Background: Knowledge of living with childhood cancer, through the trajectory, is sparse.

Aim: The aim of this study was to follow young children’s health and functioning in everyday life through their cancer trajectory.

Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis.

Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children’s trajectories in relation to diagnosis but individual patterns were seen for each child.

Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.

PURPOSE: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.

METHOD: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.

RESULTS: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).

CONCLUSIONS: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.

The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff.

The body of research-based knowledge in paediatric caring science has been increasing leading to dramaticimprovements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', inrecently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. Thiswas done through a review of 137 published articles about paediatric oncology related to caring science in Sweden.The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone cominginto contact with the child. The cancer also causes distress related to all aspects of life including physical,psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease andtreatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and externalsupport, and the identity of the person reporting the data. Health promoting aspects frequently reported are: familytogetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotionalsupport, information and family participation in care. The hospital staff has to be aware of the psychosocial issuesexperienced by children with cancer and their families, and they have to acknowledge the value of formalinterventions, reporting benefits for children, families, and themselves.

Child Participation is defined by the International Classification of Functioning, Disability and Health forChildren and Youth (ICF-CY) as involvement in life situations but knowledge on children´s specific everydaylife situations (EDLs) is lacking. Professionals in early intervention services need a structured tool to identifyand assess child participation in everyday life situations. It should support children with disabilities indescribing what matters most for them in intervention planning. With the long term goal to create ICF-CY codesets, EDLs were identified by a systematic literature search for measures of performance or participation andby collecting professional opinions on EDL and participation. Information was linked to the ICF-CY andtriangulated with research exploring family opinions. Most items in measures were linked to moving around,play, and recreation and leisure. The six measures of performance and six of participation differed regardingcontent and content dependent on age group.Descriptions on EDLs from 297 professionals were linked to ICF-CY codes. Frequent linkages were Self-care,such as eating and hygiene; Major life areas, such as play and education; and Relationships, but also sleep. Byrelating EDLs directly to predefined ICF-CY categories in the ICF-CY component Activities and Participation,five EDLs across categories were identified based on responses from 207 professionals. These concernedsleep, communication, dressing, family relationships and play. Some differences emerged dependent onparticipants’ culture and on age group. A triangulation between professional and family opinions concerningEDL’s revealed relatively high agreement. As a final result, a set of approximately 12-15 everyday lifesituations is expected to be identified in this study to be used for development of code sets.

A set of everyday life situations for child participation that were identified by linking measure content andprofessional statements to ICF-CY and then compared with family statements will be presented.

Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.

Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.

Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.

Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.