A pilot study on sports activities in pediatric palliative care: just do it
Palliative Care; child; article; controlled study; female; human; male; caregiver; palliative therapy; quality of life; Pilot Projects; Sports; personal experience; pilot study; juvenile; motor dysfunction; questionnaire; exercise; physical activity; swimming; International Classification of Functioning Disability and Health; mental deficiency
Avagnina I; Santini A; Maghini I; Salamon E; Papa S; Giacomelli L; Perilongo G; Agosto C; Benini F
BMC Palliative Care
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="https://bmcpalliatcare.biomedcentral.com/articles/10.1186/s12904-023-01164-x">10.1186/s12904-023-01164-x</a>
Development Of Research Priorities In Paediatric Pain And Palliative Care
Chronic Pain; Palliative Therapy; Research Priority; Awareness; Child; Clinical Research; Clinical Study; Clinical Trial; Data Base; Exercise; Gabapentin; Human; Nonsteroid Antiinflammatory Agent; Opiate; Pharmacokinetics; Postoperative Pain; Safety; Symptom; Uncertainty; United Kingdom
Liossi C; Anderson AK; Howard R
British Journal Of Pain
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).
10.1177/2049463716668906
Pediatric palliative care and resident education
outpatient; human; child; palliative therapy; comfort; simulation; pediatrics; hospice; pain; conference abstract; survival; curriculum; terminal disease; hospital patient; pediatrician; resident; questionnaire; decision making; exercise; internal medicine; primary medical care
Description: Improving Familiarity with Pediatric Palliative Care Among Pediatric and Internal Medicine-Pediatric Residents. Objectives: To increase familiarity with and comfort level in providing pediatric palliative care in inpatient and outpatient settings among pediatric and internal medicine-pediatrics residents at a tertiary care children's hospital. Background: Palliative care is an emerging field in pediatrics. A policy statement issued by the American Academy of Pediatrics in 2013 recognizes the growing importance of interdisciplinary palliative care and hospice teams in caring for children with life threatening conditions. As medical advancements lead to a broader range of treatment options and increased survival of children with complex medical issues, patients and their families rely on their pediatric providers, both inpatient and outpatient, for an introduction to palliative care. However, pediatric providers at all levels of training have consistently reported minimal training, experience, or competence in key areas of palliative care. A workshop was developed by the authors and conducted among pediatric and internal medicine-pediatrics residents to address these gaps in the current resident curriculum. Research Objectives: The impact of the workshop was measured by changes to an 11-item, Likert-scaled questionnaire administered before and after the workshop. We hypothesized that participants of this study would report increased familiarity and confidence in pe-diatric palliative care after completing the curriculum. Methods: Participants were interns and residents of the UMMS-Baystate pediatric and internal medicine-pediatric pro-grams. The workshop consisted of two one-hour sessions which combined didactics and practical exercises. The first session provided basic definitions and addressed the role of primary care pediatricians in providing palliative care including discussions with family regarding long term goals of care. The second focused on inpatient concepts such as pain control in terminal illness and conducting effective family meetings regarding end of life decision making. Residents were asked to fill out a questionnaire prior to the intervention and after completion of both sessions. Results: Residents reported an overall greater comfort with the topic after the intervention (Pre: Median 3.1, IQR 2.8-3.8, Post: Median 4.1, IQR 3.6-4.3, P=0.003). They also reported better understanding of what pediatric palliative care is (P = 0.001) and more comfort leading a discussion regarding palliative care options for patients (P= 0.007) after the intervention. Conclusions/Implications: After a brief workshop designed for residents, participants reported improved familiarity and comfort level with pediatric palliative care. This educational intervention was able to show that residents benefit from training in pediatric palliative care. We hope that this provides a framework for further educational sessions for pediatric residents. We also hope to use this as a framework for development of a simulation based curriculum for difficult discussions within pediatrics.
Penney J; Kim G; Dietzen D
Journal of Palliative Medicine
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).
<a href="http://doi.org/10.1089/jpm.2018.29007.abstract" target="_blank" rel="noreferrer noopener">10.1089/jpm.2018.29007.abstract</a>
Preparing for Good Grief: Grief and Loss in the Hospice and Palliative Context (P07)
bereavement support; child; complicated grief; conference abstract; exercise; hospice; human; learning; palliative therapy; professional practice; program development; risk factor; survivor; videorecording
Objectives: * Describe state of current science and theory related to grief and bereavement. * Discuss variations of grief and strategies to support bereaved individuals. * Identify best practices to support healthy grief in hospice and palliative care contexts. * Identify special needs of unique populations across the lifespan (e.g., children, teens), persons with intellectual disabilities, those experiencing unexpected death of a family member or close friend, or those having complicated grief. * Identify program services and opportunities that utilize current best practices and knowledge within their own agency. Grief and bereavement are universal human experiences, and inevitable outcomes for those who lose a family member or close friend. For hospice and palliative care providers, understanding the complexities of this universal yet individualized experience, and providing support to the bereaved is a critical part of our field. This practical, interactive workshop will provide an overview of current theories, best practices, and approaches to support healthy grief and manage loss in a modern society. Through a variety of learning exercises, including discussion of field experience and current research, case studies, video exercises, and reflections, this presentation will discuss the complexities within the grief experience in hospice and palliative care. Phases of bereavement care needs, including the initial diagnosis, grieving through the disease process, becoming eligible for hospice services, support through the ongoing trajectory of grief, and facilitating access to community supports, will be discussed. Implications for hospice and palliative care inter-professional practice, program planning, and community advocacy will be provided. Special circumstances that challenge bereavement will be identified, including children, teens, survivors of traumatic loss, and risk factors for Prolonged Grief Disorder (PGD). Concerns that can particularly be addressed in the palliative context to support healthy grieving, and gaps in knowledge and services will also be highlighted.
Remke S S; Shukraft A E; Supiano K P; Wladkowski S P
Journal of Pain and Symptom Management
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.jpainsymman.2019.12.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.018</a>
Prolotherapy injections, saline injections, and exercises for chronic low-back pain: a randomized trial
Injections; Randomized Controlled Trials; Exercise; Low back pain; Sclerotherapy
Objectives: To assess the efficacy of a prolotherapy injection and exercise protocol in the treatment of chronic nonspecific low back pain. Design: Randomized controlled trial with two-by-two factorial design, triple-blinded for injection status, and single-blinded for exercise status. Setting: General practice. Participants: One hundred ten participants with nonspecific low-back pain of average 14 years duration were randomized to have repeated prolotherapy (20% glucose/0.2% lignocaine) or normal saline injections into tender lumbo-pelvic ligaments and randomized to perform either flexion/extension exercises or normal activity over 6 months. Main outcome measures: Pain intensity (VAS) and disability scores (Roland-Morris) at 2.5, 4, 6, 12, and 24 months. Results: Follow-up was achieved in 96% at 12 months and 80% at 2 years. Ligament injections, with exercises and with normal activity, resulted in significant and sustained reductions in pain and disability throughout the trial, but no attributable effect was found for prolotherapy injections over saline injections or or exercises over normal activity. At 12 months, the proportions achieving more than 50% reduction in pain from baseline by injection group were glucose-lignocaine: 0.46 versus saline: 0.36. By activity group these proportions were exercise: 0.41 versus normal activity: 0.39. Corresponding proportions for >50% reduction in disability were glucose-lignocaine: 0.42 versus normal activity: 0.38. There were no between group differences in any of the above measures. Conclusions: In chronic nonspecific low-back pain, significant and sustained reductions in pain and disability occur with ligament injections, irrespective of the solution injected or the concurrent use of exercises.
2004
Yelland MJ; Glasziou PP; Bogduk N; Schluter PJ; McKernon M
Spine
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/10.1097/01.brs.0000105529.07222.5b" target="_blank" rel="noreferrer">10.1097/01.brs.0000105529.07222.5b</a>
Quality of life related to type 1 Gaucher disease: Spanish experience
Humans; Questionnaires; Prospective Studies; Spain; quality of life; IM; Exercise; Gaucher Disease/pp [Physiopathology]
The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a prospective clinical QOL trial was conducted by application of a Spanish version of the Health Survey SF-36 questionnaire. Patients receiving ERT (69 cases) filled in the questionnaire two times, prior to starting ERT and after two years under ERT. The patients were stratified by gender and age group. Clinical and X-ray data to assess bone disease were obtained from the Spanish Gaucher Register. Demographic, clinical, genotype and analytical data and the response to therapy were evaluated. Four grades of severity were established according to bone disease (no symptoms = 0, moderate bone pain = 1, severe bone crisis = 2, fracture/necrosis = 3). Correlation analysis was made between QOL score and grade of bone disease. RESULTS: Mean age+/-SD 33.6+/-11.7 (range 18-66), M/F,ratio 33/36; bone disease: 0 in 27 patients (47.3%), 1 in 11 (19.3%), 2 in 5 (8.8%) and 3 in 14 (24.5%). Physical activity: 11 patients (19.3%) showed severe restriction and 41 patients (71.9%) were only limited for strenuous activities. The mean score for QOL questionnaire was 11.9+/-10.4 (range 2-46). Correlation between score and bone disease was significant only for 1 and 3 grades (p = 0.02). Improvement in self perception of global health was observed ranging from 34.3% before ERT to 91.4% after ERT (p = 0.001). Nevertheless physical activity remained unsatisfactory in 24.5% of patients due mainly to bone sequelae. COMMENTS: Physical activities and bone disease grade 1 and 3 are negatively related to QOL. Nevertheless no correlation was found with bone pain crisis, possibly due to the transitory character of this event. In spite of the improvement induced by ERT, a quarter of patients remained with physical limitations related to bone disease as well as in need of orthopaedic correction of bone sequelae. In order to improve the QOL an accurate evaluation of bone disease to define therapeutic approaches must be considered.
2005
Giraldo P; Solano V; Perez-Calvo JI; Giralt M; Rubio-Felix D; Spanish Group on Gaucher disease
Quality of Life Research
2005
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/10.1007/s11136-004-0794-y" target="_blank" rel="noreferrer">10.1007/s11136-004-0794-y</a>
The interaction of physical function and emotional well-being in rheumatoid arthritis--what is the impact on disease activity and coping?
Humans; Emotions; Health Status; Disability Evaluation; Health Behavior; quality of life; Adaptation; Psychological; Arthritis; Rheumatoid; Social Support and Chronic Pain; Exercise
OBJECTIVE: To evaluate the impact of the interaction of physical function and emotional well-being on disease-related parameters and coping with rheumatoid arthritis. METHODS: A cross-sectional survey among 177 RA patients included demographic and disease-related variables as well as the following patient-reported outcome measures: Health Assessment Questionnaire-Disability Index (HAQ-DI) (physical function), Mental Component Summary Scale of the SF-36 (MCSS) for emotional well-being, Rheumatoid Arthritis Disease Activity Index (RADAI), and Coping with Rheumatoid Arthritis Questionnaire (C-RAQ). Based on HAQ-DI and MCSS, six categories representing various levels of physical and emotional impairment were formed. Multivariate analysis of variance and a subsequent discriminant analysis were used to evaluate whether demographic and disease-related variables and coping strategies differed between these categories. RESULTS: Patients with moderate to high impairment of physical function and emotional well-being reported significantly higher disease activity and a more frequent use of distancing and active problem solving coping strategies than patients with low-level impairment (p<0.001-0.043). Furthermore, these patients reported experiencing significantly higher levels of helplessness (p<0.001-0.032). Results from the discriminant analysis highlighted a combination of disease activity and helplessness to differentiate best between patients with either low or high impairment of physical function and emotional well-being (p<0.001). CONCLUSION: Aside from perceived disease activity, helplessness, and distancing as well as active problem solving allowed for a good discrimination between the different levels of impairment of physical function and emotional well-being. Encouraging and educating patients on how to cognitively reframe their current situation might play a key role in reducing the level of helplessness resulting from impairments of physical function and emotional well-being.
2013-04
Englbrecht M; Kruckow M; Araujo E; Rech J; Schett G
Seminars In Arthritis And Rheumatism
2013
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.semarthrit.2012.09.003" target="_blank" rel="noreferrer">10.1016/j.semarthrit.2012.09.003</a>