"Why them, why me, why us?" The experiences of parents of children with lysosomal acid lipase deficiency: an interpretative phenomenological analysis study.

BACKGROUND: Lysosomal acid lipase deficiency (LALD) is an ultra-rare, inherited metabolic disease within the category of lysosomal storage disorders, affecting an infant's ability to metabolise cholesterol. Developments in treatment, including Enzyme Replacement Therapy, have proven successful, with some children living for a number of years with treatment, although the future still remains unknown. The aim of this study was to explore the lived experiences of parents of children with LALD. MAIN TEXT: Participants were recruited from across the United Kingdom between 2020 and 2021. Eight parents (five mothers and three fathers) whose child had a confirmed diagnosis of LALD were interviewed. Data collected from the semi-structured interviews were audio-record, transcribed and analysed using Interpretative Phenomenological Analysis (IPA). Three superordinate and nine subordinate themes emerged from the data: (1) Uncertainty-a double-edged sword (plunged into an uncertain world, living life with worry and walking the tightrope of stability), (2) Powerless against a shared battle with LALD (a helpless parent, a joint battle, protection against distress and a vulnerable parent needing help) and 3) Accepting a life with LALD (coming to terms with a diagnosis of LALD and a hidden condition). CONCLUSIONS: The findings of this study highlight that the diagnosis of LALD proves to be a very challenging and emotionally distressing time in parents' lives, with increased uncertainty about what the future will hold for their child. This study signified the importance of healthcare pathways and service provisions to support parents and their children throughout diagnosis and beyond.

Data linkage between existing healthcare databases to support hospital epidemiology.

Enhancing the use of existing datasets within acute hospitals will greatly facilitate hospital epidemiology, surveillance, the monitoring of a variety of processes, outcomes and risk factors, and the provision of alert systems. Multiple overlapping data systems exist within National Health Service (NHS) hospitals in the UK, and many duplicate data recordings take place because of the lack of linkage and interfaces. This results in hospital-collected data not being used efficiently. The objective was to create an inventory of all existing systems, including administrative, management, human resources, microbiology, patient care and other platforms, to describe the data architecture that could contribute valuable information for a hospital epidemiology unit. These datasets were investigated as to how they could be used to generate surveillance data, key performance indicators and risk information that could be shared at board, clinical programme group, specialty and ward level. An example of an output of this integrated data platform and its application in influenza resilience planning and responsiveness is described. The development of metrics for staff absence and staffing levels may also be used as key indicators for risk-monitoring for infection prevention. This work demonstrates the value of such a data inventory and linkage and the importance of more sophisticated uses of existing NHS data, and innovative collaborative approaches to support clinical care, quality improvement, surveillance, emergency planning and research.

Maintaining nutrition in aged care residents with a train-the-trainer intervention and Nutrition Coordinator.

OBJECTIVE: To investigate the impact of a train-the-trainer program on the nutritional status of older people in residential care. DESIGN: Prospective, randomized controlled study. SETTING: Eight nursing homes in Southeast Queensland, Australia. PARTICIPANTS: A total of 352 residents participated - 245 were female (69.6%). The mean age was 84.2 years and the majority (79.4%) were classified as high dependency. INTERVENTION: Residents from four nursing homes were randomly selected for a nutrition education program coordinated by Nutrition Coordinators. Residents from the other four nursing homes (control) received usual care. MEASUREMENTS: The Subjective Global Assessment was used to determine prevalence of malnutrition at baseline and six months post intervention. The Resident Classification Scale measured functional dependency. Prescribed diet, fluids, oral hygiene status and allied health referrals were obtained by chart audit. RESULTS: Approximately half the residents were well nourished with 49.4% moderately or severely malnourished. Residents in the intervention group were more likely to maintain or improve their nutritional status compared with the control group who were more likely to experience a deterioration (P=0.027). The odds of the control group being malnourished post test was 1.6 times more likely compared with the intervention group but this did not reach statistical significance (P=0.1). CONCLUSION: The results of the study encourage the implementation of a Nutrition Coordinator program to maintain nutritional status of aged care residents. Nevertheless, malnutrition rates continue to be unacceptably high. In a rapidly aging society, the aged care sector needs to confront malnutrition and provide better resources for staff to take measures against this problem.

Providing care to the elderly with depression: the views of aged care staff.

The purpose of this paper was to scope the views of care staff working in an aged care setting in an effort to understand the issues these staff face in the delivery of care to the elderly with depression. Seventeen care staff working in metropolitan, regional and rural areas of Queensland participated in one-on-one interviews in order to elicit their views on the identification of depression in the elderly and the care processes staff employed to manage depression. Interview notes were taken, reviewed, transcribed and analysed using content analysis. Discussion with participants revealed five themes regarding the management of depression in both community and residential aged care settings. These included: the extent to which depression is an issue for clients and residents; staff understanding of depression and the ability to recognize when a client or resident is depressed; discussing depression with general practitioner's and other healthcare professionals; processes and procedures for treating and addressing depression; and education and training on depression for staff. The findings revealed that care staff need greater education and training about depression and targeted strategies for its identification and management.

Effects of lameness on the behaviour of cows during the summer.

The welfare implications of lameness in dairy cattle are considerable, and in addition to causing great pain and discomfort to the animals it is detrimental to productivity. This study investigated the differences in behaviour of lame and normal cows during the summer. Their rank of entry and behaviour in the milking parlour were examined. Lame cows entered the parlour later than normal cows (P < 0.01), and were significantly more restless on their feet while being milked (P < 0.01). When cows were at pasture the lame cows lay down for longer (P < 0.01) and grazed for shorter periods than the normal cows (P < 0.01). All cows ruminated for longer periods when lying down than when standing, but the difference was significant only for the lame cows (P < 0.01). In addition, lame cows had significantly lower bite rates than normal cows (P < 0.01). The behavioural differences between lame and normal cows indicated that lameness had serious effects on the welfare and productivity of lame cows.