Breast cancer information and support needs for women with intellectual disabilities : a scoping study

Objective: To examine the compass and nature of relevant research and identify gaps in the current evidence in order to determine the priority of future research about breast cancer and intellectual disability (ID). Methods: A scoping study that comprised of a consultation exercise with a wide range of key stakeholders (n = 26) from one northern city (Sheffield) within the UK. Results: This study identified numerous gaps in the current evidence base. It highlighted a dearth of research that focuses specifically on the information and support needs of women with IDs (and their carers) across the breast cancer patient pathway. Within the interviews, whilst ‘reasonable adjustments’ were being made and there was evidence of good practice, they were neither strategic nor systematic. Participants suggested that future research should focus on devising protocols to advise on the legal, ethical and clinical imperatives so that clinical governance in this area is assured. Conclusions: There remains a dearth of research or practice guidelines at every stage of the breast cancer care pathway for women with ID. This may arguably lead to late diagnosis, suboptimal treatment and management and overall survival rates for this group. Further research is needed to understand the specific information and support needs of both women with ID (and their formal and informal carers) through the breast care pathway and to identify appropriate protocols, strategies and interventions in order to address these.</p

Caring for cancer patients with an intellectual disability: Attitudes and care perceptions of UK oncology nurses

NOTICE: this is the author’s version of a work that was accepted for publication in European Journal of Oncology Nursing. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in European Journal of Oncology Nursing, vol. 19, issue 5 (2015) 10.1016/j.ejon.2015.03.002Background: Caring for people with cancer or an intellectual disability (ID) is stressful: little is known about the combined impact of caring for cancer patients with an ID, though this is expected to be especially challenging. Method: Eighty-three nurses, working in oncology or a related field (i.e. palliative care) were recruited. Perceptions of caring for patients with and without an ID were measured, alongside potentially confounding information about participant demographic characteristics and perceived stress. Results: Participants felt less comfortable communicating with patients with an ID about their illness (F(1,82) = 59.52, p <0.001), more reliant on a caregiver for communication (F(1,82) = 26.29, p < 0.001), and less confident that the patient's needs would be identified (F(1,82) = 42.03, p < 0.001) and met (F(1,81) = 62.90, p < 0.001). Participants also believed that caring for this patient group would induce more stress, compared with patients without an ID (F(1,81) = 31.592, p < 0.001). Previous experience working with ID patient groups appears to mitigate some perceptions about providing care to this population. Conclusions: Caring for cancer patients with an ID may intensify this, already difficult, role. Through training and knowledge exchange, oncology nurse's confidence in communication, providing appropriate care, and positivity towards this patient group may be improved

A preliminary study of New Jersey\u27s charter schools

Charter schools have recently become an innovative method of educating a portion of today\u27s students. A charter school is a deregulated public school that is performance-based. It operates under a charter (contract) between people who want to start a school and an official body authorized to grant a charter. On January 11, 1996, New Jersey Governor Christine T. Whitman signed into law The Charter School Program Act of 1995. This act enabled the beginning of New Jersey charter schools. This study investigates the paths New Jersey\u27s eighteen approved charter schools are taking. Becoming familiar with the Charter School Program Act of 1995 was essential in this study. A summary of its contents are presented. A survey concerning staff, finding, facilities and enrollment was sent to each charter school. To complete the study there was an analysis of the charter schools\u27 mission statements to determine the focus of philosophies and curriculums. It was found that the majority of New Jersey\u27s charter schools are elementary schools. The majority of curriculums are focusing on establishing self-esteem and civic responsibility. Technology is incorporated into most areas of the curriculum. A majority of the charter schools are located in urban areas. Additional funding will most likely be the largest negative in their existences

Caring for people with learning disabilities in emergency care.

By focusing on patient journeys through emergency departments, MARGARET SOWNEY and colleagues address some of the key areas of concern in providing care for and discharging patients with learning disabilities, including communication difficulties, consent and assessing need