Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews
pediatrics; palliative care; hospitals; parents; qualitative research; ambulatory care
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Engler J; Gruber D; Engler F; Hach M; Seipp H; Kuss K; Gerlach FM; Ulrich LR; Erler A
Journal of Palliative Medicine
2019
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/10.1089/jpm.2019.0245" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0245</a>
Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations
pediatrics; communication; Palliative care; parents; qualitative research; ambulatory care
BACKGROUND: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. AIM: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. DESIGN: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. SETTING/PARTICIPANTS: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. RESULTS: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. CONCLUSIONS: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.
Schuetze D; Ploeger C; Hach M; Seipp H; Kuss K; Bösner S; Gerlach FM; van den Akker M; Erler A; Engler J
Palliative Medicine
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/10.1177/02692163211065294" target="_blank" rel="noreferrer noopener">10.1177/02692163211065294</a>
Parental knowledge and opinions on palliative care for children
ambulatory care; analysis of variance; awareness; Caucasian; child; conference abstract; controlled study; convenience sample; data analysis software; ethnic group; female; high school; human; Illinois; institutional review; legal guardian; Likert scale; major clinical study; male; New York; palliative therapy; physician; randomized controlled trial; terminal care
Purpose: A pilot study to ascertain awareness and understanding of palliative care among parents of pediatric patients at a single academic medical center.
Zawistowski C A; Black C; Spruill T M; Granowetter L
Pediatrics
2018
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).
Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews
ambulatory care; hospitals; palliative care; parents; pediatrics; qualitative research
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Engler J; Gruber D; Engler F; Hach M; Seipp H; Kuss K; Gerlach F M; Ulrich L R; Erler A
Journal of Palliative Medicine
2019
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/10.1089/jpm.2019.0245" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0245</a>
Development and delivery of a one-stop multidisciplinary clinic to provide comprehensive palliative and supportive care for children with cancer
pain; social support; caregiver; terminal care; education; major clinical study; psychologist; outpatient; cancer patient; hospital patient; holistic care; malignant neoplasm; antibiotic agent; conference abstract; financial management; physiotherapist; human; child; female; male; palliative therapy; drug therapy; multidisciplinary team; doctor nurse relation; ambulatory care; dietitian; nutritional counseling; patient coding; physiotherapy; wound
Background/Objectives: To address a service gap at the primary treating Center arising from patient overload and on holidays/weekends, Cankids Pediatric Palliative Care Center in Delhi was providing children with cancer inpatient admissions and ambulatory care IV antibiotics. Other Cankids Social Support services were generally not being offered. Objective of this service was to run a One-stop Social Support Clinic providing holistic care and strengthening Palliative Care Outpatient and Inpatient Services. Design/Methods: Pilot phase of the Clinic (Mar-Sep 2017) supplemented the ambulatory care service with additional access to Pain, Symptom, Wound Management, Psychological and Nutritional Counselling, Physiotherapy, Educational, Financial Support and Patient Navigation along with care giver education by trained professional team. The Clinic operated seven days a week, with 68 clinics, providing 11 services. Providers were trained for Patient Navigation and referrals, Standard Operational Procedures and Patient data management. Results: Total 1,204 patients received 7,101 episodes of care. 195(16%) patients received Palliation of symptoms. Indication for inpatient admissions in 8 out of 64 were for end of life care. 23(62%) of 37 new inpatient admissions were from the Clinic. 261 (57%) of 456 patients who came for IV Ambulatory Care received other social support services including Pain, Symptom Management, Psychological, Nutritional, Hematological Support, Physiotherapy, Medical assistance and Investigations and Educational Scholarships. 25 Patient Care Training Sessions were attended by 347 caregivers. 62.6% participants were extremely satisfied and 37.6% satisfied with the services provided. Conclusions: A well run Social Support One-stop Clinic together with a Multi Disciplinary Team including Palliative Care Physicians, Nurses, Psychologists, Nutritionists,Physiotherapists and Patient Navigators at the Pediatric Palliative Care Center provides enhanced holistic care and a better understanding and acceptance of palliative care. It also provides a platform and the time for parent education on how to care for their child during treatment at home and in the hospital setting.
Anis H; Taluja A; Chuki T; Crack L; Arora R; Bagai P
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Modulation of cortical-limbic pathways in major depression: treatment-specific effects of cognitive behavior therapy
Female; Humans; Male; Adult; Follow-Up Studies; Middle Aged; Sensitivity and Specificity; Personality Inventory; Antidepressive Agents; Depressive Disorder; Ambulatory Care; Outcome and Process Assessment (Health Care); Non-U.S. Gov't; Research Support; Comparative Study; Blood Glucose/metabolism; Brain Mapping; Cerebral Cortex/physiopathology/radionuclide imaging; Cognitive Therapy; Emission-Computed; Energy Metabolism/physiology; Fluorodeoxyglucose F18/diagnostic use; Frontal Lobe/physiopathology/radionuclide imaging; Limbic System/physiopathology/radionuclide imaging; Major/physiopathology/radionuclide imaging/therapy; Nerve Net/physiopathology/radionuclide imaging; Neural Pathways/physiopathology/radionuclide imaging; Paroxetine/therapeutic use; Prefrontal Cortex/physiopathology/radionuclide imaging; Second-Generation/therapeutic use; Tomography
BACKGROUND: Functional imaging studies of major depressive disorder demonstrate response-specific regional changes following various modes of antidepressant treatment. OBJECTIVE: To examine changes associated with cognitive behavior therapy (CBT). METHODS: Brain changes underlying response to CBT were examined using resting-state fluorine-18-labeled deoxyglucose positron emission tomography. Seventeen unmedicated, unipolar depressed outpatients (mean +/- SD age, 41 +/- 9 years; mean +/- SD initial 17-item Hamilton Depression Rating Scale score, 20 +/- 3) were scanned before and after a 15- to 20-session course of outpatient CBT. Whole-brain, voxel-based methods were used to assess response-specific CBT effects. A post hoc comparison to an independent group of 13 paroxetine-treated responders was also performed to interpret the specificity of identified CBT effects. RESULTS: A full course of CBT resulted in significant clinical improvement in the 14 study completers (mean +/- SD posttreatment Hamilton Depression Rating Scale score of 6.7 +/- 4). Treatment response was associated with significant metabolic changes: increases in hippocampus and dorsal cingulate (Brodmann area [BA] 24) and decreases in dorsal (BA 9/46), ventral (BA 47/11), and medial (BA 9/10/11) frontal cortex. This pattern is distinct from that seen with paroxetine-facilitated clinical recovery where prefrontal increases and hippocampal and subgenual cingulate decreases were seen. CONCLUSIONS: Like other antidepressant treatments, CBT seems to affect clinical recovery by modulating the functioning of specific sites in limbic and cortical regions. Unique directional changes in frontal cortex, cingulate, and hippocampus with CBT relative to paroxetine may reflect modality-specific effects with implications for understanding mechanisms underlying different treatment strategies.
2004
Goldapple K; Segal Z; Garson C; Lau M; Bieling P; Kennedy S; Mayberg H
Archives Of General Psychiatry
2004
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/10.1001/archpsyc.61.1.34" target="_blank" rel="noreferrer">10.1001/archpsyc.61.1.34</a>
Non-compliance in children post-liver transplant. Who are the culprits?
Child; Female; Humans; Male; Survival Rate; Parents; Treatment Refusal; Socioeconomic Factors; Ambulatory Care; adolescent; Adolescent Transitions; Graft Rejection; Reoperation; Immunosuppressive Agents/therapeutic use; Liver Transplantation/mortality
Although non-compliance in pediatric liver transplants is known to be a major cause of late graft loss and patient mortality, follow-up seems inconsistent. As liver transplant becomes a luxury because of the shortage of organs, the need to maximize graft and patient survival by intense monitoring becomes a necessity. When evaluating children with elevated liver enzymes post-transplant, early or late non-compliance should always be suspected. The risk of non-compliance in children with chronic illness varies from 10 to 89%. In a study by Sudan et al. non-compliance was one of the leading causes of late mortality in children age 10-17 yr. Although it is well documented that teenagers have a high rate of non-compliance, the rate in the younger children has not been documented. In our series, we found that parental non-compliance comprises the majority of our problems with liver dysfunction, hospitalization, and graft loss. The purpose of this study was to evaluate the incidence of non-compliance in children post-liver transplant. A retrospective chart review of patient records from admissions and outpatient records was performed for documentation of elevated enzymes and low immunosuppressive levels. From July 1987 to December 2002, our program performed 266 liver transplants in 234 children, with 1-yr graft survival of 84% and 1-yr patient survival of 90%. Our overall patient survival was 85% with 77% graft survival. There were 40 children with documented non-compliance with mild to severe liver dysfunction in this study. Twenty-eight of these children were younger than 10 yr [28 of 40 (46%) <5 yr], and 12 (30%) were older than 10 yr at the time of rejection. In 10 of 40 children, there was one documented incident of non-compliance, while 26 of 40 had two to four incidents, and four had five or more documented events. Our children (50%) came from two-parent households. The remaining 50% were from single households. In 27 of 40 (68%) children, rejection was confirmed by liver biopsy. In children on cyclosporine (Neoral; Novartis, East Hanover, NJ, USA) with a known history of non-compliance and low immunosuppressive levels, C2 monitoring was performed to verify absorption. Admission for drug monitoring and verification of non-compliance was accomplished in 32 of 40 (80%). Four of the 40 children (10%) were retransplanted, and one child had died. In conclusion, non-adherence to medications remains a major source of graft loss and morbidity post-transplant. We found that non-compliance crosses all socio-economic and cultural groups and that flexibility of clinic hours, shortened time between visits, and decreased numbers and times of medication will increase adherence.
2004
Falkenstein K; Flynn L; Kirkpatrick B; Casa-Melley A; Dunn S
Pediatric Transplantation
2004
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/10.1111/j.1399-3046.2004.00136.x" target="_blank" rel="noreferrer">10.1111/j.1399-3046.2004.00136.x</a>
Research methodology: cancer cachexia syndrome
Humans; Prognosis; Ambulatory Care; quality of life; Nutritional Status; Neoplasms/complications; Cachexia/etiology; Body Composition; Weight Gain; Placebo Effect; Biomedical Research/methods; Exercise/physiology
Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterized by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different patients and may change in severity during the course of a patient's illness. The multifactorial origin of cachexia precludes a uniform pathophysiological definition. Taken together these factors have hindered clinical studies both at a fundamental level and in terms of the introduction of effective therapy. The advent of novel therapeutic targets (e.g., ubiquitin-proteasome pathway) and biological response modifiers has opened possibilities for new clinical trials in cachexia. Regulatory authorities feel it is important not only to demonstrate efficacy in terms of patients' nutritional status (e.g., lean body mass) but also functional status (e.g., performance status). This article reviews current methods to assess the latter. Methods focused on measuring physical activity level (e.g., doubly labelled water technique or physical activity meters) promise objective data which can be readily interpreted in terms of clinically meaningful benefit.
2004
Dahele M; Fearon KC
Palliative Medicine
2004
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/10.1191/0269216304pm906ra" target="_blank" rel="noreferrer">10.1191/0269216304pm906ra</a>
Continuity of care: an approach to measurement
Hospitalization; Humans; Questionnaires; Follow-Up Studies; Prospective Studies; Communication; Psychotherapy; Comprehensive Health Care; Medical Records; Ambulatory Care; Models; referral and consultation; Theoretical; Community Mental Health Services; Evaluation Studies as Topic; Community Psychiatry; Day Care; Mental Disorders/therapy; Transfer Agreement
1972
Bass RD; Windle C
The American Journal Of Psychiatry
1972
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/10.1176/ajp.129.2.196" target="_blank" rel="noreferrer">10.1176/ajp.129.2.196</a>
Communication breakdown in the outpatient referral process
Communication; Ambulatory Care; CONSULTATION; Referral
Objective: To evaluate primary care and specialist physicians' satisfaction with interphysician communication and to identify the major problems in the current referral process. Design: Surveys were mailed to providers to determine satisfaction with the referral process; then patient-specific surveys were e-mailed to this group to obtain real-time referral information. Setting: Academic tertiary care medical center. Participants: Attending-level primary care physicians (PCPs) and specialists. Measurements and Main Results: The response rate for mail surveys for PCPs was 57% and for specialists was 51%. In the mail survey, 63% of PCPs and 35% of specialists were dissatisfied with the current referral process. Respondents felt that major problems with the current referral system were lack of timeliness of information and inadequate referral letter content. Information considered important by recipient groups was often not included in letters that were sent. The response rate for the referral specific e-mail surveys was 56% for PCPs and 53% for specialists. In this e-mail survey, 68% of specialists reported that they received no information from the PCP prior to specific referral visits, and 38% of these said that this information would have been helpful. In addition, four weeks after specific referral visits, 25% of PCPs had still not received any information from specialists. Conclusions: Substantial problems were present in the referral process. The major issues were physician dissatisfaction, lack of timeliness, and inadequate content of interphysician communication. Information obtained from the general survey and referral-specific survey was congruent. Efforts to improve the referral system could improve both physician satisfaction and quality of patient care.
2000
Gandhi T; Sittig D; Franklin M; Sussman A; Fairchild D; Bates D
Journal Of General Internal Medicine
2000
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/10.1046/j.1525-1497.2000.91119.x" target="_blank" rel="noreferrer">10.1046/j.1525-1497.2000.91119.x</a>