The needs of parents of children with allergic diseases in preschool and school: A focus-group study.

PURPOSE: To describe the perceived physical and psychological needs of parents of children with allergic diseases and asthma regarding allergy management in preschools and schools. METHODS: We conducted a semi-structured focus group study with parents of children (ages 2-13 years) with different types of allergic diseases with/without asthma living in Stockholm, Sweden. Data were analyzed qualitative with systematic text condensation. RESULTS: Across 4 focus groups, involving 25 parents, four primary themes representing parents' expressed needs related to allergy management in preschools and schools emerged: (i) Well-implemented routines (to create an allergy-safe physical environment where personnel have clear responsibilities and communication); (ii) Allergy competence among personnel (basic and practical knowledge, being able to act in emergency situations); (iii) My child is to be treated equally (with equal conditions and for their child to being included); (iv) To feel trust (parents need to be understood, taken seriously and feel confident in the preschool/school personnel's ability to take care of their child in a secure way). CONCLUSION: This qualitative study shows parents needs regarding general allergy management in preschool/school. These needs emphasized well implemented allergy routines, improved allergy knowledge and competence among personnel, importance of equal conditions for children with allergic disease and establishing a trustful allergy-supportive relationship with both parents and children. IMPLICATIONS IN PRACTICE: The study findings provide crucial insights for school administrators, teachers, and health care professionals on how to improve allergy management in preschools and schools.

Residential overcrowding in relation to children's health, environment and schooling - a qualitative study.

AIM: To explore how overcrowding affects children's health, environment and schooling. METHODS: A qualitative study was conducted with individual interviews among 20 participants with occupational experience from overcrowded Stockholm areas but diverse in professions, locations and employers. The interviews were recorded, transcribed and analysed with Systematic Text Condensation. RESULTS: Almost all participants expressed that overcrowding has a negative impact on children's health, environment and schooling - based on perceptions of precarious and different living conditions for children in overcrowded areas, for example, substandard homes, vulnerability, stress, exclusion, limited resources, lack of learning opportunities, gender differences, confinement, shame, insecurity, conflicts, risk of criminality, and bodily impact, both physical and psychological. CONCLUSIONS: Our qualitative evidence suggest that overcrowding has a negative impact on children's health, environment and schooling.

Living with Atopic Dermatitis as a Young Adult in Relation to Health-related Quality of Life and Healthcare Contacts: A Population-based Study.

Most studies of health-related quality of life (HRQoL) and atopic dermatitis are based on data from dermatology clinics. The aim of this study was to determine whether atopic dermatitis affects HRQoL in adolescence and young adulthood, based on data from the population-based cohort BAMSE (Children, Allergy, Environmental, Stockholm, Epidemiology). A further aim was to determine if the use of topical corticosteroids and healthcare contacts affect HRQoL. Participants with data from birth to young adulthood (n=3,064) were included. Two generic instruments were used to measure HRQoL:General Health at age 12, 16 and 24 years and EQ-5D-3L, including EQ-visual analogue scale (EQ-VAS) at age 24 years. In addition, the disease-specific Dermatology Quality Life Index (DLQI) was used at 24 years. Healthcare consultations for atopic dermatitis were obtained from Stockholm Regional Healthcare Data Warehouse (n = 1,944). Participants with atopic dermatitis had an increased odds ratio (OR) of not feeling completely healthy (adjusted OR 1.50; 95% confidence interval (95% CI): 1.30-1.73). Participants with persistent atopic dermatitis, fulfilling atopic dermatitis criteria in the 12- and/or 16- and 24-year follow-ups reported worse EQ-VAS value 70.0 (95% CI 67.3-72.7) in the 25th percentile, than peers without atopic dermatitis. Over an 8-year period, contact with healthcare was limited (mean number 0.96). In conclusion, atopic dermatitis had a negative impact on HRQoL in young adults from adolescence to adulthood and healthcare consultations were few.

Lost in the transition from pediatric to adult healthcare? Experiences of young adults with severe asthma.

Objective: Asthma is a multifaceted disease, and severe asthma is likely to be persistent. Patients with severe asthma have the greatest burden and require more healthcare resources than those with mild-to-moderate asthma. The majority with asthma can be managed in primary care, while some patients with severe asthma warrant referral for expert advice regarding management. In adolescence, this involves a transition from pediatric to adult healthcare. This study aimed to explore how young adults with severe asthma experienced the transition process.Methods: Young adults with severe asthma were recruited from an ongoing Swedish population-based cohort. Qualitative data were obtained through individual interviews (n = 16, mean age 23.4 years), and the transcribed data were analyzed with systematic text condensation.Results: Four categories emerged based on the young adults' experiences: "I have to take responsibility", "A need of being involved", "Feeling left out of the system", and "Lack of engagement". The young adults felt they had to take more responsibility, did not know where to turn, and experienced fewer follow-ups in adult healthcare. Further, they wanted healthcare providers to involve them in self-management during adolescence, and in general, they felt that their asthma received insufficient support from healthcare providers.Conclusions: Based on how the young adults with severe asthma experienced the transition from pediatric to adult healthcare, it is suggested that healthcare providers together with each patient prepare, plan, and communicate in the transition process for continued care in line with transition guidelines.

Living with a Severe Allergy: Lived Perspectives from Swedish Adolescents and their Parents.

BACKGROUND: During adolescence, the young person should gradually develop independence from his or her parents. However, having a chronic disease like a severe allergy may add stress and challenges beyond normal development and involves a struggle between adapting socially, feeling healthy, and managing the disease. OBJECTIVE: To describe experiences of living with a severe allergy from the perspective of adolescents and their parents. METHOD: A qualitative study with six focus group interviews were performed, two with adolescents and four with their parents (10 adolescents, 10-16 years old and 21 parents). The transcribed data were analyzed using systematic text condensation. RESULT: Four themes emerged: Feeling different (adolescents and parents), shift in responsibility (adolescents and parents), the importance of parents (only adolescents) and the importance of healthcare providers (only parents). The adolescents relied on their parents, while also taking responsibility for managing their disease. The parents expressed a need to protect their children; but they did not seem to be aware of the responsibility their children took. The parents highlighted the importance of support from healthcare providers but this was not mentioned by the adolescents. CONCLUSION: This study showed that both the adolescents and their parents stated that they took responsibility for managing the disease, but in different ways. For healthcare providers, this needs to be taken into account in order to support both adolescents and parents for self-management and shift in responsibilities which begins during adolescents.

Experiences of Daily Life Among Adolescents With Asthma - A Struggle With Ambivalence.

OBJECTIVE: There is limited knowledge about how adolescents with asthma view their disease in daily life and how these views impact on management. The aim of this study was to describe experiences of daily life, with particular focus on thoughts, feelings and management of adolescents with asthma. METHODS: In this qualitative study, data were obtained from 10 interviews with adolescents (aged 16-18 years) with asthma recruited from the Swedish population-based prospective birth cohort, BAMSE. Data were analysed through Systematic Text Condensation. RESULTS: Experiences of daily life among adolescents with asthma were defined in four categories: Insight and understanding; Asthma not the focus of daily life; Being acknowledged and, Being affected by asthma symptoms. The adolescents had developed an insight into and understanding of their disease, but did not want asthma to be the focus of their daily lives. The adolescents wanted their asthma to be acknowledged, but not to the point that they were defined by their asthma. They reported having many asthma symptoms, especially during physical activity, but also described a desire to feel healthy, "normal" and like their peers. CONCLUSIONS: Having asthma in adolescence involves several struggles with ambivalence between adapting socially, feeling healthy and managing one's asthma. IMPLICATIONS IN CLINICAL PRACTICE: The provision of person-centred care may be one way to handle the ambivalence among adolescents with asthma and thereby help them to manage their asthma.

Infantile atopic dermatitis - increasing severity predicts negative impacts on maternal and infant sleep: a mixed methods study.

BACKGROUND: While the impacts of atopic dermatitis (AD) on maternal and child sleep outcomes have been previously explored, less is known about the associations between infantile AD and sleep quality and quantity. OBJECTIVE: To describe the perceived causes of AD-associated maternal sleep disturbances and the association between AD severity and infant sleep outcomes. METHODS: Mothers with infants aged < 19 months old with a diagnosis of AD were recruited from social media and medical clinics in Winnipeg, Canada between October 2021 and May 2022. Infant AD severity was classified using maternal-reported data on the Patient-Oriented Scoring Atopic Dermatitis tool (PO-SCORAD). Quantitative data were collected via a series of questionnaires with a subset of mothers subsequently completing semi-structured interviews. Quantitative and qualitative data were integrated in the discussion. RESULTS: Mothers of infants with moderate/severe AD (6/12) were more likely to report their infant suffering from a higher degree of sleeplessness (i.e., ≥ 5 on a scale of 0-10) over the past 48 h compared to mothers of infants with mild AD (0/18). This was supported by qualitative findings where mothers described how their infant's sleep quality and quantity worsened with AD severity. Additionally, 7/32 mothers reported that their child's AD, regardless of severity, disturbed their sleep. Maternal sleep loss was most commonly attributed to infant itching (6/7), followed by worry (4/7). CONCLUSION: Infantile AD severity was associated with worse sleep outcomes for both mothers and infants. We propose that maternal and infantile sleep quality and quantity can be improved by reducing AD severity through adherence to topical treatments.

Infantile atopic dermatitis and maternal-infant bonding: a mixed methods study.

BACKGROUND: Childhood atopic dermatitis can have a negative effect on caregivers' quality of life and stress levels due to the burdensome nature of its treatment. Given that the condition often emerges in infancy, atopic dermatitis-related stress also carries the potential to negatively affect the developing mother-infant bond. While it is plausible that atopic dermatitis has a negative impact on maternal-infant bonding, these relationships have not been studied directly. In light of this gap, the current study investigated the association between infantile atopic dermatitis and the maternal-infant bond using a mixed-method design. METHODS: Mothers of infants (< 19 months) with atopic dermatitis were recruited from social media and medical clinics between October 2021 and May 2022. Mothers with infants unaffected by inflammatory skin conditions were also recruited to serve as a control group. Participants were asked to complete questionnaires related to their demographics, child's health, and mother-infant bond. Multiple linear regression analyses were used to assess bonding quality among cases and controls. A subset of cases were also asked to participate in semi-structured interviews focused on infantile atopic dermatitis and the maternal-infant bond. RESULTS: The final sample consisted of 32 cases and 65 controls. Scores on the impaired bonding and risk of abuse subscales did not significantly differ between cases and controls. However, mothers of infants with atopic dermatitis did report lower levels of caregiving anxiety (b = - 1.47, p < 0.01) and pathological anger/rejection (b = - 1.74, p = 0.02) relative to controls. Qualitative findings suggest that the topical therapies required to manage atopic dermatitis may strengthen the bond between some mothers and infants. CONCLUSION: Findings suggest that atopic dermatitis does not have a negative impact on maternal-infant bonding and may actually improve bonds in some cases. In light of this finding, clinicians may leverage the potentially positive impact of atopic dermatitis-related caregiving on the maternal-infant bond to encourage caregivers to remain adherent to their child's topical treatments.

Adherence to national guidelines for children with asthma at primary health centres in Sweden: potential for improvement.

BACKGROUND: Although asthma is the most common chronic paediatric disease in Western Europe, the extent of adherence to guidelines for primary care management of paediatric asthma remains unclear. AIMS: To evaluate adherence to national guidelines for primary care management of children with asthma. METHODS: This survey involved 18 primary healthcare centres in Stockholm, Sweden. The medical records of 647 children aged 6 months to 16 years with a diagnosis of asthma, obstructive bronchitis, or cough were selected and scrutinised. 223 children with obstructive bronchitis or cough not fulfilling the evidence-based criteria for asthma were excluded, yielding a total of 424 subjects. Documentation of the most important indicators of quality as stipulated in national guidelines (i.e., tobacco smoke, spirometry, pharmacological treatment, patient education, and demonstration of inhalation technique) was examined. RESULTS: Only 22% (n=49) of the children 6 years of age or older had ever undergone a spirometry test, but the frequency was greater when patients had access to an asthma nurse (p=0.003). Although 58% (n=246) of the total study population were treated with inhaled steroids, documented patient education and demonstration of inhalation technique was present in 14% (n=59). Exposure to tobacco smoke was documented in 14% (n=58). CONCLUSIONS: This study reveals a substantial gap between the actual care provided for paediatric asthma and the recommendations formulated in national guidelines.