenue for channeling and reinforcing HIV/AIDS prevention messages to their children.

Ambulatory oxygen: why do COPD patients not use their portable systems as prescribed? A qualitative study

BackgroundPatients with COPD on long term oxygen therapy frequently do not adhere to their prescription, and they frequently do not use their ambulatory oxygen systems as intended. Reasons for this lack of adherence are not known. The aim of this study was to obtain in-depth information about perceptions and use of prescribed ambulatory oxygen systems from patients with COPD to inform ambulatory oxygen design, prescription and management.MethodsA qualitative design was used, involving semi-structured face-to-face interviews informed by a grounded theory approach. Twenty-seven UK community-dwelling COPD patients using NHS prescribed ambulatory systems were recruited. Ambulatory oxygen systems comprised cylinders weighing 3.4 kg, a shoulder bag and nasal cannulae.ResultsParticipants reported that they: received no instruction on how to use ambulatory oxygen; were uncertain of the benefits; were afraid the system would run out while they were using it (due to lack of confidence in the cylinder gauge); were embarrassed at being seen with the system in public; and were unable to carry the system because of the cylinder weight. The essential role of carers was also highlighted, as participants with no immediate carers did not use ambulatory oxygen outside the house.ConclusionsThese participants highlighted previously unreported problems that prevented them from using ambulatory oxygen as prescribed. Our novel findings point to: concerns with the lack of specific information provision; the perceived unreliability of the oxygen system; important carer issues surrounding managing and using ambulatory oxygen equipment. All of these issues, as well as previously reported problems with system weight and patient embarrassment, should be addressed to improve adherence to ambulatory oxygen prescription and enhance the physical and social benefits of maintaining mobility in this patient group. Increased user involvement in both system development and service provision planning, could have avoided many of the difficulties highlighted by this study.

Defining and managing incidental findings in genetic and genomic practice

The rapidly declining costs and increasing speeds of whole-genome analysis mean that genetic testing is undergoing a shift from targeted approaches to broader ones that look at the entire genome. As whole-genome technologies gain widespread use, questions about the management of so-called incidental findings—those unrelated to the question being asked—need urgent consideration. In this review, we bring together current understanding and arguments about (1) appropriate terminology, (2) the determination of clinical utility and when to disclose incidental findings, (3) the differences in management and disclosure in clinical, research and commercial contexts and (4) ethical and practical issues about familial implications and recontacting those tested. We recommend that greater international consensus is developed around the disclosure and management of incidental findings, with particular attention to when, and how, less clear-cut results should be communicated. We suggest that there is no single term that captures all the issues around these kinds of findings and that different terms may, therefore, need to be used in different settings. We also encourage the use of clear consent processes, but suggest that the absence of consent should not always preclude disclosure. Finally, we recommend further research to identify ways to implement the use of a genome output as a resource, accessible over time, to facilitate appropriate disclosure and recontact when the significance of a previously unclear incidental finding is clarified.

Genetic medicine and incidental findings: it is more complicated than deciding whether to disclose or not

Purpose:The aim of this study was to explore the clinical management of incidental findings. Advances in the speed and sensitivity of genetic technologies have not only improved the diagnostic rate but also result in an increase in unanticipated diagnoses. Recent debate on such “incidental findings” has considered whether or not to actively search for and, then, disclose incidental findings. In our experience, many incidental findings need to be investigated in family members before their clinical significance can be assessed. This adds complexity to the debate about disclosure.Methods:Using anonymized clinical examples, we illustrate the downstream implications when a result reveals an incidental abnormality of potential clinical significance that is not related to the reasons for doing the test.Results:Our examples illustrate that the determination of clinical significance may require participation of family members in both testing and surveillance.Conclusion:The need to investigate multiple relatives in order to decide whether or not a finding is clinically significant has implications for consent and disclosure practices. Communication with, and care for, relatives who have no reason to suspect particular diagnoses is a challenge for any health-care service. These costs also need to be taken into account as genetic testing enters mainstream medicine.Genet Med 15 11, 896–899.Genetics in Medicine (2013); 15 11, 896–899. doi:10.1038/gim.2013.165

Health-care professionals' responsibility to patients' relatives in genetic medicine: a systematic review and synthesis of empirical research.

Purpose:The extent of the responsibility of health-care professionals (HCPs) to ensure that patients’ relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.Methods:Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs’ responsibility to relatives with respect to disclosure.Results:Health-care professionals generally felt a responsibility to patients’ relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.Conclusion:We argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290–301.

‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine

In genetic medicine, a patients diagnosis can mean their family members are also at risk, raising a question about how consent and confidentiality should function in clinical genetics. This question is particularly pressing when it is unclear whether a patient has shared information. Conventionally, healthcare professionals view confidentiality at an individual level and ‘disclosure without consent’ as the exception, not the rule. The relational joint account model, by contrast, conceptualises genetic information as confidential at the familial level and encourages professionals to take disclosure as the default position. In this study, we interviewed 33 patients about consent and confidentiality and analysed data thematically. Our first theme showed that although participants thought of certain aspects of genetic conditions—for example, the way they affect day-to-day health—as somewhat personal, they perceived genetic information—for example, the mutation in isolation—as familial. Most thought these elements were separable and thought family members had a right to know the latter, identifying a broad range of harms that would justify disclosure. Our second theme illustrated that participants nonetheless had some concerns about what, if any, implications there would be of professionals treating such information as familial and they emphasised the importance of being informed about the way their information would be shared. Based on these results, we recommend that professionals take disclosure as the default position, but make clear that they will treat genetic information as familial during initial consultations and address any concerns therein.

Are guidelines for genetic testing of children necessary

There is now a plethora of guidance on the genetic testing of children. This paper explores the recommendation that childhood testing for adult on-set conditions should be delayed until the child can make up their own mind. It analyses the underpinning arguments used to support this position and asks whether, given some of the problems with these, the guidelines are really necessary.

Healthcare professionals’ and patients’ perspectives on consent to clinical genetic testing: moving towards a more relational approach

BackgroundThis paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients.MethodsWe draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service (data collected 2013–2015). We explore two aspects of consent: first, how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process.ResultsOur findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision.ConclusionsA more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed.

A more fitting term in the incidental findings debate: one term does not fit all situations.

A more fitting term in the incidental findings debate: one term does not fit all situations

Genetic testing of children: the need for a family perspective.

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