Designing an educational interactive eBook for newly diagnosed children with type 1 diabetes: Mapping a new design space

peer-reviewedIn this paper, we report on a project investigating the role of Interactive Technologies (IT) and participatory design methods in supporting self-care practices in paediatric Type 1 Diabetes Mellitus (T1DM). In particular, we discuss the design of an educational interactive eBook to support newly diagnosed children and their families in learning about effective management outside the clinical–medical consultation. We use our design as an illustration of a potential new design space for type 1 diabetes learning resources. We map this space by identifying a series of oppositions that helps us to explore new design assumptions that could better support the education of newly diagnosed children and families: learning alone vs learning together, medical vs patient perspective, prescriptive language vs narratives and social stories, and static vs interactive educational contents. Through a discussion of these shifting of points of focus in the design of educational products in T1DM, we hope to open up new opportunities to rethink the design of tools to support the education of paediatric diabetes (and possibly of other chronic diseases and conditions)

Pediatric Nurses\u27 Perspectives on Medication Teaching in a Children\u27s Hospital

Purpose To explore inpatient pediatric nurses\u27 current experiences and perspectives on medication teaching. Design and Methods A descriptive qualitative study was conducted at a Midwest pediatric hospital. Using convenience sampling, 26 nurses participated in six focus groups. Data were analyzed in an iterative group coding process. Results Three themes emerged. 1) Medication teaching is an opportunity. 2) Medication teaching is challenging. Nurses experienced structural and process challenges to deliver medication teaching. Structural challenges included the physical hospital environment, electronic health record, and institutional discharge workflow while process challenges included knowledge, relationships and interactions with caregivers, and available resources. 3) Medication teaching is amenable to improvement. Conclusion Effective medication teaching with caregivers is critical to ensure safe, quality care for children after discharge. Nursing teaching practices have not changed, despite advances in technology and major changes in hospital care. Nurses face many challenges to conduct effective medication teaching. Improving current teaching practices is imperative in order to provide the best and safest care. Practice Implications This study generated knowledge regarding pediatric nurses\u27 teaching practices, values and beliefs that influence teaching, barriers, and ideas for how to improve medication teaching. Results will guide the development of targeted interventions to promote successful medication teaching practices

How do people with asthma use Internet sites containing patient experiences?

Objective: To understand how people engage with websites containing patient authored accounts of health and illness. To examine how people with asthma navigate their way through this information and make use of the patient experiences they find. Methods: Twenty-nine patients with diagnoses ranging from mild to severe asthma were shown a range of websites, some containing patient experiences, and selected two sites to explore further. They discussed their choices in a series of focus groups and interviews. Results: Participants were influenced initially by the design quality of the sites and were subsequently drawn to websites containing patient experiences but only when contributions were from similar people offering ‘relevant stories’. The experiences reminded participants of the serious nature of the disease, provided new insights into the condition and an opportunity to reflect upon the role of the disease in their lives. Conclusion: For people with asthma websites containing other patients’ personal experiences can serve as a useful information resource, refresh their knowledge and ensure their health behaviours are appropriate and up-to-date. Practice Implications: Health professionals should consider referring asthma patients to appropriate websites whilst being aware that online experiences are most engaging when they resonate with the participants own situation

Supporting Collaborative Health Tracking in the Hospital: Patients' Perspectives

The hospital setting creates a high-stakes environment where patients' lives depend on accurate tracking of health data. Despite recent work emphasizing the importance of patients' engagement in their own health care, less is known about how patients track their health and care in the hospital. Through interviews and design probes, we investigated hospitalized patients' tracking activity and analyzed our results using the stage-based personal informatics model. We used this model to understand how to support the tracking needs of hospitalized patients at each stage. In this paper, we discuss hospitalized patients' needs for collaboratively tracking their health with their care team. We suggest future extensions of the stage-based model to accommodate collaborative tracking situations, such as hospitals, where data is collected, analyzed, and acted on by multiple people. Our findings uncover new directions for HCI research and highlight ways to support patients in tracking their care and improving patient safety

Potilaskokemus kuvina: Valokuvausmenetelmä lasten kokemusten tutkimiseksi Lastensairaalassa

Healthcare organizations have recently started to collect information about the experiences of their patients. The current feedback methods have been developed mainly for adult participants and the organizations are lacking appropriate instruments for collecting perceptions of children. Also, children’s patient experience has yet received little attention in the academic literature. This thesis focused on exploring how children’s patient experience can be studied at the Children’s Hospital. The study was conducted as a part of LAPSUS research project. The research questions were the following: (1) Which research approaches and techniques are applicable for studying 6- to 10-year-old children’s patient experience? (2) Based on the empirical study, how suitable is the photo elicitation technique for studying children’s patient experience? Four potential research techniques were identified in the literature study and evaluated with medical experts. For the empirical study, photo elicitation technique was chosen and tested in two different units of Children’s Hospital in Helsinki. Eight child patients participated in the study. The data consisted of qualitative photo elicitation interviews and 64 photographs portraying children’s positive and negative experiences during hospitalization. In the analysis, the data were thematically categorized and additionally, feedback from the participants and hospital personnel were scrutinized. The results of the study demonstrate the importance of engaging children in studies pertaining to their care. Children have unique experiences which can be utilized in improving the healthcare service. The positive photographs indicated that children value toys and other entertainment, good hospital facilities, friendly nursing staff and painless procedures. Respectively, the negative photographs emphasized the unpleasant nature of invasive operations and the hospital environment. This thesis provided Children’s Hospital a novel way to access patients’ perceptions in an age-appropriate manner. The photo elicitation technique will help the hospital identify gaps in the service and improve the child-friendliness of the care. Utilizing photography is applicable and fun both from the perspectives of patients and hospital personnel. Future work is needed to fit the photographing technique to the routines in the hospital and to make necessary adjustments to the instrument.Terveyspalveluita tuottavat organisaatiot ovat alkaneet kerätä tietoa potilaiden kokemuksista palveluidensa parantamiseksi. Nykyiset potilastyytyväisyyskyselyt keskittyvät palautteen keräämiseen aikuisilta, mutta organisaatioilta puuttuvat instrumentit lapsipotilaiden kokemusten selvittämiseen. Lisäksi akateemisesta kirjallisuudesta löytyy vain vähän tietoa lasten potilaskokemuksesta ja sen tutkimisesta. Tässä diplomityössä selvitettiin miten Lastensairaala voi kerätä tietoa lasten potilaskokemuksesta. Työ toteutettiin osana LAPSUS–tutkimushanketta. Tutkimuskysymykset olivat: (1) Mitkä tutkimusmenetelmät soveltuvat kirjallisuuden mukaan 6–10-vuotiaiden lasten potilaskokemuksen tutkimiseen? (2) Kuinka hyvin valokuvamenetelmä soveltuu empiirisen tiedon perusteella lasten potilaskokemuksen tutkimiseen? Kirjallisuudesta löydettiin neljä potentiaalista tutkimusmenetelmää, joista asiantuntijahaastatteluiden perusteella valokuvausmenetelmä valittiin empiirisen tutkimuksen kohteeksi. Tutkimukseen osallistui kahdeksan lasta Helsingin Lastensairaalan kahdesta yksiköstä. Aineisto koostui laadullisista valokuvahaastatteluista sekä 64 valokuvasta, jotka kuvasivat lasten positiivisia ja negatiivisia kokemuksia sairaalassa. Tulokset analysoitiin teemoittelua hyödyntäen. Tutkimuksen tulokset vahvistavat käsitystä lasten osallistamisen merkityksestä. Lapsilla on ainutlaatuisia kokemuksia, joita voidaan hyödyntää organisaation toiminnan kehittämisessä. Lasten positiivisissa kokemuksissa korostuivat lelut ja muut viihdykkeet, tilat ja palvelut, ystävällinen hoitohenkilökunta sekä kivuttomat hoitotoimenpiteet. Vastaavasti negatiivisissa kokemuksissa painottuivat etenkin invasiiviset operaatiot sekä sairaalaympäristön tylsyys. Valokuvamenetelmä tarjoaa Lastensairaalalle uudenlaisen ja lapsilähtöisen tavan kerätä palautetta potilailta. Menetelmän avulla voidaan tunnistaa palvelun ongelmakohtia ja kehittää sairaalan toimintaa lapsiystävällisemmäksi. Jatkotutkimuksen aiheita ovat valokuvausmenetelmän käyttöönoton suunnittelu sekä tutkimusinstrumentin jatkokehitys

Compassion as a Tool to Enhance Communication between nurses and children in the oncology pediatric ward.

This major research project (MRP) presents a communication tool designed through an experience-based co-design (EBCD) method that aims to increase empathy and establish an emotional connection between pediatric oncology patients and the nurses that care for them. We ask: What value can the personal experiences of participants bring to the design process of a tool intended for their use? We explore this question by first conducting a series of interviews with 4 pediatric oncology patients and 9 nurses of the pediatric oncology ward, focused on identifying and understanding the emotions they experience during the different procedures that take place during the patients’ stay in the hospital. The data collected during these interviews was used to create emotional maps that informed the design of a mobile application, which allows users to collaborate by recording customized audios stating their feelings, and agreements between both parties, which they can later listen to during painful and emotionally tolling procedures. Participants then tested the prototype in a series of workshops where their feedback was collected and integrated into a second and final prototype. Our results show that 1) pediatric oncology patients and the nurses that care for them feel an emotional distance between each other, 2) both parties are open to and enthusiastic about using a tool to work together and empathize with one another, and 3) an EBCD method is helpful to understand and address abstract emotional conditions

AN INVESTIGATION OF THE IMPACT OF COVID-19 INFECTION CONTROL ON VISUAL ART INSTALLATIONS IN HOSPITALS WITH PEDIATRIC PATIENTS

This study investigated the impact of COVID-19 infection control on visual artwork in pediatric hospitals and hospitals caring for pediatric patients. The study involved five hospitals in three southern America states and addressed visual artwork and art installations. The researcher administered an internet-based survey to participants in job functions related to hospital administration, environmental services, and project management across the facilities and received participation from 18 respondents. Additionally, telephone interviews were conducted with three participants with the job titles project manager/analyst, child-life specialist, and environmental services director. Survey questions were designed to examine visual art programs in selected children’s hospitals and identify artwork utilized, as well as the cleaning and maintenance practices of the artwork to limit the spread of infection. Data gathered revealed hospital staff participants’ knowledge regarding the artwork design and materials, artwork purpose, cleaning standards, and effective cleaning practices for artwork to help better manage art programs for pediatric patients in a safe and effective manner

Sex trafficking in Nepal: A qualitative study of process and context. Abstract.

Thousands of Nepalese girls are trafficked to India and other neighbouring countries every year, primarily for sex work and the majority return to Nepal after spending a years in sex trade. The sub‐group of Nepalese girls who become involved in sex work via trafficking are the focus of this paper. The aim of this study was to increase understanding regarding the context of sex trafficking, the methods and means of trafficking, living conditions in brothels and survival strategies among trafficked girls. We conducted 33 in‐depth interviews in early 2013 with returned trafficking survivors (n=14) and policy‐makers, people working in trafficking related NGOs/INGOs (n=19) in Nepal. All 14 trafficking survivors were recruited in Nepal through the NGO working on trafficking field. The young girls trafficked from Nepal to India in this study were typically unmarried, illiterate and very young (8 to 14 years at the time of trafficking). The key methods of trafficking were false marriage, fake job offer, and abduction. Among the 14 respondents, some had spent one month and others nearly 5 years in Indian brothels. Respondents were either rescued, escaped or released by brothel owners. Four out of 14 were HIV positive. Most policy makers mentioned that poverty, unemployment and illiteracy are the causes behind the trafficking of young girls. The anti‐trafficking interventions need to be considered at a) community level before movement has begun; b) urban centres which are both source and transitory centres for trafficking; c) trafficking level when girls are highly mobile and when they are in brothels; and d) return from trafficking as girls to m ove back into the community