The lived experience of adults with cystic fibrosis: what they would tell their younger selves about the gut.

BACKGROUND: Little is known about adults' experience of living with cystic fibrosis (CF) specifically in relation to the gut. However, their unique perspectives may be meaningful to children with CF and inform the understanding and practice of dietitians. The present study aimed to explore adults' lived experience of the CF gut and how they learnt to manage the gut as they were growing up. METHODS: Semi-structured interviews were conducted with adult inpatients (n = 10). Interviews were audio-recorded, transcribed verbatim and accounts analysed using interpretative phenomenological analysis. RESULTS: Three super-ordinate themes were identified: taking Creon, the learning process and this much I (now) know. Participants accounts of how CF affects the gut predominantly focused on taking Creon (pancreatin, Mylan). Various strategies were employed for coping with peer responses to taking Creon at school. Several participants reached adulthood before they understood and/or accepted that taking Creon consistently needed to be normal for them. Knowledge and understanding developed over time, with 'CF experience' and was shaped by family, CF care teams and other children with CF. All had unmet information needs when growing up. Having key explanations earlier, to make connections between eating, taking Creon, gaining weight and growth, did or would have helped most participants. Participants urged children to be assertive, ask questions and not only be involved in managing their diet and gut, but also begin to take control of this aspect of their CF. CONCLUSIONS: Supporting development of knowledge, skills and confidence to manage diet and the gut needs to be integral to care throughout childhood.

Is the hospital setting the place for teaching breast self-examination?

The purpose of this study was to investigate the effects of an instructional program for nurses educating them to teach breast self-examination (BSE) to hospitalized patients. Nurses' knowledge, attitudes, self-practice, and practice of teaching breast self-examination to patients were measured in a group who attended such a program and compared with those of a control group who did not attend. The researchers found that the instructional program increased nurses' teaching of BSE to their patients, but did not affect their own self-practice. Nurses' attitudes to teaching BSE were less favorable than for self-practice. Issues related to environments for teaching BSE are discussed.

Use of a support group for dermatologic patients.

Hospital nurses led weekly group sessions to provide dermatologic inpatients a supportive climate in which to share common concerns about skin disease and a forum for dissemination of dermatologic information. Session leaders kept a journal, noting themes and group dynamic patterns for each meeting. Participants also responded to a session evaluation questionnaire. Data from the journal and questionnaires were collected for one year to describe the issues and concerns raised in a support group for dermatologic patients and to assess the effectiveness of this approach in overall patient management. Three themes were consistently discussed: problems with stress, self-esteem, and social interaction; concerns with medical treatment; and coping with loss. Participants indicated that support and encouragement had been given and received. Need for a dermatologic patient support group was demonstrated. Location of such a group in an outpatient day-care setting was recommended.

Measurement of sialyl transferase activity and serum glycoproteins in malignant and beningn (hyperparathyroid) hypercalcemia.

Serum sialyl tranferase activity (STA) and protein bound carbohydrate were measured in hypercalcemic patients with surgically documented hyperparathyroidism (n = 15) or with cancer without skeletal metastases (n = 10). Precipitable protein-bound sialic acid and hexosamine, but not neutral hexoses or fucose were significantly (P less than 0.025) increased 40% and 21% respectively, in the perchlorate treated sera of cancer patients. Measurements of some specific serum glycoproteins by radial immunodiffusion assay were also different (P less than 0.05). Mean seromucoid protein was almost twice as great in the group with cancer (P less than 0.005), but four of these values overlapped those from the patients with hyperparathyroidism. The mean STA was 21.1 (range, 9.0-46.8) activity units in the patients with the cancer and 9.2 (range 1.0-17.8) in the patients with hyperparathyroidism (P less than 0.005). Six of the patients with cancer had values above the upper limit of the group with hyperparathyroidism. A discriminant function generated from these data correctly classified all the patients with hyperparathyroidism and 70% of those with cancer. Measurements of seromucoid and STA deserve further consideration as a way to discriminate some cases of hypercalcemia.