Background: Despite the growing evidence about acute pain management in children and the availability of practice guidelines, children still experience unnecessary pain when in hospital. Involving parents in their child’s pain care has been identified as being central to the pain management in children. However, little is known about how parents and nurses work in partnership in acute children’s wards to care for the child experiencing pain. This thesis explored the experiences and perceptions of parents and nurses and the extent to which parents are involved and partners in the child’s pain care, and the factors that influence parental involvement in care. The family-centred care practice continuum was the theoretical framework that underpinned the study. Methods: A qualitative ethnographical study using non-participant observation and follow up interviews was undertaken. Fourteen nurses and 44 parents/grandparents participated, recruited from the children’s wards of two district general hospitals. The framework approach underpinned data analysis. Findings: While some evidence of parental involvement was identified, the study revealed variations in the way parents are involved in their child’s pain care. A range of challenges were highlighted in relation to the implementation of family-centred care as an approach to promote parental involvement in care. Parents wanted to be more involved in their child’s pain care, and act as an advocate for their child, particularly when they perceived their child’s pain care to be sub-optimal. At times nurses created barriers to parental involvement in pain care, for example, by not communicating effectively with parents and planning pain care without involving parents. The ‘Pillars of Partnership in Pain Care Model’ is offered as an alternative approach to engaging with parents, to address the barriers to involvement and assist nurses shift from a paternalistic approach to involvement to one of working collaboratively with parents in the context of the care of child in pain. Conclusions and implications for practice: Parental involvement in their child’s acute pain care can improve the child’s pain experience, increase parents’ satisfaction in care and reduce parental anxiety. The challenge for nurses is to embrace parental contribution to care and develop the confidence to support parents to advocate for their child.

Molluscum contagiosum (MC) is a common skin condition in children presenting to primary care in the United Kingdom (UK) and is typically diagnosed based on its distinct appearance. There are limited data on the epidemiology of MC in UK children. Little is known about its presenting symptoms, time to resolution, likelihood of transmission and impact on quality of life (QoL), highlighted within a systematic review of the epidemiology of childhood MC presented early in this thesis. This thesis aimed to address this gap in evidence. A retrospective longitudinal cohort of 9,245,847 children registered at primary care centres in the UK extracted routinely collected data from the Clinical Practice Research Datalink (CPRD). The study highlighted decreasing trends in consultation rates for MC by 50% during the 10 year study period 2004-13. Children who were previously diagnosed with atopic eczema were more likely to have a future MC consultation than controls. The ‘Molluscum Contagiosum Diagnostic Tool for Parents’ (MCDTP) was developed to aid parents in diagnosing spots, lumps or bumps on a child’s skin as being MC or not. The MCDTP was assessed in primary care centres to measure its diagnostic accuracy (n=203, sensitivity=92%, specificity=88%), and used to recruit a prospective community cohort of 306 UK children with MC. Results showed that MC lesions were most common on legs and arms, and nearly 70% of children had lesions in more than one site. The average time to resolution was 12 months, however over a quarter still had lesions after 18 months and 12% after 24 months. Nearly half of households reported transmission to one or more children from an index case. Overall MC had a small effect on QoL however, 1 in 10 children experienced a very severe effect on QoL. The findings presented in this thesis can facilitate self-care of MC in the community where parents can self-diagnose their child’s spot, lumps or bumps on the skin as MC or not using the MCDTP. These data can provide parents, and other interested stakeholders, with accurate information of the epidemiology of the condition to aid the management in both clinical and community settings.

This thesis analyses the effects of various structural and organisational characteristics of specialist neonatal units on the clinical and economic outcomes of infants treated within them. Data are utilised from the National Neonatal Research Database (NNRD) which is extracted from the electronic patient records of all infants admitted to the vast majority of neonatal units in England over the period 2006-13 along with national healthcare expenditure and demographic data. Firstly, I examine the effects of neonatal unit volume and designation on infant clinical outcomes. In 2003, neonatal units in England and Wales were re-organised into networks to facilitate access to high level and volume neonatal units for the sickest infants as infants treated in these units had previous been shown to be at less risk of adverse outcomes. No previous studies have examined the effects of neonatal unit volume and designation in such a networked setting. Secondly, I estimate the effect of neonatal healthcare expenditure on the risk of mortality, and in so doing determine the cost-effectiveness of neonatal healthcare. Thirdly, I analyse the effect of nurse to patient ratios in neonatal intensive care on the risk of mortality, recent evidence has demonstrated that neonatal units are often understaffed with respect to clinical guidelines, yet little is known about the consequences of this on infant clinical outcomes. Finally, I explore the effect of local economic conditions at the time of conception on infant health at birth. The number of admissions to neonatal specialist healthcare units has increased in recent years to approximately 10% of all live births. Understanding the mechanisms underlying this increase is important both for healthcare capacity planning and also development of policies aimed at improving infant health at birth. The results in this thesis support policies aimed at increasing the proportion of infants born in hospitals with high volume neonatal units along with an increased provision of resources for neonatal healthcare.

The published research and personal practice experience from Sub-Saharan Africa indicate that up to 50% of child deaths occurring in hospital-based paediatric emergency care (PEC) take place within 24 hours of admission. This study contributes to the literature, by identifying important factors influencing mortality and other care outcomes among children admitted to a named children’s emergency room in Lagos, Nigeria (CHER) in this period of time. The study accepted the theoretical concept of a multifactorial causation of population health outcomes. Three explanatory frameworks are jointly considered in order to locate the chronological PEC pathway within a wider societal and environmental reality. A systemic review of the published literature on outcomes in developing country paediatric emergency rooms (PER), revealed that delayed progress through the PEC pathway was potentially causal of poor outcomes. Factors identified as contributing to delays included socioeconomic and cultural factors affecting parental healthcare seeking and functional features of individual PER. The literature also made a case for the role of the failures of wide-scale preventive interventions towards increasing the baseline burden for PEC in these contexts. The limitations of the previous research included the inability of the research approaches to allow an appreciation of the nature of the implicated factors and their roles relative to outcomes within the chronological PEC process. This study was conducted as a single-site case study due to the clear functional and conceptual boundaries offered by an examination of the first 24 hours in a named facility. The researcher’s social constructivist worldview emphasised the value of experiential information in examining PEC processes, as well as directing the collection analysis, and interpretation of the real-life, context-situated data. The data collection process involved 3 months of non-participant observation, 18 unstructured interviews, 4 focus groups, and the collation of 6 months’ worth of patient admission data. An inductive approach to analysis was followed by the triangulation of the emerging findings, and a final interpretation which patternmatched emergent themes against theoretical linkages towards PEC outcomes. This study identified prevailing sociocultural attitudes to illnesses in children, the use of alternative treatment modalities, public perceptions of available private care, and functional barriers in the CHER as contributing to the mortality risks and delayed progression through the in facility PEC. The study offers recommendations encouraging the public promotion of safer use of Home based self-medication HBSM, attendance at appropriate facilities, and improvements to available in-facility services, as well as the regulation of the emergency referral practice for private health providers in Lagos. It concludes by outlining the directions for the publication of the findings and suggesting possible future research.

The focus of this thesis is on the early caregiving environment and social interactions of preterm infants. Chapter one introduces the topic of premature delivery, including infant outcomes, parent’s caregiving role, infant’s role in their own development, and dyadic interactions between parents and their premature infants. Chapter two introduces methodological difficulties in the study of preterm infants. The chapter also provides an overview of the longitudinal study of preterm infants’ development that provided the majority of the data for this thesis. Chapter three introduces a new measure of parenting principles and practices, the Baby Care Questionnaire (BCQ). The BCQ measures how parents approach caring for their infant in three contexts – sleeping, feeding and soothing. The chapter documents the development and psychometric properties of the BCQ. Chapter four studies the impact of premature birth on maternal cognitions and principles about caregiving. The chapter presents data on the consistency of maternal cognitions about child development and caregiving at an individual and group level. Chapter five studies the impact of premature birth on infant attention, in particular social attention. The chapter reports data on the style of preterm infants’ looking to a novel stimulus, how these infants followed an experimenter’s attention to a target and their regulation abilities (as reported by their mother). Chapter six studies the impact of premature birth on interactions between mothers and their infants. The chapter uses statistical techniques to represent streams of behaviour to examine different responding to person- and object-directed behaviours by mothers and their premature infants. Chapter seven brings together these findings and discusses future work.

Eight young people (aged 9-14) took part in interviews about indiscriminately friendly behaviour. The majority of the sample had a history of maltreatment and placements within foster and care settings. Clinicians and guardians identified these young people as indiscriminately friendly, which was supported by data provided by the Relationships Problems Questionnaire. Interview transcripts were analysed using Interpretative Phenomenological Analysis, a phenomenological qualitative methodology that is gaining growing acclaim within the field of clinical psychology. Emergent themes were drawn from interview data which highlighted the young people’s experiences of rejection and feelings of insecurity within their social interactions. While being aware of the risks associated with speaking to strangers and the efforts of adults attempting to protect them from the potential danger associated with indiscriminate friendliness this group of young people demonstrated a trust of new people and a craving for kindness from others. Through their descriptions of social interactions, and the experience of the interviewer during her interactions with these young people, there was a strong appreciation of the control they exert upon others during social contact. These findings offer clinicians an insight into the social interactions of this vulnerable group of children.

Background / Aims: Maternal drug misuse in pregnancy is a significant clinical and public health problem. Consequences for the newborn infant include prematurity, intrauterine growth restriction (IUGR) and neonatal abstinence syndrome (NAS). There is increasing evidence that maternal drug misuse in pregnancy may have longer term adverse effects on infant visual and neurodevelopmental outcome. Most of the evidence regarding visual outcomes in particular derives from small uncontrolled studies with a lack of adequately powered, controlled studies to date. The visual evoked potential (VEP) can be used to assess the integrity and maturity of the infant visual pathway and both visual and neurodevelopmental abnormalities can be predicted by abnormal VEPs in infancy. Drug misuse is also associated with alteration of the VEP in adults and in animal models. Many drugs used in pregnancy can cross the placenta and enter the fetal circulation, including illicit drugs and prescribed methadone, which is the currently recommended treatment for pregnant opiate-dependent women. Hitherto few studies have investigated the effects of maternal drug misuse upon the newborn infant VEP. This study investigates in detail the effects of prescribed methadone and additional illicit drug use in pregnancy upon the infant VEP recorded at birth and at six months of age, and explores any association with NAS. The range and incidence of visual and neurodevelopmental abnormalities at six months of age is described, and how these relate to a history of NAS and the pattern of in utero drug exposure is explored. Pilot work: Pilot work demonstrated the feasibility of recording neonatal flash VEPs in a small group of infants exposed to methadone in utero, and showed that drug exposed infants had abnormal VEPs compared to unmatched controls. A further pilot study described longer term visual outcomes, which included nystagmus, reduced visual acuity and strabismus, in a selected group of infants and children exposed to methadone in utero, thus informing clinical and electrophysiological assessment at six months of age. The pilot studies were followed by a major prospective cohort study. Prospective Study: One hundred and two term infants of mothers prescribed substitute methadone during pregnancy and 50 comparison infants matched for birth weight, gestation and socio-economic group were recruited in the neonatal period. Flash and flicker VEPs were recorded from the occipital scalp of infants within three days of birth. Drug exposure was determined by maternal history, maternal and infant urine and meconium toxicology. Excess alcohol exposure in utero was determined by elevated fatty acid ethyl esters in meconium. Neonatal flash VEPs were classified as mature, typical, or immature according to waveform morphology, and amplitude and latencies measured. Flicker VEPs were analysed using a fast-Fourier transformation and responses at each flicker frequency determined. The same cohort of drug-exposed and comparison infants was invited for clinical visual evaluation at six months of age in conjunction with pattern-onset VEPs and Griffiths developmental assessment. Results: Neonatal testing: Neonatal VEPs were successfully recorded from 100 drug-exposed infants and 50 matched comparison infants at a median age of 24 hours (IQR 13-44). Gestational age, birth weight and socio-economic group did not differ between groups. Flash VEPs from methadone-exposed infants had fewer P1 components (p=0.001), and were more likely to be of immature waveform (p<0.001) compared to comparisons. VEPs from methadone-exposed infants were also smaller in overall amplitude (median 27µV vs 39.5µV, p<0.001). The relative risk of an abnormal VEP in the methadone-exposed cohort was 5.6 with an attributable risk percent of 82%. The majority of infants were exposed to illicit drugs in addition to prescribed methadone, most commonly opiates (74%) and benzodiazepines (66%). VEPs did not differ between infants exposed to opiates only, those additionally exposed to benzodiazepines and those exposed to stimulants. Regression analysis confirmed that the difference in VEP parameters between drug-exposed and comparison infants was associated with methadone exposure and not other drugs of misuse. 48% of the methadone-exposed cohort developed NAS requiring pharmacological treatment; there was no association between neonatal VEPs and subsequent onset or severity of NAS. Flicker VEP analysis demonstrated an optimal flicker frequency of 4.6 Hz in both groups, but there were few differences in the proportion of responses between groups. Six month follow-up: Retention rate to six month follow-up was 79% for the methadone-exposed cohort and 52% for comparison infants. Age at assessment (median 27 weeks, range 26-30 wk), weight and OFC did not differ between groups. The demographic characteristics of comparison infants who were followed up were compared to those of comparison infants who were not followed up. There were no significant differences in birth weight (2 sample t-test p=0.445), OFC (2 sample t-test p=0.712), gestation (Mann-Whitney test p=0.984), 5-minute Apgar score (Mann-Whitney test p=0.263) or DEPCAT score (Mann-Whitney test p=0.258) between groups. Methadone-exposed infants were more likely to have visual abnormalities than comparison infants, even after correcting for excess in utero alcohol exposure (40% vs 8%; adjusted p=0.007). Abnormalities in the methadone-exposed cohort included nystagmus (11%), strabismus (25%) and reduced visual acuity (22%). The relative risk of an abnormal visual outcome in the methadone-exposed cohort was 5.1 with an attributable risk percent of 80%. Electrophysiological abnormalities persisted at six months of age: methadone- exposed infants had smaller amplitude pattern VEPs (25 μV vs 34 μV; p=0.005) with delayed peak latencies (115ms vs 99ms; p=0.019) and fewer responses at the small check size (p=0.003), compared to controls. Methadone-exposed infants had significantly lower neurodevelopmental scores compared to comparison infants (GQ 97 for cases vs 105 for controls; p<0.001), even after correcting for maternal smoking, antidepressant treatment and excess alcohol consumption during pregnancy. Infants exposed to poly-drug misuse and treated for NAS in the newborn period performed particularly poorly on their neurodevelopmental scores. Visual impairment was an independent predictor of poor neurodevelopmental outcome and most infants scoring <85 on neurodevelopmental assessment had co-existing visual problems. Conclusions: In utero exposure to prescribed methadone and other substances of misuse is associated with an alteration in visual electrophysiology in the newborn period suggestive of immature visual maturation. These changes are independent of additional benzodiazepine or stimulant exposure, and appear to be associated with prescribed substitute methadone. At six months of age, there is a high incidence of clinical visual abnormalities in infants exposed to methadone and other drugs of misuse in utero. Persistence of electrophysiological abnormalities beyond the neonatal period suggests that opiates may have a longer term effect on the developing visual system. Drug-exposed infants also have poorer neurodevelopmental scores than matched comparison infants after correcting for maternal smoking and excess alcohol intake. The bias of loss to follow-up was minimised by the high retention rate of drug-exposed infants. Although there was a higher loss of comparison infants, there were no differences in demographic characteristics between comparison infants followed up and those not followed up, suggesting the groups were similar. In addition, published data suggest the incidence of visual abnormalities described in the comparison population to be representative of the larger population.

Over the last 20 years it has been realised that neonates, infants and children experience pain and considerable stress responses to surgical and medical procedures which are harmful and cause fear, anxiety and distress(Walker, 2008). This thesis will describe a body of work published since 1992 whose aim has been to improve several aspects of pain management for children in terms of both efficacy and safety. The studies encompass research into the four main classes of analgesics used in paediatric clinical practice, namely local anaesthetics, opioids, non-steroidal anti-inflammatory drugs (NSAIDs) and paracetamol. In addition, control of the stress responses to tracheal intubation and to surgery has been studied with the availability of newer potent short-acting opioid agents and the anaesthetic agent propofol. The total body of work described covers 41 peer reviewed publications with 14 index papers selected for more detailed consideration. Local anaesthetics Several studies included in this thesis demonstrate the efficacy and safety of local anaesthetics in children. The optimum dose of the amide local anaesthetic, lignocaine, was determined for preventing pain on intravenous injection of propofol in children(Cameron et al., 1992) and this resulted in the widespread adoption of propofol as an induction agent. Several studies of propofol in children were conducted and this led to the development of more accurate computer-controlled delivery for maintenance of anaesthesia in children down to age 1 year(Morton et al., 1988, Marsh et al., 1990, Morton, 1990a, Marsh et al., 1991, Doyle et al., 1993c, Runcie et al., 1993, Morton, 1998b, Varveris and Morton, 2002). Topical amethocaine (as a gel and as a phase-change patch) was evaluated in children(Doyle et al., 1993a, Lawson et al., 1995, Lawson and Morton, 1998) and found to have a significantly more rapid onset of action than EMLA cream. This gel is now widely used in the UK. For nerve block, the efficacy and safety of fascia iliaca compartment block in children was demonstrated(Doyle et al., 1997) and the additional safety margin provided by adding the vasoconstrictor adrenaline to the local anaesthetic solution was proved by very low peak plasma concentrations of local anaesthetic. This was also demonstrated for caudal epidural blockade in infants(Hansen et al., 2001). New amide local anaesthetics were introduced in the last decade and ropivacaine was shown to be safe and effective for caudal epidural blockade in children(Ivani et al., 1998a). A collaboration with Strathclyde University led to the development of a new micro-assay method for measurement of local anaesthetics in small volumes of plasma with applicability to neonatal age groups of patients where ethically allowable blood sampling volumes are very small(Stumpe et al., 2000). Opioids The technique of patient-controlled analgesia was studied in children with an open feasibility trial in 1990(Lawrie et al., 1990) using conventional electronic syringe pumps and a further innovative study of a disposable elastomeric reservoir device in 1992(Irwin et al., 1992). The optimum regimen for PCA in children was determined by a series of studies(Doyle et al., 1994a, Doyle et al., 1993d, Doyle et al., 1994c, Munro et al., 2002) and a subsequent trial demonstrated that PCA could be delivered by the subcutaneous route(Doyle et al., 1994b). A further collaboration with Strathclyde produced a microassay method for morphine and metabolites(Watson et al., 1995). These studies showed that PCA is very efficacious and safe for perioperative pain conrol in children from age 5 years upwards and this technique is now in routine use worldwide(Walker, 2008, APAGBI, 2008, Morton, 2007, Lonnqvist and Morton, 2005b). NSAIDs and Paracetamol Following the demonstration of the utility of PCA in children, the technique was used to assess the analgesic efficacy of the NSAID diclofenac and paracetamol in children(Morton and O'Brien, 1999). This showed diclofenac to be particularly efficacious in producing a 40% morphine-sparing effect in children. An innovative study of NSAID eye drops showed them to be as effective as local anaesthetic eye drops for providing analgesia after strabismus surgery in children(Morton et al., 1997). Dosing regimens for paracetamol have evolved in the last decade based on better information on developmental pharmacokinetics and elucidation of the mechanism of action(Arana et al., 2001, Ottani et al., 2006, Pickering et al., 2006, Anderson and Palmer, 2006). There is renewed interest in this decade with the availability of new IV formulations of this old drug. In 1999(Hansen et al., 1999) we contributed to the PK data for paracetamol in neonates and infants which was subsequently used by authors from New Zealand to determine the population PK parameters in this young age group(Anderson and Palmer, 2006). We collated the knowledge on dosing regimens in 2001 in a review(Arana et al., 2001) which has informed the current recommendations in the BNFC. A further collaboration with Strathclyde University led to the development of a microassay for paracetamol and its metabolites from blood spots which has been taken up by Medecins Sans Frontieres as a possible method to use in the field in developing countries(Oliveira et al., 2002). The morphine-sparing efficacy of paracetamol was shown to be less than that due to diclofenac in the study mentioned above under NSAIDs(Morton and O'Brien, 1999). Controlling the stress response Noxious stimuli produce a stress response. A series of studies has shown that using short acting opioids, tracheal intubation could be safely performed without the aid of muscle relaxant drugs in children(Steyn et al., 1994, O'Brien et al., 1998, Robinson et al., 1998). This technique is now widely practiced. Two studies explored methods to reduce the stress response to open heart surgery with cardiopulmonary bypass, one of the most potent surgical stressors. Propofol anaesthesia was shown to significantly ameliorate this response(Laycock et al., 1992) and the newer opioid remifentanil was shown to be as efficacious as the older drug fentanyl for this purpose(Bell et al., 2004). Audit, guidelines and protocols Two major analgesic techniques have been audited in large national projects looking at the risk of epidural infusions in children(Llewellyn and Moriarty, 2007) and opioid infusion techniques in children (Morton, 2008c) and the results show these techniques to be of comparable safety. The evidence from the past 20 years has recently been synthesised into a clinical guideline for management of postoperative and procedural pain in children which has highlighted good practice based on high quality evidence but also revealed a paucity of evidence in some fields(APAGBI, 2008). Guidelines for safer paediatric procedural sedation practice is also described(SIGN, 2004, Playfor et al., 2006). The implementation of guidelines relies on the development of a local protocol and the evolution of the acute pain relief service protocol in Glasgow is described.(Morton, 2008a)

No description available.

Research exploring the physical health needs of people with intellectual disabilities is increasing. Unfortunately, first hand accounts from young people with intellectual disabilities remain largely absent. This is despite the fact that many of these individuals, albeit to a lesser extent than their non-disabled peers, are engaging in behaviours that can have a potentially negative impact on their health status (poor dietary habits, excessive alcohol consumption, and risky sexual behaviour). While knowledge alone does not always result in the adoption of healthier behavioural choices, it is an important prerequisite if young people are too keep themselves safe. In addition, understanding what young people know about health is pivotal to the formulation and development of appropriate education programmes and services. The limited research that does exist suggests that young people with intellectual disabilities have low levels of health knowledge, particularly in relation to sexual health and sexuality. Whereas public health messages are widely available concerning topics such as healthy eating and alcohol, information regarding sexual health is less accessible, owing to it being a private area of people’s lives. Much of our social/sexual development is largely experiential and gained through informal routes, such as interacting with peers. Yet the social networks of young people with intellectual disabilities may be compromised, which could partly account for the low levels of sexual knowledge reported. In support of this, sexual knowledge is also limited in young people with physical disabilities, another socially excluded group. Thus, the aim of this thesis is to further our understanding of how key features of social exclusion - impoverished social networks and access to sources of health information and experience - may impact upon young people with disabilities’ knowledge, attitudes and behaviour in relation to healthy eating, alcohol, pregnancy/contraception and HIV/AIDS. A substantial part of the research process was concerned with the development and piloting of appropriate methods with which to address these aims. Through structured and semi-structured questionnaires and vignette-based methodology, data from over 100 young people, aged 16-25, has been analysed and interpreted. Three groups of young people took part in the study, those with i) Intellectual disabilities (ID), ii) Physical disabilities (PD), and iii) typically developing, non-disabled (ND). With regards to health knowledge, the ID group had the poorest scores on the healthy eating and alcohol scales. However, the largest differences between the groups were related to health issues considered to be more personal and private, such as pregnancy and contraception, with both groups of young people with disabilities having lower levels of sexual health knowledge than their non-disabled peers. Thus, deficits in sexual knowledge did not just appear to be the result of the ID group’s cognitive deficits. Moreover, content analyses of open-ended questions on the questionnaire showed that all three groups held a surprising number of misconceptions about sexuality. It was also notable that young people with ID reported discussing sexual issues with friends and family less frequently than their non-disabled peers and reported being more reliant upon formal sources of sex education, such as that received through school or college. In addition, when participants with intellectual and physical disabilities were asked about how others would react to them drinking excessive amounts of alcohol and being open to a possible sexual encounter, using vignettes, they anticipated more negative attitudes from their friends for engaging in these potentially risky behaviours then their non-disabled peers. Although the majority of young people with disabilities also reported that their parents would disapprove of their actions, in contrast to their non-disabled peers, most of the young people with disabilities said that their parents’ views would matter to them. This research has highlighted the importance of people’s unique learning and socialisation experiences in shaping not only their health knowledge, but also their attitudes and beliefs. A number of implications for health education and for professionals working with both individuals with disabilities and their families are outlined. New avenues for research are also suggested.