"Giving us hope": Parent and neonatal staff views and expectations of a planned family-centred discharge process (Train-to-Home).

BACKGROUND: Preparing 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 PARTICIPANTS: Qualitative 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. RESULTS: Parents 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. CONCLUSIONS: Using 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.

Promoting engagement in physical activity in early rheumatoid arthritis: A proof-of-concept intervention study.

OBJECTIVE(S): The aim of this study is to test the feasibility and acceptability of promoting engagement in physical activity in early rheumatoid arthritis (PEPA-RA) to inform a future trial. DESIGN: A 'proof of concept' study was carried out. SETTING: This study was conducted in community hospitals delivered by musculoskeletal primary care physiotherapists. PARTICIPANTS: Participants were 12 adults with rheumatoid arthritis (RA) diagnosed 6-24 months previously (nine females, three males; mean age 58 years, range 23-79). INTERVENTION: The intervention consisted of five sessions, that is, four group sessions and one individual session facilitated by a physiotherapist over 12 weeks including patient education and support for behaviour change as well as supervised practical exercise. MAIN OUTCOMES: The main outcomes were attendance, completion of outcome measures, adverse events, and participant and physiotherapist feedback views relating to the intervention. RESULTS: Overall attendance was 85%, with sessions missed due to illness or RA flare. Outcome measure completion ranged from 83% to 100%. There were no clinically meaningful changes in pain or function at 12 weeks, but mean 6-min walk distance improved from 394 to 440 m. No serious adverse events were reported, and participants were generally positive about the intervention. Suggested minor modifications for the group sessions included venue accessibility and ensuring that physical activity time was protected. Several participants indicated that they would have liked to receive the intervention earlier following diagnosis. CONCLUSIONS: PEPA-RA and the outcomes appear feasible and acceptable. Overall, small beneficial effects were noted at 12 weeks for most outcomes. Challenges to recruitment resulted in a smaller than anticipated sample size, and the majority of participants were active at baseline indicating that future recruitment needs to target less active individuals.

Complex regional pain syndrome: An international survey of clinical practice.

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.

A qualitative evaluation of the appropriateness, validity, acceptability, feasibility and interpretability of the Bristol Impact of Hypermobility (BIoH) questionnaire.

BACKGROUND: The Bristol Impact of Hypermobility (BIoH) questionnaire is a condition-specific patient-reported outcome measure developed for adults with Joint Hypermobility Syndrome (JHS). It has previously demonstrated strong concurrent validity with the Short-Form 36 health questionnaire and excellent test-retest reliability. OBJECTIVES: This study aimed to evaluate its appropriateness, validity, acceptability, feasibility and interpretability. DESIGN: A qualitative evaluation using semi-structured telephone interviews, incorporating a 'think aloud' exercise and additional prompts. METHOD: Adults with JHS (n = 11) were recruited through a patient organisation and physiotherapists with a professional interest in JHS (n = 9) were recruited through the same organisation and an online professional network. Interviews were transcribed and data synthesised using a framework matrix. FINDINGS: Patients and physiotherapists commented positively on the appropriateness, validity, acceptability and feasibility of the BIoH questionnaire. Physiotherapists assessed the interpretability of the questionnaire and commented that, whilst further information might be captured, the value of that information might be limited. The questionnaire was considered comprehensive with only a very limited number of potential missing areas related to use of hand-held technology, hair washing/drying and intimacy. Interestingly, keyboard use and hair washing were excluded during initial questionnaire development as they were rated as relatively unimportant. Intimacy was not considered a comfortable addition for all participants. CONCLUSIONS: Patients and physiotherapists regarded the BIoH questionnaire as a welcome addition to the toolkit available to assess those with JHS. It was broadly accepted as reflecting the experience of people with JHS in sufficient detail to support management.

Does family-centred neonatal discharge planning reduce healthcare usage? A before and after study in South West England.

OBJECTIVE: To implement parent-oriented discharge planning (Train-to-Home) for preterm infants in neonatal care. DESIGN: Before and after study, investigating the effects of the intervention during two 11-month periods before and after implementation. SETTING: Four local neonatal units (LNUs) in South West England. PARTICIPANTS: Infants without major anomalies born at 27-33 weeks' gestation admitted to participating units, and their parents. TRAIN-TO-HOME INTERVENTION: A 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 MEASURES: Perceived Maternal Parenting Self-Efficacy (PMP S-E) scores, infant length of stay (LOS) and healthcare utilisation for 8 weeks following discharge. RESULTS: Parents 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. CONCLUSIONS: Despite 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.

Life after the NNU: the long term effects on mothers' lives, managing a child at home with broncho-pulmonary dysplasia and on home oxygen.

This study investigated the long-term influences on mothers' lives having managed an infant with bronchopulmonary dysplasia (BPD), on home oxygen. 16 mothers UK wide, whose children had been at home for over a year, formed this project, and completed a semi-structured questionnaire. All mothers displayed a high standard of literacy and were English/British by their own description with no indication of cross cultural or ethnic differences. Mothers, giving up jobs and careers to remain home, were the primary carers for their child, and experienced long term emotional distress, suffered from lowered self-esteem over many years, self-blame in some cases and grieved over many aspects of pregnancy, birth, babyhood and early childhood. The fear of infection led to these mothers keeping themselves and their children isolated, compounded for half the mothers who faced negative reactions from the community when they did go out with their child.

Facilitators and barriers to engagement in parenting programs: a qualitative systematic review.

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.

Patients' perspectives on the educational preparation of cardiac nurses.

BACKGROUND: Over the last two decades the UK health service has endeavoured to place patient and public involvement at the heart of its modernisation agenda. Despite these aspirations the role of patients in the development of nursing curricula remains limited. AIM: A descriptive qualitative design was used to explore the views of cardiac patients about the educational preparation of cardiac nurses. METHOD: Eight participants attending an annual conference of a patient and carer support group were recruited to the study. A focus group was conducted to explore their views on how the educational preparation of cardiac nurses in the UK should develop. Tape-recorded data were transcribed and a thematic analysis was undertaken. FINDINGS: Four themes were identified: contradictions around practice and education; demonstrating compassion; delivering rehabilitation expertise; leadership in practice. Participants perceived that they had a valuable role in the educational development of nurses, enhancing nurses' understanding of how individuals live and adjust to living with cardiovascular disease. CONCLUSION: Cardiac patients believe that the education of cardiac nurses should be driven by experiences in practice, nevertheless they want nurses to be equipped to deliver care that is underpinned by a strong knowledge base and skills combined with an ability to engage, educate and deliver high quality care that is both compassionate and individualised.

The feasibility of using a parenting programme for the prevention of unintentional home injuries in the under-fives: a cluster randomised controlled trial.

BACKGROUND: Unintentional injury is the leading cause of preventable death of children over the age of 1 year in the UK and a major cause of attendance at emergency departments. Children having one injury are at increased risk of further injuries. Parenting programmes can reduce injuries in preschool children if delivered in the home and on a one-to-one basis. It is not known if group-based programmes delivered outside the home are effective. OBJECTIVES: To develop (1) a parenting programme to prevent recurrent unintentional home injuries in preschool children and (2) a tool for parents to report unintentional home injuries occurring to their preschool children. To assess the feasibility of delivering and evaluating the parenting programme through a cluster randomised controlled trial, specifically to (1) assess methods for the recruitment and retention of parents; (2) determine the training, equipment and facilities needed for the delivery of the programme; (3) establish appropriate primary and secondary outcome measures and methods for their collection; (4) determine how 'normal care' in a comparison arm should be defined; and (5) determine the resource utilisation and costing data that would need to be collected for the cost-effectiveness component of a future trial; and (6) produce estimates of effect sizes to inform sample size estimation for a main trial. DESIGN: Feasibility multicentre, cluster, randomised, unblinded trial. SETTING: Eight children's centres in Bristol and Nottingham, UK. PARTICIPANTS: Ninety-six parents of preschool children who had sustained an unintentional injury requiring medical attention in the previous 12 months. INTERVENTIONS: The First-aid Advice and Safety Training (FAST) parent programme, comprising parenting support and skills combined with first aid and home safety advice. MAIN OUTCOME MEASURES: Parent-reported medically attended injuries in the index child and any preschool siblings sustained during a 6-month period of observation. RESULTS: An 8-week parenting programme was produced, designed with participant-friendly, incrementally progressive content. A slimline, month-to-a-view injury calendar, spiral bound and suitable for hanging on a wall, was designed for parents to record injuries occurring to their preschool children during the 6-month period of observed time. Fifty-one parents were recruited (40 meeting eligibility criteria plus 11 following 'open invite' to participate); 15 parents completed the FAST parent programme and 49 provided data at baseline and during follow-up. Completion of the programme was significantly greater for participants using the 'open invite' approach (85%) than for those recruited using the original eligibility criteria (31%). Prototype resource use checklists, unit costs and total costs were developed for phases 0, 1 and 2 of the study for use in a future trial. CONCLUSIONS: This feasibility study has developed an innovative injury prevention intervention and a tool to record parent-reported injuries in preschool children. It was not feasible to recruit parents of children who had sustained a recent injury, or to ask health visitor teams to identify potential participants and to deliver the programme. A trial should target all families attending children's centres in disadvantaged areas. The intervention could be delivered by a health professional supported by a member of the children's centre team in a community setting. TRIAL REGISTRATION: Current Controlled Trials ISRCTN03605270. SOURCE OF FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 3. See the NIHR Journals Library website for further project information.