Bereaved Parent Perspectives on the Benefits and Burdens of Technology Assistance among Children with Complex Chronic Conditions
children; complex chronic conditions; pediatrics; technology
Background: Many children with complex chronic conditions (CCCs) are supported by medical technologies. Objective: The aim of this study was to understand bereaved parent perspectives on technology assistance among this unique population. Design: Mixed methods design was used to analyze data from the cross-sectional Survey of Caring for Children with CCCs. Setting/Subjects: Bereaved parents of children with CCCs who received care at a large academic institution in the United States and died between 2006 and 2015. Measurements: Survey items were analyzed descriptively and integrated with thematic analysis of open-response items to identify key themes pertaining to parents' perspectives on technology. Results: 110/211 (52%) parents completed the survey and at least 1 open-response item. More than 60% of parents had children with congenital/chromosomal or central nervous system progressive CCCs, used technology at baseline, and died in the hospital. A subset of parents recalled making decisions either not to initiate (n = 26/101, 26%) or to discontinue (n = 46/104, 44%) technology at end of life. Parents described both the benefits and burdens of technology. Two themes emerged regarding technology's association with the (1) intersection with goals of care and (2) complications and regret. Within goals of care, two subthemes arose: (a) technology was necessary to give time for life extension and/or to say goodbye, and (b) technology greatly impacted the child's quality of life and symptoms. Conclusions: Parents have nuanced perspectives about the benefits and burdens of technology. It is essential to understand parent's most important goals when supporting decisions about technology assistance for children with CCCs.
Bogetz JF; Revette A; DeCourcey DD
Journal of 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/10.1089/jpm.2021.0221" target="_blank" rel="noreferrer noopener">10.1089/jpm.2021.0221</a>
The Increase of Attention in Rett Syndrome: A Pre-Test/Post-Test Research Design
intervention; children; technology; Rehabilitation; girls; Attention process; Psycho-educational; Rett Syndrome; Training; trial; alertness; tone and motor problems; physiological intervention; selective attention training; selective attention
Rett Syndrome (RS) is a neuro-developmental disorder, predominantly affecting females, resulting in severe mental retardation and neuro-behavioral disability. Some RS theoreticians hypothesize that behaviors that are neurologically driven are not open to modification. Despite these claims, the aim of this study is to show that girls with RS can increase high attention abilities through well structured procedures. Twelve girls with RS are involved in training based on the improvement of the attention process and reduction of help needed. The procedure was carried out in five phases with a pre-test/post-test design for clinical research. Results point out that girls with RS show an improvement in selective attention and a decrease in the amount of help needed during the training. This intervention demonstrated that individuals with RS could be promoted and motivated to learn when they were appropriately and therapeutically stimulated.
Fabio R A; Giannatiempo S; Oliva P; Murdaca A M
Journal of Developmental and Physical Disabilities
2011
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/s10882-010-9207-z" target="_blank" rel="noreferrer noopener">10.1007/s10882-010-9207-z</a>
Pediatric hospice and palliative care: designing a mobile app for clinical practice
Technology
no abstract Key Points * Assemble an interdisplinary team to design the mobile app to meet the needs of clinical users. * Plan for marketing, “keeping it fresh,” and large data volumes when implementing a mobile app. * See beyond the current application and vision future uses for your mobile app.
2014-07
Lindley LC; Zhou W; Mack JW; Li Xueping
CIN: Computers, Informatics, Nursing
2014
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/CIN.0000000000000084" target="_blank" rel="noreferrer">10.1097/CIN.0000000000000084</a>
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Children; Meditation; mobile applications; multimedia; Palliative; relaxation; Stress; technology
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
2018-01
Weekly T; Walker N; Beck J; Akers S; Weaver M
Children (basel)
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/10.3390/children5020016" target="_blank" rel="noreferrer">10.3390/children5020016</a>
Staff experiences with end-of-life care in the pediatric intensive care unit
Humans; Intensive Care Units; Grief; Medical Staff; Professional-Patient Relations; Medical; Pediatric; Psychological; Stress; Hospital/psychology; Interviews as Topic/methods; Technology; Terminal Care/ethics/methods
The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief. CONCLUSIONS: The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support.
2008
Lee KJ; Dupree CY
Journal Of Palliative Medicine
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/10.1089/jpm.2007.0283" target="_blank" rel="noreferrer">10.1089/jpm.2007.0283</a>
The sorcerer's broom: medicine's rampant technology
Humans; Attitude to Health; Attitude of Health Personnel; Social Values; Risk Assessment; Reproducibility of Results; Power (Psychology); Ethics; Uncertainty; Medical; Physicians/psychology; Diffusion of Innovation; Health Care and Public Health; Technology; science; Dehumanization
Discusses the impact of technology on the practice of medicine. Effect of technology to medical inflation; Influence of technology on the attempt to reform the health care system and on the redirection of the goals of health care system; Problems related to medical technology; Technological solutions to medical problems, Pitfalls of technology as it relates to medical practice.
1993
Cassell EJ
The Hastings Center Report
1993
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/10.2307/3562922" target="_blank" rel="noreferrer">10.2307/3562922</a>
The role of hospice in the transition from hospital to home for technology‐dependent children—a qualitative study
2017; Children; Discharge Planning; Hospital; No Terms Assigned; Technology
Aims and objectives To report parent and professional perspectives of step‐down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. Background In recent years, increasing numbers of children‐dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. Design This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. Methods Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step‐down care. Results Multiple benefits of step‐down in the hospice were clear. Both sets of accounts suggested that for children and families life was 'on hold' in hospital. Hospice was considered a home‐like environment where the child and family could 'live again'. Parents reflected that, in hospice they were 'living, not existing' while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. Conclusions and relevance to clinical practice The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Price Jayne; McCloskey Sharon; Brazil Kevin
Journal of Clinical Nursing
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).
10.1111/jocn.13941