Psychometric evaluation of the electronic faces thermometer scale for pain assessment in children 8-17 years old: A study protocol.

It is often a challenge for a child to communicate their pain, and their possibilities to do so should be strengthened in healthcare settings. Digital self-assessment provides a potential solution for person-centered care in pain management and promotes child participation when a child is ill. A child's perception of pain assessment differs when it is assessed using digital or analog formats. As we move into the digital era, there is an urgent need to validate digital pain assessment tools, including the newly developed electronic Faces Thermometer Scale (eFTS). This study protocol describes three studies with the overall aim to evaluate psychometric properties of the eFTS for assessing pain in children 8-17 years of age. A multi-site project design combining quantitative and qualitative methods will be used for three observational studies. Study 1: 100 Swedish-speaking children will report the level of anticipated pain from vignettes describing painful situations in four levels of pain and a think-aloud method will be used for data collection. Data will be analyzed with phenomenography as well as descriptive and comparative statistics. Study 2: 600 children aged 8-17 years at pediatric and dental settings in Sweden, Denmark, Iceland, and USA will be included. Children will assess their pain intensity due to medical or dental procedures, surgery, or acute pain using three different pain Scales for each time point; the eFTS, the Faces Pain Scale Revised, and the Coloured Analogue Scale. Descriptive and comparative statistics will be used, with subanalysis taking cultural context into consideration. Study 3: A subgroup of 20 children out of these 600 children will be purposely included in an interview to describe experiences of grading their own pain using the eFTS. Qualitative data will be analyzed with content analysis. Our pilot studies showed high level of adherence to the study procedure and rendered only a small revision of background questionnaires. Preliminary analysis indicated that the instruments are adequate to be used by children and that the analysis plan is feasible. A digital pain assessment tool contributes to an increase in pain assessment in pediatric care. The Medical Research Council framework for complex interventions in healthcare supports a thorough development of a new scale. By evaluating psychometric properties in several settings by both qualitative and quantitative methods, the eFTS will become a well-validated tool to strengthen the child's voice within healthcare.

The association between fingolimod and mental health outcomes in a cohort of Multiple Sclerosis patients with stress.

OBJECTIVE: The primary objective was to study the association between fingolimod and the frequency of depression, anxiety, and insomnia symptoms among a cohort of Multiple Sclerosis (MS) patients with stress. The secondary objective was to examine the association between patient characteristics and these psychiatric symptoms. PATIENTS AND METHODS: Patients with MS and stress were recruited according to the Arabic version of the Perceived Stress Scale (PSS). Psychiatric outcomes were measured by validated scales. Logistic regression was used to estimate adjusted odds ratios (aORs) with 95% confidence intervals (CIs). Data from 324 participants were analyzed. RESULTS: Fingolimod was associated with a significantly lower adjusted odds ratio for depression (aOR 0.58, 95% CI 0.35-0.97, p<0.05) but less associated with anxiety (aOR 0.63, 95% CI 0.35-1.01, p=0.05) and insomnia (aOR 0.88, 95% CI 0.52-1.51, p=0.64). CONCLUSIONS: Close monitoring of mental health is required for patients with MS using disease-modifying therapies.

The role of support from significant others in the association between disease-related factors and sickness absence in early rheumatoid arthritis: a longitudinal study.

Objective: The aim of this study was to analyse how support from significant others affects the associations between disease-related variables and sickness absence during the first 2 years after rheumatoid arthritis (RA) diagnosis.Method: Data from 274 people with RA (73% women) of working age (18-63 years) were retrieved from the Swedish early RA cohort TIRA-2. These data concerned disease-related variables (disease activity, activity limitations, pain intensity, and grip force), sickness absence, and perceived support from significant others. Associations of disease-related variables with sickness absence and how these associations were moderated by support from significant others were analysed using zero-inflated negative binomial regression.Results: During the 2 years after diagnosis, higher disease activity was significantly associated with increased odds of sickness absence, a connection strengthened by perceived support from family during the first year. More perceived support was also directly and significantly associated with increased odds of sickness absence during the first year.Conclusions: Support from significant others is related to sickness absence in RA, specifically during the first year after diagnosis. Although patients report high levels of support from significant others, this does not necessarily lead to more positive work outcomes. Therefore, it is important to consider other aspects of support that might influence work outcomes, e.g. type and quality of support. Future research should investigate these forms of support, and when significant others should be encouraged to support in the rehabilitation process to increase the chances of people with RA having a well-functioning and sustainable work life.

Parents' perceptions of oral health, general health and dental health care for children with Down syndrome in Sweden.

AIM: To describe parental perceptions of general health, oral health and received dental health care in Swedish children with Down syndrome (DS). METHODS: Online questionnaire, quantitative data analysis (Chi-square test). RESULTS: Parents of 101 children with DS (52 boys, 49 girls, mean age: 9.6 years) participated. Seventy percent rated their child's general health and 74% their child's oral health as good or very good. Parents, who rated their child's oral health as poor (8%), also reported that dental procedures were difficult. Children received dental care at general (55%) and specialist clinics (53%). Ninety-four percent of parents of children receiving specialist dental health care were satisfied compared to 70% of parents with children in general clinics. The parents most valued characteristics of dental professionals were patience (63%) and their ability to engage the child (68%). Parents wanted multidisciplinary collaboration. CONCLUSION: Most parents rated their child's general and oral health as good or very good. Children with poor oral health were also reported to have difficulties coping with dental procedures. Parents wanted dental care to be tailored to meet their child's unique needs. They wanted dental professionals to have knowledge about children with a need for special care. Lastly, they requested multidisciplinary collaboration.

Language impairment in children aged 5 and 8 years after antiepileptic drug exposure in utero - the Norwegian Mother and Child Cohort Study.

BACKGROUND AND PURPOSE: The purpose was to examine the consequences of antiepileptic drug (AED) exposure during pregnancy on language abilities in children aged 5 and 8 years of mothers with epilepsy. METHODS: The study population included children of mothers with and without epilepsy enrolled in the Norwegian Mother and Child Cohort Study 1999-2008. Mothers prospectively provided information on epilepsy diagnosis, AED use during pregnancy and the child's language abilities at age 5 and 8 years, in questionnaires with validated language screening tools. AED concentrations in gestation week 17-19 and in the umbilical cord were measured. RESULTS: The study population included 346 AED-exposed and 388 AED-unexposed children of mothers with epilepsy, and 113 674 children of mothers without epilepsy. Mothers of 117 and 121 AED-exposed children responded to the questionnaires at age 5 and 8 years, respectively. For AED-exposed children, the adjusted odds ratio for language impairment was 1.6 [confidence interval (CI) 1.1-2.5, P = 0.03] at age 5 years and 2.0 (CI 1.4-3.0, P < 0.001) at age 8 years, compared to children of mothers without epilepsy. Children exposed to carbamazepine monotherapy had a significantly increased risk of language impairment compared to control children at age 8 years (adjusted odds ratio 3.8, CI 1.6-9.0, P = 0.002). Higher maternal valproate concentrations correlated with language impairment at age 5 years. Periconceptional folic acid supplement use protected against AED-associated language impairment. CONCLUSION: Foetal AED exposure in utero is associated with an increased risk of language impairment in children aged 5 and 8 years of mothers with epilepsy. Periconceptional folic acid use had a protective effect on AED-associated language impairment.

CT and MR imaging used in age estimation: a systematic review.

Computer Tomography (CT) and Magnetic Resonance Imaging (MRI) may be useful tools in assessment of age of an individual. This article presents a review of published studies using CT or MRI in dental age estimation. They were published between July 2004 and September 2017 investigating different types of teeth, methods and formulae for age estimation. Twenty-seven articles were included. The different studies show good results, and it seems that a combination of different types of teeth, methods (depending on the degree of root formation) and cooperation between different disciplines in the same study gives a higher accuracy.

GaAs Nanowire pn-Junctions Produced by Low-Cost and High-Throughput Aerotaxy.

Semiconductor nanowires could significantly boost the functionality and performance of future electronics, light-emitting diodes, and solar cells. However, realizing this potential requires growth methods that enable high-throughput and low-cost production of nanowires with controlled doping. Aerotaxy is an aerosol-based method with extremely high growth rate that does not require a growth substrate, allowing mass-production of high-quality nanowires at a low cost. So far, pn-junctions, a crucial element of solar cells and light-emitting diodes, have not been realized by Aerotaxy growth. Here we report a further development of the Aerotaxy method and demonstrate the growth of GaAs nanowire pn-junctions. Our Aerotaxy system uses an aerosol generator for producing the catalytic seed particles, together with a growth reactor with multiple consecutive chambers for growth of material with different dopants. We show that the produced nanowire pn-junctions have excellent diode characteristics with a rectification ratio of >105, an ideality factor around 2, and very promising photoresponse. Using electron beam induced current and hyperspectral cathodoluminescence, we determined the location of the pn-junction and show that the grown nanowires have high doping levels, as well as electrical properties and diffusion lengths comparable to nanowires grown using metal organic vapor phase epitaxy. Our findings demonstrate that high-quality GaAs nanowire pn-junctions can be produced using a low-cost technique suitable for mass-production, paving the way for industrial-scale production of nanowire-based solar cells.

Pain and activity limitations in women and men with contemporary treated early RA compared to 10 years ago: the Swedish TIRA project.

OBJECTIVES: To study differences regarding pain and activity limitations during the 3 years following diagnosis in women and men with contemporary treated early RA compared with their counterparts who were diagnosed 10 years earlier. METHOD: This study was based on patients recruited to the Early Intervention in RA (TIRA) project. In the first cohort (TIRA-1) 320 patients were included in time for diagnosis during 1996-1998 and 463 patients were included in the second cohort (TIRA-2) during 2006-2009. Disease activity, pain intensity (Visual Analogue Scale, VAS), bodily pain (BP) in the 36-item Short Form Health Survey (SF-36), activity limitations (Health Assessment Questionnaire, HAQ), and medication were reported at inclusion and at follow-up after 1, 2, and 3 years. RESULTS: Disease activity, pain, and activity limitations were pronounced at inclusion across both genders and in both cohorts, with some improvement observed during the first year after diagnosis. Disease activity did not differ between cohorts at inclusion but was significantly lower at the follow-ups in the TIRA-2 cohort, in which the patients were prescribed traditional disease-modifying anti-rheumatic drugs (DMARDs) and biological agents more frequently. In TIRA-2, patients reported significantly lower pain and activity limitations at all follow-ups, with men reporting lower pain than women. Women reported significantly higher activity limitations at all time points in TIRA-2. CONCLUSIONS: Pain and activity limitations were still pronounced in the contemporary treated early RA cohort compared with their counterparts diagnosed 10 years earlier and both of these factors need to be addressed in clinical settings.

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).

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.

Diffusion-weighted lesions in acute ischaemic stroke patients with migraine.

OBJECTIVES: There is increasing knowledge about an association between migraine and ischaemic stroke. Cortical spreading depression (CSD) is the probable biological substrate of migrainous aura. To investigate the influence of CSD on the apparent stroke - migraine association, we hypothesized that magnetic resonance (MR) diffusion weighted images of acute ischaemic stroke patients would reveal an association between small cortical infarctions and migraine. METHODS: We included all patients admitted to the Bergen stroke unit between 2006 and 2012 with verified acute ischaemic stroke by MR imaging. Patients were grouped in a migraine and a no-migraine group. Baseline data and clinical characteristics were analysed between the groups. Imaging data were analysed with respect to infarct location and size. Multivariate analyses were performed to adjust for confounders and provide risk estimates for observed associations. RESULTS: A total of 1703 subjects were enrolled, 787 subjects were excluded due to uncertain or unobtainable migraine diagnosis, leaving 196 and 720 subjects in the migraine and no-migraine group, respectively. The migraine group was younger and included a higher proportion of females. There were more infarctions due to cardio-embolism (P=0.015) and fewer due to small vessel disease (P=0.018) in the migraine group. A higher rate of patients in the migraine group presented symptoms from the posterior circulation (P=0.008). Migraine was associated with cortical infarctions (OR 1.8 CI: 1.3-2.5, P=0.001). Migraine was also associated with small infarctions (OR 1.9 CI: 1.04-3.5, P=0.038). CONCLUSIONS: Migraine was associated with small cortical infarctions. This association may be due to cortical spreading depression.

Sleep quality and arousal in migraine and tension-type headache: the headache-sleep study.

OBJECTIVES: The present paper summarizes and compares data from our studies on subjective and objective sleep quality and pain thresholds in tension-type headache (TTH), migraine, and controls. MATERIAL AND METHODS: In a blinded controlled explorative study, we recorded polysomnography (PSG) and pressure, heat, and cold pain thresholds in 34 controls, 20 TTH, and 53 migraine patients. Sleep quality was assessed by questionnaires, sleep diaries, and PSG. Migraineurs who had their recordings more than 2 days from an attack were classified as interictal while the rest were classified as either preictal or postictal. Interictal migraineurs (n=33) were also divided into two groups if their headache onsets mainly were during sleep and awakening (sleep migraine, SM), or during daytime and no regular onset pattern (non-sleep migraine, NSM). TTH patients were divided into a chronic or episodic group according to headache days per month. RESULTS: Compared to controls, all headache groups reported more anxiety and sleep-related symptoms. TTH and NSM patients reported more daytime tiredness and tended to have lower pain thresholds. Despite normal sleep times in diary, TTH and NSM had increased slow-wave sleep as seen after sleep deprivation. Migraineurs in the preictal phase had shorter latency to sleep onset than controls. Except for a slight but significantly increased awakening index SM, patients differed little from controls in objective measurements. CONCLUSIONS: We hypothesize that TTH and NSM patients on the average need more sleep than healthy controls. SM patients seem more susceptible to sleep disturbances. Inadequate rest might be an attack-precipitating- and hyperalgesia-inducing factor.

Symptoms of subordinated importance in fibromyalgia when differentiating working from non-working women.

BACKGROUND: The aim was to identify differences in self-reported symptoms among working (W) and non-working (NW) women, and to determine the most important biopsychosocial variables in differentiating one group from the other. METHOD: A questionnaire was mailed to 524 members of a local chapter of the Swedish Rheumatology Association. A total of 362 persons responded (69%); 96% of which were women. Women older than 64 years and all men were excluded. The final study group consisted of 95 W, and 227 NW women. The questionnaire included data on demographics, employment, support, exercise, daily activities and symptoms. Data were analysed using univariate statistics and a partial least squares discriminant analysis (PLS-DA). RESULTS: The results showed that 41% of the W and 42% of the NW women were/had been employed in service,care or business. The NW women reported a significantly higher severity of symptoms compared with the W women. The most important variable when differentiating the W from the NW women was social support from colleagues and employers. CONCLUSION: To change prevailing attitudes and values towards persons with a work disability, a process of active intervention involving staff is needed. Educating employers as to how a disability may influence a work situation, and the importance of social support, can be improved.

Sleep quality, arousal and pain thresholds in tension-type headache: a blinded controlled polysomnographic study.

INTRODUCTION: We aimed to compare subjective and objective sleep quality in tension-type headache (TTH) patients and to evaluate the relationship between sleep quality and pain thresholds (PT) in controls and TTH patients. METHODS: A blinded cross-sectional study where polysomnography (PSG) and PT (to pressure, heat and cold) measurements were done in 20 patients with TTH (eight episodic (ETTH) and twelve chronic (CTTH) TTH) and 29 healthy controls. Sleep diaries and questionnaires were applied. RESULTS: TTH patients had more anxiety ( P = 0.001), insomnia ( P < 0.0005), daytime tiredness ( P < 0.0005) and reduced subjective sleep quality ( P < 0.0005) compared to healthy controls. Sleep diaries revealed more long awakenings in TTH ( P = 0.01) but no total sleep-time differences. TTH patients had more slow-wave sleep ( P = 0.002) and less fast arousals ( P = 0.004) in their PSGs. CTTH subjects had lower pressure PT ( P = 0.048) and more daytime sleepiness than the controls ( P = 0.039). Among TTH lower cold PT (CPT) correlated inversely with light sleep (N1) ( R = -0.49, P = 0.003) while slow arousals correlated inversely with headache-frequency ( R = -0.64, P = 0.003). CONCLUSIONS: We hypothesize that TTH patients need more sleep than healthy controls and might be relatively sleep deprived. Inadequate sleep may also contribute to increased pain sensitivity and headache frequency in TTH.

Establishing research strategies, methodologies and technologies to link genomics and proteomics to seagrass productivity, community metabolism, and ecosystem carbon fluxes.

A complete understanding of the mechanistic basis of marine ecosystem functioning is only possible through integrative and interdisciplinary research. This enables the prediction of change and possibly the mitigation of the consequences of anthropogenic impacts. One major aim of the European Cooperation in Science and Technology (COST) Action ES0609 "Seagrasses productivity. From genes to ecosystem management," is the calibration and synthesis of various methods and the development of innovative techniques and protocols for studying seagrass ecosystems. During 10 days, 20 researchers representing a range of disciplines (molecular biology, physiology, botany, ecology, oceanography, and underwater acoustics) gathered at The Station de Recherches Sous-marines et Océanographiques (STARESO, Corsica) to study together the nearby Posidonia oceanica meadow. STARESO is located in an oligotrophic area classified as "pristine site" where environmental disturbances caused by anthropogenic pressure are exceptionally low. The healthy P. oceanica meadow, which grows in front of the research station, colonizes the sea bottom from the surface to 37 m depth. During the study, genomic and proteomic approaches were integrated with ecophysiological and physical approaches with the aim of understanding changes in seagrass productivity and metabolism at different depths and along daily cycles. In this paper we report details on the approaches utilized and we forecast the potential of the data that will come from this synergistic approach not only for P. oceanica but for seagrasses in general.

Potential of the HAQ score as clinical indicator suggesting comprehensive multidisciplinary assessments: the Swedish TIRA cohort 8 years after diagnosis of RA.

This study explores the potential of the health assessment questionnaire (HAQ) score as a clinical indicator that can be used to suggest comprehensive multidisciplinary assessments, by relating it to more general aspects of disability. In a cohort of 132 patients with early RA (mean age 55, 68% women), 28 joint count Disease Activity Scores (DAS-28), HAQ, and Short Form 36 (SF-36) scores were registered at annual follow-up visits 8 years after diagnosis. The patients were tentatively sub-grouped into a high-HAQ group (HAQ ≥ 1 at the 8-year follow-up) and a low-HAQ group. The high-HAQ group, comprising 36% of the cohort, had a higher mean HAQ score at inclusion and beyond at all visits compared to the low-HAQ group, and 24% of all individual patients in the high-HAQ group had a HAQ score ≥ 1 at inclusion. Although the DAS-28 improved in both groups, patients in the high-HAQ group also had significantly more persistent disability according to the SF-36: five scales at each follow-up visit and all eight scales at the majority of the visits. Individual RA patients with HAQ ≥ 1 probably have considerable persistent disabilities according to the SF-36. The HAQ score could be used as a clinical indicator suggesting comprehensive multidisciplinary assessments of the components of disability and corresponding interventions, in addition to the established use of HAQ at group levels and in parallel with the medication strategy based on DAS-28.

Differences in activity limitation, pain intensity, and global health in patients with rheumatoid arthritis in Sweden and the USA: a 5-year follow-up.

OBJECTIVE: In this study we compared activity limitations, pain intensity, and global health in patients with rheumatoid arthritis (RA) in Sweden and the USA and aimed to determine whether nationality is associated with these outcomes. METHODS: We used longitudinal data from the 'Swedish TIRA project' (n = 149) and the University of California, San Francisco (UCSF) RA panel study (n = 85). Data were collected annually concerning use of medications [disease-modifying anti-rheumatic drugs (DMARDs), biologics, and corticosteroids], morning stiffness, number of swollen joints, and number of painful joints. Three self-reported outcome measures were examined: pain intensity measured on a 0-100 visual analogue scale (VAS), activity limitation according to the Health Assessment Questionnaire (HAQ), and global health. To analyse the data, the Student's t-test, the χ(2)-test, and the generalized estimating equation (GEE) method were used. RESULTS: Nationality was significantly related to HAQ score and pain intensity, even after adjustment for covariates. The patients in the TIRA cohort reported a lower HAQ score and a higher pain intensity than the patients in the UCSF cohort. Nationality was not related to global health. CONCLUSION: Patients with RA should be assessed with awareness of the psychosocial and cultural context because disability seems to be affected by nationality. Further knowledge to clarify how a multinational setting affects disability could improve the translation of interventions for patients with RA across nationalities.

What initiates a migraine attack? Conclusions from four longitudinal studies of quantitative EEG and steady-state visual-evoked potentials in migraineurs.

OBJECTIVES: Quantitative electroencephalograpic (QEEG) frequency spectra and steady-state visual-evoked potentials (SSVEP) are indicators of corticothalamic excitability (e.g., arousal). Increased interictal excitability is suggested to be an important element in the migraine pathophysiology. In this paper, we summarize our results from four studies of QEEG and SSVEP recordings in migraineurs interictally and in the days before an attack with the intention to shed light on attack-initiating mechanisms. MATERIAL AND METHODS: Thirty-two healthy controls, 33 migraineurs without and eight with aura each had three EEGs with photic stimulation on different days. Using the patient headache diaries, we classified the recordings as interictal, preictal, ictal, or post-ictal retrospectively. Interictal recordings were compared pairwise with attack-related EEGs from the same patient as well as with control EEGs. We also correlated clinical variables with the QEEG and SSVEP data. RESULTS: Between attacks, we found increased relative theta activity and attenuated medium-frequency photic responses in migraineurs without aura compared with those in controls. Within 36 h before the attack, slow and asymmetric EEG activity developed. Increased trigger sensitivity and photophobia correlated with higher theta power and depressed photic responses. Attack duration, migraine history duration, and pain intensity were associated with EEG slowing. CONCLUSIONS: A general tendency toward EEG slowing and depression of photic responses characterized the migraine group. This pattern was also related to increased severity of symptoms. A change in cortical activity occurred within 36 h before attacks. Our results indicate that thalamocortical hypoexcitability is associated with attack initiation and sensory hypersensitivity in migraine.

Photic EEG-driving responses related to ictal phases and trigger sensitivity in migraine: a longitudinal, controlled study.

INTRODUCTION: Photic driving is believed to be increased in migraineurs and has been interpreted as a sign of cortical hyperexcitability. However, most previous studies have included patients in various phases of the migraine cycle. The results are, therefore, difficult to interpret as neurophysiological abnormalities tend to accumulate close to the attack in migraineurs. SUBJECTS AND METHODS: We recorded steady state visual evoked EEG-responses (SSVEPs) for 6, 12, 18 and 24 Hz flash stimuli from 33 migraineurs without aura, eight migraineurs with aura and 32 healthy controls. Interictal recordings were compared pair-wise with recordings before, during and after attack, as well as with EEGs from healthy controls. Driving power was also correlated with sensory hypersensitivity and severity of migraine. RESULTS: Between attacks, driving responses to 18 Hz and 24 Hz were attenuated in migraineurs without aura. Driving power of 12 Hz increased before the attack. Attack trigger sensitivity, photophobia, pain intensity and a family history of migraine were related to decreased and/or symmetric photic driving. CONCLUSIONS: Earlier results may have overestimated the driving response in migraine due to inclusion of recordings during the preictal interval and/or habituation among controls. Abnormal photic driving may be related to the pathophysiology of clinical sensory hypersensitivity.

Returning to a changed ordinary life--families' lived experience after completing a child's cancer treatment.

The aim of the study was to illuminate the families' lived experience after completing a child's cancer treatment. The study took place at a University Hospital in southern Sweden. Interviews were carried out with 10 mothers, eight fathers, four patients and two siblings from a total of 10 families. The interviews were analysed with a hermeneutical phenomenological approach. One essential theme emerged from their stories, 'returning to a changed ordinary life--incorporating a trying and contradictory experience'. The families felt relieved that the treatment was over yet they experienced strains in their daily life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. Closeness with other people, especially their own family, was important. The previously sick children felt a loss of concern from their parents when treatment had ended, in contrast to siblings who experienced increased attention from their parents. Parents experienced being in uncharted territory and sometimes missed the security of hospital. For professionals it is important to offer the family a structured follow-up to help them in their daily life after the child's treatment is completed.