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1.
World J Pediatr Surg ; 6(3): e000596, 2023.
Article in English | MEDLINE | ID: mdl-37441089

ABSTRACT

Objectives: Patient experience is directly related to health outcomes, and parental experience can be used as a proxy for this in neonatal care. This project was designed to assess parental experience of neonatal surgical care to inform future service developments and improve the care we provide. Methods: This was a qualitative study using rapid qualitative analysis. The study was carried out in a large neonatal surgical intensive care unit in the UK. Parents of infants treated by the neonatal surgical team between March 2020 and February 2021, during the COVID-19 pandemic were included. Purposive sampling was used to ensure that a representative range of parents were interviewed. A semistructured interview was created and tested in a previous phase of work. This questionnaire was used to ask parents open questions about different aspects of their infants' healthcare journey from the antenatal phase through to discharge from the neonatal unit (NUU). Results: Rapid qualitative analysis was employed, and parental experiences were grouped into five main categories: before admission to the NNU, initial admission to NNU, information and support, COVID-19 and discharge. Within these five groups, we highlighted positive experiences to be fed back to the healthcare teams to reinforce good practice, areas that warranted improvement and suggestions for service development. Conclusions: The wealth of data generated from the interviews has been summarized and shared with healthcare teams who are putting the service improvement suggestions into practice. The tool is available for services that wish to measure parental experience.

2.
BMJ Paediatr Open ; 6(1)2022 07.
Article in English | MEDLINE | ID: mdl-36053593

ABSTRACT

INTRODUCTION: Improved parental experience is related to improved mental and physical health outcomes for the infant. The COVID-19 pandemic abruptly impacted on healthcare delivery and services need information to shape how to manage the disruption and recovery. METHODS: Our aim was to develop a systematic process to capture parents' experience of their neonatal surgical healthcare journey during the pandemic. We identified relevant stakeholders and using semistructured interviews, we explored three key themes.(1) How to recruit and collect data from representative parents?(2) What questions should be asked?(3) How to disseminate results for service development? RESULTS: Responses indicated the need to involve 'difficult to access groups' (eg, first language not English, high social deprivation, low health literacy), defined the range of family and patient characteristics variables to be considered for representative responses (eg, antenatal diagnosis, disease complexity, number of siblings, single parent, parental health). The proposed questions were grouped into five main topics: information preadmission; in-patient experience; support during admission; the effect of COVID-19; discharge and posthospital experience. Recommendations for dissemination included local, regional and national fora as well as the need to feedback to participants about the changes made.Based on the analysis, we developed a semistructured interview which underwent cognitive testing, prepilot and pilot phase testing. DISCUSSION: This protocol is grounded in the views of relevant stakeholders to ensure it captures relevant information in a pragmatic but methodologically sound way. It will next be used to assess parental experience in a large neonatal surgical unit. We hope that the protocol could be adapted and used by other groups.


Subject(s)
COVID-19 , Delivery of Health Care , Female , Humans , Infant , Infant, Newborn , Pandemics , Parents/psychology , Pregnancy , Qualitative Research
3.
Res Dev Disabil ; 35(6): 1216-27, 2014 Jun.
Article in English | MEDLINE | ID: mdl-24685937

ABSTRACT

UNLABELLED: Support staff working with individuals with intellectual disability (ID) and challenging behaviour experience high levels of work-related stress. Preliminary theoretical and experimental research has highlighted the potential suitability of acceptance and mindfulness approaches for addressing support staff stress. This study examines the effectiveness of an acceptance and mindfulness-based stress management workshop on the levels of psychological distress and well-being of support staff working with individuals with ID and challenging behaviour. Support staff (n=120) were randomly assigned to a workshop intervention condition (n=66) or to a waiting list control condition (n=54). Measurements were completed at three time points (pre-, post and 6 week follow-up) for: psychological distress, well-being, perceived work stressors, thought suppression, and emotional avoidance/psychological inflexibility. MAIN FINDINGS: The intervention led to significantly greater reductions in distress in the intervention group than in the control group. This was largely maintained at 6 week follow-up. This effect was more pronounced amongst a subsample that had shown higher levels of psychological distress at baseline. Thought suppression was found to reduce significantly in the intervention group between post intervention and follow-up, although no significant change was found in well-being or experiential avoidance/psychological inflexibility. Overall, results demonstrated support for the effectiveness of an acceptance and mindfulness-based intervention in reducing distress.


Subject(s)
Acceptance and Commitment Therapy/methods , Caregivers/psychology , Intellectual Disability/nursing , Mindfulness/methods , Stress, Psychological/therapy , Adult , Aged , Female , Humans , Male , Middle Aged , Stress, Psychological/psychology , Treatment Outcome , Young Adult
4.
Curr Aging Sci ; 6(3): 273-9, 2013 Dec.
Article in English | MEDLINE | ID: mdl-23773030

ABSTRACT

BACKGROUND: Cognitive decline is common in Parkinson's disease (PD) but may not be adequately identified by the mini-mental state examination (MMSE), which is better suited to Alzheimer's disease. The mini-mental Parkinson (MMP) examination is a cognitive screening tool designed in French specifically for PD. We aimed to establish the validity and reliability of the English language version of the MMP compared with the MMSE. METHODS: People with various stages of PD underwent testing with the MMP and MMSE, which was then compared with a reference standard battery of neuropsychological tests to identify those with significant cognitive impairment. RESULTS: Forty-nine patients were recruited. Both the MMP and MMSE were significantly correlated with scores on all the neuropsychological tests in the validation battery. The median MMP score was proportionally lower (80% of maximum) than the MMSE (90% of maximum) in PD patients with cognitive impairment and those with prior neuropsychiatric complications but there was no difference between the MMP and MMSE in areas under the curves (0.84) for detecting cognitive impairment. Test-retest reliability of the MMP was good (intra-class correlation coefficient 0.793). An MMP of 28 or lower out of 32 detected cognitive impairment with 87% sensitivity and 76% specificity. DISCUSSION: The English language version of the MMP has now been validated. It detects more cognitive deficits in PD patients than the MMSE and identifies significant cognitive impairment in those with PD at least as well as the MMSE.


Subject(s)
Cognition Disorders/diagnosis , Cognition , Parkinson Disease/diagnosis , Psychiatric Status Rating Scales , Aged , Aged, 80 and over , Cognition Disorders/psychology , Female , Humans , Male , Middle Aged , Neuropsychological Tests , Parkinson Disease/complications , Parkinson Disease/psychology , Predictive Value of Tests , Reproducibility of Results , Severity of Illness Index , Surveys and Questionnaires
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