Lapsus-tutkimushanke: Näkökulmia lapsiperheen potilaskokemukseen: Suomi

Patient experience of children, adolescents and their families has been studied only a little. Patient experience is a multidimensional and ambiguous concept and thus, it is challenging to define and measure. Lapsus research project investigates the perspectives of pediatric patients and their families on hospital visits, received care and services, and the everyday life with the illness. The project is funded by Tekes and is closely related to the design of the New Children’s Hospital. Lapsus is a joint project of two universities, Aalto University and Tampere University of Technology, and three children’s hospitals, Hospital District of Helsinki and Uusimaa, Oulu University Hospital and Turku University Hospital. The aim of the research project is to promote that the experiences of the families with pediatric patients are taken into consideration when constructing new hospitals and improving healthcare services. From the scientific standpoint, the key objectives include describing the dimensions of patient experience from the perspectives of pediatric patients and their families, developing methodology and instrumentation for monitoring patient experience and value creation, and linking patient experience data to continuous improvement. The project consists of several sub-studies: A) The dimensions of the patient experience and patient journeys of families with pediatric patients, B) Questionnaires for measuring the patient experience of parents, C) Video diary as an instrument for studying the patient experience of adolescents, D) Photo elicitation method for studying children’s patient experience, E) Ecosystem’s role in patient experience, F) Collecting and utilizing patient feedback in children’s hospital. The research methods developed in the Lapsus project together with the practical experiences gained from the studies, help to understand which issues are meaningful and valuable for the patients and how patient experience data can be collected and utilized to improve the services of children’s hospital.Lasten ja nuorten sekä heidän perheidensä potilaskokemusta on tutkittu varsin vähän. Potilaskokemus on käsitteenä moniulotteinen ja monimerkityksellinen, minkä johdosta sen määritteleminen ja mittaaminen on haastavaa. Lapsus-tutkimushankkeessa selvitetään lapsipotilaiden ja heidän perheidensä näkökulmia sairaalakäynneistä, saaduista hoidoista ja palveluista sekä sairastamisen arjesta. Kolmivuotinen tutkimushanke on Tekesin rahoittama ja liittyy kiinteästi Uuden lastensairaalan toiminnalliseen kehittämiseen. Hankkeessa ovat mukana Aalto-yliopisto ja Tampereen Teknillinen yliopisto sekä Helsingin, Turun ja Oulun yliopistollisten sairaalojen lastenklinikat. Hankkeen tavoitteena on tukea lapsipotilasperheiden kokemusten huomioimista uusia sairaaloita rakennettaessa ja sairaalojen toimintaa kehitettäessä. Tutkimuksellisesta näkökulmasta keskeisimpiä tavoitteita ovat potilaskokemuksen ulottuvuuksien kuvaaminen lapsipotilaiden ja heidän perheidensä näkökulmasta, potilaskokemuksen ja arvonmuodostuksen seurantaan liittyvän metodiikan ja mittaristojen kehittäminen, sekä potilaskokemustiedon linkittäminen osaksi jatkuvaa parantamista. Hankkeen toteutus koostuu osatutkimuksista, joiden aiheita ovat A) Lapsipotilasperheen potilaskokemuksen ulottuvuudet ja potilaspolut, B) Potilaskokemuskyselyt vanhempien kokemusten mittaamiseksi, C) Videopäiväkirja nuorten potilaskokemusten tutkimusvälineenä, D) Valokuvamenetelmä lasten potilaskokemusten tutkimisessa, E) Ekosysteemi rakentamassa potilaskokemusta, F) Potilaspalautteen keruu ja hyödyntäminen lastensairaalassa. Lapsus-tutkimushankkeessa kehitetyt menetelmät ja tutkimuksesta saadut kokemukset auttavat ymmärtämään, minkälaiset asiat koetaan tärkeiksi ja arvokkaiksi, ja miten kokemustietoa voidaan kerätä ja hyödyntää lastensairaalan toiminnan kehittämisessä

Definition and Validation of the American College of Rheumatology 2021 Juvenile Arthritis Disease Activity Score Cutoffs for Disease Activity States in Juvenile Idiopathic Arthritis

Export Date: 16 February 2023; Cited By: 10Peer reviewe

Parental experiences of the pediatric day surgery pathway and the needs for a digital gaming solution:qualitative study

Abstract Background: The parents of hospitalized children are often dissatisfied with waiting times, fasting, discharge criteria, postoperative pain relief, and postoperative guidance. Parents’ experiences help care providers to provide effective, family-centered care that responds to parents’ needs throughout the day surgery pathway. Objective: The objective of our study was to describe parental experiences of the pediatric day surgery pathway and the needs for a digital gaming solution in order to facilitate the digitalization of these pathways. Methods: This was a descriptive qualitative study. The participants (N=31) were parents whose children were admitted to the hospital for the day surgical treatments or magnetic resonance imaging. The data were collected through an unstructured, open-ended questionnaire; an inductive content analysis was conducted to analyze the qualitative data. Reporting of the study findings adheres to the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist. Results: Parental experiences of the children’s day surgery pathway included 3 main categories: (1) needs for parental guidance, (2) needs for support, and (3) child involved in his or her own pathway (eg, consideration of an individual child and preparation of child for treatment). The needs for a digital gaming solution were identified as 1 main category—the digital gaming solution for children and families to support care. This main category included 3 upper categories: (1) preparing children and families for the day surgery via the solution, (2) gamification in the solution, and (3) connecting people through the solution. Conclusions: Parents need guidance and support for their children’s day surgery care pathways. A digital gaming solution may be a relevant tool to support communication and to provide information on day surgeries. Families are ready for and are open to digital gaming solutions that provide support and guidance and engage children in the day surgery pathways

A gamified mobile health intervention for children in day surgery care:protocol for a randomized controlled trial

Abstract Aims: To describe a study protocol for a randomized controlled trial which will evaluate the effectiveness of a gamified mobile health intervention for children in whole day surgery care. Design: A study protocol for a two-arm randomized controlled trial. Methods: Participants will be randomly assigned to the intervention group (N = 62), in which patients receive routine care and play a mobile game designed for children or the control group (N = 62), in which patients receive routine care, including a mobile phone application that supports parents during the care path. The primary outcome is children’s pre-operative anxiety, while the secondary outcome measures included fear and postoperative pain, along with parental satisfaction and anxiety. Data collection started in August 2020. Results: The results of the ongoing randomized controlled trial will determine whether the developed gamified mobile health intervention can be recommended for hospital use, and whether it could be used to educate children about their surgical treatment to decrease anxiety