Parents' experiences of living with a child with hydrocephalus: a cross‐sectional interview‐based study

Background

Shunts, the main treatment for hydrocephalus, are problematic because they frequently malfunction. Detecting shunt malfunction is challenging because symptoms are similar to those of common childhood illnesses, particularly viral infections. Parents are responsible for identifying shunt malfunction and responding accordingly. Understanding parents'' experiences has the potential to improve parent–professional collaboration and the management of the child''s condition.

Aim

To explore parents'' experiences of living with a child with hydrocephalus and their decisions when they suspect shunt malfunction.

Design and methods

A cross‐sectional interview‐based survey using qualitative methods was undertaken. Twenty‐five parents participated in the interviews. Framework approach underpinned data analysis.

Findings

Three concepts, ‘uncertainty’, ‘developing expertise’, and ‘a normal life’, were identified. These concepts were dynamic in nature as parents learned through experience, adapted to changes in their child''s health status and made decisions about their needs. Uncertainty because of the unpredictability and life‐threatening nature of shunt malfunction dominated parents'' accounts. Through experience, parents learned to differentiate between symptoms that suggested a shunt problem and those of other childhood illnesses, but perceived their expertise was not always valued by health professionals or used to inform clinical decisions. Decisions about where or when to seek advice related to prior experiences of health‐care services and minimizing disruption for the whole family.

Conclusion

Parents can recognize illness symptoms suggestive of shunt malfunction and want to collaborate with health professionals about the management of their child''s condition. Collaboration with parents requires health professionals to listen to parents'' concerns and value their experiences.     

The views and attitudes of general practitioners and smokers toward provision of smoking cessation advice: a qualitative study.

Objectives: To identify common themes between general practitioners (GP's) and patients on smoking cessation in primary care in order to inform the development of acceptable guidelines, thus maximising the chance that recommendations will be received positively and implemented. Design: Qualitative study using focus groups and individual interviews with GPs and patients. Setting: North East Scotland. Subjects: 10 general practitioners and 20 patients (10 smokers and 10 patients who described themselves as ex-smokers). Results: Both general practitioners and patients agreed that the GP has a key role in providing a range of advice and support for smoking cessation. Both parties expressed views at variance with current guidelines but agreed that, for support and advice to be successful, it needs to comply with four of the five main themes identified; that it should be practical, pertinent to the consultation, personalised to the smoker's clinical need, and should emphasise the positive health gains from quitting. Conclusion: The considerable concordance between the perceptions of GPs and their patients about smoking cessation care suggests potential for a more positive partnership in working towards reduction of smoking in the UK.     

G alpha(q)-coupled receptors in human atrium function through protein kinase C epsilon and delta

Cardiac G alpha(q)-coupled receptors (such as endothelin, angiotensin, and alpha1-adrenergic receptors) mediate cardiac inotropy and chronotropy, as well as the development of hypertrophy. These receptors signal through protein kinase C (PKC), a family of 12 isozymes including PKC alpha, beta I, beta II, gamma, delta, epsilon, theta, eta, lambda, iota, zeta, and mu. Of these PKC isozymes, alpha, beta II, gamma, epsilon, delta, and zeta have been implicated in signaling through cardiac G alpha(q)-coupled receptors in various animal models. However, the profile of which isozymes are activated by a given G alpha(q)-coupled receptor varies among animal species. Thus, these results can not be extrapolated to human heart. In this study, we examine PKC isozymes activated by three different G alpha(q)-coupled receptors in human atrial tissue. Live atrial appendages obtained from the operating room were sliced and treated with agonists of G alpha(q)-coupled receptors, and cellular redistribution of PKC isozymes was examined by immunoblotting. We find that stimulation of G alpha(q)-coupled receptors in human atrium activates PKC epsilon and delta only, under both acute (5 min) and longer (35 min) stimulations. Further, PKC epsilon and delta exhibit distinct subcellular redistribution patterns; while both translocate to the plasma membrane upon G alpha(q) stimulation, PKC delta also redistributes to mitochondria. We conclude that PKC epsilon and delta are the main PKC isozymes involved in G alpha(q)-mediated signaling in human atria.     

Do practices comply with key recommendations of the British Asthma Guideline? If not, why not?

AIMS: Amongst general practices in the NHS Borders region of Scotland, we aimed to determine compliance with the three key recommendations of the British Guideline for the Management of Asthma and to understand the nature of barriers and facilitators to their implementation. METHODS: Using piloted audit tools, a researcher extracted data from computerised and/or paper patient medical records to assess compliance with recommendations for objective diagnosis and stepwise management. Provision of asthma action plans was assessed by patient survey. Clinicians' attitude to guidelines was assessed by postal survey. RESULTS: Fifteen of the 24 practices in the NHS Borders region participated. Audited compliance with the three key recommendations varied markedly amongst and within practices. Whilst 367/547 (67%) of patients were treated appropriately with add-on therapy, only 58/254 (23%) of patients reported having been given an asthma action plan. Barriers to implementation identified by the clinicians' survey (response rate 64/84 - 76%) were theoretical (doubt about the evidence base and relevance to primary care, lack of knowledge and skills, misconceptions) as well as practical (lack of time and resources) and were exacerbated by poor teamwork. Facilitators were good teamwork and appropriate organisation of work within the practice. CONCLUSIONS: Implementation of key recommendations was variable, particularly in the more complex intervention of issuing asthma action plans. An intervention to enhance compliance with these guideline recommendations will need to address both theoretical and practical barriers within the context of improved teamwork.     

Systemic sclerosis and interstitial lung disease: a pilot study using pulse intravenous methylprednisolone and cyclophosphamide to assess the effect on high resolution computed tomography scan and lung function

OBJECTIVE: To document the effectiveness, including the longterm effect, of a course of intravenous (IV) pulses of methylprednisolone (MP) and cyclophosphamide (CYC) in patients with scleroderma (SSc) who had evidence of lung inflammation on high resolution computer tomographic (HRCT) scan of the chest. METHODS: Fourteen consecutive patients with SSc and lung involvement were treated with 6 pulses of IV MP (10 mg/kg) and IV CYC (15 mg/kg) given at 3-4 weekly intervals. HRCT scans and lung function tests were performed at baseline and after the 6th pulse. Further lung function tests were repeated at 12 months and annually thereafter. RESULTS: Modified Rodnan skin scores improved significantly by 35% from a median baseline score of 17 (IQR 14-26.5) to a posttreatment score of 13 (IQR 10.5-18.5; p = 0.0058). HRCT scan scores improved significantly (p = 0.04). Twelve of 13 patients experienced either improvement or stabilization of the HRCT score. Median DLCO and lung volumes remained stable during the first 12 months. After a median followup of 26 months (IQR 19-43), 67% of patients experienced deterioration in DLCO. Median deterioration was 23% (IQR 44-0.6), with the median rate of deterioration of the predicted value of the DLCO/month being 0.87% (IQR 1.24-0.02). The treatment was safe and well tolerated. CONCLUSION: This IV regimen stabilized lung disease in patients with SSc. When treatment was stopped, or reduced in intensity, a deterioration in lung function occurred in the majority of patients. Rate of deterioration of DLCO may be a useful marker for determining the intensity of treatment. These findings have implications for treating lung disease and designing clinical trials in patients with SSc.     

Health related outcomes among people with type 2 diabetes by country of birth: Result from the 45 and Up Study

Background

Ethnic variation in the occurrence of type 2 diabetes, complications, mortality, and health behaviours has been reported. The current research examined patterns of health-related outcomes by country of birth in people with diabetes aged 45 years and over in New South Wales, Australia.

Sodium-channel defects in benign familial neonatal-infantile seizures

Ion-channel gene defects are associated with a range of paroxysmal disorders, including several monogenic epilepsy syndromes. Two autosomal dominant disorders present in the first year of life: benign familial neonatal seizures, which is associated with potassium-channel gene defects; and benign familial infantile seizures, for which no genes have been identified. Here, we describe a clinically intermediate variant, benign familial neonatal-infantile seizures, with mutations in the sodium-channel subunit gene SCN2A. This clinico-molecular correlation defines a new benign familial epilepsy syndrome beginning in early infancy, an age at which seizure disorders frequently have a sombre prognosis.