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Ndagijimana, A., Nduwayezu, G., Kagoyire, C., Elfving, K., Umubyeyi, A., Mansourian, A. & Lind, T. (2024). Childhood stunting is highly clustered in northern province of Rwanda: a spatial analysis of a population-based study. Heliyon, 10(2), Article ID e24922.
Open this publication in new window or tab >>Childhood stunting is highly clustered in northern province of Rwanda: a spatial analysis of a population-based study
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2024 (English)In: Heliyon, E-ISSN 2405-8440, Vol. 10, no 2, article id e24922Article in journal (Refereed) Published
Abstract [en]

Background: In Northern Province, Rwanda, stunting is common among children aged under 5 years. However, previous studies on spatial analysis of childhood stunting in Rwanda did not assess its randomness and clustering, and none were conducted in Northern Province. We conducted a spatial-pattern analysis of childhood undernutrition to identify stunting clusters and hotspots for targeted interventions in Northern Province.

Methods: Using a household population-based questionnaire survey of the characteristics and causes of undernutrition in households with biological mothers of children aged 1–36 months, we collected anthropometric measurements of the children and their mothers and captured the coordinates of the households. Descriptive statistics were computed for the sociodemographic characteristics and anthropometric measurements. Spatial patterns of childhood stunting were determined using global and local Moran's I and Getis-Ord Gi* statistics, and the corresponding maps were produced.

Results: The z-scores of the three anthropometric measurements were normally distributed, but the z-scores of height-for-age were generally lower than those of weight-for-age and weight-for-height, prompting us to focus on height-for-age for the spatial analysis. The estimated incidence of stunting among 601 children aged 1–36 months was 27.1 %. The sample points were interpolated to the administrative level of the sector. The global Moran's I was positive and significant (Moran's I = 0.403, p < 0.001, z-score = 7.813), indicating clustering of childhood stunting across different sectors of Northern Province. The local Moran's I and hotspot analysis based on the Getis-Ord Gi* statistic showed statistically significant hotspots, which were strongest within Musanze district, followed by Gakenke and Gicumbi districts.

Conclusion: Childhood stunting in Northern Province showed statistically significant hotspots in Musanze, Gakenke, and Gicumbi districts. Factors associated with such clusters and hotspots should be assessed to identify possible geographically targeted interventions.

Place, publisher, year, edition, pages
Elsevier, 2024
Keywords
Child, LMICs, Rwanda, Spatial, Stunting, Sub-saharan africa, Undernutrition
National Category
Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-220325 (URN)10.1016/j.heliyon.2024.e24922 (DOI)2-s2.0-85183022200 (Scopus ID)
Funder
Sida - Swedish International Development Cooperation Agency
Available from: 2024-02-12 Created: 2024-02-12 Last updated: 2024-02-12Bibliographically approved
Johansson, U., Öhlund, I., Lindberg, L., Hernell, O., Lönnerdal, B., Venables, M. & Lind, T. (2023). A randomized, controlled trial of a Nordic, protein-reduced complementary diet in infants: effects on body composition, growth, biomarkers, and dietary intake at 12 and 18 months. American Journal of Clinical Nutrition, 117(6), 1219-1231
Open this publication in new window or tab >>A randomized, controlled trial of a Nordic, protein-reduced complementary diet in infants: effects on body composition, growth, biomarkers, and dietary intake at 12 and 18 months
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2023 (English)In: American Journal of Clinical Nutrition, ISSN 0002-9165, E-ISSN 1938-3207, Vol. 117, no 6, p. 1219-1231Article in journal (Refereed) Published
Abstract [en]

Background: High intake of protein and low intake of plant-based foods during complementary feeding can contribute to negative long-term health effects.

Objectives: To investigate the effects of a protein-reduced, Nordic complementary diet on body composition, growth, biomarkers, and dietary intake, compared with current Swedish dietary recommendations for infants at 12 and 18 mo.

Methods: Healthy, term infants (n = 250) were randomly allocated to either a Nordic group (NG) or a conventional group (CG). From 4 to 6 mo, NG participants received repeated exposures of Nordic taste portions. From 6 to 18 mo, NG was supplied with Nordic homemade baby food recipes, protein-reduced baby food products, and parental support. CG followed the current Swedish dietary recommendations. Measurements of body composition, anthropometry, biomarkers, and dietary intake were collected from baseline and at 12 and 18 mo.

Results: Of the 250 infants, 82% (n = 206) completed the study. There were no group differences in body composition or growth. In NG, protein intake, blood urea nitrogen and plasma IGF-1 were lower compared to CG at 12 and 18 mo. Infants in NG consumed 42% to 45% more fruits and vegetables compared to CG at 12 and 18 mo, which was reflected in a higher plasma folate at 12 and 18 mo. There were no between-group differences in EI or iron status.

Conclusions: Introduction of a predominantly plant-based, protein-reduced diet as part of complementary feeding is feasible and can increase fruit and vegetable intake.

This trial was registered at clinicaltrials.gov as NCT02634749.

Place, publisher, year, edition, pages
Elsevier, 2023
Keywords
complementary feeding, early nutrition, fruit, infancy, infant feeding, Nordic diet, plant-based food, repeated exposure, vegetables
National Category
Nutrition and Dietetics
Identifiers
urn:nbn:se:umu:diva-206971 (URN)10.1016/j.ajcnut.2023.03.020 (DOI)001015232200001 ()36990225 (PubMedID)2-s2.0-85152423063 (Scopus ID)
Funder
Region Västerbotten, VLL-644531Region Västerbotten, VLL-488901Region Västerbotten, VLL-677921Region Västerbotten, VLL-761381Umeå University
Available from: 2023-04-24 Created: 2023-04-24 Last updated: 2023-09-05Bibliographically approved
Waernbaum, I., Lind, T., Möllsten, A. & Dahlquist, G. (2023). The incidence of childhood-onset type 1 diabetes, time trends and association with the population composition in sweden: a 40 year follow-up. Diabetologia, 66(2), 346-353
Open this publication in new window or tab >>The incidence of childhood-onset type 1 diabetes, time trends and association with the population composition in sweden: a 40 year follow-up
2023 (English)In: Diabetologia, ISSN 0012-186X, E-ISSN 1432-0428, Vol. 66, no 2, p. 346-353Article in journal (Refereed) Published
Abstract [en]

Aims/hypothesis: During the 1980s and 1990s, the incidence of childhood-onset type 1 diabetes more than doubled in Sweden, followed by a plateau. In the present 40 year follow-up, we investigated if the incidence remained stable and whether this could be explained by increased migration from countries reporting lower incidences.

Methods: We used 23,143 incident cases of childhood-onset type 1 diabetes reported between 1978 and 2019 to the nationwide, population-based Swedish Childhood Diabetes Registry and population data from Statistics Sweden. Generalised additive models and ANOVA were applied to analyse the effects of onset age, sex, time trends and parental country of birth and interaction effects between these factors.

Results: The flattening of the incidence increase seems to remain over the period 2005–2019. When comparing the incidence of type 1 diabetes for all children in Sweden with that for children with both parents born in Sweden, the trends were parallel but at a higher level for the latter. A comparison of the incidence trends between individuals with Swedish backgrounds (high diabetes trait) and Asian backgrounds (low diabetes trait) showed that the Asian subpopulation had a stable increase in incidence over time.

Conclusions/interpretation: In Sweden, the increase in incidence of childhood-onset type 1 diabetes in the late 20th century has been approaching a more stable albeit high level over the last two decades. Increased immigration from countries with lower incidences of childhood-onset type 1 diabetes does not provide a complete explanation for the observed levelling off. Graphical abstract: [Figure not available: see fulltext.]

Place, publisher, year, edition, pages
Springer-Verlag New York, 2023
Keywords
Children, Immigration, Incidence, Time trend, Type 1 diabetes
National Category
Endocrinology and Diabetes
Identifiers
urn:nbn:se:umu:diva-200671 (URN)10.1007/s00125-022-05816-0 (DOI)000870664000001 ()36264296 (PubMedID)2-s2.0-85140249104 (Scopus ID)
Funder
Swedish Research Council, 2018-02565Swedish Research Council, 2016-00703
Available from: 2022-11-07 Created: 2022-11-07 Last updated: 2023-01-11Bibliographically approved
Lundberg, V., Sandlund, M., Eriksson, C., Janols, R., Lind, T. & Fjellman-Wiklund, A. (2022). How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals' views. Disability and Rehabilitation, 44(10), 1908-1915
Open this publication in new window or tab >>How children and adolescents with juvenile idiopathic arthritis participate in their healthcare: health professionals' views
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2022 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 44, no 10, p. 1908-1915Article in journal (Refereed) Published
Abstract [en]

Background: The study explores how healthcare professionals view participation of children and adolescents with juvenile idiopathic arthritis, in healthcare encounters.

Methods: This qualitative study includes focus groups of HCPs from different professions. The interviews were analysed with qualitative content analysis.

Results: The theme “Creating an enabling arena” illuminates how HCPs face possibilities and challenges when enabling children to communicate and participate in clinical encounters. HCPs, parents, and the healthcare system need to adjust to the child. The sub-theme “Bringing different perspectives” describes how children and their parents cooperate and complement each other during healthcare encounters. The sub-theme “Building a safe and comfortable setting” includes how HCPs address the child’s self-identified needs and make the child feel comfortable during encounters. The sub-theme “Facilitating methods in a limiting organisation” includes how HCPs’ working methods and organization may help or hinder child participation during encounters.

Conclusions: HCPs encourage children and adolescents to make their views known during healthcare encounters by creating an enabling arena. Collaboration and building good relationships between the child, the parents and the HCPs, before and during the healthcare encounters, can help the child express their wishes and experiences. Clinical examinations and use of technology, such as photos, films and web-bases questionnaires can be a good start for a better child communication in healthcare encounters.

Place, publisher, year, edition, pages
Taylor & Francis, 2022
Keywords
Adolescent, child, chronic condition, communication, healthcare professionals, participation, qualitative
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-175079 (URN)10.1080/09638288.2020.1811406 (DOI)000565631500001 ()32875956 (PubMedID)2-s2.0-85090155995 (Scopus ID)
Available from: 2020-09-30 Created: 2020-09-30 Last updated: 2022-07-12Bibliographically approved
Cashman, K. D., Kiely, M. E., Andersen, R., Grønborg, I. M., Tetens, I., Tripkovic, L., . . . Ritz, C. (2022). Individual participant data (IPD)-level meta-analysis of randomised controlled trials to estimate the vitamin D dietary requirements in dark-skinned individuals resident at high latitude. European Journal of Nutrition, 61, 1015-1034
Open this publication in new window or tab >>Individual participant data (IPD)-level meta-analysis of randomised controlled trials to estimate the vitamin D dietary requirements in dark-skinned individuals resident at high latitude
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2022 (English)In: European Journal of Nutrition, ISSN 1436-6207, E-ISSN 1436-6215, Vol. 61, p. 1015-1034Article in journal (Refereed) Published
Abstract [en]

Context and purpose: There is an urgent need to develop vitamin D dietary recommendations for dark-skinned populations resident at high latitude. Using data from randomised controlled trials (RCTs) with vitamin D3-supplements/fortified foods, we undertook an individual participant data-level meta-regression (IPD) analysis of the response of wintertime serum 25-hydroxyvitamin (25(OH)D) to total vitamin D intake among dark-skinned children and adults residing at ≥ 40° N and derived dietary requirement values for vitamin D.

Methods: IPD analysis using data from 677 dark-skinned participants (of Black or South Asian descent; ages 5–86 years) in 10 RCTs with vitamin D supplements/fortified foods identified via a systematic review and predefined eligibility criteria. Outcome measures were vitamin D intake estimates across a range of 25(OH)D thresholds.

Results: To maintain serum 25(OH)D concentrations ≥ 25 and 30 nmol/L in 97.5% of individuals, 23.9 and 27.3 µg/day of vitamin D, respectively, were required among South Asian and 24.1 and 33.2 µg/day, respectively, among Black participants. Overall, our age-stratified intake estimates did not exceed age-specific Tolerable Upper Intake Levels for vitamin D. The vitamin D intake required by dark-skinned individuals to maintain 97.5% of winter 25(OH)D concentrations ≥ 50 nmol/L was 66.8 µg/day. This intake predicted that the upper 2.5% of individuals could potentially achieve serum 25(OH)D concentrations ≥ 158 nmol/L, which has been linked to potential adverse effects in older adults in supplementation studies.

Conclusions: Our IPD-derived vitamin D intakes required to maintain 97.5% of winter 25(OH)D concentrations ≥ 25, 30 and 50 nmol/L are substantially higher than the equivalent estimates for White individuals. These requirement estimates are also higher than those currently recommended internationally by several agencies, which are based predominantly on data from Whites and derived from standard meta-regression based on aggregate data. Much more work is needed in dark-skinned populations both in the dose–response relationship and risk characterisation for health outcomes.

Place, publisher, year, edition, pages
Springer, 2022
Keywords
Dark-skinned, Dietary reference values, Individual participant data-level meta-regression analyses, Recommended dietary allowance, Vitamin D recommendations
National Category
Nutrition and Dietetics
Identifiers
urn:nbn:se:umu:diva-189126 (URN)10.1007/s00394-021-02699-6 (DOI)000712478600001 ()34705075 (PubMedID)2-s2.0-85117929906 (Scopus ID)
Funder
European Commission, 613977
Available from: 2021-11-09 Created: 2021-11-09 Last updated: 2022-07-12Bibliographically approved
Fredriksson, M., Persson, E., Dahlquist, G., Möllsten, A. & Lind, T. (2022). Risk of cancer in young and middle-aged adults with childhood-onset type 1 diabetes in Sweden - A prospective cohort study. Diabetic Medicine, Article ID e14771.
Open this publication in new window or tab >>Risk of cancer in young and middle-aged adults with childhood-onset type 1 diabetes in Sweden - A prospective cohort study
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2022 (English)In: Diabetic Medicine, ISSN 0742-3071, E-ISSN 1464-5491, article id e14771Article in journal (Refereed) Published
Abstract [en]

Aims/hypothesis: In persons with type 1 diabetes, the risk of cancer remains controversial. We wanted to examine the excess risk of cancer in a large population-based cohort diagnosed with type 1 diabetes before 15 years of age.

Study population and methods: From 1 July 1977 to 31 December 2013, we prospectively and on a national scale included 18,724 persons (53% men) with childhood-onset type 1 diabetes. For each person with type 1 diabetes, we selected four referents, matched for the date at birth and municipality of living at the time when the case developed diabetes. Cases and referents were linked to national registers of cancer and of the cause of death.

Results: A total of 125 persons (61% women) with diabetes had 135 different cancers, all diagnosed after the diabetes diagnosis. The median duration from diabetes diagnosis to first cancer diagnosis was 19 years (interquartile range 10-26). The median age at cancer diagnosis in the diabetes group was 28 years (interquartile range 20-35). The overall standardized incidence ratio (95%), using the Swedish general population as referents for women with diabetes was 1.28 (1.02, 1.58) and when comparing women with diabetes with matched referents, we found a hazard ratio of 1.42 (1.10, 1.85). No elevated risk was seen for men. Cancers of the breast and testis were the most common types in women and men respectively.

Conclusions: Women with childhood-onset type 1 diabetes had a small but significantly elevated risk of cancer. No such tendency was seen for men. The reason behind this is unclear.

Place, publisher, year, edition, pages
John Wiley & Sons, 2022
National Category
Endocrinology and Diabetes
Identifiers
urn:nbn:se:umu:diva-190979 (URN)10.1111/dme.14771 (DOI)000734276400001 ()34923678 (PubMedID)2-s2.0-85121793257 (Scopus ID)
Funder
Region VästerbottenSwedish Research Council, 2018‐02565
Available from: 2022-01-04 Created: 2022-01-04 Last updated: 2022-07-19Bibliographically approved
Hansson, L., Sandberg, C., Öhlund, I., Lind, T., Sthen Bergdahl, M., Wiklund, U., . . . Rydberg, A. (2022). Vitamin D, liver-related biomarkers, and distribution of fat and lean mass in young patients with Fontan circulation. Cardiology in the Young, 32(6), 861-868
Open this publication in new window or tab >>Vitamin D, liver-related biomarkers, and distribution of fat and lean mass in young patients with Fontan circulation
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2022 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 32, no 6, p. 861-868Article in journal (Refereed) Published
Abstract [en]

Introduction/aim: Young patients with Fontan circulation may have low serum 25-hydroxyvitamin D levels, an affected liver, and unhealthy body compositions. This study aimed to explore the association between vitamin D intake/levels, liver biomarkers, and body composition in young Fontan patients.

Method: We collected prospective data in 2017 to 2018, obtained with food-frequency questionnaires, biochemical analyses of liver biomarkers, and dual-energy X-ray absorptiometry scans in 44 children with Fontan circulation. Body compositions were compared to matched controls (n = 38). Linear regression analyses were used to investigate associations of biomarkers, leg pain, and lean mass on serum levels of 25-hydroxyvitamin D. Biomarkers were converted to z scores and differences were evaluated within the Fontan patients.

Results: Our Fontan patients had a daily mean vitamin D intake of 9.9 µg and a mean serum 25-hydroxyvitamin D of 56 nmol/L. These factors were not associated with fat or lean mass, leg pain, or biomarkers of liver status. The Fontan patients had significantly less lean mass, but higher fat mass than controls. Male adolescents with Fontan circulation had a greater mean abdominal fat mass than male controls and higher cholesterol levels than females with Fontan circulation.

Conclusion: Vitamin D intake and serum levels were not associated with body composition or liver biomarkers in the Fontan group, but the Fontan group had lower lean mass and higher fat mass than controls. The more pronounced abdominal fat mass in male adolescents with Fontan circulation might increase metabolic risks later in life.

Place, publisher, year, edition, pages
Cambridge University Press, 2022
Keywords
CHD, Fontan circulation, vitamin D, micronutrient intake, body composition
National Category
Pediatrics
Research subject
Pediatrics
Identifiers
urn:nbn:se:umu:diva-176573 (URN)10.1017/S1047951121003115 (DOI)000752691600001 ()34338624 (PubMedID)2-s2.0-85112065396 (Scopus ID)
Funder
Swedish Heart Lung Foundation, 20160496
Note

Originally included in thesis in manuscript form.

Available from: 2020-11-09 Created: 2020-11-09 Last updated: 2022-11-29Bibliographically approved
Johansson, U., Lene, L., Öhlund, I., Hernell, O., Lönnerdal, B., Lundén, S., . . . Lind, T. (2021). Acceptance of a Nordic, Protein-Reduced Diet for Young Children during Complementary Feeding: A Randomized Controlled Trial. Foods, 10, Article ID 275.
Open this publication in new window or tab >>Acceptance of a Nordic, Protein-Reduced Diet for Young Children during Complementary Feeding: A Randomized Controlled Trial
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2021 (English)In: Foods, E-ISSN 2304-8158, Vol. 10, article id 275Article in journal (Refereed) Published
Abstract [en]

Early life is critical for developing healthy eating patterns. This study aimed to investigate the effects of a Nordic, protein-reduced complementary diet (ND) compared to a diet following the current Swedish dietary guidelines on eating patterns and food acceptance. At 4–6 months (mo) of age infants were randomized to a Nordic group (NG, n = 41) or a Conventional group (CG, n = 40), and followed until 18 mo of age. Daily intake of fruits and vegetables (mean ± sd) at 12 mo was significantly higher in the NG compared to the CG: 341 ± 108 g/day vs. 220 ± 76 g/day (p < 0.001), respectively. From 12 to 18 mo, fruit and vegetable intake decreased, but the NG still consumed 32% more compared to the CG: 254 ± 99 g/day vs. 193 ± 67 g/day (p = 0.004). To assess food acceptance, both groups were tested with home exposure meals at 12 and 18 mo. No group differences in acceptance were found. We find that a ND with parental education initiates healthy eating patterns during infancy, but that the exposure meal used in the present study was insufficient to detect major differences in food acceptance. This is most likely explained by the preparation of the meal. Nordic produce offers high environmental sustainability and favorable taste composition to establish healthy food preferences during this sensitive period of early life.

Place, publisher, year, edition, pages
Basel: MDPI, 2021
Keywords
infant feeding, healthy eating, food preference, eating behavior, repeated exposure, vegetables, fruits, sustainable eating, environment
National Category
Pediatrics
Research subject
Pediatrics
Identifiers
urn:nbn:se:umu:diva-181856 (URN)10.3390/foods10020275 (DOI)000622535800001 ()2-s2.0-85102421382 (Scopus ID)
Funder
Region Västerbotten, VLL-644531Region Västerbotten, VLL-488901Region Västerbotten, VLL- 677921Region Västerbotten, VLL-761381
Available from: 2021-03-29 Created: 2021-03-29 Last updated: 2023-09-05Bibliographically approved
Fureman, A.-L., Lilja, M., Lind, T., Särnblad, S., Bladh, M. & Samuelsson, U. (2021). Comparing continuous subcutaneous insulin infusion and multiple daily injections in children with Type 1 diabetes in Sweden from 2011 to 2016: A longitudinal study from the Swedish National Quality Register (SWEDIABKIDS). Pediatric Diabetes, 22(5), 766-775
Open this publication in new window or tab >>Comparing continuous subcutaneous insulin infusion and multiple daily injections in children with Type 1 diabetes in Sweden from 2011 to 2016: A longitudinal study from the Swedish National Quality Register (SWEDIABKIDS)
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2021 (English)In: Pediatric Diabetes, ISSN 1399-543X, E-ISSN 1399-5448, Vol. 22, no 5, p. 766-775Article in journal (Refereed) Published
Abstract [en]

Objective: This study aimed to compare metabolic control measured as hemoglobin A1c (HbA1c), the risk of severe hypoglycemia, and body composition measured as body mass index standard deviation scores (BMI-SDS) in a nationwide sample of children and adolescents with Type 1 diabetes with continuous subcutaneous insulin infusion (CSII) and multiple daily injections (MDI), respectively.

Research Design and Methods: Longitudinal data from 2011 to 2016 were extracted from the Swedish National Quality Register (SWEDIABKIDS) with both cross-sectional (6 years) and longitudinal (4 years) comparisons. Main end points were changes in HbA1c, BMI-SDS, and incidence of severe hypoglycemia.

Results: Data were available from 35,624 patient-years (54% boys). In general, HbA1c decreased approximately 0.5% (2–5 mmol/mol) from 2011 to 2016 (ptrend < 0.001) and the use of CSII increased in both sexes and all age groups. Mean HbA1c was 0.1% (0.7–1.5 mmol/mol) lower in the CSII treated group. Teenagers, especially girls, using CSII tended to have higher BMI-SDS. There was no difference in the number of hypoglycemias between CSII and MDI over the years 2011–2016.

Conclusions: There was a small decrease in HbA1c with CSII treatment but of little clinical relevance. Overall, mean HbA1c decreased in both sexes and all age groups without increasing the episodes of severe hypoglycemia, indicating that other factors than insulin method contributed to a better metabolic control.

Place, publisher, year, edition, pages
John Wiley & Sons, 2021
Keywords
continuous subcutaneous insulin infusion, HbA1c, hypoglycemia, metabolic control, multiple daily injection
National Category
Pediatrics Endocrinology and Diabetes
Identifiers
urn:nbn:se:umu:diva-183402 (URN)10.1111/pedi.13217 (DOI)000651444600001 ()33929074 (PubMedID)2-s2.0-85105872175 (Scopus ID)
Funder
Samariten foundation for paediatric researchRegion Jämtland Härjedalen
Available from: 2021-05-27 Created: 2021-05-27 Last updated: 2023-03-24Bibliographically approved
Lundberg, V., Eriksson, C., Lind, T., Coyne, I. & Fjellman-Wiklund, A. (2021). How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study. Pediatric Rheumatology, 19(1), Article ID 156.
Open this publication in new window or tab >>How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
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2021 (English)In: Pediatric Rheumatology, E-ISSN 1546-0096, Vol. 19, no 1, article id 156Article in journal (Refereed) Published
Abstract [en]

Background: Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting them. Children and parents appeared to be more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters.

Aim: To explore how children, adolescents and young adults with Juvenile Idiopathic Arthritis (JIA) and parents of children with JIA view their participation and communication in healthcare encounters with healthcare professionals.

Methods: Using a qualitative study design, participatory workshops were held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman’s Qualitative Content Analysis resulting in one main theme and two subthemes.

Results: The theme “Feeling alienated or familiar with healthcare encounters” illuminates how children felt alienated at healthcare encounters if they found the encounters emotionally distressing. Children could withhold information regarding their health and function from both HCPs and their family and friends. The subtheme “Distancing oneself from healthcare” describe why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme “Being a normal event in life” describe how children felt more comfortable over time engaging with HCPs when they knew what would happen, and felt that HCPs gave them the necessary support they needed to participate. Conclusions: Children’s participation in healthcare encounters varied depending if children felt alienated or familiar to the healthcare situations. Children distance themselves and are reluctant to engage in healthcare encounters if they find them emotionally distressing and feel disregarded. Over time, children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2021
Keywords
Adolescent, Child, Juvenile idiopathic arthritis, Parent, Participation, Qualitative, Young adults
National Category
Pediatrics
Identifiers
urn:nbn:se:umu:diva-189614 (URN)10.1186/s12969-021-00642-x (DOI)000714021400001 ()34727931 (PubMedID)2-s2.0-85118717334 (Scopus ID)
Funder
Swedish Rheumatism AssociationNorrbacka-Eugenia Foundation
Available from: 2021-11-17 Created: 2021-11-17 Last updated: 2024-02-19Bibliographically approved
Projects
Physical, psychological and socioeconomic effects of childhood onset diabetes in Sweden ? longitudinal register-based studies [2018-02565_VR]; Umeå University
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-6328-1098

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