What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Health Expectations
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</a>
Patient Experience Research in Children and Young People's Mental Health Services in England: A Route to Genuine Service Transformation or Just Pretty Pictures and Tasteful Color Schemes?
The personalization of service provision and responding to patients' expressed needs are key components of government plans to improve children and young people's mental health services in England. This qualitative study explored the use of patient experience research in these services. Despite national level commitments to listening to and acting on the "patient's voice," both service users (young people) and parents of this group reported never having been invited to participate in patient experience research. Most professional respondents reported that such research was frequently tokenistic and conducted solely to meet an administrative requirement. Senior policy makers justified the limited investment in, and use made of patient experience research, by pointing to what they felt were more urgent priorities facing children and young people's mental health services. These included unprecedented levels of demand and critical underfunding of mental health services and related youth- and community-based services. The conceptualization of patient experience research within the National Health Service (NHS) as a service improvement issue was found to have led to its status being diminished to one concerned with relatively cosmetic matters, such as the color scheme or choice of pictures on the walls of clinics. Senior policy makers argued that it was important to rethink the role and value of patient experience research, and to recognize its unique contribution to addressing the existential questions facing services.
Crosier A; Knightsmith P
Journal of Patient Experience
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener">10.1177/2374373520938909</a>
The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions
Child; Child Preschool; Cross Infection/prevention & control; Cross-Sectional Studies; Drug Resistance Multiple; Female; Hospital Units; Humans; Hygiene; Infant; Infection Control/organization & administration; Inservice Training; Interviews as Topic; Male; Nursing Assessment; Paediatrics; Palliative care; Palliative Care; Parents; Patient Isolation; Patient Safety; Quality of Life; Social Participation; Stereotyping; Surveys and Questionnaires; Terminally Ill
BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.
Schmidt P; Hartenstein-Pinter A; Hasan C; Stening K; Zernikow B; Wager J
International Journal of Palliative Nursing
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.12968/ijpn.2021.27.1.10" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.1.10</a>
Parent engagement in perinatal mortality reviews: an online survey of clinicians from six high-income countries
Female; Humans; Male; Infant Newborn; Health Care Surveys; Parents; Cross-Sectional Studies; Developed Countries; Patient Participation; Stillbirth; Perinatal Mortality; stillbirth; Patient Safety; Bereavement care; parent engagement; perinatal mortality review; Medical Audit/methods
OBJECTIVE: Parent engagement in perinatal mortality review meetings following stillbirth may benefit parents and improve patient safety. We investigated perinatal mortality review meeting practices, including the extent of parent engagement, based on self-reports from healthcare professionals from maternity care facilities in six high-income countries. DESIGN: Cross-sectional online survey. SETTING: Australia, Canada, Ireland, New Zealand, UK and USA. POPULATION: A total of 1104 healthcare professionals, comprising mainly obstetricians, gynaecologists, midwives and nurses. METHODS: Data were drawn from responses to a survey covering stillbirth-related topics. Open- and closed-items that focused on 'Data quality on causes of stillbirth' were analysed. MAIN OUTCOME MEASURES: Healthcare professionals' self-reported practices around perinatal mortality review meetings following stillbirth. RESULTS: Most clinicians (81.0%) were aware of regular audit meetings to review stillbirth at their maternity facility, although this was true for only 35.5% of US respondents. For the 854 respondents whose facility held regular meetings, less than a third (31.1%) reported some form of parent engagement, and this was usually in the form of one-way post-meeting feedback. Across all six countries, only 17.1% of respondents described an explicit approach where parents provided input, received feedback and were represented at meetings. CONCLUSIONS: We found no established practice of involving parents in the perinatal mortality review process in six high-income countries. Parent engagement may hold the key to important lessons for stillbirth prevention and care. Further understanding of approaches, barriers and enablers is warranted. TWEETABLE ABSTRACT: Parent engagement in mortality review after stillbirth is rare, based on data from six countries. We need to understand the barriers.
Boyle FM; Horey D; Siassakos D; Burden C; Bakhbakhi D; Silver RM; Flenady V
Bjog
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/1471-0528.16529" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16529</a>
Balloon dilatation in esophageal strictures in epidermolysis bullosa and the role of anesthesia
adolescent; dysphagia; retrospective study; priority journal; school child; preschool child; clinical effectiveness; patient safety; human; article; child; female; male; adult; clinical article; young adult; colon interposition; gastrostomy; anesthesia; balloon dilatation; epidermolysis bullosa; esophagus stenosis/co [Complication]; esophagus stenosis/th [Therapy]; digestive endoscope; esophagus balloon; esophagus perforation; feeding difficulties; surgical intervention; endoscopic balloon dilatation
Esophageal involvement, which causes stricture, is a complication in epidermolysis bullosa. This causes dysphagia and malnutrition and leads to deterioration of skin lesions in these patients. The charts of 11 patients with epidermolysis bullosa and esophageal stricture who were included into dilatation program between 2003 and 2015 were retrospectively reviewed. Seven of the patients were female and four were male. The median age was 14 (2-32) years. The mean body weight of patients was 27.8 (9-51) kg. The location and number of strictured parts of the esophagus were previously evaluated with upper gastrointestinal contrast study and after that flexible endoscopy was used for dilatation. Eight patients had middle esophageal, three patients had proximal esophageal and one of them had both proximal and middle esophageal strictures. The strictures were dilated 56 times in total (mean 5 times). One patient underwent gastrostomy and was medically followed-up after a perforation occurrence during the dilatation procedure. In a 32-year-old female patient, colon interposition was performed after four dilatations since optimal nutritional and developmental status could not be achieved. The dilatation program of nine patients is still in progress. Seven of them can easily swallow solid food but two of them have some difficulties in swallowing between dilatations. One patient rejected the program and quitted, while one patient refused colon interposition and died because of complications related to amyloidosis during the dilatation program. After resolution of the swallowing problem, skin lesions were observed to heal quickly. Epidermolysis bullosa is a rare cause of dysphagia. Esophageal balloon dilatation with flexible endoscopy is a safe and efficient method in patients with this condition.
Gollu G; Ergun E; Ates U; Can O S; Dindar H
Diseases of the Esophagus
2017
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<a href="http://doi.org/10.1111/dote.12503" target="_blank" rel="noreferrer noopener">10.1111/dote.12503</a>
Nursing Unit Environment Associated with Provision of Language Services in Pediatric Hospices
Background Provision of language services in pediatric hospice enables nurses to communicate effectively with patients who have limited English proficiency. Language barriers contribute to ethnic disparities in health care. While language service use corresponds with improved patient comprehension of illness and care options, we lack an understanding of how the nurse work environment affects the provision of these services.
Methods Data were obtained from the 2007 National Home and Hospice Care Survey and included a study sample of 1251 pediatric hospice agencies. Variable selection was guided by structural contingency theory, which posits that organizational effectiveness is dependent upon how well an organization’s structure relates to its context. Using multivariate logistic regression, we analyzed the extent to which nursing unit environment predicted provision of translation services and interpreter services.
Lindley LC; Held ML; Henley KM; Miller KA; Pedziwol KE; Rumley LE
Journal of Racial & Ethnic Health Disparities
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s40615-016-0224-1" target="_blank" rel="noreferrer noopener">10.1007/s40615-016-0224-1</a>
Reframing US Maternity Care: Lessons Learned From End-of-Life Care
Delivery Obstetric; Maternal Health Services; Patient-centered Care; Patient Participation; Terminal Care; Death; Decision Making; Female; Guidelines As Topic; Humans; Infant Newborn; Midwifery; Palliative Care; Parturition; Patient Safety; Pregnancy; United States
Tilden EL; Snowden JM; Caughey AB; Lowe NK
Journal of Midwifery & Women's Health
2017
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10.1111/jmwh.12525
Pain In Children
Child Health Care; Pain/pc [prevention]; Canada; Childhood Disease; Clinical Research; Dermatome; Diagnostic Accuracy; Diagnostic Value; Doctor Patient Relation; Editorial; Education Program; Epidural Catheter; Human; Medical Literature; Nerve Block; Pain Assessment; Palliative Therapy; Patient Safety; Pediatric Anesthesia; Self Report
Finley G A
Pain Research And Management
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).