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Colocation of farmed shellfish in seagrass, although not permitted in some regions of the USA, has been proposed as a means to reach cobenefits of habitat and food production. Seagrass could benefit bivalves through protection from predation or abiotic stressors but conversely can reduce water flow and food delivery. At 10 farm sites in Washington state (USA), we tested the performance of Pacific oysters (Magallana (Crassostrea) gigas) grown in ground culture or off-bottom culture across a range of seagrass densities. Oysters averaged 32 m−2 and 30% shell cover on ground culture beds. Oysters in off-bottom culture showed a negative relationship between size and density across beds, consistent with growth and mortality through the crop cycle, and the largest oysters were at densities similar to ground culture. Within each farm site, ground and off-bottom beds were selected with each of three categories of seagrass (none, sparse, dense). Dense seagrass on aquaculture beds was half the density of nearby unfarmed seagrass beds. For outplanted oysters over 3–9 months, many aspects of oyster performance improved when oysters were elevated above the sediment. Relative to ground culture, off-bottom oysters had better survival (85% vs. 69%), 7% larger size, and 48% higher condition after 3 months in summer, and the survival advantages persisted over winter. Oyster survival on-bottom was especially impaired in finer sediment. No oyster performance differences were associated with seagrass, except for 9-month results, available for five of 10 farms. After 9 months at these five farms, oyster survival showed a small negative effect of dense seagrass, and shell size showed a small positive effect of sparse seagrass. Consequently, seagrass may not provide a boost to colocated intertidal shellfish, but we found little evidence of trade-offs in which maintaining seagrass would reduce yield of farmed oysters. Moving oysters out of the boundary layer and away from soft sediment improves both survival and tissue growth aspects of yield. [ABSTRACT FROM AUTHOR]

Background: The risk of adverse pregnancy outcome for women with type 1 diabetes is reduced through tight diabetes control. Most women enter pregnancy with inadequate blood glucose control. Interview studies with women suggest the concept of 'planned' and 'unplanned' pregnancies is unhelpful.Aim: To explore women's accounts of their journeys to becoming pregnant while living with type 1 diabetes.Design Of Study: Semi-structured interviews with 15 women living with pre-gestational type 1 diabetes, between 20 and 30 weeks gestation and with a normal pregnancy ultrasound scan.Setting: Four UK specialist diabetes antenatal clinics.Method: Interviews explored women's journeys to becoming pregnant and the impact of health care. Analysis involved comparison of women's accounts of each pregnancy and a thematic analysis.Results: Women's experiences of becoming pregnant were diverse. Of the 40 pregnancies described, at least one positive step towards becoming pregnant was taken by 11 women in 23 pregnancies but not in the remaining 17 pregnancies, with variation between pregnancies. Prior to and in early pregnancy, some women described themselves as experts in their diabetes but most described seeking and/or receiving advice from their usual health professionals. Three women described pre-conception counselling and the anxiety this provoked.Conclusion: For women living with type 1 diabetes each pregnancy is different. The concept of planned and unplanned pregnancy is unhelpful for designing health care. Formal preconception counselling can have unintended consequences. Those providing usual care to women are well positioned to provide advice and support to women about becoming pregnant, tailoring it to the changing needs and situation of each woman. [ABSTRACT FROM AUTHOR]

Objectives: To examine the knowledge, confidence and practice of motor neuron disease (MND) clinicians toward discussing reproductive options with people who carry a causal variant in an MND gene (both clinically affected and asymptomatic)., Methods: An online cross-sectional survey was distributed nationwide to UK MND clinicians and clinical geneticists and genetic counselors. The survey assessed respondents' understanding on reproductive medicine techniques; their confidence in discussing reproductive medicine options and their access to information resources., Results: Seventy six clinicians responded to the online survey (45 neurology clinicians and 31 clinical geneticists). MND clinicians had limited knowledge and low confidence in discussing reproductive medicine options. Geneticists were more likely to carry out reproductive genetic counseling with very few MND clinicians reporting undertaking these discussions. Further, 57% of the 45 MND clinicians surveyed reported to have never made a referral for reproductive genetic counseling. Multiple barriers to offering reproductive counseling or referral were identified including a lack of knowledge, lack of awareness of the different options, lack of clinic time and uncertainty around issues such as funding for PGT and whose responsibility it comes under., Conclusions: There is a need for training and education on reproductive options and referral for these options needs to be integrated within the health system. Developing more resources for both clinicians and patients is required as MND clinicians reported a lack of resources.

The notion of a "serious" genetic condition is commonly used in clinical contexts, laws, and policies to define and delineate both the permissibility of and, access to, reproductive genomic technologies. Yet, the notion lacks conceptual and operational clarity, which can lead to its inconsistent appraisal and application. A common understanding of the relevant considerations of "serious" is lacking. This article addresses this conceptual gap. We begin by outlining existing distinctions around the notion of "serious" that will factor into its appraisal and need to be navigated, in the context of prenatal testing and the use of reproductive genomic technologies. These include tensions between clinical care and population health; the impact of categorizing a condition as "serious"; and the role of perception of quality of life. We then propose a set of four core dimensions and four procedural elements that can serve as a conceptual tool to prompt a mapping of the features of seriousness in any given context. Ultimately, consideration of these core dimensions and procedural elements may lead to improvements in the quality and consistency of decision-making where the seriousness of a genetic condition is a pivotal component at both a policy and practice level., (© 2024. The Author(s).)

Introduction: This work describes a secondary analysis of a qualitative data set originally used to understand parent participants' preferences for the design and implementation of a screening programme for paediatric Type 1 diabetes (T1D). From this, their spontaneous preferences for peer support emerged, described here in the context of existing peer support programmes for the newly diagnosed alongside suggestions for their incorporation into screening programmes for T1D and a range of other conditions., Methods: Data were collected from semi-structured interviews conducted with parents of children aged 3-13 years to explore their expectations, perceptions and preferences of a T1D paediatric screening programme. A secondary analysis of interviews from participants who spontaneously raised preferences for peer support was used to populate a novel framework informed by NHS England's key principles for the same, namely, Shared experiences and reciprocated support, Accessibility and inclusivity and Person-centred and integrated peer support., Results: Parents in 29 of 33 interviews spontaneously described the potential value of peer support if receiving a result indicating a positive (presymptomatic T1D result) from a screening programme. Specifically, the value of 'Shared experiences and reciprocated support' in terms of emotional support and reassurance, and access to more directly interpretable and relevant information related to the condition; 'Accessibility and inclusivity' relating to access to a community of similar individuals, whether in person or online; 'Person-centred and integrated peer-support' and the need for support reflecting the changing need of the child and the integration of peer support with clinical care., Conclusions: The needs of peer support described by parents involved in T1D paediatric screening appear to be shared with those of families with children diagnosed with a range of life-altering conditions. Although the needs of peer support for paediatric screening may differ across conditions, our findings are a valuable starting point for its design both in T1D and other examples of similar population screening programmes., Patient or Public Contribution: Patients and the public have been involved throughout the design of the ELSA study and have worked with us to inform the study process. They contributed to the design and content of patient-facing materials, the content of our topic guides and the analysis and interpretation of our findings., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: Perinatal outcomes are poor among migrant women in vulnerable situations, but little is known about their health preconception. We investigated preconception health inequalities between migrant women in vulnerable situations and non-migrant women., Methods: This national cross-sectional study used data from the NHS Maternity Services Data Set (MSDS) version 1.5, incorporating NHS maternity services in England. All 652,880 women with an antenatal booking appointment between 1/4/2018 and 31/3/2019 were included. Migration category data were available for 66.2 % ( n = 432,022). Odds ratios were calculated comparing preconception indicators among probable migrants in vulnerable situations (English not their first language with complex social factors (CSF)), probable migrants not in vulnerable situations (English not their first language without CSF), probable non-migrants in vulnerable situations (English their first language with CSF) and probable non-migrants not in vulnerable situations (English their first language without CSF). CSF include recent migrants, asylum seekers, refugees, difficulty reading/speaking English; alcohol and/or drugs misuse; aged under 20; and/or experiencing domestic abuse., Findings: We identified 3.8 % (25,070 women) of the study population as probable migrants in vulnerable situations, 10.2 % (66,783 women) as probable migrants not in vulnerable situations, 5.6 % (36,433 women) as probable non-migrants in vulnerable situations, 46.5 % (303,737 women) as probable non-migrants not in vulnerable situations, and 33.8 % as having missing migration category data. Probable migrants in vulnerable situations ( n = 25,070) had over twice the odds of not taking folic acid preconception compared to probable non-migrants not in vulnerable situations (odds ratio 2.15, 95 % confidence interval 2.06-2.25). They had increased odds of previous obstetric complications and being underweight, but lower odds of physical and mental health conditions (apart from diabetes and hepatitis b), smoking and overweight or obesity., Interpretation: Inequalities exist across many preconception indicators, highlighting opportunities to improve preconception health in this population to reduce health inequalities and improve perinatal and neonatal outcomes., Funding: Medical Research Council., Competing Interests: The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: Majel McGranahan reports financial support was provided by UKRI Medical Research Council. Danielle Schoenaker reports financial support was provided by NIHR Southampton Biomedical Research Centre. Helen Duncan reports a relationship with Office for Health Improvement and Disparities that includes: employment. Debra Bick reports a relationship with MASIC foundation that includes: board membership. HD is National lead for lifecourse intelligence at the Office for Health Improvement and Disparities, Department of Health and Social Care If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2024 The Author(s).)

Background: Health economic assessments are used to determine whether the resources needed to generate net benefit from an antenatal or newborn screening programme, driven by multiple benefits and harms, are justifiable. It is not known what benefits and harms have been adopted by economic evaluations assessing these programmes and whether they omit benefits and harms considered important to relevant stakeholders., Objectives: (1) To identify the benefits and harms adopted by health economic assessments in this area, and to assess how they have been measured and valued; (2) to identify attributes or relevance to stakeholders that ought to be considered in future economic assessments; and (3) to make recommendations about the benefits and harms that should be considered by these studies., Design: Mixed methods combining systematic review and qualitative work., Systematic Review Methods: We searched the published and grey literature from January 2000 to January 2021 using all major electronic databases. Economic evaluations of an antenatal or newborn screening programme in one or more Organisation for Economic Co-operation and Development countries were considered eligible. Reporting quality was assessed using the Consolidated Health Economic Evaluation Reporting Standards checklist. We identified benefits and harms using an integrative descriptive analysis and constructed a thematic framework., Qualitative Methods: We conducted a meta-ethnography of the existing literature on newborn screening experiences, a secondary analysis of existing individual interviews related to antenatal or newborn screening or living with screened-for conditions, and a thematic analysis of primary data collected with stakeholders about their experiences with screening., Results: The literature searches identified 52,244 articles and reports, and 336 unique studies were included. Thematic framework resulted in seven themes: (1) diagnosis of screened for condition, (2) life-years and health status adjustments, (3) treatment, (4) long-term costs, (5) overdiagnosis, (6) pregnancy loss and (7) spillover effects on family members. Diagnosis of screened-for condition (115, 47.5%), life-years and health status adjustments (90, 37.2%) and treatment (88, 36.4%) accounted for most of the benefits and harms evaluating antenatal screening. The same themes accounted for most of the benefits and harms included in studies assessing newborn screening. Long-term costs, overdiagnosis and spillover effects tended to be ignored. The wide-reaching family implications of screening were considered important to stakeholders. We observed good overlap between the thematic framework and the qualitative evidence., Limitations: Dual data extraction within the systematic literature review was not feasible due to the large number of studies included. It was difficult to recruit healthcare professionals in the stakeholder's interviews., Conclusions: There is no consistency in the selection of benefits and harms used in health economic assessments in this area, suggesting that additional methods guidance is needed. Our proposed thematic framework can be used to guide the development of future health economic assessments evaluating antenatal and newborn screening programmes., Study Registration: This study is registered as PROSPERO CRD42020165236., Funding: This award was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: NIHR127489) and is published in full in Health Technology Assessment ; Vol. 28, No. 25. See the NIHR Funding and Awards website for further award information.

Aims: Identifying children at risk of type 1 diabetes allows education for symptom recognition and monitoring to reduce the risk of diabetic ketoacidosis at presentation. We aimed to explore stakeholder views towards paediatric general population screening for type 1 diabetes in the United Kingdom (UK)., Methods: Qualitative interviews were undertaken with 25 stakeholders, including diabetes specialists, policymakers and community stakeholders who could be involved in a future type 1 diabetes screening programme in the UK. A thematic framework analysis was performed using the National Screening Committee's evaluative criteria as the overarching framework., Results: Diabetic ketoacidosis prevention was felt to be a priority and proposed benefits of screening included education, monitoring and helping the family to better prepare for a future with type 1 diabetes. However, diabetes specialists were cautious about general population screening because of lack of evidence for public acceptability. Concerns were raised about the harms of living with risk, provoking health anxiety and threatening the child's right to an 'open future'. Support systems that met the clinical and psychological needs of the family living with risk were considered essential. Stakeholders were supportive of research into general population screening and acknowledged this would be a priority if an immunoprevention agent were licensed in the UK., Conclusions: Although stakeholders suggested the harms of UK paediatric general population screening currently outweigh the benefits, this view would potentially be altered if prevention therapies were licensed. In this case, an evidence-based screening strategy would need to be formulated and public acceptability explored., (© 2023 The Authors. Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK.)

The 'expressivist objection' (EO) refers to the notion that using reproductive (genetic) technologies to prevent the birth of future would-be disabled people contain, and express, a negative valuation of life with disability. Whilst the EO has received increased attention in recent years in line with rapid technological and genomic developments, there remains scant research on how EO concerns are experienced and expressed by disabled people and their families, especially within and between impairment groups. Bringing together two studies-one with adults and family members living with genetic conditions (n = 62) and one with parents of children with Down's syndrome (n = 22)-we argue that disabled people and their families variously embrace, reject or rework the EO across contexts, and yet also frequently situate it within broad support for reproductive technologies. We present three key factors that mediate responses to the EO: (1) the nature of impairment and its integration within identity; (2) social and cultural contexts relating to disability and (3) the (individual and collective) imagined futures of disabled people. In so doing, we blend the conceptual architecture of medical sociology and disability studies, arguing that this allows us to accurately illuminate the nuanced responses of disabled people and their families., (© 2022 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness.)

Background: Health economic assessments are used to determine whether the resources needed to generate net benefit from a screening programme, driven by multiple complex benefits and harms, are justifiable. We systematically identified the benefits and harms incorporated within economic assessments evaluating antenatal and newborn screening programmes., Methods: For this systematic review and thematic analysis, we searched the published and grey literature from January 2000 to January 2021. Studies that included an economic evaluation of an antenatal or newborn screening programme in an OECD country were eligible. We identified benefits and harms using an integrative descriptive analysis, and illustrated a thematic framework. (Systematic review registration PROSPERO, CRD42020165236)., Findings: The searches identified 52,244 articles and reports and 336 (242 antenatal and 95 newborn) were included. Eighty-six subthemes grouped into seven themes were identified: 1) diagnosis of screened for condition, 2) life years and health status adjustments, 3) treatment, 4) long-term costs, 5) overdiagnosis, 6) pregnancy loss, and 7) spillover effects on family members. Diagnosis of screened for condition (115 studies, 47.5%), life-years and health status adjustments (90 studies, 37.2%) and treatment (88 studies, 36.4%) accounted for most of the benefits and harms evaluating antenatal screening. The same themes accounted for most of the benefits and harms included in studies assessing newborn screening. Overdiagnosis and spillover effects tended to be ignored., Interpretation: Our proposed framework can be used to guide the development of future health economic assessments evaluating antenatal and newborn screening programmes, to prevent exclusion of important potential benefits and harms., Competing Interests: Declaration of competing interest OR-A, JF, BT and FB are members of the Foetal, Maternal and Child Health (FMCH) reference group of the UK National Screening Committee (UK NSC). ST-P is a member of the UK NSC Adult Reference Group. JF and AMS are members of the UK NSC. The remaining authors declare that they have no competing financial interests or personal relationshipts that could have appeared to influence the work reported in this paper., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

As whole genome sequencing is being considered as a tool to deliver expanded newborn screening (NBS) globally, the range of equivocal results it could produce are gaining increased attention. For cystic fibrosis (CF) screening, the use of next generation sequencing within existing UK NBS programmes would increase the number of uncertain designations returned within results, including that of Cystic Fibrosis Screen Positive Inconclusive Diagnosis (CFSPID). However, the experiences of families already living with this designation have been under-explored. This study uses in-depth interviews to explore the perspectives of sixteen parents who received positive results from CF NBS, with varying degrees of prognostic un/certainty; parents with a child diagnosed with CF (n = 6), CF carrier status (n = 3) and those with the CFSPID designation (n = 7). The biographically disruptive nature of positive NBS results-regardless of immediate relevance to the child-dominated early experiences of positive results across all groups. For those with CF, biographical reparation involved becoming 'a CF family', underscoring biological kinship bonds and reinforcing familial identity. For those with uncertain results, biographical re-calibration was more complex. Diagnostic and prognostic uncertainty posed a barrier to entry for both the 'CF world' and the 'healthy kid' world, leading parents to attempt to minimise its role, either through rejection, or re-interpretation of their child's result. Other parents, however, experienced biographical reparation more dynamically. The concept of 'genetic nomadism' captures accounts of oscillation between the two worlds; movements that were responsive to evolving health experiences, as well as social, environmental and temporal factors. Through the concept of genetic nomadism, this paper delineates both the productive, as well as divisive, nature of uncertainty for biographical reparation in the aftermath of NBS, as well as the strategies parents use to harness it, in order to successfully navigate the world with a child with an ambiguous genetic future., (Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objective: Type 1 diabetes (T1D) is the most common form of diabetes in children, accounting for 96% of cases, with 29 000 children affected in the UK. Studies have recently identified immunotherapies that safely delay the development of T1D for at least 3 years, and further therapies are in development. General population screening programs in other countries can now accurately identify children with presymptomatic T1D who can be entered into prevention studies. The UK does not have such a system in place. We aim to explore whether parents and children in the UK would want to be part of such a program of testing for T1D in the general population, how they would want to be informed and participate in such a program, and how any barriers to recruitment and participation can be addressed. Additionally, the views of stakeholders who would be involved in the testing program will be collected and analyzed., Research Design and Methods: We will interview parents/guardians and children aged 3-13 years about their views on screening for T1D. We will recruit purposefully to ensure representation across ethnicities and socioeconomic groups. Interviews will be transcribed, analyzed and used to inform iterative co-design work with additional families to address any issues raised. Similar qualitative work will be undertaken with professional stakeholders who would be involved in implementing any future screening program. Where possible, all aspects of this study will be performed remotely by phone or online to minimize infection risk., Conclusions: This qualitative study will provide the first insights into acceptability of testing and monitoring for T1D in the general population from the perspective of families and stakeholders in the UK. Co-design work will help establish the barriers and identify strategies to mitigate and overcome these issues, as an important step towards consideration of national testing for T1D., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: To explore women's and maternity care providers' experiences of birth, and the roles of (bio)medical and experiential knowledge therein., Research Design/setting: In-depth qualitative interviews were undertaken with pregnant women and new mothers (n = 14) as well as with a range of maternity care providers working for the National Health Service (n = 6) and privately (n = 7)., Findings: Trust emerged as a key concept in women's and maternity care providers' narratives. It was found that women and maternity care providers placed trust in two key areas: trust in past experiences and trust in women's innate abilities and embodied knowledge of birth., Key Conclusions: Women and maternity care providers trust and utilise both (bio)medical and experiential forms of knowledge of birth in complex ways and the value an individual ascribes to (bio)medical and/or experiential knowledge is highly subjective, and not necessarily mutually exclusive. This destabilises the notion that (bio)medical knowledge is associated with experts and experiential knowledge is associated with 'lay' people, and that these two bodies of knowledge are distinct., Implications for Practice: Trust is a key concept in maternity care. The predominance of biomedical models of birth risk reducing trust in the value of experiential based birth knowledges - both embodied and empathetic. Trust in experiential knowledge could help to facilitate woman-centred care by recognising women as valuable 'knowers' with unique insight to contribute, and not just receivers of medical knowledge. It may also help providers 'tune-in' with the women in their care if they allow their experiential knowledge to complement their (bio)medical knowledge., (Copyright © 2022. Published by Elsevier Ltd.)

Background: Many pregnancies in the UK are either unplanned or ambivalent. This review aimed to (i) explore barriers and facilitators to women choosing and accessing a preferred method of contraception in the United Kingdom, and (ii) identify opportunities for behavioural interventions based on examination of interventions that are currently available nationally., Methods: Three databases were searched, and experts contacted to identify grey literature for studies presenting barriers and facilitators to women choosing and accessing a preferred method of contraception, conducted in the UK and published between 2009 and October 2019. Information on barriers and facilitators were coded into overarching themes, which were then coded into Mechanisms of Actions (MoAs) as listed in the Theory and Techniques Tool. National interventions were identified by consulting stakeholders and coded into the Behaviour Change Wheel. The match between barriers/facilitators and intervention content was assessed using the Behaviour Change Wheel., Results: We included 32 studies and identified 46 barrier and facilitator themes. The most cited MoA was Environmental Context and Resources, which primarily related to the services women had access to and care they received. Social Influences, Beliefs about Consequences (e.g., side effects) and Knowledge were also key. The behavioural analysis highlighted four priority intervention functions (Modelling, Enablement, Education and Environmental Restructuring) that can be targeted to support women to choose and access their preferred method of contraception. Relevant policy categories and behaviour change techniques are also highlighted., Conclusions: This review highlights factors that influence women's choices and access to contraception and recommends opportunities that may be targeted for future interventions in order to support women to access preferred contraception., Registration: Protocol was registered with PROSPERO (an international database of prospectively registered systematic reviews in health and social care) in December 2019, CRD42019161156 ., (© 2021. The Author(s).)

In a context of increasing international dialogue around the appropriate means and ends of newborn screening programmes, it is critical to explore the perspectives of those directly impacted by such screening. This meta-ethnography uses a systematic review process to identify qualitative studies that focus on parents' experiences of newborn screening published in English-language academic journals from 2000 to 2019 (n = 36). The included studies represent a range of moments, outcomes, and conditions that illuminate discrete elements of the newborn screening journey. We draw on these varied studies to construct a diagram of possible newborn screening pathways and through so-doing identify a critical window of time between the signalling of a positive newborn screen and the end of the screening process. During this critical window of time, families navigate complex emotional reactions, information, and decisions. From an in-depth analysis of this data, we develop the concept of "absorptive capacity" as a lens through which to understand parents' responses to new and emerging information. Alongside this, we identify how the "concertinaing of time" - the various ways that parents experience the expansion and compression of time throughout and beyond the screening pathway - affects their absorptive capacities. This study underscores the need to move away from viewing newborn screening as a discrete series of clinical events and instead understand it as a process that can have far-reaching implications across time, space, and family groups. Using this understanding of screening as a starting point, we make recommendations to facilitate communication and support for screened families, including the antenatal provision of information to parents and accommodations for the fluctuations in parents' absorptive capacities across the screening trajectory., (Copyright © 2021 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Children from Black and South Asian ethnic groups are at risk for childhood obesity in the United Kingdom. To inform local action for childhood obesity prevention, it is crucial to explore the basis of ethnic disparities and consider the perspectives of children. This study aimed to understand cultural and contextual factors influencing childhood obesity in an ethnically diverse population using child-centred methodology., Methods: 'Draw, write and tell' interviews were held with children aged 9-10 years in Coventry, an urban, multi-ethnic city in the United Kingdom. Data were analysed thematically using framework analysis., Results: Twenty-six children participated (85% from Black or minority ethnic groups). Children's perspectives revealed universal themes around health, diet, physical activity and weight and highlighted issues specific to ethnic groups and those living in deprived areas. An underlying feature was weight-based stigmatization and group stereotyping, and an emphasis on internal factors as the cause of obesity. Children described some experiences of social disadvantage but did not regard these as a barrier to being physically active. Children identified cultural or religious practices or experiences of migration that influenced diet and physical activity., Conclusions: These findings allow a broad range of children's perspectives to inform future intervention design. In addition, the study was able to identify the many similarities and small amount of diversity in children's perspectives across ethnic groups., (© 2021 The Authors. Child: Care, Health and Development published by John Wiley & Sons Ltd.)

Objective: The mixed methods appraisal tool (MMAT) was developed for critically appraising different study designs. This study aimed to improve the content validity of three of the five categories of studies in the MMAT by identifying relevant methodological criteria for appraising the quality of qualitative, survey, and mixed methods studies., Study Design and Setting: First, we performed a literature review to identify critical appraisal tools and extract methodological criteria. Second, we conducted a two-round modified e-Delphi technique. We asked three method-specific panels of experts to rate the relevance of each criterion on a five-point Likert scale., Results: A total of 383 criteria were extracted from 18 critical appraisal tools and a literature review on the quality of mixed methods studies, and 60 were retained. In the first and second rounds of the e-Delphi, 73 and 56 experts participated, respectively. Consensus was reached for six qualitative criteria, eight survey criteria, and seven mixed methods criteria. These results led to modifications of eight of the 11 MMAT (version 2011) criteria. Specifically, we reformulated two criteria, replaced four, and removed two. Moreover, we added six new criteria., Conclusion: Results of this study led to improve the content validity of this tool, revise it, and propose a new version (MMAT version 2018)., (Copyright © 2019 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: The use of genomic sequencing techniques is increasingly being incorporated into mainstream health care. However, there is a lack of agreement on how "incidental findings" (IFs) should be managed and a dearth of research on patient perspectives., Methods: In-depth qualitative interviews were carried out with 31 patients undergoing genomic sequencing at a regional genetics service in England. Interviews explored decisions around IFs and were comparatively analyzed with published recommendations from the literature., Results: Thirteen participants opted to receive all IFs from their sequence, 12 accepted some and rejected others, while six participants refused all IFs. The key areas from the literature, (a) genotype/phenotype correlation, (b) seriousness of the condition, and (c) implications for biological relatives, were all significant; however, patients drew on a broader range of social and cultural information to make their decisions., Conclusion: This study highlights the range of costs and benefits for patients of receiving IFs from a genomic sequence. While largely positive views toward the dissemination of genomic data were reported, ambivalence surrounding genetic responsibility and its associated behaviors (e.g., duty to inform relatives) was reported by both IF decliners and accepters, suggesting a need to further explore patient perspectives on this highly complex topic area., (© 2018 The Authors. Molecular Genetics & Genomic Medicine published by Wiley Periodicals, Inc.)

As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that 'experiential knowledge of disability' plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes 'experiential knowledge of disability' and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of 'disability', 'embodied experiences of impairment' or 'embodied experiences of illness, death and bereavement' are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching 'experiential knowledge of disability' within these contexts which are able to account for the various contours of the embodied lived reality of life with 'disability'., (© The Author(s) 2013.)

With the rapid growth of online social networking for health, health care systems are experiencing an inescapable increase in complexity. This is not necessarily a drawback; self-organising, adaptive networks could become central to future health care delivery. This paper considers whether social networks composed of patients and their social circles can compete with, or complement, professional networks in assembling health-related information of value for improving health and health care. Using the framework of analysis of a two-sided network--patients and providers--with multiple platforms for interaction, we argue that the structure and dynamics of such a network has implications for future health care. Patients are using social networking to access and contribute health information. Among those living with chronic illness and disability and engaging with social networks, there is considerable expertise in assessing, combining and exploiting information. Social networking is providing a new landscape for patients to assemble health information, relatively free from the constraints of traditional health care. However, health information from social networks currently complements traditional sources rather than substituting for them. Networking among health care provider organisations is enabling greater exploitation of health information for health care planning. The platforms of interaction are also changing. Patient-doctor encounters are now more permeable to influence from social networks and professional networks. Diffuse and temporary platforms of interaction enable discourse between patients and professionals, and include platforms controlled by patients. We argue that social networking has the potential to change patterns of health inequalities and access to health care, alter the stability of health care provision and lead to a reformulation of the role of health professionals. Further research is needed to understand how network structure combined with its dynamics will affect the flow of information and potentially the allocation of health care resources., (Copyright © 2012 Elsevier Ltd. All rights reserved.)