Burden of Treatments for Respiratory Complications in Extremely Premature Infants: Interviews with Caregivers.

Introduction: Extremely premature (EP) infants (<28 weeks gestational age) with respiratory conditions after discharge from the neonatal intensive care unit (NICU) impose a significant burden on caregivers. This study explored caregiver burden post-NICU discharge and perceptions of meaningful change in infant chronic respiratory morbidity. Methods: Adult primary caregivers of EP infants 3-14 months corrected age were recruited through patient advocacy organizations or hospital centers in the USA, Northern Ireland, Germany, and Japan and interviewed by phone. Interviews explored caregiver experiences with infants with respiratory conditions, associated treatment burden, and meaningful change in infant respiratory morbidity as measured by treatment use. Qualitative analysis of interview data was performed using MAXQDA software. Sociodemographic data were summarized using descriptive statistics. Results: Forty-five caregivers (95.6% female) of EP infants were interviewed. Respiratory morbidities post-NICU discharge included coughing (78%), breathing difficulties (76%), wheezing (58%), and bronchopulmonary dysplasia/chronic lung disease of prematurity (56%). Respiratory medications were required by 87% of infants, 80% used home respiratory technology support (e.g., supplemental oxygen), 38% were re-hospitalized, and 33% had emergency department visits. Caregivers considered visits to the emergency department to be the most burdensome treatment requirement they experienced, and reduction in the number of emergency department visits was considered the most meaningful change in treatment use. Conclusion: These findings underscore the significant burden faced by caregivers of EP infants with respiratory morbidities. Development of treatments for respiratory complications should take into consideration the concerns and preferences of caregivers in order to provide a meaningful benefit.

Attention and social communication skills of very preterm infants after training attention control: Bayesian analyses of a feasibility study.

BACKGROUND: Very preterm (VP) infants (born 28 to <32 weeks of gestation) are at risk of cognitive delays and lower educational attainments. These risks are linked to anomalies in attention and information processing that emerge in the first years of life. Early interventions targeting attention functioning may equip VP infants with key building blocks for later attainments. METHODS: We tested the feasibility of a randomised trial where VP infants took part in a computerised cognitive procedure to train attention control. Ten healthy VP infants aged approximately 12 months (corrected age) and randomly allocated with 1:1 ratio to the training (interactive computerised presentations) or an active control procedure completed the study. Before and after the training programme, participating infants completed a battery of screen-based attention tests, naturalistic attention and communication tasks, and temperament assessments. In a previous study we analysed the data concerning feasibility (e.g. recruitment and retention). In the paper presented here we considered the infants' performance and used Bayesian regression in order to provide credible treatment estimates considering the data collected. RESULTS: Estimates indicate moderate treatment effects in visual memory: compared to controls, trained infants displayed improvements equivalent to 0.59 SD units. Trained infants also improved in their abilities to attend to less salient stimuli presentations by 0.82 SD units, compared to controls. However, results did not indicate relevant gains in attention habituation or disengagement. We also reported moderate improvements in focused attention during naturalistic tasks, and in directing other people's attention to shared objects. DISCUSSION: The results warrant further investigation concerning the effectiveness of training attention control in VP infants, extending this line of research beyond our small and homogeneous sample of healthy VP infants. This study also emphasises the utility of Bayesian approaches in estimating potentially relevant effects in small samples or exploratory studies. The scope for further research on early attention control training is discussed in light of studies indicating VP children's susceptibility to positive environmental inputs. TRIAL REGISTRATION: Registration ID: NCT03896490. Retrospectively registered at Clinical Trials Protocol Registration and Results System (clinicaltrials.gov).

Very preterm infants engage in an intervention to train their control of attention: results from the feasibility study of the Attention Control Training (ACT) randomised trial.

BACKGROUND: Very premature birth (gestational age between 28 and 31 + 6 weeks) is associated with increased risk of cognitive delay and attention deficit disorder, which have been linked to anomalies in the development of executive functions (EFs) and their precursors. In particular, very preterm (VP) infants display anomalies in controlling attention and gathering task-relevant information. Early interventions that support attention control may be pivotal in providing a secure base for VP children's later attainments. The Attention Control Training (ACT) is a cognitive training intervention that targets infants' abilities to select visual information according to varying task demands but had not been tested in VP infants. We conducted a feasibility study to test the processes we intend to use in a trial delivering the ACT to VP infants. METHODS AND DESIGN: We tested recruitment and retention of VP infants and their families in a randomised trial, as well as acceptability and completion of baseline and outcome measures. To evaluate these aims, we used descriptive quantitative statistics and qualitative methods to analyse feedback from infants' caregivers. We also investigated the quality of eye-tracking data collected and indicators of infants' engagement in the training, using descriptive statistics. RESULTS: Twelve VP infants were recruited, and 10 (83%) completed the study. Participants' parents had high education attainment. The rate of completion of baseline and outcome measures was optimal. VP infants demonstrated engagement in the training, completing on average 84 min of training over three visits, and displaying improved performance during this training. Eye-tracking data quality was moderate, but this did not interfere with infants' engagement in the training. DISCUSSION: The results suggest the ACT can be delivered to VP infants. However, challenges remain in recruitment of numerous and diverse samples. We discuss strategies to overcome these challenges informed by results of this study. TRIAL REGISTRATION: Registered Registration ID: NCT03896490 . Retrospectively registered at Clinical Trials Protocol Registration and Results System ( clinicaltrials.gov ).

Training attention control of very preterm infants: protocol for a feasibility study of the Attention Control Training (ACT).

BACKGROUND: Children born preterm may display cognitive, learning, and behaviour difficulties as they grow up. In particular, very premature birth (gestation age between 28 and less than 32 weeks) may put infants at increased risk of intellectual deficits and attention deficit disorder. Evidence suggests that the basis of these problems may lie in difficulties in the development of executive functions. One of the earliest executive functions to emerge around 1 year of age is the ability to control attention. An eye-tracking-based cognitive training programme to support this emerging ability, the Attention Control Training (ACT), has been developed and tested with typically developing infants. The aim of this study is to investigate the feasibility of using the ACT with healthy very preterm (VP) infants when they are 12 months of age (corrected age). The ACT has the potential to address the need for supporting emerging cognitive abilities of VP infants with an early intervention, which may capitalise on infants' neural plasticity. METHODS/DESIGN: The feasibility study is designed to investigate whether it is possible to recruit and retain VP infants and their families in a randomised trial that compares attention and social attention of trained infants against those that are exposed to a control procedure. Feasibility issues include the referral/recruitment pathway, attendance, and engagement with testing and training sessions, completion of tasks, retention in the study, acceptability of outcome measures, quality of data collected (particularly, eye-tracking data). The results of the study will inform the development of a larger randomised trial. DISCUSSION: Several lines of evidence emphasise the need to support emerging cognitive and learning abilities of preterm infants using early interventions. However, early interventions with preterm infants, and particularly very preterm ones, face difficulties in recruiting and retaining participants. These problems are also augmented by the health vulnerability of this population. This feasibility study will provide the basis for informing the implementation of an early cognitive intervention for very preterm infants. TRIAL REGISTRATION: Registered Registration ID: NCT03896490. Retrospectively registered at Clinical Trials Protocol Registration and Results System (clinicaltrials.gov).

The Perinatal-Neonatal Care Journey for Parents of Preterm Infants: What Is Working and What Can Be Improved.

Preterm birth is traumatic for parents, but there are few reports of parents' views on how the healthcare journey can be improved. This secondary thematic analysis used focus group data from parent consultation on proposed neonatal services standards for Northern Ireland to discover parents' experiences and recommendations for the perinatal, neonatal, and home care phases. Parents of preterm infants (n = 40) described their healthcare journey as positive overall and were grateful for the caring and competent care providers they encountered. However, parents described experiences that varied in quality and family centeredness across the care journey from perinatal to home care. They noted inconsistencies in healthcare team communication and provider practices and reported receiving limited emotional and practical support at all phases. In the perinatal phase, parents described difficult situations of discovering medical problems leading to preterm birth. In the neonatal intensive care unit phase, they also experienced unmet needs for involvement in decision making, financial strain, and difficulty coping with transfers and discharge. Parents experienced emotional challenges and lack of support in the home care phase. Parents identified actions that health systems can take to improve the consistency of care and communication across all phases and settings to encourage better collaboration and transitions in care.

A new threat to bees? Entomopathogenic nematodes used in biological pest control cause rapid mortality in Bombus terrestris.

There is currently a great deal of concern about population declines in pollinating insects. Many potential threats have been identified which may adversely affect the behaviour and health of both honey bees and bumble bees: these include pesticide exposure, and parasites and pathogens. Whether biological pest control agents adversely affect bees has been much less well studied: it is generally assumed that biological agents are safer for wildlife than chemical pesticides. The aim of this study was to test whether entomopathogenic nematodes sold as biological pest control products could potentially have adverse effects on the bumble bee Bombus terrestris. One product was a broad spectrum pest control agent containing both Heterorhabditis sp. and Steinernema sp., the other product was specifically for weevil control and contained only Steinernema kraussei. Both nematode products caused ≥80% mortality within the 96 h test period when bees were exposed to soil containing entomopathogenic nematodes at the recommended field concentration of 50 nematodes per cm(2) soil. Of particular concern is the fact that nematodes from the broad spectrum product could proliferate in the carcasses of dead bees, and therefore potentially infect a whole bee colony or spread to the wider environment.

Decision-making in community-based paediatric physiotherapy: a qualitative study of children, parents and practitioners.

Approaches to practice based on partnership and shared decision-making with patients are now widely recommended in health and social care settings, but less attention has been given to these recommendations in children's services, and to the decision-making experiences of non-medical practitioners and their patients or clients. This study explored children's, parents' and practitioners' accounts of shared decision-making in the context of community-based physiotherapy services for children with cerebral palsy. Semi-structured interviews were conducted with 11 children with cerebral palsy living in an inner city area of northern England, and with 12 of their parents. Two focus groups were conducted with 10 physiotherapy practitioners. Data were analysed using the constant comparative method. When asked explicitly about decision-making, parents, children and practitioners reported little or no involvement, and each party saw the other as having responsibility for decisions. However, when talking in more concrete terms about their experiences, each party did report some involvement in decision-making. Practitioners' accounts focused on their responsibility for making decisions about resource allocation, and thereby, about the usefulness and intensity of interventions. Parents indicated that these practitioner-led decisions were sometimes in conflict with their aspirations for their child. Parents and children appeared to have most involvement in decisions about the acceptability and implementation of interventions. Children's involvement was more limited than parents'. While parents could legitimately curtail unacceptable interventions, children were mostly restricted to negotiating about how interventions were implemented. In these accounts the involvement of each party varied with the type of issue being decided and decision-making appeared more unilateral than shared. In advocating shared decision-making, greater understanding of its weaknesses as well as its strengths, and greater clarity about the domains that are suitable for a shared decision-making approach and the roles of different parties, would seem a helpful step.

Current issues in the delivery of complementary therapies in cancer care--policy, perceptions and expectations: an overview.

This review discusses the current policies, perceptions and expectations around the use of complementary therapies (CTs) in cancer care. Whilst the last two decades have seen a marked increase in the demand for and provision of CTs amongst cancer patients, this has not been matched with an increase in the understanding of their effectiveness or their benefits to cancer patients. The issues discussed highlight the need to understand more fully the benefits of integrated services. Important questions raised here relate to what patients perceive as being the primary benefits/expected outcomes of CTs and how, if at all, they see their relationship with CT practitioners as different from that with "orthodox" clinicians. The challenge is clearly to find a common ground between "orthodox" professionals, CT practitioners and patients.