Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Description
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
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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).
adolescent perspectives; children with serious illnesses; COVID-19; parent perspectives; telehealth
Description
Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care. Objective : To explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children. Methods : We recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics. Results : Sixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth. One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary. Conclusion : Families caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care.
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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).
pediatrics; pediatric palliative care; telehealth; telemedicine; telepalliative care
Description
Background: Rady Children's Hospital (RCH) offers an outpatient pediatric palliative clinic that began offering telepalliative care in 2016. Objectives: This study describes demographics of parents receiving pediatric telepalliative care, patient/family satisfaction with telepalliative care, and patient/family perspectives. Design: Retrospective electronic medical record chart review (2016-2020) of telepalliative patients at RCH (San Diego, USA), including satisfaction surveys. Documented quotes from telepalliative care consultations were analyzed thematically. Results: Fifty-six patients were seen through 181 telepalliative visits. Demographics: Forty-three percent were female and 32% were Hispanic/Latino. Ages ranged from 3 months to 25 years. Average Palliative Performance Scale was 47%. Seventy-nine percent used gastrostomy tubes for nutrition, but only 29% used home ventilation. Eighty-two percent completed a Physician Order for Life-Sustaining Treatment. Goals for 84% of patients were for life prolongation and attempt resuscitation. Visits averaged 86 minutes. Twenty-five surveys were returned: 92% felt very satisfied and 96% said the video visit was the same, better, or much better than an in-person visit. Sixty-four percent said the video visit was more convenient and 68% felt the video visit was safer. Identified themes from telepalliative consultations included advocacy for their child, challenges surrounding care for children with complex medical needs, medical team communication, caregiver support, facing uncertainty, and decision making. Conclusions and Implications: Pediatric patients receiving telepalliative care varied in demographics, functional status, and goals of care. Telepalliative care can provide good quality of care and patient satisfaction. In a telepalliative setting, parents were able to communicate challenging aspects of care including navigating uncertainty, finding support, and decision making.
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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).
children with medical complexity; telehealth; care coordination; complex chronic care; technology dependent
Description
Objectives: Medical advances have improved survival of critically ill children, increasing the number that have substantial ongoing care needs. The first aim of this study was to compare healthcare utilization of children with complex chronic conditions across an extensive geographic area managed by a predominantly telehealth-based team (FamiLy InteGrated Healthcare Transitions-FLIGHT) compared to matched historical controls. The second aim was to identify risk factors for healthcare utilization within the FLIGHT population. Methods: We performed a retrospective cohort study of all patients enrolled in the care management team. First, we compared them to age- and technology-based matched historic controls across medical resource-utilization outcomes. Second, we used univariable and multivariable linear regression models to identify risk factors for resource utilization within the FLIGHT population. Results: Sixty-four FLIGHT patients were included, with 34 able to be matched with historic controls. FLIGHT patients had significantly fewer hospital days per year (13.6 vs. 30.3 days, p = 0.02) and shorter admissions (6.0 vs. 17.3 days, p = 0.02) compared to controls. Within the telehealth managed population, increased number of technologies was associated with more admissions per year (coefficient 0.90, CI 0.05 - 1.75) and hospital days per year (16.83, CI 1.76 - 31.90), although increased number of complex chronic conditions was not associated with an increase in utilization. Conclusion: A telehealth-based care coordination team was able to significantly decrease some metrics of healthcare utilization in a complex pediatric population. Future study is warranted into utilization of telemedicine for care coordination programs caring for children with medical complexity.
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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).
COVID-19; telehealth; parent perspectives; children with serious illnesses; adolescent perspectives
Description
Context : Few studies have explored the impact of the Coronavirus Pandemic (COVID-19) on the care of seriously ill children which may be especially affected due to the child's vulnerability, complexity of care, and high reliance on hospital-based care. Objective : To explore parental and adolescent perspectives on the impact of COVID-19 on care of seriously children. Methods : We recruited a convenience sample of families of seriously ill children between September and December 2020. The study involved a semi-structured interview through Zoom followed by an online sociodemographic survey. Interviews were transcribed and coded using the constant comparison method. The sample intended to represent diversity in child age and diagnoses, and family sociodemographic characteristics. Results : Sixty-four families were approached; 29 enrolled (response rate 45%), including 30 parents and three AYAs. Most parents and AYAs identified as white (62%). Some families reported new financial hardships, with 17.2% having difficulty paying bills after March 2020 compared to 6.9% before. Emerging themes from interviews included additional roles parents managed due to cancelled services or shifting to telehealth, increased isolation, high emotional distress due increased in-home demands, uncertainty, and visitor restrictions in medical facilities, and benefits and challenges to telehealth. One positive outcome was the use of a hybrid care model whereby families choose telehealth appointments and in-person services, when necessary. Conclusion : Families caring for seriously ill children during COVID-19 face increased challenges. Health systems should consider long-term telehealth/in-person hybrid care models that have potential to improve access to and satisfaction with care.
Rights
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).
Background: Hospital-based support for bereaved parents is regarded as best practice. Little is known about parental perceptions or programmatic potential of online grief support. Objectives: To learn from bereaved parent participants' experiences with an online support group to include perceptions of technology acceptance and group communication dynamics. Design: Descriptive study reporting on an eight-week online bereavement support group offered during summer 2020. Subjects and Setting: Inclusive of six bereaved parent participants in the Midwestern United States. Measurements: Post-intervention survey consisting of 49-items with the Technology Acceptance Model and Other Communicated Perspective-Taking Ability instruments embedded. Results: Five bereaved mothers and one father (mean age 32 years) residing an average 126 miles from hospital participated in an online support group in a timeframe seven months to one year from the death of their child. Intensity of grief emotion (5/6 parents) and physical distance (4/6 parents) were notable barriers to in-person visits to the hospital, where bereavement support was to be offered. Parents uniformly reported feeling benefit from the program and satisfaction with the program. Respondents self-reported gaining improved communication (4/6 parents), coping (3/6 parents), peer support (3/6 parents), education (3/6 parents), and emotional expression (3/6 parents). Mean scores on the technology acceptance and communication experiences scales were 4.7/5. The virtual format was an acceptable modality with perceived supportive interpersonal communication dynamics. Conclusion: Pediatric palliative care teams may consider the offering of online bereavement support groups. Further research is warranted on the impact and outcomes of online bereavement support groups for bereaved parents.
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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).
CONTEXT: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts. OBJECTIVES: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication. METHODS: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used. RESULTS: Fifteen hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three-months prior. Nurses were female with mean age 38 years and average 7 years hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use. CONCLUSIONS: The experiences of nurses who utilize telehealth in their care for children receiving end of life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access.
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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).
Telehealth acceptability for children, family, and adult hospice nurses when integrating the pediatric palliative inpatient provider during sequential rural home hospice visits
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).
child; clinical article; comfort; community hospital; conference abstract; consensus; education; feasibility study; female; follow up; human; human experiment; Likert scale; male; palliative therapy; primary health care; program feasibility; questionnaire; satisfaction; telehealth; tertiary care center; total quality management
Description
Objectives: * Explain a novel method for creating pediatric palliative care resources using telehealth technology. * Describe preliminary data demonstrating project feasibility and satisfaction.
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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).
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to access services. We present cases wherein telehealth was used to provide counseling services to patients who would not have been able to receive this service. METHODS: We discuss cases of telehealth use for patient and family counseling in the setting of palliative care and bereavement follow-up. Patients who live a great distance from the hospital with limited access to services were followed by a hospital-based pediatric palliative care team. Patients and families gave feedback after use of telehealth for counseling services. RESULTS: Counseling through telehealth by our hospital-based palliative care social worker was successful for all parties involved: patient, family, and social worker. CONCLUSIONS: Telehealth helps relieve disparity in access to services and care, which is particularly problematic in pediatrics and mental health. For the patients in this case series, it was an effective modality to receive counseling services and meet needs that otherwise would not have been addressed.
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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).
Citation List Month
July 2017 List
Notes
1556-3669 Winegard, Billie Miller, Elissa G Slamon, Nicholas B Journal Article United States Telemed J E Health. 2017 May 9. doi: 10.1089/tmj.2016.0251.
Quality Of Care Collaborative For Paediatric Palliative Care In Australia (quocca)
Creator
Herbert A; Irving H; Pedersen LA; Baggio S; Delaney A; Donovan L; McLarty A; Duc J; Slater P; Johnson S; Trethewie S; Ryan S; Hynson J; Duffield J; Fleming S; Heywood M; Phillips M; Momber S; Burr C
Identifier
10.1002/pbc.26591
Publisher
Pediatric Blood And Cancer
Date
2017
Subject
Australia; Palliative Therapy; Anxiety; Child; Clinical Trial; Diagnosis; Dyspnea; Education; Family Study; Female; Human; Major Clinical Study; Male; Nausea; Nurse; Pain; Patient Referral; Questionnaire; Seizure; Staff; Symptom; Telehealth; Terminal Care
Description
Background: Geography and population distribution present challenges to the care of children with life-limiting conditions (LLC) within Australia. Children and young people have unique needs in relation to the provision of palliative care within Australia. Objectives: This project aims to improving the quality of care provided to children in close proximity to their home through educational initiatives. This is primarily delivered through "pop-up" education. 'Pop-up' education usually occurs (face-face or telehealth) when a specialist service is building capacity within a child and family's local community and creating a paediatric network. The education provided can be specific to symptom management, end of life care, physical aspects of patient care according to their individualised need and diagnosis and psychosocial needs. The setting is usually in a non-metropolitan location, and the education is provided in a timely manner in relation to the patient's needs. Design/Method: The project is a collaboration of the specialist paediatric palliative care services in each state of Australia. The project is being evaluated using pre and post intervention questionnaires completed by participants in the 'pop-up' educational initiatives. Evaluationwill consider factors such as knowledge, confidence and efficacy around providing care for children with LLC. Results: Forty-six "pop-up" education sessions had been delivered between June 2015 and November 2016. This has included each state and territory of Australia. There have been 507 participants in pop-up education sessions (92 hours of education). Nurses represented the largest group of attendees.Medical and allied health staff also attended demonstrating the need for education to applicable to an inter-disciplinary audience. To date there has been an improvement in the knowledge and confidence of participants to:* manage symptoms (pain, nausea, dyspnoea, seizures, and anxiety), * manage a new referral, * be aware of available resources* be confident in how to help a family prepare for a child's death* confidence in the provision of medications to children's receiving palliative care (including subcutaneous delivery). Conclusion: A collaboration of paediatric palliative care services providing education in a planned and co-ordinated way shows promise in increasing capacity for paediatric palliative care within Australia, and should assist achieving goals of the National Palliative Care Strategy 2010.
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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).