'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.

Issues affecting supply of palliative medicines into community pharmacy: A qualitative study of community pharmacist and pharmaceutical wholesaler/distributor perspectives.

Background: Patient access to medicines in the community at end-of-life (pertaining to the last year of life) is vital for symptom control. Supply of such medicines is known to be problematic, but despite this, studies have failed to examine the issues affecting community pharmacy access to palliative medicines. Objective: To identify community pharmacists' and pharmaceutical wholesalers'/distributors' views on supply chain processes and challenges in providing access to medicines during the last year of life, to characterise supply in this UK context. Methods: Qualitative design, with telephone interviews analysed using Framework Analysis. Coding frames were developed iteratively with data analysed separately and then triangulated to examine differences in perspectives. Findings: Thirty-two interviews (24 community pharmacists and 8 wholesalers/distributors) were conducted. To ensure appropriate palliative medicines were available despite occasional shortages, community pharmacists worked tirelessly. They navigated a challenging interface with wholesalers/distributors, the Drug Tariff to ensure reimbursement, and multiple systems. IT infrastructures and logistics provided by wholesalers/distributors were often helpful to supply into community pharmacies resulting in same or next day deliveries. However, the inability of manufacturers to predict operational issues or accurately forecast demand led wholesalers/distributors to encounter shortages with manufactured stock levels, reducing timely access to medicines. Conclusions: The study identifies for the first time how palliative medicines supply into community pharmacy, can be improved. A conceptual model was developed, illustrating how influencing factors affect responsiveness and speed of medicines access for patients. Work is required to strengthen this supply chain via effective relationship-building and information-sharing, to prevent patients facing disruptions in access to palliative medicines at end-of-life.

Patient perspectives of successful adalimumab biosimilar transitioning in Crohn's disease: an interview study.

OBJECTIVES: Transition from originator biological medicines to their biosimilar equivalents is now part of routine clinical practice, but there is little understanding of patient experiences, which influence adherence and overall satisfaction with care. Understanding this will help ensure future switches adequately address patients' concerns and expectations leading to better outcomes for all stakeholders. METHOD: 35 patients participating in a clinical trial including an open-label transition event from originator to biosimilar adalimumab, mimicking what would be encountered in a real-world setting, took part in semi-structured interviews exploring their experience of biosimilar transition. RESULTS: Opinions expressed were often heterogeneous, but common experiences and themes were identified. Five themes were identified following thematic analysis. (1) Understanding and awareness of biosimilars: prior awareness of biosimilars and knowledge of the biosimilar concept was low, indicating a disparity between healthcare professionals and patients. (2) Motivation to undertake transition: patients accept a biosimilar transition to minimise drug expenditure. (3) Initial concerns: before undertaking biosimilar transition away from the brand they had experienced, anticipated loss of efficacy and adverse effects from the biosimilar were common concerns for patients. (4) Reassuring factors: trust in the healthcare team is critical to patient acceptance of biosimilars. Important reassurances include a point of contact, education about biosimilars and monitoring. (5) Experiences during the transition: on reflection, participants described consistent efficacy and tolerability (although 22 participants specifically mentioned injection pain) following brand transition. CONCLUSION: The majority of patients felt comfortable with future transition to another adalimumab biosimilar. Injection experience was an important component of patient satisfaction.

'It makes life so much easier'-experiences of users of the MicroGuide™ smartphone app for improving antibiotic prescribing behaviour in UK hospitals: an interview study.

OBJECTIVES: To understand the impact on prescribing behaviour of an antimicrobial therapy guidelines smartphone app, in widespread use in hospitals in the UK. METHODS: Twenty-eight doctors and five nurse prescribers from four purposively selected hospitals in the UK participated in behavioural theory-informed semi-structured interviews about their experiences of using the MicroGuide™ smartphone app. Data were analysed using a thematic content analysis. RESULTS: Five themes emerged from the interview data: convenience and accessibility; validation of prescribing decisions; trust in app content; promotion of antimicrobial stewardship; and limitations and concerns. Participants appreciated the perceived convenience, accessibility and timesaving attributes of the app, potentially contributing to more prompt treatment of patients with time-critical illness. The interviewees also reported finding it reassuring to use the app to support decision-making and to validate existing knowledge. They trusted the app content authored by local experts and considered it to be evidence-based and up-to-date. This was believed to result in fewer telephone calls to the microbiology department for advice. Participants recognized the value of the app for supporting the goals of antimicrobial stewardship by promoting the responsible and proportionate use of antimicrobials. Finally, a number of limitations of the app were reported, including the risk of de-skilling trainees, cultural problems with using smartphones in clinical environments and software technical problems. CONCLUSIONS: The MicroGuide app was valued as a means of addressing an unmet need for updated, concise, trustworthy specialist information in an accessible format at the bedside to support safe and effective antimicrobial prescribing.

Community access to palliative care medicines-patient and professional experience: systematic review and narrative synthesis.

BACKGROUND: Providing palliative care patients living at home with timely access to medicines is critical to enable effective symptom management, minimise burden and reduce unplanned use of healthcare services. Little is known about how diverse community-based palliative care models influence medicine access. OBJECTIVE: To produce a critical overview of research on experiences and outcomes of medicine access in community-based palliative care models of service delivery through a systematic review and narrative synthesis. METHODS: MEDLINE, CINAHL, EMBASE, PsycINFO, Cochrane Library databases and grey literature were systematically searched for all types of studies. Study quality was assessed using the Mixed Methods Appraisal Tool; a narrative synthesis was used to integrate and summarise findings. RESULTS: 3331 articles were screened; 10 studies were included in the final sample. Studies included a focus on community pharmacy (n=4), hospice emergency medication kits (HEMKs) in the home (n=3), specialist community nurse prescribers (n=1), general practice (n=1) and one study included multiple service delivery components. Community pharmacy was characterised by access delays due to lack of availability of medicine stock and communication difficulties between the pharmacy and other healthcare professionals. HEMKs were perceived to reduce medicine access time out of hours and speed symptom control. However, the majority of studies comprised small, local samples, largely limited to self-reports of health professionals. There was a lack of data on outcomes, and no comparisons between service delivery models. CONCLUSIONS: Further research is required to understand which models facilitate rapid and efficient access to medicines for community-based palliative care patients.

Development and psychometric evaluation of a new patient -reported outcome measure for stroke self -management: The Southampton Stroke Self - Management Questionnaire (SSSMQ).

BACKGROUND: Self-management is important to the recovery and quality of life of people following stroke. Many interventions to support self-management following stroke have been developed, however to date no reliable and valid outcome measure exists to support their evaluation. This study outlines the development and preliminary investigation of the psychometric performance of a newly developed patient-reported outcome measure (PROM) of self-management competency following stroke; the Southampton Stroke Self-Management Questionnaire (SSSMQ). METHODS: A convenience sample of 87 people who had had a stroke completed responses to the SSSMQ, the Stroke Self-Efficacy Questionnaire and the Stroke Impact Scale. Scaling properties were assessed using Mokken Scale Analysis. Reliability and construct validity were assessed using intra-class correlation coefficient (ICC), Mokken and Cronbach's reliability coefficients and Spearman rank order correlations with relevant measures. RESULTS: Mokken scaling refined the SSSMQ to 28 scalable items. Internal consistency reliability (Mokken r = 0.89) and test-retest reliability (ICC = 0.928) were excellent. Hypotheses of expected correlations with additional measures held, demonstrating good evidence for construct validity. CONCLUSIONS: Early findings suggest the Southampton Stroke Self-Management Questionnaire is a reliable and valid scale of self-management competency. The SSSMQ represents a potentially valid PROM for the evaluation of self-management following stroke.