'Either something's wrong, or I'm a terrible parent': A systematic review of parent experiences of illness-related interpretations for unsettled babies.

AIMS: To explore parents' experiences of unsettled babies and medical labels. DESIGN: Qualitative systematic review, thematic synthesis and development of a conceptual model. REVIEW METHODS: Systematic review and thematic synthesis of primary, qualitative research into parents' experiences of unsettled babies <12 months of age. 'Unsettled' was defined as perception of excessive crying with additional feature(s) such as vomiting, skin or stool problems. The Critical Appraisal Skills Programme (CASP) checklist was used to assess trustworthiness. DATA SOURCES: Structured searches completed in CINAHL, Medline, Embase, PsychINFO and CochraneCT on 23 March 2022 and rerun on 14 April 2023. RESULTS: Ten eligible studies were included across eight countries contributing data from 103 mothers and 24 fathers. Two analytical themes and eight descriptive themes were developed. Firstly, parents expressed fearing judgement, feeling guilty and out of control as a result of babies' unsettled symptoms and seeking strategies to construct an 'Identity as a "Good Parent"'. This desire for positive parenting identity underpinned the second analytical theme 'Searching for an explanation' which included seeking external (medical) causes for babies' unsettled behaviours. CONCLUSION: Parents can become trapped in a cycle of 'searching for an explanation' for their baby's unsettled behaviours, experiencing considerable distress which is exacerbated by feelings of guilt and failure. IMPACT AND IMPLICATIONS FOR PATIENT CARE: Insight gained from this review could inform interventions to support parents, reducing inaccurate medicalization. Health visiting teams supporting parents with unsettled baby behaviour could focus on supporting a positive parenting identity by managing expectations, normalizing the continuum of infant behaviours, reducing feelings of guilt or uncertainty and helping parents regain a feeling of control. REPORTING METHOD: ENTREQ guidelines were adhered to in the reporting of this review. PATIENT OR PUBLIC CONTRIBUTION: Parent input was crucial in the design phase; shaping the language used (e.g., 'unsettled babies') and in the analysis sense-checking findings.

Living with unsettled baby behaviours: Qualitative interview study exploring parental perceptions and experiences of help-seeking.

AIM: To explore parents' perceptions/experiences of help-seeking for unsettled baby behaviours, including views and experiences of obtaining advice from primary healthcare professionals. DESIGN: Semi-structured qualitative interviews. METHODS: Recruitment occurred via social media, general practice and health visiting teams. Remote semi-structured interviews were conducted with parents of babies. Babies were under 12 months old at time of interview, and parents had perceived unsettled baby behaviours in their first 4 months of life. Interviews were transcribed and data analysed using reflexive thematic analysis. RESULTS: Based on interviews with 25 mothers, four main themes were developed. 'The need for answers' highlighted parental uncertainty about what constitutes normal baby behaviour, leading to help-seeking from multiple sources. 'The importance of health professionals' and 'Experiencing health professional support' identified perceptions about limited access, communication, mixed advice and how these influenced parental perception/management of behaviours. 'Foundations to help-seeking' highlighted important roles of social support and online help for valued shared experiences, emotional and practical support. CONCLUSION: Health professional access and advice are important to parents, despite the increasing role of online help and importance of social support. More support and improved access to reliable sources of information is needed for parents. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings will inform future research and clinical practice to address parental uncertainties. Qualitative research with front-line health professionals is necessary. IMPACT: Findings can inform the development of resources to support professionals/families managing unsettled babies. REPORTING METHOD: Standards for Reporting Qualitative Research. PUBLIC INVOLVEMENT: A public contributor was involved throughout all stages of the research. Emerging findings were discussed at a parent group. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL CLINICAL COMMUNITY?: Addressing parental uncertainties is important; about what is normal, non-pharmacological approaches and when pharmacological intervention is required. A digital information/self-management intervention may be useful for parents/clinicians.

Parental perceptions and experiences of infant crying: A systematic review and synthesis of qualitative research.

BACKGROUND: Excessive infant crying is common and can have a huge impact on families and well-being. Systematically reviewing qualitative studies on infant crying can provide a greater understanding of parental perceptions and experiences. AIM: This study sought to systematically review and thematically synthesize qualitative studies exploring parents/carers' views and experiences of infant crying. DESIGN: A systematic review and synthesis of qualitative research. DATA SOURCES: Electronic databases MEDLINE, EMBASE, PsycINFO and CINAHL were searched from the earliest date available to January 2022. We selected papers focussing on parents/carers' experiences, views, attitudes and beliefs about infant crying. We excluded papers focussing on health professionals' views and children older than 12 months. REVIEW METHODS: Thematic synthesis was followed for the analysis of included studies and quality appraisal was conducted. RESULTS: We synthesized 22 papers, reporting data from 376 participants in eight countries. Four analytical themes were developed: (1) Experiences and impact of crying; (2) parental management strategies; (3) the role of the health professional; (4) the role of infant feeding and maternal diet. Our findings suggest that infant crying has a substantial emotional impact on parents/carers that often impacts relationships. Parents/carers reported using a range of soothing techniques and coping strategies but were desperate to find effective treatment or cure. Support was often perceived as lacking. Excessive crying and beliefs about the role of maternal diet on breastmilk were reported to undermine parents' confidence in breastfeeding by making them feel their milk is insufficient or harmful, or through pressure from others to stop breastfeeding. CONCLUSION: Parents/carers use a range of strategies to interpret and deal with the challenges of infant crying, but there is a need for more information and support. IMPACT: Findings can be used to inform future research and interventions to support families experiencing excessive infant crying.

The management of sleep disturbances in children with attention-deficit/hyperactivity disorder (ADHD): an update of the literature.

INTRODUCTION: Sleep disorders represent an important comorbidity in individuals with ADHD. While the links between ADHD and sleep disturbances have been extensively investigated, research on the management of sleep disorders in individuals with ADHD is relatively limited, albeit expanding. AREAS COVERED: The authors searched PubMed, Medline, PsycInfo, Embase+Embase Classic, Web of Sciences databases, and clinicaltrials.gov up to 4 January 2024, for randomized controlled trials (RCTs) of any intervention for sleep disorders associated with ADHD. They retained 16 RCTs (eight on pharmacological and eight on non-pharmacological interventions), supporting behavioral intervention and melatonin, and nine ongoing RCTs registered on clinicaltrials.gov. EXPERT OPINION: The pool of RCTs testing interventions for sleep disorders in individuals with ADHD is expanding. However, to inform clinical guidelines, there is a need for additional research in several areas, including 1) RCTs based on a precise phenotyping of sleep disorders; 2) pragmatic RCTs recruiting neurodevelopmental populations representative of those seen in clinical services; 3) trials testing alternative interventions (e.g. suvorexant or light therapy) or ways to deliver them (e.g. online); 4) sequential and longer-term RCTs; 5) studies testing the impact of sleep interventions on outcomes other than sleep; 6) and implementation of advanced evidence synthesis and precision medicine approaches.

Patient-reported outcome measures for acne: a mixed-methods validation study (acne PROMs).

OBJECTIVES: To examine the acceptability and validity of two patient-reported outcome measures (PROMs) for adult acne, comparing them to the validated Acne-specific Quality of Life (Acne-QoL) measure. DESIGN: Mixed-methods validation study. SETTING: Participants were recruited by (1) mail-out through primary care if they had ever consulted for acne and received a prescription for acne treatment within the last 6 months, (2) opportunistically in secondary care and (3) poster advertisement in community venues. PARTICIPANTS: 221 (204 quantitative and 17 qualitative) participants with acne, aged 18-50 years. OUTCOME MEASURES: Quantitative sub-study participants completed Acne-QoL, Skindex-16 and Comprehensive Acne Quality of Life Scale (CompAQ) at baseline, 24 hours and 6 weeks. Qualitative sub-study participants took part in cognitive think-aloud interviews, while completing the same measures. Transcribed audio recordings were analysed using inductive thematic analysis. RESULTS: Quantitative analyses suggested high internal consistency (Cronbach's alpha 0.74-0.96) and reliability (intraclass correlation coefficient values 0.88-0.97) for both questionnaires. Both scales showed floor effects on some subdomains. Skindex-16 and CompAQ showed good evidence of construct validity when compared with Acne-QoL with Spearman's correlation coefficients 0.54-0.81, and good repeatability over 24 hours.Qualitative data uncovered wide-ranging views regarding usability and acceptability. Interviewees held strong but differing views about layout, question/response wording, redundant/similar questions and guidance notes. Similarly, interviewees differed in perceptions of acceptability of the different scales, particularly on relatability of questions and emotive reactions to scales. CONCLUSIONS: All PROMs performed well in statistical analyses. No PROM showed superior usability and acceptability in the qualitative study. Any PROM should be acceptable for further research in adult acne but researchers should consider the different domains and whether they will measure only facial or facial and trunk acne before making a selection. A new PROM or further evaluation of novel PROMs may be beneficial.

Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury.

BACKGROUND: Survivors of childhood brain tumors or other acquired brain injury (ABI) are at risk of poor health-related quality of life (HRQoL); its valid and reliable assessment is essential to evaluate the effect of their illness on their lives. The aim of this review was to critically appraise psychometric properties of patient-reported outcome measures (PROMs) of HRQoL for these children, to be able to make informed decisions about the most suitable PROM for use in clinical practice. METHODS: We searched MEDLINE, EMBASE, and PsycINFO for studies evaluating measurement properties of HRQoL PROMs in children treated for brain tumors or other ABI. Methodological quality of relevant studies was evaluated using the consensus-based standards for the selection of health status measurement instruments checklist. RESULTS: Eight papers reported measurement properties of 4 questionnaires: Health Utilities Index (HUI), PedsQL Core and Brain Tumor Modules, and Child and Family Follow-up Survey (CFFS). Only the CFFS had evidence of content and structural validity. It also demonstrated good internal consistency, whereas both PedsQL modules had conflicting evidence regarding this. Conflicting evidence regarding test-retest reliability was reported for the HUI and PedsQL Core Module only. Evidence of measurement error/precision was favorable for HUI and CFFS and absent for both PedsQL modules. All 4 PROMs had some evidence of construct validity/hypothesis testing but no evidence of responsiveness to change. CONCLUSIONS: Valid and reliable assessment is essential to evaluate impact of ABI on young lives. However, measurement properties of PROMs evaluating HRQoL appropriate for this population require further evaluation, specifically construct validity, internal consistency, and responsiveness to change.