In adopting a tabula rasa approach, this study sought to determine those elements of care that should be prioritised in the service provision for families with children who have cancer. An innovative approach was adopted, as opposed to a conventional thesis structure, in which the literature in this study was used both as a means of informing the research rationale and design as well as being a data source in its own right and precluded providing a conventional literature review. Conventionally a thesis contains an introduction, chapters that review the literature, describe the methods, present results and ends with a discussion and conclusions. However, because there are many different elements to this thesis it is intended to structure it differently. Given that each form of data requires a different form of analysis, each data source has its own chapter. The reader will therefore find chapters headed The Professional Literature, The Charity Leaflets, and The Delphi Study. Furthermore, within each chapter methodological considerations, and the reasons for the methodological decisions taken are discussed. These are made in the appropriate places. Three sources of data were investigated including the professional and relevant charity leaflets literature and a Delphi study was undertaken to obtain the views of both professionals («=31) and families («=15). A content analysis was conducted for the first two sources of data and the first round of the Delphi study. All sources were essential in compiling a comprehensive list of desirable elements of care. The salient elements of care from the three sources of data were synthesised in order to identify elements that were common to all data sources. The elements of care were grouped under six headings as categories with relevant subcategories. The main categories were 'Communication and Cooperation', 'Maintaining Normality', 'Professional Issues', 'Research', 'Resources and 'Treatment Issues' for the professional literature and charity leaflets. Inter-rater reliability was established indicating a high level of agreement between both raters (Kappa = 0.677 and 0.958 respectively, p < 0.001 in both cases). 'Partnership in Care' was the analytical framework devised from the government directives of involving patients and their carers more in the healthcare process. The framework adopted was based on the families' participation as informed, decision making and empowered families. The framework was then used as a means by which the data for all three sources could be summarised, compared and contrasted. This then enabled a comparison between the service provision advocated for children with cancer and what the Delphi study of the families' opinions had highlighted. Given the rhetoric of policy directives in involving the family more in participation of care, the findings have shown that there is a disparity between the perspectives of the families and professionals. In line with policy directives, the professionals had prioritised the involvement of families as partners. However, their commitment to the partnership is questionable, as they did not regard more training in understanding the impact of the disease on the family as important. The main emphasis was on clinical service provision in terms of dedicated adolescent units in regional centres and emergency contact provision. The families placed an emphasis on communication in terms of their contact with the GP in avoiding late diagnosis, having a key worker, providing continuity between hospital and home, and training courses for the professionals to better understand the impact of the disease in the family. By contrast the professionals placed an emphasis on clinical provision namely age appropriate environment for care and 24 hour emergency contact and input from regional units. The findings suggest that in reality, families cannot always be equal partners with the professionals, nor do they necessarily wish to be. From the families' perspective a partnership in care has been defined as mutual respect, advocacy, encouragement, and having continuity of care between hospital and home, given by practitioners who have the expertise and who understand the impact of the disease on the family.

D.Cur. / Hospitalisation can be very traumatic for children – and this is especially true for the child admitted to a haematology-oncology unit. These children are subjected to an environment which they do not understand, nor have any control over, they are faced with many unfamiliar sights, sounds and smells and they have to undergo frightening and often painful procedures. In South Africa, there are no associations responsible for monitoring the environment that children are subjected to in hospital; neither does any Child Life Specialists, Hospital Play Therapists or scientifically based programs exist that can ensure that the psychosocial needs of children in hospital are met. The purpose of this study was to develop and describe a model for the facilitation of support for children through the mobilisation of resources according to their needs in a haematology-oncology unit in the private healthcare sector of South Africa. The following research questions were asked: • What are the needs of children in a haematology-oncology unit? • What are the resources that can be mobilised so that the needs of these children can be met? • How can support be facilitated for children in a haematology-oncology unit? During this study a theory generating, sequential explanatory (consisting of a quantitative field study followed by qualitative model development), explorative, descriptive as well as contextual research design was used. A model was developed according to the method of theory generation as explained by Chinn and Kramer (1995:77-102) and involved the following steps: Concept analysis (which includes concept identification as well as concept definition and –classification); description of the links and relationships between the concepts and a description and evaluation of the model. It became evident that children in a haematology-oncology unit are robbed of all feelings of control and choice in the situation, resulting in a sense of powerlessness. For this reason, the focus point of the model was changed to include the empowerment of children in a haematology-oncology unit as the main focus of the model. The final model aims at the facilitation of support in order to empower children in a haematology-oncology unit in the private healthcare sector of South Africa.

No description available.

published_or_final_version / Nursing Studies / Master / Master of Nursing

Thesis (Ph. D.)--University of North Texas, Aug., 2007. / Title from title page display. Includes bibliographical references.

Thesis (Doctoral)--Københavns universitet, 2005. / Includes bibliographical references.

The causes of childhood cancers are not well understood. That infections are believed to play an important role in childhood cancer development is of particular interest in sub-Saharan Africa, where infectious diseases are common. The objectives of this thesis were to identify childhood cancers associated with HIV, malaria, EBV and HHV-8, and to investigate child and maternal factors associated with Burkitt lymphoma and Kaposi sarcoma. In Blantyre, Malawi, 305 children diagnosed with cancer and 212 of their mothers, were recruited. Risk factor data were collected using a brief questionnaire and blood samples tested for infections. Case-control analyses were conducted to compare 148 Burkitt lymphoma cases and 22 Kaposi sarcoma case with a control group comprising 104 children with cancers other than those known to be associated with HIV. The prevalence of HIV was 6% among children with Burkitt lymphoma and 2% in controls (OR=12.4, 95% CI 1.3 to 116.2). Tumour risk increased with increasing litres of antibodies against EBV and malaria. In comparison with those who had low titres against both EBV and malaria, the highest risk of Burkitt lymphoma was among those with high titres against both infections (OR=13.2, 95% CI 3.8 to 46.6). Reported use of mosquito nets was protective against Burkitt lymphoma. The prevalence of HIV was 81% among children with Kaposi sarcoma (OR=762.7, 95% CI 44 to 13376), and risk increased with increasing HHV-8 antibodies. Prevalence of infections was also examined among children with other cancer types and no associations were identified, although the number of cases was small. Few maternal factors were found to be associated with cancer in children. This research demonstrates that infections play a particularly important role in increasing the risk of Burkitt lymphoma and Kaposi sarcoma in children in sub- Saharan Africa. Prevention or early treatment of these infections may be vital in the control of childhood cancer.

Not available / text

Thesis (Ph. D.)--University of Washington, 2007. / Vita. Includes bibliographical references (leaves 61-73).

Thesis (M. S. in Psychology)--Vanderbilt University, May 2009. / Title from title screen. Includes bibliographical references.