Preventing interpersonal violence in Panama:is a parenting intervention developed in Australia culturally appropriate?

OBJECTIVES: To explore cultural appropriateness of a transported parenting intervention in Panama. METHODS: Panamanian parents (n = 25) were interviewed after participation in an Australian parenting intervention. A thematic analysis was conducted to interpret qualitative data. RESULTS: Three themes emerged; cultural context, appropriateness of the intervention, and development of support networks. In terms of cultural context, parents described economic difficulties, living in a dangerous world, struggling to balance parenting and work, and using aggressive communication patterns. In terms of appropriateness of the intervention, they rated materials as appropriate, although suggested modifications to its delivery by including children and teachers in the training. Finally, parents commented that the intervention prompted the development of social networks within their communities. CONCLUSIONS: Overall, parents considered a transported parenting intervention as appropriate to their local needs. This study might be useful to local governments and international funders in charge of deciding whether transporting parenting interventions North to South as a strategy for violence prevention would be respectful of local needs. Our findings cannot be generalized beyond Panama, but the methodology can be replicated to answer this question in other settings

The Role of Information Provision in Economic Evaluations of Newborn Bloodspot Screening: A Systematic Review

BACKGROUND: The extent to which economic evaluations have included the healthcare resource and outcome-related implications of information provision in national newborn bloodspot screening programmes (NBSPs) is not currently known. OBJECTIVES: To identify if, and how, information provision has been incorporated into published economic evaluations of NBSPs. METHODS: A systematic review of economic evaluations of NBSPs (up to November 2014) was conducted. Three electronic databases were searched (Ovid: Medline, Embase, CINAHL) using an electronic search strategy combining a published economic search filter with terms related to national NBSPs and screening-related technologies. These electronic searches were supplemented by searching the NHS Economic Evaluations Database (NHS EED) and hand-searching identified study reference lists. The results were tabulated and summarised as part of a narrative synthesis. RESULTS: A total of 27 economic evaluations [screening-related technologies (n = 11) and NBSPs (n = 16)] were identified. The majority of economic evaluations did not quantify the impact of information provision in terms of healthcare costs or outcomes. Five studies did include an estimate of the time cost associated with information provision. Four studies included a value to reflect the disutility associated with parental anxiety caused by false-positive results, which was used as a proxy for the impact of imperfect information. CONCLUSION: A limited evidence base currently quantifies the impact of information provision on the healthcare costs and impact on the users of NBSPs; the parents of newborns. We suggest that economic evaluations of expanded NBSPs need to take account of information provision otherwise the impact on healthcare costs and the outcomes for newborns and their parents may be underestimated. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s40258-015-0177-2) contains supplementary material, which is available to authorized users

A qualitative investigation into the experience of parenting with a severe mental illness

This thesis explores the experience of parenting with severe mental illness, using qualitative methodologies. It is presented in three parts: a literature review, a report of the empirical research, and a critical reflection of the process undertaken. The literature review provides both a systematic review of qualitative studies exploring the experience of parenting with a severe mental illness (SMI), and a meta-synthesis of the findings from the included studies. The findings demonstrated six overarching themes that were central to the parents' experience. The themes were interlinked and often conflictual in nature and a model of the relationship between the themes is provided. The synthesis revealed how the additional and conflicting pressures faced by parents with SMI can interact with their symptoms to affect parenting behaviours and decisions about engagement with services. The model of themes elicited by the synthesis provides a broad conceptual framework in which parenting with SMI can be considered across the age range of children, parental symptoms and parenting roles. The empirical research provides a specific focus on the views and experiences of parents with Bipolar Disorder (BD). Interpretative Phenomenological Analysis was used to explore the lived experience of parenting with BD, to provide insight into the parents' perspective and the influence that this may have on outcomes for parents as well as their children. The analysis resulted in six overarching themes, each of which consisted of a number of sub-themes. There were important interactions between the themes and these are illustrated for the reader. It was found that the parents identified a number of challenges in being a parent with BD and experienced feelings of inadequacy, guilt and worry relating to the impact that their illness had on their children and family. Strategies for managing these feelings and limiting the impact of BD could have an inadvertent negative effect on their own well-being, and that of their child. Learning to accept their diagnosis and developing strategies for managing their symptoms were crucial for positive parenting, although the changing needs of their children often presented new challenges. Contextual factors, including the stigma associated with mental illness, could also either mediate or exacerbate the challenge of parenting with BD. The clinical implications of these findings are discussed. The critical reflection provides a consideration of qualitative methodologies and a personal reflection on the qualitative process in relation to the empirical research. It details the critical debates around qualitative methodology, the application of qualitative methodologies, and the challenges this presented for the researcher. The report was written on completion of the investigation and reflects the process by which, as a novice, the author was able to develop an understanding of qualitative methodology and carry out an insightful piece of research.EThOS - Electronic Theses Online ServiceGBUnited Kingdo

Psychological Impact on Parents of an Inconclusive Diagnosis Following Newborn Bloodspot Screening for Cystic Fibrosis: A Qualitative Study.

Genetic results of uncertain clinical significance are being returned to parents following newborn screening, representing a paradigm change in how society considers health and illness. 'Cystic Fibrosis screen positive, inconclusive diagnosis' (CFSPID) is a designation given to newborns with a positive screening result for, but not a definitive diagnosis of, cystic fibrosis. We explored the psychological impact of receiving a CFSPID result on parents. Five semi-structured interviews were conducted with eight parents whose children have CFSPID. Interpretative phenomenological analysis identified these themes: "The way we were told": 'diagnosis as a traumatic event' focused on how parents were distressed and dissatisfied by the initial screening result communication, 'Facing and challenging traditional ideas about health and illness' explored the emerging problem of how CFSPID does not fit the commonly accepted medical model, and 'Making certainty out of uncertainty' explored the varying strategies parents developed to adapt to the uncertainty regarding their child's prognosis. Findings suggest that CFSPID results caused parents' distress, initiated with the first communication of the result and persisting thereafter. Our data suggests approaches to the delivery of CFSPID results that may reduce the impact. Work is needed to close the gap between healthcare advances and societies commonly held medical model

Receiving results of uncertain clinical relevance from population genetic screening: systematic review & meta-synthesis of qualitative research

Genetic screening can be hugely beneficial, yet its expansion poses clinical and ethical challenges due to results of uncertain clinical relevance (such as ‘cystic fibrosis screen positive, inconclusive diagnosis’/CFSPID). This review systematically identifies, appraises, and synthesises the qualitative research on experiences of receiving results of uncertain clinical relevance from population genetic screening. Eight databases were systematically searched for original qualitative research using the SPIDER framework, and checked against inclusion criteria by the research team and an independent researcher. Nine papers were included (from USA, Canada, UK, New Zealand). PRISMA, ENTREQ, and EMERGE guidance were used to report. Quality was appraised using criteria for qualitative research. All papers focused on parental responses to uncertain results from newborn screening. Data were synthesised using meta-ethnography and first- and second-order constructs. Findings suggest that results of uncertain clinical relevance are often experienced in the same way as a ‘full-blown’ diagnosis. This has significant emotional and behavioural impact, for example adoption of lifestyle-altering disease-focused behaviours. Analysis suggests this may be due to the results not fitting a common medical model, leading recipients to interpret the significance of the result maladaptively. Findings suggest scope for professionals to negotiate and reframe uncertain screening results. Clearer initial communication is needed to reassure recipients there is no immediate severe health risk from these types of results. Public understanding of an appropriate medical model, that accounts for uncertain genetic screening results in a non-threatening way, may be key to maximising the benefits of genomic medicine and minimising potential psychological harm

Rethinking Strategies for Positive Newborn Screening Result (NBS+) Delivery (ReSPoND): a process evaluation of co-designing interventions to minimise impact on parental emotional well-being and stress.

BACKGROUND: Newborn blood spot (NBS) screening seeks to prevent ill health, disability and death through early diagnosis and effective intervention. Each year, around 10,000 parents of babies born in England are given a positive NBS result indicating their child may be affected or carriers of one of the nine conditions currently screened for. Despite guidance, these results are inconsistently delivered to parents across geographical regions. There is evidence that many parents are dissatisfied with how NBS results are communicated to them and that poor communication practices can lead to various negative sequelae. The purpose of this study is to co-design, implement and undertake a process evaluation of new, co-designed interventions to improve delivery of initial positive NBS results to parents. METHODS: This mixed-methods study will use four phases with defined outputs. Family Systems Theory will form the theoretical basis for the study. The principles and methods of experience-based co-design will underpin intervention development. Normalisation Process Theory will underpin the process evaluation of the interventions co-designed to improve the delivery of positive NBS results to parents. An economic analysis will determine resource use and costs of current practice and of implementing the new co-designed interventions. The nominal group technique will be used to inform the selection of suitable outcome measures for a future evaluation study. DISCUSSION: The main output of the proposed study will be co-designed interventions for initial communication of positive NBS results to parents ready to be evaluated in a definitive evaluation study.The interventions, co-designed with parents, will help to minimise potential negative sequelae associated with poor communication practices by considering parental and staff experiences as well as healthcare challenges such as finite resources. In addition, information about indicative costs associated with different communication strategies will be determined.It is anticipated it may also be possible to extrapolate principles of good communication practices from the present study for the delivery of bad news to parents for children newly diagnosed with other conditions including cancer and other chronic conditions such as diabetes or epilepsy. TRIAL REGISTRATION: ISRCTN 15330120 date of registration 17/01/2018

Engagement barriers and service inequities in the NHS Breast Screening Programme: Views from British-Pakistani women

Objectives: Previous research has largely attempted to explore breast screening experiences of South Asian women by combining opinions from Pakistani, Bangladeshi and Indian women. This research often fails to reach the most underserved sub-groups of this population, with socioeconomic status not routinely reported and English fluency being a participation requirement. With uptake low amongst British-Pakistani women, this study explores the experiences these women encounter when accessing the NHS Breast Screening Programme.Setting: Participants were from East Lancashire, UK. Methods: Nineteen one-to-one semi-structured interviews were carried out with British-Pakistani women. Fourteen interviews were conducted via an interpreter. Results: Data were analysed using thematic analysis. Three themes were identified: ‘Absence of autonomy in screening and healthcare access’ describes how currently the screening service does not facilitate confidentiality or independence. Access requires third-party intervention, with language barriers preventing self-expression. ‘Appraisal of information sources’ makes distinctions between community and NHS communication. Whereas community communication was invaluable, NHS materials were deemed inaccessible due to translation incongruences and incomprehensible terminology. ‘Personal suppositions of breast screening’ explores the subjective issues associated with disengagement, including, the cultural misalignment of the service and perceiving screening as a symptomatic service.Conclusions: British-Pakistani women face some unique challenges when accessing breast screening. To promote uptake, the service needs to address the translation of screening materials and optimise upon community networks to disseminate knowledge, including knowledge of the screening environment within the context of culture to promote informed choice about attendance

Qualitative exploration of health professionals' experiences of communicating positive newborn bloodspot screening results for nine conditions in England.

OBJECTIVE: To explore health professionals' experiences of communicating positive newborn bloodspot screening (NBS) results, highlight differences, share good practice and make recommendations for future research. DESIGN: Qualitative exploratory design was employed using semi-structured interviews SETTING: Three National Health Service provider organisations in England PARTICIPANTS: Seventeen health professionals involved in communicating positive newborn bloodspot screening results to parents for all nine conditions currently included in the newborn bloodspot screening programme in England. RESULTS: Findings indicated variation in approaches to communicating positive newborn bloodspot screening results to parents, largely influenced by resources available and the lack of clear guidance. Health professionals emphasised the importance of communicating results to families in a way that is sensitive to their needs. However, many challenges hindered communication including logistical considerations; difficulty contacting the family and other health professionals; language barriers; parental reactions; resource considerations; lack of training; and insufficient time. CONCLUSION: Health professionals invest a lot of time and energy trying to ensure communication of positive newborn bloodspot screening results to families is done well. However, there continues to be great variation in the way these results are communicated to parents and this is largely influenced by resources available but also the lack of concrete guidance. How best to support health professionals undertaking this challenging and emotive task requires further exploration. We recommend evaluation of a more cohesive approach that meets the needs of parents and staff while being sensitive to the subtleties of each condition. TRIAL REGISTRATION NUMBER: ISRCTN15330120

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.The National Institute of Health Research funded the study but any views expressed do not necessarily reflect those of the Authority. Funded by NIHR reference number: RP-DG-1211-10015