Development and evaluation of a staff training program on palliative care for persons with intellectual and developmental disabilities

Persons with intellectual and developmental disabilities (I/DD) face barriers and disparities at end of life. Among these barriers are limited educational opportunities and a paucity of targeted training materials on palliative care for staff who provide their day-to-day care. This paper reports on a three-phase project undertaken to develop, implement, and evaluate a palliative care curriculum and educational program that is responsive to the unique learning needs of staff providing services and supports for individuals with I/DD living in long-term care settings. Participants\u27 ratings of their levels of preparation and confidence to provide palliative care improved from pretraining to posttraining. Posttraining use of materials and practice changes in palliative care occurred. When training is developed in partnership with the staff who will use these training resources, it has the potential to sustain its use and to alter the care practices to address the palliative care needs of persons with I/DD

The cultural constructs of cancer-related fatigue among American Indian cancer survivors.

PurposeCancer-related fatigue (CRF) is a common symptom experienced by cancer survivors. Persistent fatigue can last years after cancer treatment. CRF's origin is unknown, and there are no validated treatments. Cultural constructs (definitions, meaning, and explanations) may vary the presentation and treatment choices related to fatigue. Identifying and categorizing CRF terms and experiences among racial, ethnic, and non-English speaking groups may provide a fuller understanding of CRF to guide tailoring of interventions. We report on the cultural constructs of CRF as reported by American Indian cancer survivors.MethodsA study of Southwest American Indians collected qualitative data on cancer survivors' experiences of fatigue. Focus groups (n = 132) at urban clinics and rural reservation sites in the Southwest collected qualitative data on cancer survivor experiences with fatigue. The sessions were audiotaped and transcribed verbatim. During analysis, common themes were coded and formed into categories following Grounded Theory analytical procedures. Relationships between categories were examined.ResultsCRF was described by survivors as an entity that comes into the brain, "drains life" from the body, and creates long-lasting suffering, pain, and stigma. We review the cultural constructs of fatigue and CRF's relationship to "being out of balance."ConclusionsThere is a need for culturally appropriate education concerning fatigue, techniques for reducing fatigue, and support for American Indian cancer survivors and other vulnerable populations

Haematinic deficiency and macrocytosis in middle-aged and older adults.

OBJECTIVE: To assess the prevalence and determinants of haematinic deficiency (lack of B12 folate or iron) and macrocytosis in blood from a national population-based study of middle-aged and older adults. METHODS: A cross-sectional study involving 1,207 adults aged ≥45 years, recruited from a sub-study of the Irish National Survey of Lifestyle Attitudes and Nutrition (SLÁN 2007). Participants completed a health and lifestyle questionnaire and a standard food frequency questionnaire. Non-fasting blood samples were obtained for measurement of full blood count and expert morphological assessment, serum ferritin, soluble transferrin receptor assay (sTfR), B12, folate and coeliac antibodies. Blood samples were also assayed for thyroid function (T4, TSH), liver function, aminotransferase (AST) and gamma-glutamyl transferase (GGT). RESULTS: The overall prevalence (95% C.I.) of anaemia (Hb <13.5 g/dl men and 11.3 g/dl women) was 4.6% (2.9%-6.4%) in men and 1.0% (0.2%-1.9%) in women. Iron deficiency (ferritin <17 ng/ml men and <11 ng/ml in women) was detected in 6.3% of participants (3.7% in males and 8.7% in females, p<0.001). Based on both low ferritin and raised sTfR (>21 nmol/ml) only 2.3% were iron-deficient. 3.0% and 2.7% were found to have low levels of serum folate (<2.3 ng/ml) and serum B12 (<120 ng/l) respectively. Clinically significant macrocytosis (MCV>99fl) was detected in 8.4% of subjects. Strong, significant and independent associations with macrocytosis were observed for lower social status, current smoking status, moderate to heavy alcohol intake, elevated GGT levels, deficiency of folate and vitamin B12, hypothyroidism and coeliac disease. The population attributable fraction (PAF) for macrocytosis associated with elevated GGT (25.0%) and smoking (24.6%) was higher than for excess alcohol intake (6.3%), folate deficiency (10.5%) or vitamin B12 (3.4%). CONCLUSIONS: Haematinic deficiency and macrocytosis are common in middle-aged/older adults in Ireland. Macrocytosis is more likely to be attributable to an elevated GGT and smoking than vitamin B12 or folate deficiency

Distribution of ferritin in subjects with normal sTfR (=<21nmol/L) and those with elevated sTfR (>21nmol/L).

<p>Distribution of ferritin in subjects with normal sTfR (=<21nmol/L) and those with elevated sTfR (>21nmol/L).</p