Interventions, outcomes and outcome measurement instruments in stillbirth care research: A systematic review to inform the development of a core outcome set

Background: A core outcome set could address inconsistent outcome reporting and improve evidence for stillbirth care research, which has been identified as an important research priority. Objectives To identify outcomes and outcome measurement instruments reported by studies evaluating interventions after the diagnosis of a stillbirth. Search strategy Amed, BNI, CINAHL, ClinicalTrials.gov, Cochrane Central Register of Controlled Trials, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO, and WHO ICTRP from 1998 to August 2021. Selection criteria Randomised and non-randomised comparative or non-comparative studies reporting a stillbirth care intervention. Data collection and analysis Interventions, outcomes reported, definitions and outcome measurement tools were extracted. Main results 40 randomised and 200 non-randomised studies were included. 58 different interventions were reported, labour and birth care (52 studies), hospital bereavement care (28 studies), clinical investigations (116 studies), care in a multiple pregnancy (2 studies), psychosocial support (28 studies) and care in a subsequent pregnancy (14 studies). 391 unique outcomes were reported and organised into 14 outcome domains: labour and birth; postpartum; delivery of care; investigations; multiple pregnancy; mental health; emotional functioning; grief and bereavement; social functioning; relationship; whole person; subsequent pregnancy; subsequent children and siblings and economic. 242 outcome measurement instruments were used, with 0-22 tools per outcome. Conclusions: Heterogeneity in outcome reporting, outcome definition and measurement tools in care after stillbirth exists. Considerable research gaps on specific intervention types in stillbirth care were identified. A core outcome set is needed to standardise outcome collection and reporting for stillbirth care research

Do interventions to improve adherence to antiretroviral therapy recognise diversity? A systematic review

People living with HIV (PLWH) are often culturally and linguistically diverse populations; these differences are associated with differing barriers to antiretroviral therapy (ART) adherence. Cultural competence measures the extent to which trial design recognises this diversity. This systematic review aimed to determine whether adherence trial participants represent the diversity of PLWH. Randomised Controlled Trials in Organisation for Economic Co-operation and Development countries to improve ART adherence were eligible. We searched MEDLINE, EMBASE, and Cochrane Database of Systematic Reviews. For all included trials, we searched for their development, testing and evaluation studies. We compared trial participant characteristics with nationally reported PLWH data. We appraised trial cultural competence against ten criteria; scoring each criterion as 0, 1 or 2 indicating cultural blindness, pre-competence or competence respectively. For 80 included trials, a further 13 studies presenting development/testing/evaluation data for the included trials were identified. Only one of the 80 included studies reported trial participants representative of the country's population of PLWH. The median (IQ) cultural competence score was 2.5 (1.0, 4.0) out of 20. HIV adherence trial participants are not reflective of the population with HIV, which may be due to limited adoption of culturally competent research methods

Locating the ‘invisible’ Mum::Exploring maternal selfie practices

This article draws on ten semi-structured interviews with mothers about their maternal selfie practices in order to explore how they use and navigate the form in relation to their motherhood identities and experiences. Whilst work on the form is still emerging, we examine the claim that maternal selfies offer space for a uniquely subjective expression/ depiction of motherhood. As part of this, we explore how discussions of their selfie practices – and appraisals of the cultural circulation of the maternal selfie - resist and (re)produce discourses on acceptable digital and cultural paradigms of motherhood. The themes which emerged from this data were 1) the maternal selfie as empowerment 2) authenticity as regulatory discourse 3) the risks of negative affect. In drawing on work on neoliberal and intensive mothering frames, the article examines how the increasing emphasis (in digital cultures in particular) on displaying the ‘messy realities’ of motherhood (Orton-Johnson, 2017: 9) are implicated within the surveillance and self-surveillance of maternal visibility in ways which may (further) delimit the possibilities for maternal self-expression

Barriers and enablers to switching from a solid to a liquid formulation of Parkinson's medication: a theory-based mixed methods investigation

Background: Swallowing tablets/capsules can become difficult and dangerous for People with Parkinson’s (PwP) who develop oropharyngeal dysphagia. Switching to a liquid delays the need for progressing to last line patches/injections. However, liquids are rarely used therefore a change in prescribing practice is warranted but, as with any change in behaviour, may be met with resistance. Aim: To characterise PwPs and carers’ barriers and enablers (determinants) of switching from solid to liquid Parkinson’s medication formulations. Method: Underpinned by the Theoretical Domains Framework, focus groups with PwPs and carers were convened to identify determinants of switching, which were then used to develop a questionnaire distributed across the UK. Determinants were prioritised if ≥ 50% of respondents agreed/strongly agreed that they were important to their decision to switch to a liquid formulation. Percentage precisions were reported as 95% confidence intervals. Results: From three focus groups and 131 questionnaires responses, PwPs and carers prioritised nine determinants. Three enablers had almost unanimous agreement: liquids’ flexibility for incremental dosing (72% ± 8); decline in Parkinson’s control (72% ± 8); prescriber’s endorsement to switch (70% ± 8). The barriers: perception that tablets/capsules are easier to dose than liquids (72% ± 8); and prescriber’s opposition to switching (70% ± 8), attracted similarly high agreement. Conclusion: There is a desire to switch to liquids when Parkinson’s progresses and for their use beyond this to offer flexibility in dosing, a previously unrecognised indication for switching. The only notable resistance to switching may be addressed by innovations from the pharmaceutical industry to make liquids easier to measure

Is care of stillborn babies and their parents respectful? Results from an international online survey.

OBJECTIVE: To quantify parents' experiences of respectful care around stillbirth globally. DESIGN: Multi-country, online, cross-sectional survey. SETTING AND POPULATION: Self-identified bereaved parents (n = 3769) of stillborn babies from 44 high- and middle-income countries. METHODS: Parents' perspectives of seven aspects of care quality, factors associated with respectful care and seven bereavement care practices were compared across geographical regions using descriptive statistics. Respectful care was compared between country-income groups using multivariable logistic regression. MAIN OUTCOME MEASURES: Self-reported experience of care around the time of stillbirth. RESULTS: A quarter (25.4%) of 3769 respondents reported disrespectful care after stillbirth and 23.5% reported disrespectful care of their baby. Gestation less than 30 weeks and primiparity were associated with disrespect. Reported respectful care was lower in middle-income countries than in high-income countries (adjusted odds ratio 0.35, 95% CI 0.29-0.42, p < 0.01). In many countries, aspects of care quality need improvement, such as ensuring families have enough time with providers. Participating respondents from Latin America and southern Europe reported lower satisfaction across all aspects of care quality compared with northern Europe. Unmet need for memory-making activities in middle-income countries was high. CONCLUSIONS: Many parents experience disrespectful care around stillbirth. Provider training and system-level support to address practical barriers are urgently needed. However, some practices (which are important to parents) can be readily implemented such as memory-making activities and referring to the baby by name