The study suggests affordable, nurse-led, volunteer-supported children's palliative care services are both achievable and effective in sub-Saharan African. The study suggests that palliative care units should provide a specialized service focused on children. Such a service would clearly identify children in need of children's palliative care and should provide medication for symptom control; food and basic needs support; play and learning facilities; child protection; and systems for patient education, communication and follow up. Staff lack confidence and/or competence and this is a significant barrier to children's palliative care that should be addressed in Africa.
There is a disparity between educational needs as derived from self-rated competencies and from educational diary keeping; suggesting that children's hospice doctors may not be fully aware of their own educational, support and training needs. Self-rated competencies emphasise the value of education in craft or clinical skills; whereas personal diary keeping emphasises the value of education in intrapersonal and interpersonal skills such as communication, team-working and personal coping skills. The current curricula and educational resources need to acknowledge that interpersonal and intrapersonal competencies are as important as clinical competencies. While the study looks particularly at the educational needs of children's hospice doctors, readers may feel that the findings are of relevance to all specialities and disciplines.
There is educational need for all CPC subject areas across the board, but communication with children is the most pressing. There are disparities between recognized learning needs (technical skills predominating) and unrecognized learning needs (interpersonal and intrapersonals skills predominating). While the broad subject areas for CPC may be similar in resource-rich and resource-poor settings, educational resources developed for the specific context of African and other resource poor settings are required.
This is a descriptive uncontrolled study so any apparent differences between respondent sub-groups require further validation. The study provides insight into who is providing CPC across the world, and highlights the multi-disciplinary nature of CPC. It raises questions about how we can best support colleagues in resource-limited settings. It suggests further study is required into the nature of regional demand for CPC, the best places to resource and provide CPC, the nature of professionals' training needs, the most effective ways to train and deliver CPC care, the best ways for professionals to support each other, and effective ways to share resources and knowledge across the world.
We surveyed a randomized group of 1050 adult patients stratified for age and sex, from a general practice in Oxfordshire, to find out their attitudes to electronic health records (EHRs). Eighty-six per cent thought that patients should have the right to see their records. While 72% knew that they had the right to see their records, only 4% had done so. Private EHR viewing booths with a computer and fingerprint identification system were installed in the primary care centre. Patients were randomly selected from those who responded to the questionnaire and wished to view their EHR. Of the 100 patients who saw their online EHR, 99 found the session useful and 84 found their records easy to understand. Three focus groups were held with 14 patients who said that they did not want to access their EHRs. The reasons patients gave during the focus groups included that they trusted their general practitioner and thought it would imply a lack of confidence. After the focus groups, 11 patients changed their minds and accessed their records. We believe that patient-accessed EHRs will offer substantial benefits to patients, health professionals and the National Health Service as a whole.
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