Bronchiolitis is a viral lower respiratory tract infection of infancy and a major cause of infant morbidity. Respiratory syncytial virus is the most common cause of bronchiolitis. The majority of infants infected with bronchiolitis will have mild symptoms, lasting up to five days with the infant being successfully managed at home. However, up to 3% of all infants will be admitted to hospital for supportive therapy, such as oxygen and/ or fluids. A small proportion of these hospitalised infants (10%) will rapidly deteriorate further and require critical care admission for either invasive or non-invasive ventilation. Many clinical trials have been undertaken to evaluate a number of pharmaceutical interventions used to treat bronchiolitis. However, no treatment intervention has been proven to be effective. A large proportion of these clinical trials used clinical severity scores as an outcome measure. These clinical severity scores had not undergone any rigorous development and validation as recommended by the Food and Drug Agency (FDA) when developing an outcome measure for clinical trials. This thesis sets out the psychometric methods used to develop and validate the Liverpool Infant Bronchiolitis Severity Score – Proxy Reported Outcome Measure (LIBSS-PRO). The premise of the LIBSS-PRO is two-fold. Firstly, the LIBSS-PRO has been primarily developed for use in daily clinical management to identify infant improvement or deterioration. This will contribute to the standardisation of patient care and facilitate clinical decision making. Secondly, by fulfilling the FDA criteria as an outcome measure the LIBSS-PRO will improve the quality of future clinical trials of treatment interventions for bronchiolitis. The study was divided into three phases over three bronchiolitis seasons. The first phase was concerned with the development of the LIBSS-PRO. Items were identified from the literature and through stakeholder group workshops. A conceptual framework of bronchiolitis severity was developed. Consensus methods were used to identify which items were considered the most important and to develop criteria for mild, moderate and severe bronchiolitis. The second phase determined the content validity of the LIBSS-PRO. The LIBSS-PRO was evaluated by a range of health care professionals working in a variety of clinical environments by applying the score to eligible infants. Cognitive interviewing of health care professionals was used to assess comprehension and interpretation of each section of the LIBSS-PRO. Finally, in phase three, clinical field testing was undertaken in a variety of clinical locations by health care professionals to establish construct and criterion validity and reliability of the LIBSS-PRO. Responsiveness to change and cross cultural validation will be assessed in future clinical trials.

The HIV/AIDS prevalence rate in the Caribbean is second only to Sub-Saharan Africa and higher than the global rate. HIV/AIDS presents a real threat to children as they account for one in six global AIDS-related deaths and one in seven new global HIV infections. Furthermore, the number of new cases of children in the region is growing. Despite the impact of HIV/AIDS on Caribbean children, few research studies have been undertaken on the psychosocial issues that affect them and studies that include children’s perspectives seem to be even more lacking. This thesis is based on original research carried out in the Republic of Trinidad and Tobago. This study has examined the psychosocial issues that exist for children living with HIV in Trinidad and Tobago and has explored, from the perspectives of both children and their mothers, the types of supports that are available or accessed. The aims of the research were to 1) examine the psychosocial issues that affect children with acquired HIV/AIDS in Trinidad (the children in this research acquired HIV from their mothers) and 2) to explore the support that exists and gaps that may be necessary for their improved quality of life. It is hoped that intervention strategies will be gleaned from this research to assist future interdisciplinary teams that interact with this population. The methodology was based on a grounded theory approach (Strauss & Corbin 1990), and consisted of theoretical sampling and constant comparison throughout data analysis (open, axial, and selective coding) using a case triad (triad refers here to perspectives of three different actors). Four cases were purposively selected, each ‘case’ comprising a mother who was HIV positive, an “HIV Friend” (primary support figure, 4 in total) identified by the mother, and a child living with HIV (there were two children in one family, making five children in total, aged between five and thirteen years) – each of whom was interviewed. In addition, three mothers who did not tell their children of their status were also interviewed. These additional interviews were the result of theoretical sampling to explore two themes that emerged as significant in the first stage of analysis: 1) How “secrecy” was manifested in the lives of families coping with HIV and 2) The role of mothering. In total sixteen persons were interviewed. The findings produced three core categories, namely 1) the cyclical and complex nature of secrecy as a strategy to protect children from stigma and discrimination, 2) the impact on children of living with HIV-AIDS, including their role as protectors of HIV-positive mothers and 3) Mothering with HIV-AIDS. The study showed that these families, though impacted by uncertainty about the future, fear of dying and societal rejection, and for the large part financially and materially disadvantaged, were in-tact and functioned well. Furthermore these families had created a ‘new normal’ in which the secrecy about HIV was central and around which a range of behaviours, social codes and perceived consequences for breaches (of the secret) shaped relationships in both explicit and implicit ways. This indicates a high level of resourcefulness and resilience on the part of the women and their children. However the pressure to maintain the secret created additional challenges for women and children already impacted by a high level of stress because of HIV. Additionally, the rules of secrecy meant that women were unable to talk about their circumstances or needs and consequently had very little support either for themselves or their children. From the child’s point of view, the secret required them to be conscious of what they said and to whom and although not able to talk about HIV, paradoxically the secret had the effect of making HIV more dominant in their lives. This was despite the fact that children themselves did not seem to regard HIV as central in their everyday worlds. Mothering was also a significant theme to emerge from the study and it appeared that such was the importance of the role of mother, as a primary signifier of Caribbean womanhood, that the decision to have children was more important than the risk of passing on HIV. Two of the mothers had gone on to have more children even though their first child had been born with the virus. The study showed that being a good mother in a family affected by HIV means being able to protect children from the implications of the virus being known about outside the family and thus mothering was intertwined with the creation and maintenance of the secret. New understandings about the effects of HIV/AIDS on children and several recommendations aimed at improving services and resources for these children and their families have emerged from the study. Implementation of these recommendations would auger well for improved quality of life in the future, as children continue to live with the chronic illness of HIV/AIDS. The sample was small (16 participants in all) and as a qualitative study, no claims are made about with respect to any generalisations of the findings.

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.

Master of Science

Although recognised by policy incentives shaping children’s services, research and service development for children with complex healthcare needs have received limited attention. Both health-care professionals and families of those children affected frequently report fragmented care and unmet needs in the literature. Not only is the wellbeing of the family and health of the child jeopardised, but also the lack of consistent service coordination between diagnosis, impairment, functional need or disability, directly contributes to a lack of data for the subgroup of children with complex healthcare needs. In this scoping review, key themes are identified, proposing priorities for innovation of future services. It is clear from the literature, longitudinal data analysis providing a more accessible platform for service evaluation and improvement, specialist training for key workers, and further research around definitions and classification systems, is lacking. / White Rose Scholarship

Thesis (M.S.P.H.)--University of Michigan, 1939.

Thesis (M.P.H.)--University of Michigan, 1946.

Thesis (M.S.P.H.)--University of Michigan, 1941.

Thesis (M.P.H.)--University of Michigan, 1946.

Thesis (M.S.P.H.)--University of Michigan, 1941.