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  • 1.
    Chaplin, John
    et al.
    Univ Gothenburg, Sahlgrenska Acad, Gothenburg, Sweden.
    Wartenberg, Constanze
    Qual Registry Ctr West Gotaland, Gothenburg, Sweden.
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Danielsson, Aina
    Univ Gothenburg, Sahlgrenska Acad, Gothenburg, Sweden.
    Initial validation of Swedish PROMIS (R)-25 in an orthopaedic population of children with acute severe knee injury2018In: Quality of Life Research, ISSN 0962-9343, E-ISSN 1573-2649, Vol. 27, no Suppl. 1, p. S122-S122, article id 2107Article in journal (Refereed)
    Abstract [en]

    Aims: The quality control of pediatric orthopaedic treatment options requires patient reported outcome measures that offer comparison to referenced populations. This study aimed to contribute to the validation of the Swedish translation of the norm-referenced PROMIS profile-25.

    Methods: Three questionnaires were administered one year after an acute knee injury via the Swedish paediatric orthopaedic registry (SPOQ). The questionnaires were: (1) The PROMIS Pediatric Profile-25, including the short-forms Mobility, Anxiety, Depression, Fatigue, Peer Relationships, Pain Interference and the single-item Pain Intensity, translated following the FACIT translation method, (2) the Knee Injury and Osteoarthritis Outcome scales for children (KOOS-Child, previously validated in Swedish) with the scales Pain, Symptoms, ADL, Sport/play and QoL (39 questions), and (3) a single VAS item, Overall Health Scale. Convergent validity was assessed by interscale correlations and a one-way ANOVA was used to identify differences between three injury categories.

    Results: Of 218 eligible patients, 104 (53 girls, 9-14 years, mean 13 years, 42 with patella luxation, 34 with anterior cruciate ligament rupture and 28 with other knee injuries), returned questionnaires. PROMIS and KOOS-Child had 1% incomplete answers. There was high positive correlation between all KOOS-Child scales, and KOOS-Child-Pain explained a large amount of variance in Symptoms (R2 = .610), ADL (R2 = .648), Sport/play (R2 = .462) and QoL (R2 = .423). An expected high correlation between KOOS-Child-pain and PROMIS-Pain-Interference was found (r = .581, p = \.001). The expected relationship between the PROMIS-Mobility scale and KOOS-Child-QoL (r = .815, p = \.001) was found, confirming that at this age QoL is associated with physical functioning. There were statistically significant differences between the three diagnosis categories for two PROMIS scales: PROMIS-mobility (F(2, 101) = 6.901, p = .002) and PROMIS-depression (F(2, 101) = 3.116, p = .049). The PROMIS subscales showed high Cronbach’s alpha (between 0.730 and 0.864).

    Conclusions: This study is the first in Sweden to investigate the psychometric properties of the PROMIS profile-25 and highlights its relationship to the criterion measure of KOOS-Child. PROMIS-25 uses self-report, ultra-brief measurement for screening, providing additional information that was not available using previous questionnaires. PROMIS-25 can contribute to quality control and lead to improved treatment decisions. Data collection is ongoing through the orthopaedic registry, which will provide further evidence of how PROMIS-25 performs in other paediatric orthopaedic conditions.

  • 2.
    Darcy, Laura
    et al.
    Institution of Health Science, University College Borås.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Simeonsson, Rune J
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Björk, Maria
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Health and functioning in the everyday lives of young children with cancer: documenting with the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).2015In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 41, no 3, p. 475-482Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).

    AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment.

    METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures.

    RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

    CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

  • 3.
    Osborne, Candice L.
    et al.
    Department of Physical Medicine and Rehabilitation, University of Texas Southwestern Medical Center, Dallas, USA .
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Graham, James E.
    Division of Rehabilitation Sciences, University of Texas Medical Branch, Galveston, USA .
    Meyer, Walter J., III
    Shriners Hospital for Children, Shriners Burn Hospital, Galveston, USA.
    Simeonsson, Rune J.
    School of Education & FPG Child Development Institute, University of North Carolina, Chapel Hill, USA.
    Suman, Oscar E.
    Shriners Hospital for Children, Shriners Burn Hospital, Galveston, USA .
    Ottenbacher, Kenneth J.
    Division of Rehabilitation Sciences, University of Texas Medical Branch, Galveston, USA.
    The Burn Model Systems outcome measures: a content analysis using the International Classification of Functioning, Disability, and Health2017In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 39, no 25, p. 2584-2593Article in journal (Refereed)
    Abstract [en]

    Background: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time.

    Methods: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined.

    Results: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective.

    Conclusion: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery.Implications for RehabilitationA better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed.This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

  • 4.
    Osborne, Candice L.
    et al.
    Department of Physical Medicine and Rehabilitation, University of Texas Southwestern Medical Center, Dallas, Texas, USA.
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Graham, James E.
    Division of Rehabilitation Sciences, University of Texas Medical Branch, Galveston, Texas, USA.
    Meyer, Walter J.
    Shriners Hospital for Children, Shriners Burn Hospital, Galveston, Texas, USA.
    Simeonsson, Rune J.
    Jönköping University, School of Education and Communication. FPG Child Development Institute, University of North Carolina, Chapel Hill, North Carolina, USA.
    Suman, Oscar E.
    Shriners Hospital for Children, Shriners Burn Hospital, Galveston, Texas, USA.
    Ottenbacher, Kenneth J.
    Division of Rehabilitation Sciences, University of Texas Medical Branch, Galveston, Texas, USA.
    The multicenter benchmarking study of burn injury: A content analysis of the outcome measures using the international classification of functioning, disability and health2016In: Burns, ISSN 0305-4179, E-ISSN 1879-1409, Vol. 42, no 7, p. 1396-1403Article in journal (Refereed)
    Abstract [en]

    Objective: To link, classify and describe the content of the Multicenter Benchmarking Study Burn Outcomes Questionnaires (BOQ) using the International Classification of Functioning, Disability and Health (ICF) to determine if the information garnered provides researchers with the data necessary to develop a comprehensive understanding of life after burns.

    Methods: Two ICF linking experts used a standardized linking technique endorsed by the World Health Organization to link all BOQ concepts to the ICF. Linking results were analyzed to determine the comprehensiveness of each of the five measures.

    Results: The activities and participation component was most frequently addressed followed by the body functions component. Environmental factors are not extensively covered and body structures are not addressed. ICF chapter and category distribution were skewed and varied between assessments. The majority of BOQ items are of the health status perspective.

    Conclusion: BOQ item composition could be improved with a more even distribution of pertinent ICF topics. Assessment authors may consider addressing the impact of environmental factors on participation. Including body structure concepts would allow investigators to track structural deformation and/or developmental delay. Generally speaking, this data should not be used to examine quality of life outcomes.

  • 5.
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Using health-related quality of life instruments for children with long-term conditions: On the basis of a national quality registry system2016Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    Introduction: There has been a continuous development of new technologies in healthcare that are derived from national quality registries. However, this innovation needs to be translated into the workflow of healthcare delivery, to enable children with long-term conditions to get the best support possible to manage their health during everyday life. Since children living with long-term conditions experience different interference levels in their lives, healthcare professionals need to assess the impact of care on children’s day-to-day lives, as a complement to biomedical assessments.

    Aim: The overall aim of this thesis was to explore and describe the use of instruments about health-related quality of life (HRQOL) in outpatient care for children with long-term conditions on the basis of a national quality registry system.

    Methods: The research was conducted by using comparative, cross-sectional and explorative designs and data collection was performed by using different methods. The questionnaire DISABKIDS Chronic Generic Measure -37 was used as well as semi-structured interviews and video-recordings from consultations. Altogether, 156 children (8–18 years) and nine healthcare professionals participated in the studies. Children with Type 1 Diabetes (T1D) (n 131) answered the questionnaire DISABKIDS and children with rheumatic diseases, kidney diseases and T1D (n 25) were interviewed after their consultation at the outpatient clinic after the web-DISABKIDS had been used. In total, nine healthcare professionals used the HRQOL instrument as an assessment tool during the encounters which was video-recorded (n 21). Quantitative deductive content analysis was used to describe content in different HRQOL instruments. Statistical inference was used to analyse results from DISABKIDS and qualitative content analysis was used to analyse the interviews and video-recordings.

    Results: The findings showed that based on a biopsychosocial perspective, both generic and disease-specific instruments should be used to gain a comprehensive evaluation of the child’s HRQOL. The DISABKIDS instrument is applicable when describing different aspects of health concerning children with T1D. When DISABKIDS was used in the encounters, children expressed positive experiences about sharing their results with the healthcare professional. It was discovered that different approaches led to different outcomes for the child when the healthcare professionals were using DISABKIDS during the encounter. When an instructing approach is used, the child’s ability to learn more about their health and how to improve their health is limited. When an inviting or engaging approach is used by the professional, the child may become more involved during the conversations.

    Conclusions: It could be argued that instruments of HRQOL could be used as a complement to biomedical variables, to promote a biopsychosocial perspective on the child’s health. According to the children in this thesis, feedback on their results after answering to web-DISABKIDS is important, which implies that healthcare professionals need to prioritize time for discussions about results from HRQOL instruments in the encounters. If healthcare professionals involve the child in the discussion of the results of the HRQOL, misinterpreted answers could be corrected during the conversation. Concurrently, this claims that healthcare professionals invite and engage the child.

  • 6.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare).
    Batalden, Paul B.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Dartmouth Institute, Geisel School of Medicine at Dartmouth, USA.
    Fritzell, Peter
    Futurum Academy for Health and Care, Region Jönköping County, Jönköping, Sweden.
    Borst, Sanna
    Department of Radiology at the Region County of Jönköping, Sweden.
    Hedberg, Berith
    Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare). Futurum, Academy for Health and Care, Region Jönköping County, Jönköping, Sweden.
    Exploring the meaning of coproduction as described by patients after spinal surgery interventions2019In: Open Nursing Journal, ISSN 1874-4346, E-ISSN 1874-4346, Vol. 13, p. 85-91Article in journal (Refereed)
    Abstract [en]

    Background:

    In the procedures of surgical pathways it is important to create opportunities for developing active forms of engagement and extending the patients’ health maintenance knowledge, which is essential in nursing. One way is to understand more about the concept of coproduction.

    Objective:

    The purpose was to use experiences from spinal surgery patients’ narratives to explore the conceptual model of healthcare service coproduction.

    Method:

    A prospective qualitative explorative approach was performed and analyzed in two phases with inductive and deductive content analysis of data retrieved from five focus group interviews of 25 patients with experiences from spinal surgery interventions.

    Result:

    The findings indicate that mutual trust and respect, as well as guidance given in dialogue, are two important domains. An illustration of how to apply the conceptual model of healthcare service coproduction was revealed in the descriptions of the three core concepts co-planning, co-execution and civil discourse.

    Conclusion:

    This study highlights what is needed to reach coproduction in healthcare services concerning patients with spinal disorders. Development of care plans that focuses on co-planning and co-execution is recommended which are structured and customizable for each patient situation to make coproduction to occur.

  • 7.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science.
    Björkander, Janne
    Academy for Health and Care Futurum Jönköping Sweden.
    Fust, Ramona
    Department of Infectious Diseases University Hospital of Linköping Linköping Sweden.
    Discovering aspects of health-experiences of a web-based health diary among adults with primary immunodeficiency2018In: Nursing Open, E-ISSN 2054-1058, Vol. 5, no 4, p. 642-648Article in journal (Refereed)
    Abstract [en]

    Aim: Advances in technology generate new opportunities to develop e-health tools to help individuals in self-management by assessing symptoms of illness and its relation to treatments. Self-management is central when living with primary immunodeficiency diseases. The aim was to explore the experiences of people living with primary immunodeficiency, who used a pilot version of the web-based health diary.

    Design: Explorative design.

    Methods: In total, 16 participants (median age 59) attended one of three focus groups. Inductive content analysis was used.

    Results: The participants could be encouraged to discover aspects of their health by contributing to documentation which could support the health concept. A greater understanding about their own health and communicating with healthcare professionals during encounters was expressed. The web-based health diary is a helpful tool to discover aspects of health that affects the individuals’ life situation and assists the self-management of a long-term condition such as immunodeficiency.

  • 8.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Fust, Ramona
    Department of Infection Diseases, University Hospital of Linköping, Linköping, Sweden.
    Hagstedt, Carina
    Department of Infection Diseases, Region Hospital of Ryhov, Jönköping, Sweden.
    Wågström, Per
    Department of Infection Diseases, Region Hospital of Ryhov, Jönköping, Sweden.
    Nilsdotter-Augustinsson, Åsa
    Department of Infectious Diseases, Department of Clinical and Experimental Medicine, Linköping University, Norrköping, Sweden.
    "Experiences of the burden of treatment" - Patient reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 23-24, p. 4270-4278Article in journal (Refereed)
    Abstract [en]

    Aims and objectives: To evaluate patient-reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency.

    Background: Decreased levels of circulating antibodies (humoral immunodeficiency) are often associated with higher infection rates which cause problems in daily living, for example, symptoms of severe and recurrent bacterial infections that may cause chronic lung diseases. For some diagnoses, treatment with immunoglobulin becomes critical and lifelong. The acceptability of administration forms is important to achieve adherence to treatment and to increase quality of life for these patients.

    Design: Convergent mixed-method approach.

    Methods: A structured telephone interview with nine questions evaluated on a score scale about treatment experience, satisfaction and ancillary supplies was used, followed by open-ended questions for each item.

    Results: Prohibiting factors were revealed, exemplified by problems due to technical issues and ancillary supply issues. Promoting factors were shown by high a satisfaction according to the score-scale when combining treatment with daily life as well as increased well-being. Facilitated subcutaneous immunoglobulin treatment led to fewer treatment sessions, with a time-saving aspect also described by high scores in the item concerning longer treatment interval.

    Conclusions: The opportunity to be given the best possible treatment plan adjusted for each patient's situation is central. Healthcare professionals should discuss the different aspects that can promote and inhibit the outcomes of treatment.

    Relevance to clinical practice: The results can help professionals to understand different factors that may impinge on the patients' everyday life when they are forced into a lifelong treatment regimen. This knowledge is also important for nurses who have a responsibility to promote health concerning patients with long-term conditions in general. 

  • 9.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Hanberger, Lena
    Department of Medical and Health Sciences and Division of Nursing, Faculty of Medicine and Health Sciences, Linköping University, Sweden.
    Samulesson, Ulf
    Department of Medicine and Health Sciences, Linköping University, Sweden.
    Åkesson, Karin
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Futurum, Academy for Health and Care, Sweden.
    Impact of type 1 diabetes on health-related quality of life among 8–18-year-old children2016In: Comprehensive Child and Adolescent Nursing, ISSN 2469-4193, Vol. 39, no 4, p. 245-255Article in journal (Refereed)
    Abstract [en]

    Measuring the health-related quality of life (HRQOL) is one way to understand an individual’s perspective on health, and, more specifically, how type 1 diabetes (T1D) affects a child’s everyday life. Early detection of poor HRQOL is considered a crucial factor for identifying children who are at risk of psychosocial problems. The aim of this study was to describe the differences in the HRQOL of children with T1D according to age, gender, and metabolic control (HbA1c). Cross-sectional data were collected from children with T1D using the DISABKIDS Chronic Generic Measure-37 (DCGM-37) and the diabetes specific module (DM-10). Non-parametric tests were used to investigate differences. There were differences between girls and boys, and girls reported lower HRQOL than boys (HRQOL total score: mean 74 and 67 respectively; p = .005). Adolescents described more worries and fears about the future compared with younger children. Children with poor metabolic control reported a lower HRQOL than those with better metabolic control (HRQOL total score:mean 68 and 76 respectively; p = .006), but the social dimensions were not affected. The findings of the present study elucidate the importance for paediatric nurses to explore potential problems in children with T1D and use this knowledge in clinical practice. Assessment of the HRQOL can provide the patient’s perspective on the quality of diabetes care. The HRQOL is correlated with HbA1c, gender, and age, and the HRQOL as well as HbA1c levels should be regularly assessed to establish a comprehensive care for children with T1D.

  • 10.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Samuelsson, Ulf
    Linköpings universitet.
    Hanberger, Lena
    Linköpings universitet.
    Akesson, Karin
    Ryhov County Hospital.
    Use of the national quality registry to monitor health-related quality of life of children with type 1 diabetes: A pilot study2015In: Journal of Child Health Care, ISSN 1367-4935, E-ISSN 1741-2889, Vol. 19, no 1, p. 30-42Article in journal (Refereed)
    Abstract [en]

    The management of diabetes is complicated, as treatment affects the everyday life of both children and their families. To enable optimal care for children with type 1 diabetes, it is important to highlight health-related quality of life (HrQoL) as well as medical outcomes to detect psychological problems that otherwise could be missed. The aim was to study HrQoL in children and adolescents with type 1 diabetes dependent on gender, age and co-morbidity and to study the consistency between children’s self-reporting and parents’ proxy reporting. The cross-sectional data were collected using the questionnaire DISABKIDS Chronic Generic Measure and the DISABKIDS diabetes module. Parents in the proxy report perceived their children’s HrQoL to be lower than children themselves. Boys reported their HrQoL to be better than girls. Results show that living with an additional disease has an impact on the HrQoL, which is an important factor to consider in the quality registry. Assessing HrQoL on a routine basis may facilitate detection and discussion of HrQoL-related questions in the national quality registry.

  • 11.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Åkesson, Karin
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Children's experiences about a structured assessment of health-related quality of life during a patient encounter2016In: Child Care Health and Development, ISSN 0305-1862, E-ISSN 1365-2214, Vol. 42, no 3, p. 424-432Article in journal (Refereed)
    Abstract [en]

    Background

    It has been stated that care for children with chronic health conditions tends to focus on condition-specific issues rather than how these children experience their health and everyday life functioning.

    Aim

    The aim of this study was to explore children's experiences about a structured assessment of health-related quality of life applied during a patient encounter.

    Methods

    Prior to the start of the study, a clinical intervention based on the questionnaire DISABKIDS Chronic Generic Measure (DCGM-37) was performed. A qualitative explorative design was chosen, and 25 children between 10–17 years of age were interviewed after the consultation at four different paediatric outpatient clinics. Data were analysed according to qualitative content analysis.

    Results

    The results were twofold: children experienced that the assessment was providing them with insights about their health, which motivated them to make lifestyle changes. When outcomes were discussed and requested, the children felt encouraged.

    Conclusions

    The use of an assessment of health-related quality of life may promote insights about health and encourage children with chronic health conditions to discuss their outcomes with healthcare professionals.

  • 12.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Åkesson, Karin
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Golsäter, Marie
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    To promote child involvement – healthcare professionals' use of a health-related quality of life assessment tool during paediatric encounters2017In: European Journal for Person Centered Healthcare, ISSN 2052-5648, E-ISSN 2052-5656, Vol. 5, no 1Article in journal (Refereed)
    Abstract [en]

    Background: Children and healthcare professionals should be provided with easy-to-use tools which could lead to actionable results.

    Objectives: There is increasing interest in the use of patient reported outcomes to aid management of individual care; therefore, the use of health-related qualityof life (HRQOL) assessments during consultations need to be studied. The aim of this study was to explore how healthcare professionals use a HRQOL assessment tool during paediatric encounters.

    Design: A descriptive, explorative design with a qualitative approach based on video recordings was chosen.

    Methods: Twenty-one video recordings, from nine different healthcare professionals’ consultations where an assessment tool of HRQOL were used were analysed by content analysis.

    Results: The healthcare professionals were using different strategies and when they combined these strategies three approaches emerged. The instructing approach was characterized by healthcare professionals giving a summary of the results, leading to children becoming passive bystanders in the encounter. Based on an inviting approach, the children’s perceptions of their situation were requested while the items were explored. This resulted in involving the children in the conversations. In the engaging approach, an open dialogue and a common interpretation were sought to guide further care which was interpreted as children becoming actively involved.

    Conclusions: The child’s involvement could be facilitated depending on which approach is being used. When an inviting and engaging approach is used, actions in a non-linear set of interactions is co-produced with the child.

    Relevance to practice: The use of an HRQOL assessment tool change the management during consultations and could promote child involvement dependent on which approach the healthcare professionals are using.

  • 13.
    Petersson, Christina
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Simeonsson, Rune J.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Enskär, Karin
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Huus, Karina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)2013In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 11, no 1, p. 1-10, article id 75Article in journal (Refereed)
    Abstract [en]

    Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

  • 14.
    Rejler, Martin
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Höglandssjukhuset, Eksjö, Sweden .
    Fabisch, Anna
    Qulturum, Region Jönköpings län, Sweden .
    Petersson, Christina
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Nursing Science. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare).
    Henriks, Göran
    Qulturum, Region Jönköpings län, Sweden.
    Andersson-Gäre, Boel
    Jönköping University, School of Health and Welfare, HHJ. IMPROVE (Improvement, innovation, and leadership in health and welfare). Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.
    Ersätt kvalitetsregistren med förbättringsnätverk: Registerbaserade förbättringsnätverk bör ersätta nuvarande nationella kvalitetsregister2017In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 114, no 17, p. 760-762Article in journal (Other (popular science, discussion, etc.))
1 - 14 of 14
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