Developing a Mobile Application to Provide Comprehensive Information and Support for Families Navigating Pediatric Palliative Care.
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 30
- 试验地点
- 1
- 主要终点
- Number of phone follow-ups or teleconsultations done by PPC team within 24/72 hours of the child filling the assessment form measured by descriptive statistics
研究概览
简要总结
At Tata Memorial Hospital (TMH), we offer a range of Pediatric Palliative Care (PPC) services,
including outpatient clinics, in-patient consultations, home-based care, and respite care. These
services are designed to help children with cancer and their families manage symptoms and
provide support. However, many children come from far-off places and cannot easily return to
TMH for ongoing care. This makes it difficult to maintain effective communication and support
once they return home. To address this challenge, we are developing a mobile application to
assist families of children with advanced cancer. This app will allow parents and children to
easily report symptoms, follow up with medical experts, and access peer support. By making it
easier to communicate their needs and manage their care, the app aims to improve the quality of
life for these children and their families, even when they are far from the hospital.
Our Project will be conducted in two stages -
Stage 1: We will gather input from stakeholders—including children, parents, and healthcare
professionals—about what features the app should include. This feedback will help us design the
app to meet users’ needs.
Stage 2: A software developer will create the app based on the finalized content. We will pilot
test the app with 10 children from Mumbai, assessing its ease of use and effectiveness in
providing timely help and support.
Expected Outcomes
We hope the app will:
- Improve communication between the PPC team and families.
- Enhance symptom management and support.
- Increase engagement with educational resources.
The app will help ensure that children who need intensive symptom management can receive
timely care and support from their medical team, even from a distance. All data will be handled
with strict confidentiality, and personal information will be securely stored and anonymized.
This innovative approach aims to empower families and improve the quality of palliative care for
children with advanced cancer, making it easier for them to stay connected and supported, no
matter where they are.
研究设计
- 研究类型
- Interventional
- 分配方式
- Na
- 盲法
- None
入排标准
- 年龄范围
- 1.00 Year(s) 至 18.00 Year(s)（—）
- 性别
- All
入选标准
- •Stage 1: Inclusion Criteria 1.Pediatric oncologists, pediatrician and PPC team members willing to participate 2.Parent of children or children with advanced cancer able to read and understand the appropriate language (English/Hindi) Stage 2 : Inclusion Criteria 1.Patient diagnosed with advanced malignancy.
- •2.Patients Referred to Pediatric Palliative Care (PPC) 3.Age up to 18 years of age.
- •4.Access to smartphone and internet.
排除标准
- •Stage 1 and 2 Exclusion Criteria 1.Not willing to participate.
结局指标
主要结局
Number of phone follow-ups or teleconsultations done by PPC team within 24/72 hours of the child filling the assessment form measured by descriptive statistics
时间窗: Within 24/72 hours of the child filling the assessment form
次要结局
- 3.To Monitor Emergency Contact call trends.(Bi-weekly for 2 months after app use begins.)
- 4.To track engagement with educational Materials.(Time point 1 : Immediately after the educational content is made available on the app.)
- 5.Number of Children who filled out the symptom assessment form.(End of 2 months after enrollment.)
- 1.Determine the number of Children who filled out the symptom assessment form measured by descriptive statistics.(Time Point 1: Initial assessment (when the first form is filled out).)
- 2.To analyze the number of times the symptom assessment forms have been filled.(Time Point 1: First form submission (baseline).)
研究者
Dr Shamali Poojary
Tata Memorial Hospital