Parenting programs have the potential to improve the health and well-being of parents and children. A challenge for providers is to recruit and retain parents in programs. Studies researching engagement with programs have largely focused on providers', policy makers', or researchers' reflections of their experience of parents' participation. We conducted a systematic review of qualitative studies where parents had been asked why they did or did not choose to commence, or complete programs, and compared these perceptions with those of researchers and those delivering programs. We used data-mining techniques to identify relevant studies and summarized findings using framework synthesis methods. Six facilitator and five barrier themes were identified as important influences on participation, with a total of 33 subthemes. Participants focused on the opportunity to learn new skills, working with trusted people, in a setting that was convenient in time and place. Researchers and deliverers focused on tailoring the program to individuals and on the training of staff. Participants and researchers/deliverers therefore differ in their opinions of the most important features of programs that act as facilitators and barriers to engagement and retention. Program developers need to seek the views of both participants and deliverers when evaluating programs.

ObjectiveTo implement parent-oriented discharge planning (Train-to-Home) for preterm infants in neonatal care.DesignBefore and after study, investigating the effects of the intervention during two 11-month periods before and after implementation.SettingFour local neonatal units (LNUs) in South West England.ParticipantsInfants without major anomalies born at 27–33 weeks’ gestation admitted to participating units, and their parents.Train-to-Home interventionA family-centred discharge package to increase parents’ involvement and understanding of their baby's needs, comprising a train graphic and supporting care pathways to facilitate parents’ understanding of their baby's progress and physiological maturation, combined with improved estimation of the likely discharge date.Main outcome measuresPerceived Maternal Parenting Self-Efficacy (PMP S-E) scores, infant length of stay (LOS) and healthcare utilisation for 8 weeks following discharge.ResultsParents reported that the Train-to-Home improved understanding of their baby's progress and their preparedness for discharge. Despite a lack of change in PMP S-E scores with the intervention, the number of post-discharge visits to emergency departments (EDs) fell from 31 to 20 (p<0.05), with a significant reduction in associated healthcare costs (£3400 to £2200; p<0.05) after discharge. In both study phases, over 50% of infants went home more than 3 weeks before their estimated date of delivery (EDD), though no reduction in LOS occurred.ConclusionsDespite the lack of measurable effect on the parental self-efficacy scores, the reduction in ED attendances and associated costs supports the potential value of this approach.

BackgroundPreparing families and preterm infants for discharge is relatively unstructured in many UK neonatal units (NNUs). Family‐centred neonatal care and discharge planning are recommended but variable.Design and participantsQualitative interviews with 37 parents of infants in NNUs, and 18 nursing staff and 5 neonatal consultants explored their views of discharge planning and perceptions of a planned family‐centred discharge process (Train‐to‐Home). Train‐to‐Home facilitates communication between staff and parents throughout the neonatal stay, using a laminated train and parent booklets.ResultsParents were overwhelmingly positive about Train‐to‐Home. They described being given hope, feeling in control and having something visual to show their baby's progress. They reported positive involvement of fathers and families, how predicted discharge dates helped them prepare for home and ways staff engaged with Train‐to‐Home when communicating with them. Nursing staff reactions were mixed—some were uncertain about when to use it, but found the visual images powerful. Medical staff in all NNUs were positive about the intervention recognizing that it helped in communicating better with parents.ConclusionsUsing a parent‐centred approach to communication and informing parents about the needs and progress of their preterm infant in hospital is welcomed by parents and many staff. This approach meets the recommended prioritization of family‐centred care for such families. Predicted discharge dates helped parents prepare for home, and the ways staff engaged with Train‐to‐Home when communicating with them helped them feel more confident as well as having something visual to show their baby's progress.

Objective: The Bristol Impact of Hypermobility (BIoH) questionnaire is a patient-reported outcome measure developed in conjunction with adults with Joint Hypermobility Syndrome (JHS). It has demonstrated strong concurrent validity with the Short Form-36 (SF-36) physical component score but other psychometric properties have yet to be established. This study aimed to determine its testretest reliability and smallest detectable change (SDC).Design: A test-retest reliability study.Setting: Participants were recruited from the Hypermobility Syndromes Association, a patient organisation in the United Kingdom.Patients: Recruitment packs were sent to 1,080 adults who had given permission to be contacted about research. Main Outcome Measures:BIoH and SF-36 questionnaires were administered at baseline and repeated two weeks later. An 11-point global rating of change scale (-5 to +5) was also administered at two weeks. Test-retest analysis and calculation of the SDC was conducted on 'stable' patients (defined as global rating of change -1 to +1). Conclusion:The results provide further evidence of the potential of the BIoH questionnaire to underpin research and clinical practice for people with JHS.

Background Published guidelines promote best practice in complex regional pain syndrome (CRPS) treatment and management; however, these recommendations are not always applied in clinical practice. Understanding existing care internationally will help inform future patient and health professional service delivery, education initiatives and content of clinical guidelines. Methods An e‐survey was conducted in order to gain an insight into routine CRPS clinical practice. Health professionals and academics, from the field of CRPS, were recruited from an international population. Quantitative and qualitative data were elicited. Data were mapped onto a framework to identify macro‐regional factors. Results Of the 260 survey respondents, 96% (n = 241) provided clinical care for people with CRPS, with academics not involved in patient care also responding. Half of respondents expressed difficulty in recognizing the symptoms of CRPS but treatment aims corresponded with published guidelines. However, a lack of resources and fragmented care were reported as barriers to early intervention. Service constraints were most frequently reported by European respondents. Five themes emerged from the qualitative data: the benefit of interdisciplinary working; the importance of symptom management; need for early diagnosis and intervention; establishing a collaborative partnership with patients; the value of education for patients and health professionals. Conclusions Our data suggest that more work is required to raise awareness of the Budapest CRPS diagnostic criteria so as to promote early diagnosis and intervention. Future work to optimize clinical effectiveness should consider enhancing interdisciplinary service delivery that encourages a collaborative patient/clinician partnership; includes excellent patient education; and addresses modifiable patient‐related factors. Significance Health professionals expressed some level of difficulty recognizing the signs and symptoms of CRPS despite the majority of health professionals having had clinical experience exceeding 6 years in the field of CRPS. More work is required to raise awareness amongst clinicians of the Budapest CRPS diagnostic criteria so as to promote early diagnosis and intervention Health professionals' treatment aims reflected the current clinical guidelines however, a lack of resources and fragmented care were frequently cited as barriers to achieving these.