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Background: Using inclusive research methods with people with intellectual disabilities is increasingly common. A recent consensus statement identified key elements when conducting and reporting inclusive research with people with intellectual disabilities. This review identifies the range of health and social care research topics using inclusive research methodologies, systematically appraises the involvement of researchers with intellectual disabilities, and identifies facilitators and barriers to inclusive research. Researchers' experiences of engaging with inclusive research are synthesised. Method: Seventeen empirical studies focused upon inclusive health and social care research were identified. The associated inclusive research methodologies employed, and the stages in which researchers with intellectual disabilities were involved, along with the experiences of researchers with and without intellectual disabilities were synthesised. Results: Papers focused on a broad range of health and social care topics and largely employed qualitative or mixed-methods designs. Researchers with intellectual disabilities were frequently involved with data collection, analysis and dissemination. Facilitators of inclusive research comprised sharing power, team working, having sufficient resources and making research methodologies accessible. Conclusions: Researchers with intellectual disabilities are involved in a wide range of methodologies and research tasks. How the added value of inclusive research is measured and its impact on outcomes, require consideration.

Few children with mental health problems access evidence-based interventions. Primary schools may be an ideal setting to improve access to treatment through screening and intervention programmes, but some families' circumstances and experiences may increase barriers to benefiting from this approach. Interviews were carried out with parents of children living in potentially challenging circumstances, including foster and military-connected families. We aimed to explore parent perceptions of a school-based screening/intervention programme and potential barriers to uptake. Parents described that due to their past experiences, that they might not trust or engage with a school-based screening/intervention. Nonetheless, parents considered that the delivery of a sensitive school screening/intervention programme might provide an opportunity for schools to strengthen their relationship with families. These findings highlight the need for future school-based screening/intervention programmes for child mental health to consider the needs of families of children from varied circumstances, and ensure steps are taken to promote trust.

Schools may be well-placed to identify signs of mental health (MH) problems in children; however, there has been little research into how school-based screening and intervention initiatives should be delivered. One-to-one in-depth interviews were carried out with 15 practitioners that support children's MH within primary school settings. Data were analysed with template analysis. We explored practitioners' perceptions of a school-based screening/intervention programme for childhood MH problems and views about potential barriers to uptake. Three themes were identified. First, practitioners described feeling overwhelmed by the volume of children requiring support and the limited capacity of their service. Second, practitioners identified potential barriers to engagement in a school screening/intervention programme, including familial concerns about stigma. Finally, practitioners were optimistic that a screening/intervention programme could have positive effects for children who might otherwise not be identified as potentially benefitting from support. This study highlights that a primary school-based screening/intervention programme designed in partnership with stakeholders would be well received by practitioners supporting MH within school settings.

Standardized physical fitness monitoring provides a more accurate proxy for youth health when compared with physical activity. Little is known about the utilization of broad-scale individual-level youth physical fitness testing to explore health disparities. We examined longitudinal trends in population-level fitness for 4th-12th grade New York City youth during 2006/7-2016/17 (average n = 510,293 per year). Analyses were performed in 2019. The primary outcome was whether or not youth achieved sex-/age-specific performance levels (called the Healthy Fitness Zone) on the aerobic capacity, muscular strength and muscular endurance tests using the NYC FITNESSGRAM. The Cooper Institute's most recent Healthy Fitness Zone criteria were applied to all tests and years. Prevalence estimates were weighted, accounted for school clustering, adjusted for student-level sociodemographics, and run by sociodemographic subgroups and year. The overall prevalence for meeting 3 Healthy Fitness Zones increased from 15.5% (95%CI: 13.9%-17.0%) in 2006/7 to 23.3% (95%CI: 22.2%-24.4%) in 2016/17 for students in grades 4-12. Fitness for all student groups increased over time, although Hispanic and non-Hispanic black girls consistently had the lowest prevalence of meeting 3 Healthy Fitness Zones as compared to all other race/sex subgroups. Also, 9th-12th graders had a lower prevalence of meeting 3 Healthy Fitness Zones as compared to 4th-8th graders. Given forecasted sharp increases in cardiovascular disease prevalence, routine youth fitness surveillance using standardized, criterion referenced methods can identify important fitness disparities and inform interventions.

Objective: To synthesise qualitative research exploring the care-giving experiences of parents of young people with profound and multiple learning disabilities (PMLD) and complex healthcare needs, in the transition to adulthood years. Method: Four databases were systematically searched: Scopus, WoS Core Collection, Medline and SciELO. Included papers were assessed for quality and thematically synthesised. Findings are presented in the form of free-verse poems. Results: Nineteen papers from eight countries were included. Analysis generated three themes: interdependency of parent and child, where parents retained responsibility for their child's care; apprehension regarding sharing and shifting responsibility between parents and professionals; an uncertain future in terms of care provision. Conclusions: Parents are concerned about the future care of their children. Training professionals in alternative and effective communication is fundamental to successful transition. Encouraging discussions about advanced care planning may also alleviate parental concerns and ensure good outcomes for young people with PMLD. [ABSTRACT FROM AUTHOR]

Longitudinal Qualitative Research (LQR) aims to chronicle individuals' lives in real-time, offering a "qualitative movie" of their unfolding experiences, focusing on the dynamic interplay of continuity and change. The rising interest in LQR has led to methodological advancements, with LQR being combined with established methodologies. Among these, Interpretative Phenomenological Analysis (IPA) has stated to engage with longitudinal design. IPA's unique focus on idiography, phenomenology and hermeneutics can be particularly fruitful when engaging with temporal dimensions. Yet, applying longitudinal design to any qualitative study is complex; it requires thoughtful consideration of how we embed temporal lenses through the whole study cycle and goes beyond collecting data 'more than once'. The literature on the implications of embedding longitudinal design in IPA methodology is still developing. In particular, the considerations related to embedding temporality when approaching data collection have not yet been explored in detail. In this paper, we reflect on key considerations and strategies when conducting data collection as part of longitudinal IPA. We focus on the balance between flexibility and continuity when collecting data across sequential waves of data collection, and on the extent to which researchers explicitly engage with participants in uncovering continuity and change throughout their studies, which we discuss in turn. We do that by drawing on published papers, complemented by our own experience using IPA and LQR to illustrate the methodological dilemmas. By doing this, we hope to provide valuable insights for researchers considering the use of IPA and LQR and to facilitate an understanding of how these features can be integrated effectively throughout the research process. [ABSTRACT FROM AUTHOR]

Phenylketonuria (PKU) is a rare metabolic condition characterised by an inability to metabolise phenylalanine (Phe), found in many foods. When pregnant with PKU, women must adhere to a strict low-Phe diet. If they do not, foetal abnormalities or pregnancy loss can occur. Pregnancies are therefore closely clinically monitored and dominated by dietary management, leaving little "space" for women's emotional experience. This article explores the emotional impact of PKU during pregnancy and how this effects pre-natal bonding. Based on interviews with six women with PKU, conducted whilst they were pregnant, this article explores their unusual and previously undocumented experience. Image-making during interviews allowed women to uncover aspects of their experience that might otherwise have remained hidden. Interpretative phenomenological analysis of the transcripts and images generated five themes summarising the women's experiences. Some themes reiterated findings from previous studies, for example, the huge cognitive burden associated with PKU pregnancies and the importance of both expert and informal support to successful pregnancy management. However, new understanding also emerged, including rich description of the emotional load of these pregnancies and strategies that women use to manage this. Anxiety about baby safety was central to their experiences, and the effect of this on pre-natal bonding was explored. This article calls for increased formal and informal support for women with the emotional aspects of their PKU pregnancies, for example, the creation of "attachment-aware" services that support women with their anxiety, promoting strong pre-natal attachment and subsequently protecting maternal and infant mental health throughout pregnancy and beyond. [ABSTRACT FROM AUTHOR]

Background: This paper examines the appropriateness of using interpretative phenomenological analysis (IPA) in research with people who have intellectual disabilities, focussing on quality. Methods: We conducted a systematic search to identify published studies. We assessed the quality of the studies using a bespoke framework, adapted from previous reviews, and articles on indicators of "good" IPA work. Results: Twenty-eight papers were reviewed. The studies were of varying quality: 6 (22%) papers were rated as "good" quality; 16 (57%) were "acceptable", and 6 (21%) were "poor." This ratio was comparable to that found in assessments of IPA papers in other domains, suggesting that issues of quality reflect researcher competence, rather than challenges with the population. Conclusions: IPA can be an appropriate methodology to use with people with intellectual disabilities. We encourage researchers to develop more detailed analyses, to provide more transparency about their sampling strategies, and more detail of the characteristics of their samples.

In 2008, the UK government introduced Employment and Support Allowance (ESA) as a welfare policy for individuals who are unable to work due to sickness or disability. Our research project examined the cultural landscape that has been made ‘available’ for those living with chronic health conditions whilst claiming welfare. To increase the transparency of a Foucauldian-inspired discursive analysis, PRISMA reporting guidelines were incorporated into a Media Framing Analysis. News articles and policy documents were collected as data corpora. This paper outlines how this innovative approach was developed; sharing samples of the analytical findings to illustrate what was achieved through a systematic compiling of a data set. A genealogical approach to health-based welfare shows how temporal and dualistic discourses of illness synonymise ‘health’ with a capability for employment. Methodological considerations are explored; illuminating how a systematic approach to data compilation can improve the transparency, rigour and potential transferability of discursive analyses. [ABSTRACT FROM AUTHOR]