Metasynthesis of Factors That Influence Parents' Participation in Pain Management for Their Infants in the NICU
Parents/psychology; Newborn Infant; Professional-Patient Relations; Patient Satisfaction; Qualitative Research; Nicu; Quality of Health Care/standards; qualitative research; pain management; Neonatal Intensive Care Unit Standards; Patient Participation/methods/psychology; parents’ participation; Pain Management/methods/standards/trends; Parenting/psychology/trends
OBJECTIVE: To metasynthesize the results of qualitative studies on the factors that affect parents' participation in pain management for their infants during procedures in the NICU. DATA SOURCES: We conducted a literature search for articles published from 1976 through November 2019 using MeSH terminology in the following databases: MEDLINE, CINAHL Plus, EMBASE, PubMed, PsycINFO, Cochrane, Scopus, and Web of Science. All qualitative studies in which researchers explored parental participation and education in the NICU were included. STUDY SELECTION: A total of 29,937 articles were returned. Once we removed duplicates and limited results to qualitative studies, 48 articles remained. We excluded 41 articles because the studies reported were not conducted in NICUs, involved neonatal palliative care, or were review or opinion articles. We included seven articles for review. DATA EXTRACTION: Two authors reviewed all articles using the Critical Appraisal Skills Programme tool to assess study quality and independently scored each study. We reviewed and extracted authors, publication date, type of study, sample size, results, themes, and quotes and included these data elements in the analysis. DATA SYNTHESIS: We used a thematic synthesis technique to review the qualitative data, entered codes into NVivo software, and compared codes to create descriptive themes. From these descriptive themes, we generated four analytic themes: Learning to Parent a Hospitalized Infant, Stress and Anxiety, Health Care Providers as Gatekeepers, and NICU Environment. CONCLUSION: The four themes identified in this qualitative metasynthesis represent the factors that affect parents' abilities to participate in their infants' pain management. Further research is recommended to develop interventions that address these factors to optimize parents' participation in pain management for their infants during procedures in the NICU.
McNair C; Chinian N; Shah V; McAllister M; Franck LS; Stevens B; Burry L; Taddio A
Journal of Obstetric, Gynecologic, & Neonatal Nursing
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/10.1016/j.jogn.2020.02.007" target="_blank" rel="noreferrer noopener">10.1016/j.jogn.2020.02.007</a>
Improving neonatal care with the help of veteran resource parents: An overview of current practices
Infant Newborn; Humans; Parents; Intensive Care Units Neonatal; Neonatology; Family-centered care; Neonatal intensive care unit; Patient-centered research; Peer-to-peer support; Resource parents; Intensive Care Neonatal/standards; Neonatology/standards; Quality of Health Care/standards
Over the past decade, veteran parents who have lived a neonatal intensive care unit (NICU) experience have become increasingly involved as 'resource parents' to provide peer-to-peer support to "new" NICU parents. These parents can provide a unique form of support to new parents. They can also assume other roles in clinical care, research, administration and/or teaching, but those roles are rarely described in the literature. This article reviews many of the activities performed by resource parents in neonatology. These activities were identified/examined and classified according to the location of involvement (hospital or not), the presence/absence of direct interaction with families and providers, and the topic of involvement. We have also identified gaps in knowledge relative to recruitment and training, development and evaluation of programs, structuring of responsibilities, and remuneration of resource parents. Future research is needed to measure the impact of resource parents on neonatal care.
Bourque CJ; Dahan S; Mantha G; Robson K; Reichherzer M; Janvier A
Seminars in Fetal and Neonatal Medicine
2018
<a href="http://doi.org/10.1016/j.siny.2017.10.005" target="_blank" rel="noreferrer noopener">10.1016/j.siny.2017.10.005</a>
Issues related to providing quality pediatric palliative care in the community
Child; Humans; Pediatrics; Health; Insurance; Palliative Care/standards; Community Health Services/standards; Home Care Services/standards; Hospice Care/standards; Quality of Health Care/standards; Reimbursement
The medical practitioner in the community is in a unique position to assist children and their families from the time of diagnosis with a life-threatening condition through to the end of life. The purpose of this article is to inform medical practitioners who care for children with complex, chronic, and life-limiting conditions about pediatric palliative care in the community. It is intended as a guide to improve understanding about (1) the misconceptions and barriers surrounding the provision of care in the community for children with chronic, complex, and life-limiting conditions; (2) the availability of services for care in the community; (3) challenges concerning out-of hospital do-not-attempt-resuscitation orders for children; and (4) reimbursement issues that impact the provision of care.
2007
Carroll JM; Torkildson C; Winsness JS
Pediatric Clinics Of North America
2007
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2007.06.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.06.002</a>
Toward optimal end-of-life care for patients with advanced chronic obstructive pulmonary disease: insights from a multicentre study
Female; Humans; Male; Survival Rate; Aged; Middle Aged; Pulmonary Disease; retrospective studies; Patient Satisfaction/statistics & numerical data; Ontario/epidemiology; Terminal Care/standards; Quality of Health Care/standards; Nova Scotia/epidemiology; British Columbia/epidemiology; Alberta/epidemiology; Chronic Obstructive/mortality/therapy
BACKGROUND: Understanding patients' needs and perspectives is fundamental to improving end-of-life (EOL) care. However, little is known of what quality care means to patients who have advanced lung disease. OBJECTIVES: To describe ratings of importance and satisfaction with elements of EOL care, informational needs, decision-making preferences, obstacles to a preferred location of death, clinical outcomes, and health care use before and during an index hospital admission for patients who have advanced chronic obstructive pulmonary disease (COPD). METHODS: A questionnaire with regard to quality EOL care was administered to patients older than 55 years of age who had advanced medical disease in five Canadian teaching hospitals. RESULTS: For 118 hospitalized patients who had advanced COPD, the following items were rated as extremely important for EOL care: not being kept alive on life support when there is little hope for meaningful recovery (54.9% of respondents), symptom relief (46.6%), provision of care and health services after discharge (40.0%), trust and confidence in physicians (39.7%), and not being a burden on caregivers (39.6%). Compared with patients who had metastatic cancer, patients with COPD had lower (P<0.05) satisfaction with care, interest in information about prognosis, cardiopulmonary resuscitation or mechanical ventilation, and referral rates to palliative care, whereas use of acute care services was higher (P<0.05) for patients who had advanced COPD. CONCLUSION: Canadian patients who have advanced COPD identify several priorities for improving care. Avoidance of prolonged or unwanted life support requires more effective communication, decision making and goal setting. Patients also deserve better symptom control and postdischarge strategies to minimize perceived burdens on caregivers, emergency room visits and hospital admissions.
2008
Rocker GM; Dodek PM; Heyland DK; Canadian Researchers at the End of Life Network
Canadian Respiratory Journal : Journal Of The Canadian Thoracic Society
2008
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).
Journal Article
<a href="http://doi.org/10.1155/2008/369162" target="_blank" rel="noreferrer">10.1155/2008/369162</a>
Paediatric respite care: A literature review from New Zealand
Child; Health Planning; Family Health; New Zealand; adolescent; Human; Quality of Health Care/standards; Terminal Care/organization & administration; Palliative Care/organization & administration; Respite Care/organization & administration
This paper reviews relevant international and New Zealand literature, policy documents and reports on respite provision for children who are dying and their families. The literature describes why respite care for children is necessary, and evaluates present respite services in accord with recent reports and literature. The service provisions needed for dying children and their families are explored, including suggestions for the improvement of services and future research. The literature reveals that, although respite care for terminally ill children and their families is necessary, service provisions are uncoordinated, not always culturally sensitive and very limited for children and their families. Improvement in paediatric respite services is necessary and research needs to be conducted in this area to facilitate the development of more appropriate respite services for children and their families.
2002
Horsburgh M; Trenholme A; Huckle T
Palliative Medicine
2002
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).
Journal Article