Text message conversations between peer supporters and women to deliver infant feeding support using behaviour change techniques: A qualitative analysis.

OBJECTIVE: To analyse text message conversations between peer supporters (called Infant Feeding Helpers - IFHs) and new mothers using qualitative methods to understand how peer support can influence and support women's feeding experiences. DESIGN: Qualitative analysis of text messages conversations using both inductive thematic and deductive content approaches to coding. Thematic analysis of the text message transcripts and deductive content analysis was used to code if Behaviour Change Techniques (BCTs) were employed by IFHs in their interactions with women. BCTs coded in text messages were then compared with those tabulated from antenatal meeting recordings and documented in interview transcripts. PARTICIPANTS AND SETTING: 18 primiparous women and 7 Infant Feeding Helpers from one community site in South-West England. FINDINGS: Three key themes were identified in the18 text message conversations (1679 texts): 'breastfeeding challenges', 'mother-centred conversations', and 'emotional and practical support'. The core BCTs of 'social support' and 'changing the social environment' were found at least once in 17 (94 %) and 18 (100 %) text message conversations respectively. Meanwhile, 'instruction to perform the behaviour' was used at least once in over 50 % of conversations. Generally, the use of BCTs was greatest between birth and two weeks during a period of daily texts when women reported many feeding challenges. The number and range of BCTs used in text messages were similar to those documented in audio-recorded meetings and interview accounts. CONCLUSION AND IMPLICATIONS: Infant Feeding Helpers were able to provide engaging and successful breastfeeding peer support through text messages. Messaging was shown to be an appropriate and accessible method of delivering BCTs focussing on 'social support' and 'changing the social environment'. Peer supporters delivering BCTs via text messages is acceptable and appropriate to use if in-person support is limited due to unforeseen circumstances such as the COVID-19 pandemic.

Reimagining scientific conferences-a Keystone Symposia report.

Scientific conferences play an important role in advancing research, scholarship, and the careers of emerging scientists. The COVID-19 pandemic offered meeting organizers and researchers alike an opportunity to reimagine what scientific conferences could look like. Virtual conferences can increase inclusivity and accessibility while decreasing costs and carbon emissions. However, it is generally perceived that the digital world fails to adequately recapitulate many of the benefits of in-person face-to-face interactions; these include socializing, and collaborative environments that can forge new research directions and provide critical career development opportunities. On November 15 and 16, 2022, researchers, representatives from diverse scientific conference organizations, leaders in virtual platform technologies, and innovators in conference design gathered online for the Open Access Keystone eSymposium "Reimagining Scientific Conferences." The meeting focused on how conference organizers can leverage lessons from the pandemic and emerging virtual platforms to engage new audiences, rethink strategies for scientific exchange, and decrease the carbon footprint of in-person events.

Who Gets to Breastfeed? A Narrative Ecological Analysis of Women's Infant Feeding Experiences in the UK.

The early post-natal period is a critical period in women's infant feeding journeys, often marked by high levels of unintended breastfeeding cessation. Previous research has argued that infant feeding should be perceived within a complex system whereby factors operating at different ecological levels (i.e., individual, social/community networks, cultural/institutional) interact to affect individual behaviors. However, currently, more work needs to be done to implement an ecological approach in breastfeeding programs. We adopted a complex-systems lens approach to explore how multi-level factors-individual, mother-infant dyad, health service, family and social networks, and wider community infrastructure-interacted with women's motivations and experiences of breastfeeding. We undertook a secondary analysis of 24 women's interviews; all the women had a strong antenatal intention to breastfeed and were expecting their first baby. The interviews were collected during the UK-based Assets-based feeding help Before and After birth (ABA) feasibility trial when their infant was aged between 4 and 21 weeks. Categorical content analysis was used to explore the interrelationships between key factors and to identify different infant feeding typologies. Two different typologies emerged: "disappointed" (n = 7) and "by hook or by crook" (n = 17). "Disappointed" women had stopped breastfeeding early; women classified as "by hook or by crook" continued breastfeeding despite facing challenges. Sociodemographic, social, and service level differences between the typologies were noted. "Disappointed" women were more likely to be younger, White-British, to have considered mixed-feeding antenatally and experienced negative breastfeeding support from healthcare professionals and personal networks. Infants of "disappointed" women were more likely to have received unexpected "top-ups" and to be perceived as having infant feeding difficulties. Women classified as "by hook or by crook" were just as likely as "disappointed" women to experience birth-related complications, but demonstrated more proactive help-seeking behaviors, had positive experiences of personal/professional support and accessed wider support. While further research is needed to consolidate and/or refute the typologies, the ecological approach shifts the focus away from mothers' decisions to consider the multi-level factors that need to be in place to enable women to breastfeed successfully. Further work to encourage help-seeking behaviors and toward improving facilities, support, and services is needed.

Bridging the Research Gap between Live Collections in Zoos and Preserved Collections in Natural History Museums.

Zoos and natural history museums are both collections-based institutions with important missions in biodiversity research and education. Animals in zoos are a repository and living record of the world's biodiversity, whereas natural history museums are a permanent historical record of snapshots of biodiversity in time. Surprisingly, despite significant overlap in institutional missions, formal partnerships between these institution types are infrequent. Life history information, pedigrees, and medical records maintained at zoos should be seen as complementary to historical records of morphology, genetics, and distribution kept at museums. Through examining both institution types, we synthesize the benefits and challenges of cross-institutional exchanges and propose actions to increase the dialog between zoos and museums. With a growing recognition of the importance of collections to the advancement of scientific research and discovery, a transformational impact could be made with long-term investments in connecting the institutions that are caretakers of living and preserved animals.

The challenge of equipoise: qualitative interviews exploring the views of health professionals and women with multiple ipsilateral breast cancer on recruitment to a surgical randomised controlled feasibility trial.

BACKGROUND: A multicentre feasibility trial (MIAMI), comparing outcomes and quality of life of women with multiple ipsilateral breast cancer randomised to therapeutic mammoplasty or mastectomy, was conducted from September 2018 to March 2020. The MIAMI surgical trial aimed to investigate recruitment of sufficient numbers of women. Multidisciplinary teams at 10 breast care centres in the UK identified 190 with MIBC diagnosis; 20 were eligible for trial participation but after being approached only four patients were recruited. A nested qualitative study sought to understand the reasons for this lack of recruitment. METHODS: Interviews were conducted from November 2019 to September 2020 with 17 staff from eight hospital-based breast care centres that recruited and attempted to recruit to MIAMI; and seven patients from four centres, comprising all patients who were recruited to the trial and some who declined to take part. Interviews were audio-recorded, anonymised and analysed using thematic methods of building codes into themes and sub-themes using the process of constant comparison. RESULTS: Overarching themes of (1) influences on equipoise and recruitment and (2) effects of a lack of equipoise were generated. Within these themes, health professional themes described the barriers to recruitment as 'the treatment landscape has changed', 'staff preferences and beliefs' which influenced equipoise and patient advice; and how different the treatments were for patients. Patient themes of 'altruism and timing of trial approach', 'influences from consultants and others' and 'diagnostic journey doubts' all played a part in whether patients agreed to take part in the trial. CONCLUSIONS: Barriers to recruiting to breast cancer surgical trials can be significant, especially where there are substantial differences between the treatments being offered and a lack of equipoise communicated by healthcare professionals to patients. Patients can become overwhelmed by numerous requests for participation in research trials and inappropriate timing of trial discussions. Alternative study designs to the gold standard randomised control trial for surgical interventions may be required to provide the high-quality evidence on which to base practice. TRIAL REGISTRATION: ISRCTN ( ISRCTN17987569 ) registered on April 20, 2018, and ClinicalTrials.gov ( NCT03514654 ).

'Asking for help': a qualitative interview study exploring the experiences of interpersonal counselling (IPC) compared to low-intensity cognitive behavioural therapy (CBT) for women with depression during pregnancy.

BACKGROUND: Treating depression early in pregnancy can improve health outcomes for women and their children. Current low-intensity psychological therapy for perinatal depression is a supported self-help approach informed by cognitive behavioural therapy (CBT) principles. Interpersonal counselling (IPC) may be a more appropriate low-intensity talking therapy for addressing the problems experienced by pregnant women with depression. A randomised feasibility trial (ADAGIO) has compared the acceptability of offering IPC for mild-moderate antenatal depression in routine NHS services compared to low-intensity CBT. This paper reports on a nested qualitative study which explored women's views and expectations of therapy, experiences of receiving IPC, and Psychological Wellbeing Practitioners (PWPs - junior mental health workers) views of delivering the low-intensity therapy. METHODS: A qualitative study design using in-depth semi-structured interviews and focus groups. Thirty-two pregnant women received talking therapy within the ADAGIO trial; 19 contributed to the interview study from July 2019 to January 2020; 12 who had IPC and seven who had CBT. All six PWPs trained in IPC took part in a focus group or interview. Interviews and focus groups were recorded, transcribed, anonymised, and analysed using thematic methods. RESULTS: Pregnant women welcomed being asked about their mental health in pregnancy and having the chance to have support in accessing therapy. The IPC approach helped women to identify triggers for depression and explored relationships using strategies such as 'promoting self-awareness through mood timelines', 'identifying their circles of support', 'developing communication skills and reciprocity in relationships', and 'asking for help'. PWPs compared how IPC differed from their prior experiences of delivering low-intensity CBT. They reported that IPC included a useful additional emotional component which was relevant to the perinatal period. CONCLUSIONS: Identifying and treating depression in pregnancy is important for the future health of both mother and child. Low-intensity perinatal-specific talking therapies delivered by psychological wellbeing practitioners in routine NHS primary care services in England are acceptable to pregnant women with mild-moderate depression. The strategies used in IPC to manage depression, including identifying triggers for low mood, and communicating the need for help, may be particularly appropriate for the perinatal period. TRIAL REGISTRATION: ISRCTN 11513120. 02/05/2019.

Interpersonal counselling versus perinatal-specific cognitive behavioural therapy for women with depression during pregnancy offered in routine psychological treatment services: a phase II randomised trial.

BACKGROUND: Up to one in eight women experience depression during pregnancy. In the UK, low intensity cognitive behavioural therapy (CBT) is the main psychological treatment offered for those with mild or moderate depression and is recommended during the perinatal period, however referral by midwives and take up of treatment by pregnant women is extremely low. Interpersonal Counselling (IPC) is a brief, low-intensity form of Interpersonal Psychotherapy (IPT) that focuses on areas of concern to service users during pregnancy. To improve psychological treatment for depression during pregnancy, the study aimed to assess the feasibility and acceptability of a trial of IPC for antenatal depression in routine NHS services compared to low intensity perinatal specific CBT. METHODS: We conducted a small randomised controlled trial in two centres. A total of 52 pregnant women with mild or moderate depression were randomised to receive 6 sessions of IPC or perinatal specific CBT. Treatment was provided by 12 junior mental health workers (jMHW). The primary outcome was the number of women recruited to the point of randomisation. Secondary outcomes included maternal mood, couple functioning, attachment, functioning, treatment adherence, and participant and staff acceptability. RESULTS: The study was feasible and acceptable. Recruitment was successful through scanning clinics, only 6 of the 52 women were recruited through midwives. 71% of women in IPC completed treatment. Women reported IPC was acceptable, and supervisors reported high treatment competence in IPC arm by jMHWs. Outcome measures indicated there was improvement in mood in both groups (Change in EPDS score IPC 4.4 (s.d. 5.1) and CBT 4.0 (s.d. 4.8). CONCLUSIONS: This was a feasibility study and was not large enough to detect important differences between IPC and perinatal specific CBT. A full-scale trial of IPC for antenatal depression in routine IAPT services is feasible. TRIAL REGISTRATION: This study has been registered with ISRCTN registry 11513120 . - date of registration 05/04/2018.

Audit of a Mindfulness-Based Cognitive Therapy Course Within a Prison.

This article examines the effectiveness of the 8-week mindfulness-based cognitive therapy course for depression within the prison population. Prisons see higher rates of mental ill health across the spectrum. This study examined how a manualized mindfulness approach to treating depression, a major cause of ill health, would affect this cohort. At the beginning of the course, participants were experiencing high levels of depression and anxiety, with low levels of mindfulness. At the end of 8 weeks, levels of depression and anxiety were reduced while mindfulness scores had increased, suggesting that mindfulness helped participants cope with difficult feelings and sensations. Retrospective study informed consent given by participants.

Exploring the use and experience of an infant feeding genogram to facilitate an assets-based approach to support infant feeding.

BACKGROUND: A lack of perceived social support influences women's infant feeding behaviours. The Infant Feeding Genogram is a visual co-constructed diagram which details people/services that can provide support to women and can facilitate a connection between mothers and their existing assets landscape. The aim of this study is to explore women's and infant feeding helpers' experiences and use of an infant feeding genogram delivered to the intervention group of the "Assets-based infant feeding help Before and After birth (ABA)" randomised feasibility trial. METHODS: 103 primiparous mothers aged 16+ years were recruited to the trial (trial registration number) in two sites (Site A and Site B) with low breastfeeding prevalence in the UK. Infant feeding helpers (IFHs) co-constructed a genogram at the first antenatal meeting for the intervention group (n = 50), and then provided proactive, woman-centered support from ~ 32 weeks gestation to up to 5 months postnatal. Infant feeding helpers' and women's experiences of the infant feeding genogram were collected via interviews or focus groups. Completed genograms were shared with researchers. Content analysis of the genograms and qualitative data from the interviews and focus groups were analysed thematically. RESULTS: Data comprised 32 completed genograms, and qualitative insights from all 13 infant feeding helpers (two focus groups; 4 interviews) and interviews with a purposive sample of 21 of 50 intervention group women between 4 and 21 weeks after birth. Content analysis of the genograms highlighted variations, with more personal, individualised genograms completed at Site B compared to Site A. The perceived impact of the genogram was related to the IFHs' application of the tool. The genogram was either used as intended to raise women's awareness of available assets and motivate help-seeking behaviour, or as a data collection tool with limited perceived utility. Negative and positive unintended consequences of genogram use were highlighted. CONCLUSIONS: The genogram has the potential to offer a woman, family and community-centred approach that focusses on building assets for infant feeding. However, variations in genogram application indicate that revised training is required to clarify the purpose and ensure it is used as intended. TRIAL REGISTRATION: ISRCTN ISRCTN14760978 ; Registered 30 January 2017.

Women's and peer supporters' experiences of an assets-based peer support intervention for increasing breastfeeding initiation and continuation: A qualitative study.

BACKGROUND AND CONTEXT: Breastfeeding peer support is valued by women, but UK trials have not demonstrated efficacy. The ABA feasibility trial offered proactive peer support underpinned by behaviour change theory and an assets-based approach to women having their first baby, regardless of feeding intention. This paper explores women's and infant feeding helpers' (IFHs) views of the different components of the ABA intervention. SETTING AND PARTICIPANTS: Trained IFHs offered 50 women an antenatal meeting to discuss infant feeding and identify community assets in two English sites-one with a paid peer support service and the other volunteer-led. Postnatally, daily contact was offered for the first 2 weeks, followed by less frequent contact until 5 months. METHODS: Interviews with 21 women and focus groups/interviews with 13 IFHs were analysed using thematic and framework methods. RESULTS: Five themes are reported highlighting that women talked positively about the antenatal meeting, mapping their network of support, receiving proactive contact from their IFH, keeping in touch using text messaging and access to local groups. The face-to-face antenatal visit facilitated regular text-based communication both in pregnancy and in the early weeks after birth. Volunteer IFHs were supportive of and enthusiastic about the intervention, whereas some of the paid IFHs disliked some intervention components and struggled with the distances to travel to participants. CONCLUSIONS: This proactive community assets-based approach with a woman-centred focus was acceptable to women and IFHs and is a promising intervention warranting further research as to its effect on infant feeding outcomes.

The ABA intervention for improving breastfeeding initiation and continuation: Feasibility study results.

The UK has low breastfeeding rates, with socioeconomic disparities. The Assets-based feeding help Before and After birth (ABA) intervention was designed to be inclusive and improve infant feeding behaviours. ABA is underpinned by the behaviour change wheel and offers an assets-based approach focusing on positive capabilities of individuals and communities, including use of a Genogram. This study aimed to investigate feasibility of intervention delivery within a randomised controlled trial (RCT). Nulliparous women ≥16 years, (n = 103) from two English sites were recruited and randomised to either intervention or usual care. The intervention - delivered through face-to-face, telephone and text message by trained Infant Feeding Helpers (IFHs) - ran from 30-weeks' gestation until 5-months postnatal. Outcomes included recruitment rates and follow-up at 3-days, 8-weeks and 6-months postnatal, with collection of future full trial outcomes via questionnaires. A mixed-methods process evaluation included qualitative interviews with 30 women, 13 IFHs and 17 maternity providers; IFH contact logs; and fidelity checking of antenatal contact recordings. This study successfully recruited women, including teenagers, from socioeconomically disadvantaged areas; postnatal follow-up rates were 68.0%, 85.4% and 80.6% at 3-days, 8-weeks and 6-months respectively. Breastfeeding at 8-weeks was obtained for 95.1% using routine data for non-responders. It was possible to recruit and train peer supporters to deliver the intervention with adequate fidelity. The ABA intervention was acceptable to women, IFHs and maternity services. There was minimal contamination and no evidence of intervention-related harm. In conclusion, the intervention is feasible to deliver within an RCT, and a definitive trial required.

Protocol for a feasibility randomised trial of low-intensity interventions for antenatal depression: ADAGIO trial comparing interpersonal counselling with cognitive behavioural therapy.

INTRODUCTION: One in eight women suffer from depression during pregnancy. Currently, low-intensity brief treatment based on cognitive behavioural therapy (CBT) is the only talking treatment widely available in the National Health Service (NHS) for mild and moderate depression. CBT involves identifying and changing unhelpful negative thoughts and behaviours to improve mood. Mothers in our patient advisory groups requested greater treatment choice. Interpersonal counselling (IPC) is a low-intensity version of interpersonal therapy. It may have important advantages during pregnancy over CBT because it targets relationship problems, changes in role and previous losses (eg, miscarriage). We aim to compare CBT and IPC for pregnant women with depression in a feasibility study. METHODS AND ANALYSIS: A two-arm non-blinded randomised feasibility study of 60 women will be conducted in two UK localities. Women with depression will be identified through midwife clinics and ultrasound scanning appointments and randomised to receive six sessions of IPC or CBT. In every other way, these women will receive usual care. Women thought to have severe depression will be referred for more intensive treatment. After 12 weeks, we will measure women's mood, well-being, relationship satisfaction and use of healthcare. Women, their partners and staff providing treatments will be interviewed to understand whether IPC is an acceptable approach and whether changes should be introduced before applying to run a larger trial.Several groups of patients with depression during pregnancy have contributed to our study design. A patient advisory group will meet and advise us during the study. ETHICS AND DISSEMINATION: Study results will inform the design of a larger multicentre randomised controlled trial (RCT). Our findings will be shared through public engagement events, papers and reports to organisations within the NHS. National Research Ethics Service Committee approved the study protocol. TRIAL REGISTRATION NUMBER: ISRCTN11513120.

The development and evaluation of a picture tongue assessment tool for tongue-tie in breastfed babies (TABBY).

Background: The presence of a tongue-tie (ankyloglossia) in an infant may lead to breastfeeding difficulties, but debate continues about which babies should be treated with frenotomy. The Bristol Tongue Assessment Tool (BTAT), a clear and simple evaluation of the severity of tongue-tie, is being used worldwide and translated into different languages. We aimed to produce a simple picture version of the BTAT to aid and enhance consistent assessment of infants with tongue-tie. Methods: The Tongue-tie and Breastfed Babies (TABBY) assessment tool was developed from the BTAT by a graphic designer, with iterative discussion with four practicing NHS midwives. The TABBY tool consists of 12 images demonstrating appearance of the infant tongue, its attachment to the gum and the limits of tongue mobility. The TABBY tool is scored from 0 to a maximum of 8.Two initial audits of the TABBY were undertaken at a large maternity unit in a secondary care NHS Trust, in Bristol UK from 2017 to 2019. TABBY was evaluated by five midwives on 262 babies with tongue-ties and experiencing breastfeeding difficulties who were referred for assessment to a tongue-tie assessment clinic using both BTAT and TABBY. Each pair of scores was recorded by one midwife at a time. A further training audit with 37 babies involved different assessors using BTAT and TABBY on each baby. Results: All midwives found the TABBY easy to use, and both audits showed 97.7% agreement between the scores. We suggest that a score of 8 indicates normal tongue function; 6 or 7 is considered as borderline and 5 or below suggests an impairment of tongue function. Selection of infants for frenotomy required an additional breastfeeding assessment, but all infants with a score of 4 or less in the audits had a frenotomy, following parental consent. Conclusions: The TABBY Assessment Tool is a simple addition to the assessment of tongue-tie in infants and can provide an objective score of tongue-tie severity. Together with a structured breastfeeding assessment it can inform selection of infants for frenotomy. It can be used by clinical staff following a short training and will facilitate translation into other languages.

Protocol for a feasibility trial for improving breast feeding initiation and continuation: assets-based infant feeding help before and after birth (ABA).

INTRODUCTION: Breast feeding improves the health of mothers and infants; the UK has low rates, with marked socioeconomic inequalities. While trials of peer support services have been effective in some settings, UK trials have not improved breast feeding rates. Qualitative research suggests that many women are alienated by the focus on breast feeding. We propose a change from breast feeding-focused interactions to respecting a woman's feeding choices, inclusion of behaviour change theory and an increased intensity of contacts in the 2 weeks after birth when many women cease to breast feed. This will take place alongside an assets-based approach that focuses on the positive capability of individuals, their social networks and communities.We propose a feasibility study for a multicentre randomised controlled trial of the Assets feeding help Before and After birth (ABA) infant feeding service versus usual care. METHODS AND ANALYSIS: A two-arm, non-blinded randomised feasibility study will be conducted in two UK localities. Women expecting their first baby will be eligible, regardless of feeding intention. The ABA infant feeding intervention will apply a proactive, assets-based, woman-centred, non-judgemental approach, delivered antenatally and postnatally tailored through face-to-face contacts, telephone and SMS texts. Outcomes will test the feasibility of delivering the intervention with recommended intensity and duration to disadvantaged women; acceptability to women, feeding helpers and professionals; and feasibility of a future randomised controlled trial (RCT), detailing recruitment rates, willingness to be randomised, follow-up rates at 3 days, 8 weeks and 6 months, and level of outcome completion. Outcomes of the proposed full trial will also be collected. Mixed methods will include qualitative interviews with women/partners, feeding helpers and health service staff; feeding helper logs; and review of audio-recorded helper-women interactions to assess intervention fidelity. ETHICS AND DISSEMINATION: Study results will inform the design of a larger multicentre RCT. The National Research Ethics Service Committee approved the study protocol. TRIAL REGISTRATION NUMBER: ISRCTN14760978; Pre-results.

"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.

Estimating discharge dates using routinely collected data: improving the preparedness of parents of preterm infants for discharge home.

The length of stay for moderately preterm infants has progressively become shorter in the UK in recent years but staff still commonly inform parents that their baby will go home around their estimated date of delivery (EDD). Parents need as much notice as possible to prepare for the discharge of their baby, and to gain the necessary skills and knowledge to care for their infant safely. We report the use of routinely collected neonatal data to develop and implement a simple centile chart for date of discharge from hospital, which allows staff and parents to predict the likely discharge date more accurately for preterm infants, most of whom now go home more than 3 weeks before their EDD. This information allows better and timelier planning for discharge of such infants, by parents and staff.

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.

What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM.

BACKGROUND: Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME. AIM: The aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME. METHODS: Twenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8-17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way. RESULTS: Children identified four key themes (health outcome domains): 'symptoms' that fluctuated, which caused an unpredictable reduction in both 'physical activity' and 'social participation' all of which impacted on 'emotional well-being'. These domains were influenced by both 'management' and 'contextual factors', which could be positive and negative. The relationship between healthcare and school was considered pivotal. CONCLUSIONS: Children's descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME. TRIAL REGISTRATION NUMBER: ISRCTN81456207.