Lack of adequate sun protection for children with oculocutaneous albinism in South Africa.

BACKGROUND: Childhood is a high risk time for ultraviolet induced skin damage as this age group has more time and opportunity to be outdoors in the sun. Children in Africa with the inherited condition oculocutaneous albinism (OCA) are especially vulnerable due to their lack of protective melanin. They are highly susceptible to developing skin lesions that have both cosmetic and health complications, with a high risk of developing skin cancers. The study aimed to explore the adequacy of sun protection strategies of children with albinism in order to inform future provision. METHODS: Community based participatory research methods were employed to investigate sun protection strategies in 90 pupils with OCA (40 female and 50 male) boarding at a special school educating pupils with visual impairment in a rural area of northern South Africa. Hats worn and sunscreen preparations used were examined during semi-structured face to face interviews conducted in small peer groups. The resident nurse interpreted if necessary and provided additional information on monitoring and treatment of skin lesions. RESULTS: Participants with albinism in this study were exposed to high levels of ultraviolet radiation throughout the year and showed skin damage despite wearing protective head gear. All except one pupil possessed at least one hat, with a mean brim width of 5.4 cm. Gender differences in sun avoidance behaviour were documented, with females seeking shade during recreational periods and males playing soccer outside. Although 38% of pupils were using a sunscreen with a sun protection factor (SPF) rating, only 12% had government sponsored tubes of SPF15 cream. Government sponsored sunscreen preparations were only provided if actively sought, involving time consuming trips to regional hospitals, with inadequate availability and insufficient supply. CONCLUSION: Children with albinism living away from home in rural areas appear to have inadequate sun protection strategies. Changes in health policy could address these deficiencies. We recommend providing more detailed health care information, giving advice on appropriate styles of hat to wear and how to assess commercial SPF products. Health promotional material should also be evaluated to determine its effectiveness among user groups.

Experiences of a feasibility study of children with albinism in Zimbabwe: a discussion paper.

BACKGROUND: Feasibility studies are often a helpful prelude to constructing fundable research proposals. Where the intended research is in a foreign country, focuses on a vulnerable population, and is aggravated by political and pragmatic challenges, feasibility studies become essential. Albinism, a genetic condition of reduced melanin synthesis, is a major public health issue in southern Africa. Whilst much is known about the health needs of children with albinism, little is understood about how to address these effectively in low income countries. Further, the child care and protection needs of children with albinism are largely unexplored. Zimbabwe's current political and economic climate presents additional challenges to research on the topic. METHOD: The technical, economic, legal, collaborative, operational, schedule and political feasibilities (acronym TELCOSP) to undertaking a study on children with albinism in Zimbabwe were explored over a six week period of fieldwork in the country. RESULTS: Using the TELSCOSP framework allowed a deconstruction of each challenge to provide innovative solutions. The economic and legal feasibility aspects presented some difficulties that will require flexibility and perseverance to overcome. CONCLUSION: With the assistance of the local communities and people with albinism in Zimbabwe, the obstacles appear surmountable. The feasibility study provided a productive framework for addressing potential challenges in studying the needs of Zimbabwe's children living with albinism.

Peacock or Plum? Reflections on academic research career pathways.

UNLABELLED: PURPOSE OF THE PAPER: This paper critically deconstructs academic career pathways in research and explores possible future directions. BACKGROUND AND CONTEXT: Development in NHS policy and practice has brought about something of a sea change in academic career pathways in nursing and midwifery. Whilst once there was a fairly prescribed route into nurse education and then research, contemporary factors no longer foster such traditional routes. METHODS: In examining what a career pathway into academic nursing research may look like it may be useful first to delineate what are the basic assumptions that constitute 'achievement' within such a career. Once pinpointed it is possible to map out different pathways that illustrate the diversity with which this has occurred. This provides a useful mirror for examining what may or may not be useful for the future. This paper explores three areas of the nurse academic career pathway: introspectively to understand where we are at the moment, retrospectively by examining composite research careers in order to gain insight for the final prospective section, where we make recommendations for the future. CONCLUSIONS: Nurses and midwives working in higher education require transparent and sustainable research strategies that facilitate clear research pathways in academia. The tensions between research and teaching are inevitable, but are manageable if workforce development uses individuals to their strengths and values diversity of contribution.

Salutogenesis as a framework for child protection: literature review.

AIM: The aim of this paper is to demonstrate the usefulness of salutogenesis in work relating to child protection. METHODS: A systematic review to explore the links between parenting, social factors and failure to thrive was carried out using 17 CD ROM and online databases using keywords in appropriate medical subject headings (MeSH terms) and Boolean operators refined for the studies. The salutogenic framework was then used as a way of clarifying what benefit particular research findings may have in identifying and using factors which can be associated with protection, safety and well being of children. Cross-referencing the evidence from the systematic review against Antonovsky's generalized resistance resources created a salutogenic matrix. FINDINGS: Four factors in the systematic review were found crucially important: parent factors; parenting factors; child factors; and social factors. However, it is probable that these are useful within all child protection research and the evidence gathered in particular cases (here failure to thrive) could be plotted against each factor. Application of a salutogenic framework to the results was further illuminating and has utility for both systematic review methodology and other child protection explorations. The matrix created a warp and weft effect that identified gaps in current evidence and practice and was able to disentangle some of the complexities inherent within failure to thrive situations. By beginning to shed understanding on such processes, the concept of salutogenesis added further depth and rigour to the analysis. CONCLUSIONS: The concept of salutogenesis is widely used in some areas of nursing practice and research, and can also be regarded as a theoretical tool that has potential in child care and protection research, development and practice. The paper also illustrates the importance of a sound theoretical framework in ensuring depth and rigour in analyses of literature review findings.