Jens M. Nygren

Co-constructing child personas for health-promoting services with vulnerable children

The availability of health-promoting resources for young children diagnosed with cancer who are transitioning from intensive care to everyday life is limited. In the context of designing digital peer support services for children who are considered vulnerable due to clinical and age-related aspects, there are several challenges that put critical requirements on a user-centered design process. This paper reports on a new method for co-constructing child-personas that are tailored for developing health-promoting services where empirical data is restricted due to practical and ethical reasons. In particular, we are proposing to focus children design workshop sessions on salutogenesis, and complement this with a pathogenic perspective by interviewing healthcare professionals and parents. We also introduce the use of proxy personas, and redemption scenarios in the form of comicboards, both collaboratively constructed by children and designers through storytelling. By applying four progressive steps of data collection and analysis we arrive at authentic child-personas that can be used to design and develop health-promoting services for children in vulnerable life stages.

Redesign and Validation of Sisom, an Interactive Assessment and Communication Tool for Children With Cancer

Background Children with cancer undergo intensive and long treatment periods that expose them and their families to a number of difficult physical, mental, and social challenges. Empowering children by actively involving them in their care can help them to cope with these challenges. It can, however, be difficult for children to be involved and talk about their illness experiences in a “traditional” conversation with health care professionals, especially for younger children. Sisom (Norwegian acronym “Si det som det er” or “Tell it how it is”) is an interactive computer-based assessment and communication tool to give children (aged 6-12 years) with cancer a “voice” in their care. Because of technological advances and widespread use of mobile devices Sisom had to be redesigned to better meet the needs of children of today. Objective To redesign Sisom for use on mobile devices and to validate and adapt it for use in a Swedish population of children with cancer. Methods A user-experience design was used. Content adaptation included forward-backward translation by Swedish and Norwegian translators. Healthy children (n=5), children with experiences of cancer treatment (n=5) and their parents (n=5), and pediatric nurses (n=2) were then involved in culturally adapting Sisom to the Swedish context. The iterative low- and high-fidelity evaluation was supported by a think aloud method, semistructured interviews, and drawings to capture children’s views of Sisom. The redesign and evaluation continued until no further changes or improvements were identified by the participants or the researchers. Results Children, parents, and pediatric nurses offered many suggestions for improvements to the original version in terms of content, aesthetics, and usability of Sisom. The most significant change that emerged through user input was a modification that entailed not using problem-focused statements in the assessment items. The parents and pediatric nurses considered the revised assessment items to be general and less diagnosis specific. The evaluation of aesthetics resulted in brighter colors and more positive and exciting details in the animations. The evaluation of usability included improvements of the verbal instructions on how to navigate in Sisom 2, and also that the answers to assessment items in Sisom 2 should be saved to provide the children with the option to pause and to continue answering the remaining assessment items at a later stage. Conclusions Overall, this paper describes the process of using user-experience design with children in order to redesign and validate an interactive assessment and communication tool and how the outcomes of this process resulted in a new version, Sisom 2. All participants confirmed the usability and qualities of using the final version. Future research should be directed toward the implementation of Sisom 2 in clinical practice and to evaluate outcomes from individual and organizational levels.

Friendship Relations From the Perspective of Children With Experience of Cancer Treatment A Focus Group Study With a Salutogenic Approach

Friendships are significant to child development and health but diseases such as cancer can interrupt the contact with friends. The purpose of this study was to describe perceptions of friendship from the perspective of children undergoing cancer treatment, in order to build knowledge that can be used in a health promotion intervention for these children. Fifteen children between 8 and 12 years of age participated in focus groups, where a mixture of informative and creative techniques were used. The focus group discussions were analyzed using qualitative content analysis. The analysis resulted in three generic categories, “Common interests and experiences,” “Mutual empathic actions.” and “Mutual trust and understanding,” incorporating seven subcategories. Based on children’s descriptions from a salutogenic perspective, friendship emerged as An equal and mutual commitment that evolves over time and with interactions face-to-face and digitally, a child perspective on friendship should be central to the development of health promotion interventions designed to support friendship relations of children treated for cancer.

Self-rated mental health and socio-economic background: a study of adolescents in Sweden

BackgroundAdolescents’ mental health is a major public health issue. Previous research has shown that socio-economic factors contribute to the health status of adolescents. The present study explores the association between socio-economic status and self-rated mental health among adolescents.MethodsCross sectional data from the Halmstad Youth Quality of Life cohort was collected in a town in Sweden. In all, 948 adolescents (11–13 younger age group and 14–16 older age group) participated. Information on self-rated mental health was collected from the subscale Psychological functioning in the Minneapolis Manchester Quality of Life instrument. The items were summarized into a total score and dichotomized by the mean. Indicators measuring socio-economic status (SES) were collected in a questionnaire using the Family Affluence Scale (FAS) and additional factors regarding parents’ marital status and migration were added. Logistic models were used to analyze the data.ResultsGirls were more likely to rate their mental health below the mean compared to boys. With regard to FAS (high, medium, low), there was a significantly increased risk of self-rated mental health below the mean among younger boys in the medium FAS score OR; 2.68 (95% CI 1.35;5.33) and among older boys in the low FAS score OR; 2.37 (1.02;5.52) compared to boys in the high FAS score. No such trend was seen among girls. For younger girls there was a significant protective association between having parents born abroad and self-rated mental health below mean OR: 0.47 (0.24;0.91).ConclusionsA complex pattern of associations between SES and self-rated mental health, divergent between age and gender groups, was shown. The total FAS score was only associated with boys’ self-rated mental health in both age groups, whereas parents’ migratory status influenced only the girls’ self-rated mental health. Because of the different association for girls’ and boys’ self-rated mental health and SES, other factors than SES should also be considered when investigating and exploring the mental health of adolescents in affluent communities.

Building an experience framework for a digital peer support service for children surviving from cancer

Childhood cancer survivors adjust to the physical, mental, and social difficulties associated with their illness and treatment. This process can be facilitated by social support from peers. For children, this is often problematic due to geographical, clinical, and age-related limitations. This paper reports on a stakeholder assessment study that confirms the relevance of a digital peer support service for childhood cancer survivors. The analysis establishes where in the existing health care process the digital peer support service should be introduced, what actors play a key role in facilitating service onboarding and use, and characterizes desirable user experience qualities. The analysis also yields a collection of design challenges to be addressed in the development of the digital peer support service.

Psychometric evaluation of a Swedish version of Minneapolis-Manchester quality of life-youth form and adolescent form

BackgroundIt has become important to measure long-term effects and quality of life in survivors of childhood cancer. The Minneapolis- Manchester Quality of Life (MMQL) instrument has been proven to better capture the quality of life (QoL) perspective of health than other instruments. The instrument has age appropriate versions and is therefore favourable for longitudinal studies of QoL of children surviving from cancer. The aim of this study was to evaluate the psychometric properties of the Swedish version of MMQL-Youth Form and the Adolescent Form focusing on: 1) face and content validity 2) the internal consistency and 3) the test-retest reliability.MethodsThe sample consisted of 950 pupils (11–16 years old) from 7 schools in the western Sweden who completed the questionnaire. For the test-retest evaluation 230 respondents completed the questionnaire two weeks later.ResultsFace and content validity was supported and internal consistency was found to be acceptable for the total scale for both the MMQL-Youth Form (8–12 years of age) and the Adolescent Form (13–20 years of age). Test-retest reliability for the MMQL-Youth Form was moderate for 50% of the items and good for the remaining. For the MMQL-Adolescent Form the test-retest showed moderate or good agreement for 80% of the items and fair for 20%.ConclusionsThe result indicated that the Swedish version of the MMQLYouth Form and Adolescent Form was valid and reliable in a sample of healthy children in a Swedish context. It is recommended to test the instrument among diverse samples of children such as survivors of childhood cancer in order to validate its usefulness in research and clinical settings.

A Legal Framework to Support Development and Assessment of Digital Health Services

Background Digital health services empower people to track, manage, and improve their own health and quality of life while delivering a more personalized and precise health care, at a lower cost and with higher efficiency and availability. Essential for the use of digital health services is that the treatment of any personal data is compatible with the Patient Data Act, Personal Data Act, and other applicable privacy laws. Objective The aim of this study was to develop a framework for legal challenges to support designers in development and assessment of digital health services. Methods A purposive sampling, together with snowball recruitment, was used to identify stakeholders and information sources for organizing, extending, and prioritizing the different concepts, actors, and regulations in relation to digital health and health-promoting digital systems. The data were collected through structured interviewing and iteration, and 3 different cases were used for face validation of the framework. Results A framework for assessing the legal challenges in developing digital health services (Legal Challenges in Digital Health [LCDH] Framework) was created and consists of 6 key questions to be used to evaluate a digital health service according to current legislation. Conclusions Structured discussion about legal challenges in relation to health-promoting digital services can be enabled by a constructive framework to investigate, assess, and verify the digital service according to current legislation. The LCDH Framework developed in this study proposes such a framework and can be used in prospective evaluation of the relationship of a potential health-promoting digital service with the existing laws and regulations

Designing digital peer support for children: design patterns for social interaction

Children who have survived a lifethreatening disease like cancer benefit from social support from other children with a similar background. However, these children are often geographically dispersed and have little opportunity to meet. We investigate the design and development of Digital Peer Support Services (DPS), which may overcome this problem. Peer support is a kind of social support that brings together peers with similar experiences to help their adjustment to a disease. The aim of this paper is to develop design patterns for social interaction that can be implemented in a DPS for children surviving cancer. We conducted four sets of design workshops with children, from which emerged clusters relating to peer support and friendship that were broken down into triads. From these, six design patterns for social interaction were developed. The patterns delineate different aspects of social interaction for children and are illustrated with examples from DPS prototypes and concepts. The patterns are organized into a hierarchy, comprising the beginning of a design pattern language for social interaction for children. An essential aspect of the patterns is providing users with transparency and control of the extent to which their social interaction is public or private.

Social inequalities in self-rated health: A comparative cross-national study among 32,560 Nordic adolescents

Aims: We aimed to estimate the magnitude of socioeconomic inequality in self-rated health among Nordic adolescents (aged 11, 13 and 15 years) using the Family Affluence Scale (a composite measure of material assets) and perceived family wealth as indicators of socioeconomic status. Methods: Data were collected from the Health Behaviour in School-aged Children (HBSC) survey in 2013–2014. A sample of 32,560 adolescents from Denmark, Norway, Finland, Iceland, Greenland and Sweden was included in the study. Age-adjusted regression analyses were used to estimate associations between fair or poor self-rated health and the ridit scores for family affluence and perceived wealth. Results: The pooled relative index of inequality of 2.10 indicates that the risk of fair or poor health was about twice as high for young people with the lowest family affluence relative to those with the highest family affluence. The relative index of inequality for observed family affluence was highest in Denmark and lowest in Norway. For perceived family wealth, the pooled relative index of inequality of 3.99 indicates that the risk of fair or poor health was about four times as high for young people with the lowest perceived family wealth relative to those with the highest perceived family wealth. The relative index of inequality for perceived family wealth was highest in Iceland and lowest in Greenland. Conclusions: Social inequality in self-rated health among adolescents was found to be robust across subjective and objective indicators of family affluence in the Nordic welfare states.

Strategies of Adolescent Girls and Boys for Coping With School-Related Stress

Stress among adolescents in Western societies is becoming an issue of increasing concern of adolescent’s health. The aim of this study was to gain greater knowledge about how girls and boys perceive and cope with school-related stress. Participants were 14- to 15-year-old adolescents from a medium-sized municipality in southern Sweden. The data were collected from focus group interviews. The data were subjected to qualitative content analysis. The findings show that adolescents “prioritizing the future or the present by making choices, finding their own private sphere to relax, and recovering with family and friends.” There were gender differences in how these strategies were used. The findings could be used for initiating and planning health promotion interventions in school with focus on supporting girls’ and boys’ equal terms to cope with school-related stress in present and for the future and to give equal condition for future studies and opportunities in life.