Parental views on informed consent for expanded newborn screening.

BACKGROUND: An increasing array of rare inherited conditions can be detected as part of the universal newborn screening programme. The introduction and evaluation of these service developments require consideration of the ethical issues involved and appropriate mechanisms for informing parents and gaining consent if required. Exploration of parental views is needed to inform the debate and specifically consider whether more flexible protocols are needed to fit with the public perception of new developments in this context. OBJECTIVE: This study has been undertaken to explore perceptions and attitudes of parents and future parents to an expanded newborn screening programme in the United Kingdom and the necessary information provision and consent processes. DESIGN AND PARTICIPANTS: A mixed methods study involving focus groups (n = 29) and a web-survey (n = 142) undertaken with parents and future parents. RESULTS AND CONCLUSIONS: Parents want guaranteed information provision with clear decision-making powers and an awareness of the choices available to them. The difference between existing screening provision and expanded screening was not considered to be significant enough by participants to warrant formal written, informed consent for expanded screening. It is argued that the ethical review processes need to be more flexible towards the provision of information and consent processes for service developments in newborn screening.

'Breast is not always best': South Asian women's experiences of infant feeding in the UK within an acculturation framework.

Acculturating to a host country has a negative impact on immigrant women's breastfeeding practices, particularly when coming from countries where breastfeeding rates are higher than Western countries. Whether this is true of those immigrating to the UK remains to be investigated. The study aimed to explore whether acculturating to the UK had detrimental effects on breastfeeding practices of South Asian women, and to provide explanations as to how acculturation may have exerted its influence. Twenty South Asian women completed semi-structured interviews exploring infant feeding experiences. Data were thematically analysed. A bidimensional measure assessed women's acculturation status. Women displaying low acculturation levels were aware of living in a formula-feeding culture but this had little influence on breastfeeding intentions/behaviours; drawing upon South Asian cultural teachings of the psychological benefits of breast milk. These women opted to formula-feed in response to their child's perceived demands or in a bid to resolve conflict; either when receiving information about the best feeding method or between their roles as a mother and daughter-in-law. Highly acculturated women also experienced such conflict; their awareness of the formula-feeding culture governed feeding choice. The findings provide a picture of how acculturation may affect South Asian women's breastfeeding intentions and behaviours; encouraging health service providers to meet the varying needs of an acculturating population. If breastfeeding is to be encouraged, it is necessary to understand factors influencing feeding choice; with particular attention to the acculturation pathways that may govern such decisions. This paper highlights ways to tailor information for South Asian women depending on levels of acculturation.

Fathers and parenting programmes: barriers and best practice.

Fathers are particularly difficult to recruit to voluntary parenting programmes, despite the advantages of such programmes for confidence and skills in parenting and associated improvements in child behaviour. The apparent reluctance of fathers to engage in parenting services is recognised as a problem by health and social care practitioners, and the Department of Health identifies the engagement of fathers as a key service target. This review gathers information on barriers to fathers' engagement with parenting support services and identifies best practice for recruitment. It draws on published academic literature, government and community organisation reports and empirical data collection through interviews with parenting experts (n=9) and focus groups and questionnaires with fathers (n=29). The barriers identified were lack of awareness, work commitments, female-orientated services, lack of organisational support and concerns over programme content. Aspects of best practice included actively promoting services to fathers rather than parents, offering alternative forms of provision, prioritising fathers within organisations and taking different cultural and ethnic perspectives into account. Achieving greater engagement of fathers in parenting support programmes requires a greater understanding of the perspectives of fathers.

Perceived barriers to self-management for people with dementia in the early stages.

People with dementia in the early stages currently experience a care gap, which self-management may address. We explore perceived barriers to self-management. Using a systematic approach (logic mapping), 19 participants (people with dementia, carers, health care professionals and charity representatives) described self-management barriers facing people living with dementia. Thematic content analysis revealed six main themes: the lived experience of dementia, diagnosis, role of carer/family, impact of health care professionals, organisation of health services and societal views. People with dementia were seen as passive recipients of care, unable to self-manage owing to the impact of dementia on cognitive abilities. The need for interventions that are largely emotion focused, encourage activity maintenance and improve quality of life are described. Barriers to self-management exist at multiple levels, suggesting a whole-systems approach is required.