Randomised feasibility study to compare the use of Therabite® with wooden spatulas to relieve and prevent trismus in patients with cancer of the head and neck.

Our aim was to compare the efficacy of the Therabite® jaw motion rehabilitation system (Atos Medical) with that of wooden spatulas to relieve and prevent trismus in patients who have had radiotherapy for stage three and four oral and oropharyngeal cancer. Secondary aims were to assess the feasibility and the impact of exercise on health-related quality of life (QoL), and the use of health services after treatment. We designed a randomised, open-label, controlled, three-centre feasibility study to compare the effectiveness and cost of the Therabite® and wooden spatulas. We studied compliance with exercises and health-related QoL, assessed cost using three health economics measures, and conducted semistructured interviews with patients. Patients were randomised into two groups: the Therabite® group (n=37) and the wooden spatula group (n=34). All patients had some sense of jaw tightening before the study started. Mean mouth opening after six months increased in both groups, but the difference between the groups was not significant (p=0.39). Completion rates for the three economic measures were good. There was no significant difference between the two groups in frequency of contact with care services or in QoL. Exercises during and after radiotherapy can ameliorate trismus in patients with stage three and four oral and oropharygeal cancers, but differences between groups in efficacy, compliance, QoL, or use of hospital or community health services, were not significant.

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature.

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.

Lay educators in asthma self management: reflections on their training and experiences.

OBJECTIVE: To capture the experiences and feelings of lay educators in an asthma self-management programme to aid understanding of optimal methods of recruitment, training and retention, and to enhance their value within the programme. METHODS: A multi site randomised controlled equivalence trial of asthma educators and primary care practice based nurses during which the educators were asked to keep a diary of their experience. A qualitative thematic analysis of these diaries was undertaken. RESULTS: Eight lay educators supplied diaries. From these diaries emerged personal reasons for involvement in the programme, constructive comments on the training programme, a need for preparation for the realities of clinical practice and significant ongoing support and training. CONCLUSION: Lay educators are a potential resource for giving self-management education to patients with long-term conditions such as asthma. However, there are some considerations that need to be taken into account regarding contracts, retention and continual support. PRACTICE IMPLICATIONS: Lay educators need a flexible but comprehensive training programme, contracts, on site mentoring and support. They seem most contented when welcomed by health professionals and treated as part of the team.

The information needs and preferred roles in treatment decision-making of parents caring for infants with atopic dermatitis: a qualitative study.

BACKGROUND: Information needs and preferences in treatment decision-making of parents caring for infants with atopic dermatitis (AD) are unknown, despite emphasis on quality information-giving and involvement of health-care users in treatment decisions. OBJECTIVE: To explore information needs and decisional role-preferences of parents caring for infants with AD. METHODS: Qualitative study. Purposive sample: 31 parents caring for infants with AD. Tape-recorded focussed conversation-style interviews. Interview topic-guide literature-derived. Control Preferences Scale (5 sort-card vignettes 'very active' to 'very passive' role) adapted for use with parents; used to facilitate discussion. Thematic analysis of verbatim transcripts. RESULTS: Nine core information needs identified: AD-causation, role of diet, medication-use, medication-side-effects, exacerbating factors, new/alternative medication, nonpharmacological treatments, AD-prevention, AD and other atopic conditions. Parents desired verbal and written information. Many felt their baby's condition was not taken seriously, leading to delayed diagnosis and treatment. They had to be more active than they wished to obtain information/treatment. Parents preferred sharing decisions with their doctor. CONCLUSIONS: Parents caring for infants with AD have clearly defined, unmet information needs, forcing them into more active roles in the treatment decision-making process than they desire. The study-findings may inform the development of written information specifically for these parents and improve partnership during consultations.

A descriptive study of meaning of illness in chronic renal disease.

AIM: To explore the subjective meaning of illness in a sample of renal patients. BACKGROUND: Patients' illness representations, such as the meaning they attach to illness, may affect their coping and adaptation. Improved understanding in this area may therefore benefit patient care. Meaning of illness has not previously been explored in renal disease. DESIGN AND METHODS: Cross-sectional survey (n=405) in a single regional renal unit in the North of England. Ethical approval was obtained and patients gave written consent. The instrument used was an eight-item schema, based on the work of Lipowski (1970, Psychiatry in Medicine 1, 91-102). Field notes regarding rationale for choice were recorded concurrently, then content analysed to enable identification of themes. The chi-square test (significance level P < 0.05) was used to analyse differences in selected meaning in older and younger patients; males and females; and patient groups (predialysis, haemodialysis and transplant). FINDINGS: 'Challenge' was selected by most patients (n=253, 62.5%), with similar results in all three patient groups. Slightly more older than younger patients selected 'challenge', although the difference was not statistically significant and older patients more commonly had a fatalistic interpretation of the option. More men selected 'challenge' than women. Those selecting 'challenge' and 'value' appeared to have a more positive outlook than other patients. CONCLUSIONS: Patients had identifiable meanings for their illness, and these may be associated with their response to renal disease. The schema appeared to be comprehensive, but is in need of further refinement. Consideration of the possible influence of social desirability is necessary.