Paediatric eye and vision research participation experiences: a systematic review.

BACKGROUND: For children and young people with eye and vision conditions, research is essential to advancing evidence-based recommendations in diagnosis, prevention, treatments and cures. Patient 'experience' reflects a key measure of quality in health care (Department of Health. High Quality Care for All: NHS Next Stage Review Final Report: The Stationery Office (2008)); research participant 'experiences' are equally important. Therefore, in order to achieve child-centred, high-quality paediatric ophthalmic research, we need to understand participation experiences. We conducted a systematic review of existing literature; our primary outcome was to understand what children and young people, parents and research staff perceive to support or hinder positive paediatric eye and vision research experiences. Our secondary outcomes explored whether any adverse or positive effects were perceived to be related to participation experiences, and if any interventions to improve paediatric ophthalmic research experiences had previously been developed or used. METHODS: We searched (from inception to November 2018, updated July 2020) in MEDLINE, Embase, CINAHL, Web of Science, NICE evidence and The Cochrane Library (CDSR and CENTRAL), key journals (by hand), grey literature databases and Google Scholar; looking for evidence from the perspectives of children, young people, parents and staff with experience of paediatric ophthalmic research. The National Institute for Health Research (NIHR) Participant in Research Experience Survey (PRES) (National Institute for Health Research. Research Participant Experience Survey Report 2018-19 (2019); National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) identified 'five domains' pivotal to shaping positive research experiences; we used these domains as an 'a priori' framework to conduct a 'best fit' synthesis (Carroll et al., BMC Med Res Methodol. 11:29, 2011; Carroll et al., BMC Med Res Methodol. 13:37, 2013). RESULTS: Our search yielded 13,020 papers; two studies were eligible. These evaluated research experiences from the perspectives of parents and staff; the perspectives of children and young people themselves were not collected. No studies were identified addressing our secondary objectives. Synthesis confirmed the experiences of parents were shaped by staff characteristics, information provision, trial organisation and personal motivations, concurring with the 'PRES domains' (National Institute for Health Research. Optimising the Participant in Research Experience Checklist (2019)) and generating additional dimensions to participation motivations and the physical and emotional costs of study organisation. CONCLUSIONS: The evidence base is limited and importantly omits the voices of children and young people. Further research, involving children and young people, is necessary to better understand the research experiences of this population, and so inform quality improvements for paediatric ophthalmic research care and outcomes. TRIAL REGISTRATION: Review registered with PROSPERO, International prospective register of systematic reviews: CRD42018117984. Registered on 11 December 2018.

Parent-adolescent communication on adolescent sexual and reproductive health in sub-Saharan Africa: a qualitative review and thematic synthesis.

BACKGROUND: Improving adolescent sexual and reproductive health continues to be a global public health need. Effective parent-adolescent communication on sexual health issues has been cited as a factor that could influence adolescents towards adopting safer sexual behaviour. The current review synthesises qualitative literature to understand the nature and relevance of parent-adolescent sexual and reproductive health communication and the barriers to effective communication in sub-Saharan Africa. METHODS: We systematically searched and synthesised qualitative literature published between 1st January 1990 to December 2019 and searched from CINAHL, PsycINFO, MEDLINE, Global Health, EMBASE, PubMed, and Google Scholar. We assessed the methodological quality of included studies using the Critical Appraisal Skills Programme (CASP) checklist. We thematically analysed qualitative data from the included primary studies. RESULTS: Fifteen studies were included. Social and physiological events act as triggers for initiating discussions. Fear of personal, social, and economic consequences of high-risk sexual behaviours act as drivers for communication but also carry a negative framing which hinders open discussion. Lack of parental self-efficacy and cultural and religious norms create an uncomfortable environment leaving peers, media, teachers, and siblings as important and sometimes preferred sources of sexual health information. CONCLUSIONS: While mothers recognise their own role in adolescent sexual and reproductive health and school-based interventions can act as useful prompts for initiating discussion, fathers are mainly absent from home-based dialogue. Fear dominates the narrative, and the needs of adolescents remain unarticulated.

Improving adolescent sexual and reproductive health remains an important public health need globally. Effective communication on sexual health issues between adolescents and their parents has been recognised to influence safer sexual behaviour among adolescents. This review combined qualitative evidence to understand the nature of, and barriers to communication about sex between parents and adolescents in sub-Saharan Africa.We searched academic databases for relevant articles published between January 1990 and December 2019 and found 15 studies of appropriate quality. Data on parents and adolescents' experiences of sex communication in these studies was synthesised. Drivers for sex communication including fear of personal and economic consequences were highlighted. Results also identified barriers to communication such as cultural and religious norms and lack of parental knowledge and skills.Findings showed that adolescents sometimes prefer other sources of sexual health information like peers, media, and siblings. Mothers are recognised to be more involved with home-based interactions on sexual health with adolescents compared to fathers. The results of this review point to the necessity for adolescents' needs to be understood and articulated towards influencing policy and programmes.

Parents' Perspectives on Their Child's Music Therapy: A Qualitative Study.

This qualitative study explored parents' perspectives on their child receiving individual music therapy in a community setting in an NHS service in London, UK. Parents of children aged 6-11 receiving or recently discharged from music therapy took part. Data were collected through semi-structured interviews which were digitally recorded, transcribed, and analyzed following procedures of inductive thematic analysis. Music therapy was generally perceived to provide a nurturing environment for children, and communication with music therapists was mostly experienced as helpful, but with some perceived challenges. Parents perceived positive outcomes of music therapy, including children becoming calmer and engaging more with musical activities at home. Understanding of music therapy was perceived as an evolving process for parents. Some parents described a need for more information prior to music therapy. The findings of this study broadly support the model in the service of working with children aged 6-11 without parents generally present during sessions. However, there were indications that, for some families, a more flexible approach might be beneficial for the child. Participants' commentaries on perceived outcomes for children indicate potential for intervention studies investigating the impact of music therapy, while broader perceptions of the value of music therapy indicate a need for studies exploring reasons for effectiveness.

Ethnographic study of the use of interventions during the second stage of labor in Jeddah, Saudi Arabia.

BACKGROUND: Routine use of medical interventions during labor has been identified as a clinical area for concern, since such routinized practice is not consistent with an evidence-based approach to care and continues to increase despite efforts to encourage normal childbirth. Therefore, the aim of our study was to explore maternity health professionals' use of interventions during the second stage of labor in two hospitals in Jeddah, Saudi Arabia, to understand what influences their decision-making and practices. METHODS: This was an exploratory study using an ethnographic approach. Data collection methods included participant observations of 19 labors and births (n = 8 at City Hospital and n = 11 at King's Hospital) and semi-structured interviews with 29 health care professionals. In addition, the hospital labor and delivery ward policies and guidelines from those hospitals were collected. Data were analyzed thematically. RESULTS: Medical interventions were used during the second stage of labor routinely, regardless of clinical indication. Three core influences that shaped the clinical decision-making were identified as follows: (a) organizational culture, (b) a medical concept of birth, and (c) a hierarchical system of control. We suggest that the clinical decision-making and routine practice in this setting arises out of the interface between these three core influences whereby hierarchical control and clinicians' exercise of power and feelings of powerlessness are fundamental drivers for an organizational culture of medicalized childbirth, despite the differing models of childbirth which professionals described. CONCLUSIONS: Clinical decisions relating to the use of interventions during childbirth are both complex and socially negotiated. The findings reflect the complexity of the use of interventions during the second stage of labor and the multiple influences on professionals' practices. We have shown how three key influences interact to shape clinical decision-making during the second stage of labor in this cultural setting and how the use of medical interventions can be analyzed as an illustration of the power dynamic in the maternity health care system. We suggest that written policies are insufficient to bring about evidence-based practice and approaches to change need to take into account these different levels of influence.

A Qualitative Exploration of Patient and Clinician Views on Patient Reported Outcome Measures in Child Mental Health and Diabetes Services.

Patient Reported Outcome Measures (PROMs) are increasingly being recommended for use in both mental and physical health services. The present study is a qualitative exploration of the views of young people, mothers, and clinicians on PROMs. Semi-structured interviews were conducted with a sample of n = 10 participants (6 young people, 4 clinicians) from mental health services and n = 14 participants (4 young people, 7 mothers, 3 clinicians) from a diabetes service. For different reasons, young people, mothers, and clinicians saw feedback from PROMs as having the potential to alter the scope of clinical discussions.

Time, monetary and other costs of participation in family-based child weight management interventions: qualitative and systematic review evidence.

BACKGROUND: Childhood overweight and obesity have health and economic impacts on individuals and the wider society. Families participating in weight management programmes may foresee or experience monetary and other costs which deter them from signing up to or completing programmes. This is recognised in the health economics literature, though within this sparse body of work, costs to families are often narrowly defined and not fully accounted for. A societal perspective incorporating a broader array of costs may provide a more accurate picture. This paper brings together a review of the health economics literature on the costs to families attending child weight management programmes with qualitative data from families participating in a programme to manage child overweight and obesity. METHODS: A search identified economic evaluation studies of lifestyle interventions in childhood obesity. The qualitative work drew on interviews with families who attended a weight management intervention in three UK regions. RESULTS: We identified four cost-effectiveness analyses that include information on costs to families. These were categorised as direct (e.g. monetary) and indirect (e.g. time) costs. Our analysis of qualitative data demonstrated that, for families who attended the programme, costs were associated both with participation on the scheme and with maintaining a healthy lifestyle afterwards. Respondents reported three kinds of cost: time-related, social/emotional and monetary. CONCLUSION: Societal approaches to measuring cost-effectiveness provide a framework for assessing the monetary and non-monetary costs borne by participants attending treatment programmes. From this perspective, all costs should be considered in any analysis of cost-effectiveness. Our data suggest that family costs are important, and may act as a barrier to the uptake, completion and maintenance of behaviours to reduce child obesity. These findings have implications for the development and implementation of child weight initiatives in particular, in relation to reducing inequalities in health.

What makes for a 'good' or 'bad' paediatric diabetes service from the viewpoint of children, young people, carers and clinicians? A synthesis of qualitative findings.

BACKGROUND: There is mounting evidence that experience of care is a crucial part of the pathway for successful management of long-term conditions. DESIGN AND OBJECTIVES: To carry out (1) a systematic mapping of qualitative evidence to inform selection of studies for the second stage of the review; and (2) a narrative synthesis addressing the question, What makes for a 'good' or a 'bad' paediatric diabetes service from the viewpoint of children, young people, carers and clinicians? RESULTS: The initial mapping identified 38 papers. From these, the findings of 20 diabetes-focused papers on the views on care of ≥650 children, parents and clinicians were synthesised. Only five studies included children under 11 years. Children and young people across all age groups valued positive, non-judgemental and relationship-based care that engaged with their social, as well as physical, health. Parents valued provision responsive to the circumstances of family life and coordinated across services. Clinicians wanting to engage with families beyond a child's immediate physical health described finding this hard to achieve in practice. LIMITATIONS: Socioeconomic status and ethnicity were poorly reported in the included studies. CONCLUSIONS: In dealing with diabetes, and engaging with social health in a way valued by children, parents and clinicians, not only structural change, such as more time for consultation, but new skills for reworking relations in the consultation may be required.

What works in practice: user and provider perspectives on the acceptability, affordability, implementation, and impact of a family-based intervention for child overweight and obesity delivered at scale.

BACKGROUND: As part of a study considering the impact of a child weight management programme when rolled out at scale following an RCT, this qualitative study focused on acceptability and implementation for providers and for families taking part. METHODS: Participants were selected on the basis of a maximum variation sample providing a range of experiences and social contexts. Qualitative interviews were conducted with 29 professionals who commissioned or delivered the programme, and 64 individuals from 23 families in 3 English regions. Topic guides were used as a tool rather than a rule, enabling participants to construct a narrative about their experiences. Transcripts were analysed using framework analysis. RESULTS: Practical problems such as transport, work schedules and competing demands on family time were common barriers to participation. Delivery partners often put considerable efforts into recruiting, retaining and motivating families, which increased uptake but also increased cost. Parents and providers valued skilled delivery staff. Some providers made adaptations to meet local social and cultural needs. Both providers and parents expressed concerns about long term outcomes, and how this was compromised by an obesogenic environment. Concerns about funding together with barriers to uptake and engagement could translate into barriers to commissioning. Where these barriers were not experienced, commissioners were enthusiastic about continuing the programme. CONCLUSIONS: Most families felt that they had gained something from the programme, but few felt that it had 'worked' for them. The demands on families including time and emotional work were experienced as difficult. For commissioners, an RCT with positive results was an important driver, but family barriers, alongside concerns about recruitment and retention, a desire for local adaptability with qualified motivated staff, and funding changes discouraged some from planning to use the intervention in future.

Early sexual risk among black and minority ethnicity teenagers: a mixed methods study.

PURPOSE: To determine how ethnic background influences early sexual activity among young adults. METHODS: Quantitative data were collected during the Research with East London Adolescents Community Health Survey study, a population-based survey of young adults belonging to white and black and minority ethnic groups and residing in east London in 2001 (n = 2,689) and 2003 (n = 2,675). Qualitative data were obtained from 146 young adults between January and September 2003. RESULTS: Black Caribbean, black African, white other, and mixed ethnicity young men were most likely to report high-risk sexual behaviors, that is, sexual debut at the age of ≤13 years, having unprotected sex, and having multiple sexual partners. There were marked variations within groups commonly collapsed as "black" or as "Muslim." Black Caribbean and black African young adults reported high rates of protective behaviors in addition to risk behaviors. Qualitative data confirmed variations in sexual behavior within ethnic groups. Longitudinally, risk of engaging in two or more high-risk sexual behaviors was predicted by low family support (OR: 2.8, 95% CI: 1.6-4.9), regular smoking (OR: 4.5, 95% CI: 1.7-12.0), and usage of illicit drugs (OR: 2.9, 95% CI: 1.5-5.8), with lower risk predicted by low peer support (OR: .3, 95% CI: .2-.6). CONCLUSIONS: Young adults belonging to black and minority ethnic groups reported a wide variation in sexual risk behaviors. High levels of high-risk behaviors were reported in ethnic groups known to have high rates of sexually transmitted infections. Effective sexual health interventions should be started early and they must focus on sexual debut and partner choices as well as messages regarding safe sex.