Swedish Parents Research Articles

Heterogeneity in health and lifestyle among preschool children with migrant background in Sweden

Abstract Background Parental country of birth and socioeconomic status affect children’s health, lifestyle, and access to care. But inequality patterns may vary depending on the outcome and indicator being studied. While prior studies have focused on single health outcomes, this study assessed the relationship between parental migrant status and a range of health and lifestyle indicators among 3-year-old children. Methods Using an outcome-wide approach, we analyzed data from cross-sectional population-based surveys of 3-year-old (2014-2018) in Northern Sweden, which included 9,099 children aged 33-42 months. The surveys were administered to parents. Logistic and linear regressions were performed to examine the association between parents’ place of birth and outcome indicators. Additionally, we controlled for parents’ income and education using multiple regression models. Results Children with at least one migrant parent were perceived by their parents to have poorer health (OR:1.5, CI:1.01-2.36) and more socio-emotional problems (OR: 2.8, CI: 2.20-3.59) compared to those with two Swedish parents. While there were no significant differences in estimated BMI, lifestyle indicators showed that these children consumed more sweets (OR:4.5, CI: 3.02-6.58), less milk (OR: 1.3, CI: 1.09-1.55), fewer vegetables (OR:1.6; CI: 1.22-2.05) and brushed their teeth less frequently (OR: 2.8, CI: 2.17-3.53). However, they spent more time playing outdoors on weekdays (OR:1.6, CI:1.22-2.00) and weekends (OR: 1.5, CI: 1.18-1.94), but screen time remained consistent between weekdays and weekends. Conclusions Parental migrant status has varying impacts on children’s health and lifestyle, with some indicators showing worse outcomes for children with migrant parents compared to those with Swedish parents, while others do not. An outcome-wide approach is crucial for targeted actions to strengthen protective factors and mitigate risk factors, and ultimately reduce inequalities in early childhood. Key messages • The link between parental migrant status and children’s well-being is complex. Not all indicators show worse outcomes, inequality patterns vary based on the specific outcome and indicator measured. • An outcome-wide approach is crucial to identify action areas for targeted interventions to reinforce protective factors and mitigate risk factors, and ultimately reduce inequalities during childhood.

Children's and parents' attitudes to and knowledge about HPV vaccination following a targeted information intervention.

The aim of this study was to investigate Swedish children's and parents' attitudes and knowledge about human papillomavirus (HPV) vaccination a year after gender-neutral HPV vaccination was introduced in Sweden's national immunization program (NIP). Additional information about HPV and vaccine was provided in the extended immunazation program. In total, 276 parents and 206 children from 22 School Health Services responded to a web-based survey. Results showed that half of the children and about a third of the parents received additional Public Health Agency information about HPV vaccination, and a majority were satisfied. Parents considered HPV vaccination being important for their children's health, and both children and parents considered it important to vaccinate all genders against HPV. Both children and parents rated school nurses as most reliable source of HPV vaccination information. Teachers were also a common source of HPV and HPV vaccination information for children. Further research among teachers in Sweden is needed to explore their knowledge and abilities to inform students and parents about HPV and vaccination.

Psychometric properties of the Swedish version of the Parenting Concerns Questionnaire in parents with cancer.

Parenting concerns can be a major source of distress for patients with cancer who are parents of dependent children; however, these are often not addressed in health care. The Parenting Concerns Questionnaire (PCQ) is an instrument designed to assess parents' worries about the impact of cancer on their children and their ability to parent during this time. The Swedish version of thePCQ has, however, not been evaluated. This study therefore aimed to examine the psychometric properties of the PCQ in a sample of Swedish parents with cancer. A sample of 336 patients with cancer having dependent children (≤18 years) were included in a cross-sectional web-based survey. Participants completed questionnaires assessing parenting concerns, depression, anxiety, and stress symptoms (DASS); self-efficacy, family functioning (FAD-GF); and sociodemographic and clinical characteristics. Descriptive analyses, as well as reliability and validity analyses, were conducted followed by a confirmatory factor analysis of the factor structure proposed by the authors of the original version of the PCQ. The majority were mothers (94.9%) with breast cancer (66.4%) aged 40-50 years (59.5%). The results showed evidence for convergent, criterion, and known group's validity, but the original three-factor structure of the PCQ was not fully supported by confirmatory factor analysis. Evaluating parenting concerns may be an important step towards identifying patients who could benefit from targeted psychosocial interventions. However, the PCQ may require some further refinement to fully capture the breadth of parenting concerns in parents with cancer in different settings.

Gaining Knowledge of a New and Contested Diagnosis – A Qualitative Examination of Swedish Parents of Children with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS)

Background: Pediatric acute-onset neuropsychiatric syndrome (PANS) is a symptom-based and clinically heterogeneous condition characterized by an abrupt and dramatic onset of symptoms such as loss of motoric and cognitive abilities, anxiety, compulsion, tics, and eating disorders. PANS is a new diagnosis and the condition has gathered controversy in research and clinical practice. Aim: We aimed to investigate the process by which parents of children with PANS acquire knowledge about the condition; the causes that lead parents to search for knowledge; the ways in which they search for knowledge; and the manner in which this knowledge is received by medical care professionals. Method: The study employed in-depth semi-structured, individual interviews with 13 parents of children diagnosed with PANS. An inductive qualitative thematic analysis was used as a guide for analyzing the data. Results: Challenges to understand their child’s illness and receive effective care led the parents to search for knowledge about PANS and provide an explanation for their child’s symptoms. They used personal and social resources to search for knowledge. They felt trusted and encouraged when clinicians endorsed their knowledge. On the other hand, when they were dismissed as a source of knowledge, they experienced a lack of trust towards professionals. Conclusions: A driving force for parents’ search for knowledge is a perceived incapacity to give meaning to their experiences. Another reason is mistrust of healthcare staff’s existing knowledge.

Conversations in couple relationships: a trustful foundation when making future parenthood “real”

Sociologists often argue that communication in long-term couple relationships is the basis on which expectations, trust, and equality are created in contemporary society. However, what is the role of these everyday conversations in uncertain life situations such as expecting one’s first child? This article examines concerns reported by prospective Swedish parents in order to explain the role of communication to alleviate these. Concerns, related to the formation of new relationships with one’s partner, oneself, and one’s future child, are mitigated by referring to the couple’s “good” communication. In the present prenatal situation, the communication pattern (established in the past) seems to serve three functions in mitigating future concerns: (1) the communication generates a trust capital in the relationship, allowing the couple to venture into the uncertain future, (2) the communication makes social perceptions of family life “real” by constructing a common nomos that is internalized in the individual as an existential motto, and (3) the communication legitimizes family practices as democratic when referring to future plans as emerging from responsive and consensual dialogs. In the article it is emphasized that welfare policy needs to be based on an existential legitimacy, often developed in couple conversations, and particularly shaped in life situations characterized by change. However, the stability offered at the conversational micro level may simultaneously prevent macro level changes, a complexity that needs to be considered when developing a gender equality policy that is to resonate with people’s existential meaning making. With the aim of consensus, and the means of balancing conflicts, there is a risk that the conversation will consolidate the interests of the stronger party. In this way, the responsive conversations in long-term relationships may consolidate gender inequality and counteract the welfare policy goal of equalizing power relationships.

Development of the Parent-to-Infant Bonding Scale: Validation in Swedish Mothers and Fathers in Community and Clinical Contexts.

Valid measurement instruments are needed to investigate the impact of parental bonding on child health development. The aim was to develop and validate a self-report questionnaire, the Parent-to-Infant Bonding Scale (PIBS) to measure bonding in both mothers and fathers. Internal consistency and construct validity were analysed using data from Swedish parents from both clinical (N = 182), and community (N = 122) population samples. Overall, good oracceptable internal consistency of the PIBS appeared. Convergent validity (against the Postpartum Bonding Questionnaire, analysed in the clinical sample) and discriminant validity (against the mental health constructs of depressive symptoms and anxiety) were demonstrated. The results support the PIBS as a measure of maternal and paternal bonding in community and clinical populations. Assessments of criterion validity in these populations are desirable. The similarities in PIBS measurement properties between the parent groups suggest its usefulness for comparisons between mothers and fathers, and for future investigations of unique and interactive impacts of maternal and paternal bonding on child outcomes using community and clinical cohorts.

Negative associations between step-up height and waist circumference in 8-year-old children and their parents.

To study cross-sectional relationships between step-up height and waist circumference (WC), a potential proxy for sarcopenic obesity, in Swedish children and parents. Participants were recruited from Swedish schools in disadvantaged areas in 2017. Height, body weight, WC and maximal step-up height were measured in 67 eight-year-old children and parents: 58 mothers, with a mean age of 38.5 and 32 fathers, with a mean age of 41.3. Sedentary time and physical activity were registered by an accelerometer. Associations between maximal step-up height and WC were analysed using Pearson's correlation and adjusted linear regression. Abdominal obesity, WC ≥ 66 centimetres (cm) in children, ≥88 cm in women and ≥102 cm in men, was observed in 13% and 35% of girls and boys, and in 53% and 34% among mothers and fathers, respectively. Negative associations between maximal step-up height and WC were found for children (r = -0.37, p = 0.002) and adults (mothers r = -0.58, p < 0.001, fathers r = -0.48, p = 0.006). The associations remained after adjustments for height, body mass index (BMI) and physical activity in adults. Reduced muscle strength clustered within families (r = 0.54, p < 0.001). Associations between reduced muscle strength and abdominal obesity were observed in children and parents. Sarcopenic obesity may need more attention in children. Our findings support family interventions.

Supporting first-time parents in their homes: an informal setting enabling interprofessional collaboration.

Home visiting programmes aiming to support parents and promote more equal health amongst young children have grown in Sweden and in other countries. These programmes involve interprofessional teams. Teamwork in interprofessional contexts often requires setting boundaries, but professionals' boundary work in the home setting is unexplored. Therefore, this article focuses on interprofessional teams comprising child healthcare nurses, midwives, social workers, and dental hygienists in a home visiting programme for first-time parents in Sweden; it aims to explore how the professionals performed boundary work that enabled collaboration and to investigate important contextual conditions for this kind of boundary work. The data were drawn from semi-structured interviews with twelve professionals from the four different disciplines. Content analysis was used to explore their boundary work. The findings show that the professionals performed three forms of collaborative boundary work. They maintained boundaries by clarifying their distinct roles and expertise. However, the differences were viewed as complementary, and the professionals worked together humbly to complement each other's knowledge and perspectives. Lastly, they tended to drop perceptions of prestige and blurred the boundaries to accommodate their overlapping knowledge. Important conditions for the success of collaborative boundary work were meetings prior to the home visits, the opportunities for discussion and reflection after the home visits, and the informal character of the home setting. Consequently, the professionals were able to jointly contribute to a holistic view of the visited families, which increased the possibilities to meet these families' needs. This study contributes knowledge on boundary work in interprofessional collaborations in the home setting. The informal character of the home setting seemed to facilitate collaboration and contributed to creating informal professional roles. The findings suggest that having interprofessional teams in the home setting enabled collaboration as well as reinforced support for first-time parents, which emphasizes the merit of home visit programmes.

Gendered relations? Associations between Swedish parents, siblings, and adolescents' time spent sedentary and physically active.

The family is assumed to be fundamental in youth socialization processes and development, connected to social and cultural practices such as healthy lifestyles and physical activity. However, gender patterns in physical activity among adolescents and the structural drivers of gender inequality (e.g., parentage and siblingship) are poorly understood. The aim of this study was to explore further how gender structures relate to adolescents' time spent being sedentary and physically active, using contemporary gender theory. This cross-sectional study involved 1,139 adolescents aged 13-14 and their parents, including 815 mothers and 572 fathers. Physical activity and time spent sedentary were assessed through accelerometry among adolescents and through a self-report questionnaire for parents validated against accelerometry. The results showed significant relationships between mothers' moderate-to-vigorous physical activity (MVPA) and girls' MVPA on weekdays and weekends, and fathers' MVPA was significantly related to girls' MVPA on weekdays. Our results imply that the relationship between Swedish parents' and adolescent girls' physical activity in higher intensities are to some extent gendered practices. However, time spent sedentary does not seem to show any patterns of being performed according to binary ideas of gender. Further, our exploratory analyses suggest that these results somewhat intersect with parents' educational level and relate to intra-categorical aspects of doing gender. The results also indicate slight gendered patterns in the "doing" of brotherhood for time spent sedentary, however, for boys only on weekends. The study contributes to the understanding of gender norms as constraints and enablers for adolescents' participation in physical activity. The results can spur public health and physical activity research to apply a contemporary gender theory approach, and to expand the research agenda connected to what relates to gender inequalities in physical activity practices.

In their own voices: immigrant mothers’ experiences and perceptions of the group-based self-assured parents programme for parents in disadvantaged areas in Sweden

ABSTRACT Culturally responsive parenting interventions are crucial for immigrant parents in disadvantaged areas. This qualitative study delves into the experiences of 18 immigrant mothers (Mage = 41.2 years) from Somalia, Syria, Turkey, Eritrea, and Iraq participating in the Swedish Self-Assured Parents programme, targeting immigrant parents who live in social disadvantage with teenage children. Thematic analysis revealed seven main themes (1) the meaning of the programme content and structure, (2) enjoying oneself and being comfortable, (3) putting the adolescent in the centre, (4) mothers’ own socioemotional development, (5) changing from being a passive reactor to an active agent, (6) empowered citizenship, and (7) having always been a strong and good mother. Overall, the mothers were positive about both the content and the format of the programme, appreciating the warm and supportive climate. They also perceived themselves as being more attentive to adolescent needs, having improved their own socio-emotional skills, and being empowered both as a citizen and as a mother on account of attending the programme. With the development of culturally responsive programmes that take into account the unique needs and experiences of diverse populations, governments can effectively support parents, promote child positive development, and help cultivate social cohesion among the members of society.

From parent-teacher relations to professional identity in Danish and Swedish schools

ABSTRACT Denmark and Sweden have witnessed a historically significant amplification of parental influence in compulsory schools during the past two decades. The emphasis on parental involvement in these two countries reflects international trends of neoliberal governing of educational processes. We know very little about the interplay between beginning teachers’ encounters with parents and how that influences the teachers’ identity formation. This article investigates beginning teachers’ experiences with parents in Sweden and Denmark and how these experiences reflect the teachers’ professional identity development. Through a comparative case study approach, interviews were carried out with 10 teachers in pre-service and in-service phases of their profession to capture their interpretations of their experiences with parents. A framework involving the concepts of parent-teacher relations, professional teacher identity, and emerging and thickening trajectories was used to develop the interview questions and analyse data. The results show that beginning teachers experience challenges in their relations with parents and these challenges put a strain on their self-definition as professionals. These results provide implications for addressing the constraints on teachers’ professional autonomy brought by a culture of clientelism which has the potential to change the role of teachers and therefore affect their professional identity development.

Family quality of life and family-school collaboration during the COVID-19 pandemic: perceptions of Swedish parents of adolescents with special educational needs

IntroductionCompared to other countries, Sweden did not introduce sudden lockdowns and school closures during the COVID-19 pandemic. Instead, the country chose a less restrictive approach to managing the pandemic, such as staying at home with any symptoms of cold or COVID-19, washing hands, and maintaining social distancing. Preschools and compulsory schools remained open. In this context, limited evidence exists about how Swedish families of students with special educational needs and disabilities (SEND) experienced collaboration with school professionals to support their children during the COVID-19, and how the pandemic affected parents’ perceptions of quality of their family life. The present study investigated parental perceptions of satisfaction with family-school collaboration and with family quality of life during the COVID-19 pandemic.MethodsTwenty-six parents of students with SEND who attended general lower secondary schools (grades 7-9) completed a survey using three measures: the demographic questionnaire, the Beach Center Family Quality of Life scale (FQOL), and the Family-School Collaboration scale – the adapted version of the original Beach Center Family-Professional Partnership Scale. Descriptive statistics, Pearson correlations were used to analyse data.ResultsParents felt less satisfied with family-school collaboration related to child-oriented aspects; they were least satisfied with their emotional well-being aspect of family quality of life. Strong, significant and positive associations were found between family-school collaboration and disability-related support aspect of FQOL.DiscussionThe findings point to the importance of family-school partnerships in promoting students’ positive school achievements, and in enhancing FQOL. The findings have practical implications for professional development of pre- and in-service teachers within the existing curricula of teacher preparation programs. Implications for further research are discussed given the study’s small sample size and challenges in recruitment of participants.

To capture the child’s interest - nurses experiences of ‘Saga stories in health talks’

BackgroundAs unhealthy lifestyle habits have been found to be established early in life and often track into adulthood, early preventive initiatives are important. ‘Saga Stories in health talks’ is a newly developed material that is intended to be used as a support for nurses at child health care (CHC) centers in their health talks with children and parents in Sweden. The aim of this study is to explore how CHC nurses experience the usability of the ‘Saga Stories in health talks’ material.MethodsThis study used a qualitative design. The material ‘Saga Stories in health talks’ was tested by 33 CHC nurses working in 11 CHC centers in three regions in Sweden. All CHC nurses were invited to participate in the interviews and 17 agreed. The interviews were transcribed and analysed using content analysis.ResultsThree categories and eight sub-categories emerged. The categories were: (1) An appreciated tool suitable for health talks, (2) Illustrations to capture children’s interest in the conversation with families, and (3) Barriers and facilitators. Saga Stories in health talks’ was experienced by the CHC nurses as an appreciated tool with content highly relevant to what should be discussed during the health talks. The CHC nurses described the material as well-designed with illustrations that helped them capture the child’s interest and increase their participation, while still involving the parents. Support from colleagues, the researchers, and managers were seen as important facilitators. Challenges included structural factors such as how and when to best use the material, especially concerning that the 4-year visit contained many other mandatory parts.ConclusionsThis pilot study show that the material ‘Saga Stories in health talks’ was highly appreciated by CHC nurses and facilitated their health talks with families in CHC. Important aspects with the material were the relevant content and the focus on healthy living habits, as well as the child friendly illustrations. These findings can be used when similar material is developed to facilitate health talks with families in other contexts. Our results also highlight the importance to adjust the implementation of a new material with already established practice and routines.

Psychometric Properties of the Parental Stress Scale in Swedish Parents of Children with and without Neurodevelopmental Conditions.

Parents of children with neurodevelopmental conditions (NDC) are at risk of experiencing elevated levels of parental stress. Access to robust instruments to assess parental stress is important in both clinical and research contexts. Objective: We aimed to evaluate the psychometric properties of a Swedish version of the Parental Stress Scale (PSS), completed by parents of 3- to 17-year-old children, with and without NDCs. Main analyses were conducted on data from three independent samples: a community sample (n=1018), a treatment-seeking sample of parents of children with various disabilities (n=653), and a sample of parents of children with Attention-Deficit/Hyperactivity Disorder (ADHD) who themselves reported varying ADHD symptom severities (n=562). Additional analyses were enabled by the use of data from a complementary test-retest sample (n=337). The internal consistency of the PSS was good (Cronbach's alpha, α=.87) and its test-retest reliability moderate (ICC=.66). The scale correlated in the expected direction with related constructs (r=.50-.56 in the community sample). An exploratory factor analysis found its internal structure to reflect two aspects of parental stress: Lack of Parental Rewards and Role Satisfaction (factor 1, α=.90) and Parental Stressors and Distress (factor 2, α=.85). The treatment-seeking parents of children with disabilities reported higher parental stress than community reference parents (p<.001; Cohen's d=1.17). Moreover, we found that parents with high ADHD symptom severity reported higher parental stress than parents with low ADHD symptom severity (p<.001; d=0.39). In summary, we found evidence in support of the reliability and validity of the PSS, which overall was judged to be useful as a measure of parental stress in a Swedish context. In addition, our results underline the importance of considering parental stress and related needs in assessments and intervention planning involving families of children with NDCs.

Instrument development and an intervention to increase parents' self-efficacy regarding their infant’s sleep

ObjectiveMany Swedish parents experience that their infant has sleeping problems. Parents’ self-efficacy regarding their infants’ sleep may play an important role in how they perceive these problems. This pilot study aimed to develop an instrument measuring parents’ self-efficacy regarding their infant’s sleep and to examine if parents’ self-efficacy was affected by an intervention focusing on parental education. MethodMothers and fathers, at a maternity unit in Sweden, were drawn into either an intervention (n = 46) or a control (n = 42) group. The intervention group received a home visit from a nurse who provided information about infant sleep; the importance of attachment; and advice regarding sleep, breastfeeding and bed sharing, including guidelines for safe bed sharing. Three months later, the participants answered questions on background data, breastfeeding, sleep and self-efficacy. ResultsThe 11-item two-factor Uppsala Parental Self-Efficacy about Infant Sleep Instrument (UPPSEISI) was constructed to measure parents’ perceived self-efficacy. In adjusted analyses, being in the intervention group was associated with a higher self-efficacy (P = 0.035), as were being a mother (P = 0.003) and being satisfied with one’s own sleep (P = 0.007), while parents’ own sleeping problems were associated with a lower self-efficacy (P = 0.015). ConclusionImportantly, parental education may increase parents’ self-efficacy regarding their infant’s sleep.

Housing Choices of Young Adults in Sweden

This study investigates why young adults live with their parents in Sweden. As young adults’ living arrangements affect decisions about marriage, education, childbirth, and participation in the workforce, more knowledge for policymakers is crucial to implementing effective policies to support young adults and promote financial independence and well-being. Using a data set from 1998 to 2021 at the municipal level in Sweden, we used a spatial autoregressive panel data model to examine the proportion of young adults living at home and the regional disparities. The study uncovered intraregional variations that illustrate how different municipalities in Sweden exhibit different patterns of young adults living at home. Our findings reveal that economic factors such as unemployment significantly impact this pattern. Housing market dynamics, demographic factors, cultural differences, and location-specific characteristics also play an essential role in explaining this pattern. These findings suggest that the key drivers are the lack of rental housing, high unemployment rates, a high degree of urbanisation, interregional migration, and social capital (such as social cohesion and inclusion).

Familial risk of vasospastic angina: a nationwide family study in Sweden

ObjectivesVasospastic angina (VSA) is a complex coronary vasomotor disorder associated with an increased risk of myocardial infarction and sudden death. Despite considerable advances in understanding VSA pathophysiology, the interplay between...

Coparent exclusion, prenatal experiences, and mental health during COVID-19 in Sweden.

Pregnant women were classified as a risk group during the COVID-19 pandemic, and restrictions resulted in nonbirthing parents being excluded from antenatal care and in uncertain or brief involvement in the birth of the child. Sweden presents a unique context for examining parents' experiences during the pandemic because of the country's policy to not enforce lockdown and its commitment to gender equality in parenting. This study aimed to explore the experiences and mental health of expecting parents in Sweden by combining qualitative content analysis of parents' own narratives (n = 212) and quantitative analysis of established measures of perinatal depression, anxiety, and self-efficacy (N = 378). Content analysis indicated that parents reported feeling isolated and missing social support. Regarding the medical context, nonbirthing parents reported feeling excluded, and birthing parents reported increased worry about a potential birth with their partner absent. However, parents with a partner also reported feeling closer with their coparent and appreciating the increased time and nearness. Quantitative results indicated that symptoms of depression and anxiety significantly predicted mentions of feeling isolated and absence of mentions of positives. Concerns of exclusion were significantly linked to lower self-efficacy. Together, the findings highlight the risks of reducing social support and excluding nonbirthing parents in health care during the pandemic, as well as the potential for more positive perinatal experiences if parents' time together is enabled in the prenatal period. Implications for health care and workplaces are discussed. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

'You Become Pretty Much a Healthcare Worker': The Parenting of a Child with Inherited Metabolic Disease and its Metaphors

Parents of a child diagnosed with a rare inherited metabolic disease (IMD) are required to actively participate in their child’s treatment, by managing the risk of metabolic crisis and ensuring that they adhere to a stringent diet. In this Research Article, I discuss the specific roles, tasks, and knowledge that Polish and Swedish parents of children with IMDs have developed. I also pay critical attention to the notions and metaphors that parents, clinicians, and social scientists use to describe these. The prevailing metaphors of professionalisation used to describe parental roles contribute to the acknowledgment of these caregivers’ unique expertise. However, I argue, they also overly stress an individualistic perspective and obscure the relationality of care, collaboratively achieved between parents, patients, relatives, and healthcare providers.

Parental experiences of the informed consent process in randomized clinical trials-A Nordic study.

Randomized clinical trials (RCTs) are an essential part of improving acute lymphoblastic leukemia (ALL) treatment. This population-based questionnaire study investigated parents' experiences of the informed consent process in the RCTs within the Nordic NOPHO (Nordic Society of Paediatric Haematology and Oncology) ALL2008 trial. Parents in Sweden, Denmark, and Finland whose child was alive and in first remission after end of therapy and who were asked to participate in any RCT in the ALL2008 protocol, were asked to complete 15 questions/items regarding their experience of the RCT consent process. A total of 483 parents of 279 children met the inclusion criteria and answered the study questionnaire. Most (91%) agreed/strongly agreed to having received sufficient information to make a well-informed decision, felt confidence in the study design (86%), and thought that the process was satisfactory (86%). Those who did not consent reported a generally more negative experience of the process. More than a third of all parents and over half of parents who had refused participation felt that it was burdensome to decide. Most parents (66%) in general, and one-third of those with children 8years or older, reported that their child was not involved in the process. Parents were in general satisfied with the informed consent process, although many parents, particularly those who refused participation, reported it as burdensome to make the decision concerning RCT. Fewer than expected of the school-aged children were involved in the decision process, which calls for attention on how children are included in the consent procedure in clinical trials.