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Background: Kangaroo mother care including skin‐to‐skin care aims to overcome the negative effects of separating parents and infants and to increase the quality of care for infants and parents in need of neonatal care. In most cases where inter‐hospital transport is needed, the infant is placed in a transport incubator, which increases the risk of separation due to ambulance service restrictions that imply that parents are not allowed to accompany these transport trips. Aim: To illuminate parents' experiences of holding their infant in a kangaroo position during neonatal ground ambulance transport. Study design: A qualitative design with an inductive approach. Methods: A total of 11 open interviews with Swedish parents were conducted two to seven days after their infant had been transferred in a kangaroo position between hospitals. The transcribed interviews were analysed using qualitative content analysis. Results: The emerged overarching category was "an uninterrupted closeness chain." The parents experienced that holding their infant during the transport extended the time they were close to their infant. Using the kangaroo position during ground ambulance transport also created a feeling of being important as a parent, as their participation during transport was appreciated. Parents' experiences were allocated into three categories: "Strengthen the feeling of being important as a parent," "promote security and create a positive environment for the baby" and "the professionals' attitude promotes security." Conclusion and relevance for clinical practice: This knowledge about parents' experiences is important in the continued work to develop interventions that focus on promoting zero separation in neonatal care. Using kangaroo position in a safety harness during ambulance transport enhances zero separation and closeness. To encourage the implementation of kangaroo position during ambulance transport, further research is needed to address parents' experiences of zero separation during transport of infants to a higher level of care. [ABSTRACT FROM AUTHOR]

Rationale: Recovery after heart transplantation is challenging and many heart recipients struggle with various transplant-related symptoms, side-effects of immunosuppressive medications and mental challenges. Fatigue has been reported to be one of the most common and distressing symptoms after heart transplantation and might therefore constitute a barrier to self-efficacy, which acts as a moderator of self-management. Aim: To explore the prevalence of fatigue and its relationship to self-efficacy among heart recipients 1-5 years after transplantation. Research method: An explorative cross-sectional design, including 79 heart recipients due for follow-up 1-5 years after transplantation. Three different self-assessment instruments were employed; The Multidimensional Fatigue Inventory-19, Self-efficacy for managing chronic disease 6-Item Scale and The Postoperative Recovery Profile. Ethical approval: The study was approved by the Regional Ethics Board of Lund (Dnr. 2014/670-14/10) with supplementary approval from the Swedish Ethical Review Authority (Dnr. 2019-02769). Results: The reported levels of fatigue for the whole group were moderate in all dimensions of the Multidimensional Fatigue Inventory-19, with highest ratings in the General Fatigue sub-scale. Those most fatigued were the groups younger than 50 years; pretransplant treatment with Mechanical Circulatory Support; not recovered or had not returned to work. Self-efficacy was associated with the sub-dimensions Mental Fatigue (ρ = 0.649) and Reduced Motivation (ρ = 0.617), which explained 40.1% of the variance when controlled for age and gender. Study limitations: The small sample size constitutes a limitation. Conclusions: The moderate levels of fatigue reported indicate that it is not a widespread problem. However, for those suffering from severe fatigue it is a troublesome symptom that affects the recovery process and their ability to return to work. Efforts should be made to identify those troubled by fatigue to enable sufficient self-management support. [ABSTRACT FROM AUTHOR]

Background: Self-efficacy refers to a person´s confidence in carrying out treatment-related activities and constitutes the foundation of self-management as well as long-term follow-up after heart transplantation. Exploring the heart recipients´ experiences by means of self-report instruments provides healthcare professionals with valuable information on how to supply self-management support after heart transplantation. Aims: The aim was to explore self-efficacy in relation to the self-reported level of recovery and psychological wellbeing, among adult heart recipients, one to 5 years after transplantation. Methods: This cross-sectional study includes 79 heart recipients, due for follow-up one to 5 years after transplantation. Three different self-assessment instruments were employed: the self-efficacy for managing chronic disease 6-item scale; the postoperative recovery profile; and the psychological general wellbeing instrument. Results: The reported level of self-efficacy was high (median 8.3, maximum score 10). Significantly higher self-efficacy was seen among those who had returned to work (P = 0.003) and those without pre-transplant mechanical circulatory support (P = 0.033). In total, 65.5% (n = 52) reported being reasonably recovered, while 18.8% (n = 12) were not recovered. The median total psychological general wellbeing score was 108 (P 25 = 24, P 75 = 117), suggesting overall good psychological wellbeing in the whole group of heart recipients. Conclusion: The heart transplant recipients in our study had an overall high level of self-efficacy. Low self-efficacy was found among those with a low self-reported level of recovery, pre-transplant treatment with mechanical circulatory support or who had not returned to work. This is important information for transplant professionals when helping heart recipients to balance their expectations about recovery. [ABSTRACT FROM AUTHOR]

Aims and objectives: To present parents' lived experience of having a preterm infant cared for at the neonatal unit until discharge from hospital‐based neonatal home care (HNHC). Background: Becoming a parent to a preterm infant has been reported as an experience that may influence the parent's lifeworld also after discharge. Interventions have been implemented at the NICUs, for example introduction of family‐centred care aiming to reduce parent–infant separation, increased integration of the parents, to support them in their altered parental role. Design: A descriptive phenomenological interview study. Methods: Six parent couples at a NICU in Sweden were included and interviewed individually after discharge from HNHC. The interviews were analysed from the perspective of caring sciences using a descriptive phenomenological method. The study followed the consolidated criteria for reporting qualitative research (COREQ) checklist. Result: The journey from birth to discharge from hospital‐based neonatal home care affected the parents' lifeworld. The parents' experiences differed. Mothers experienced more physiological reactions that triggered feelings of existential loneliness and guilt and difficulties in combining the role of mother with partner. The fathers faced conflicts managing their partners' demands, family challenges and employers who claimed their time and energy, which negatively affected their transition into fatherhood. Both mothers and fathers experienced ambivalent feelings in the relationships with the professional staff, which was more strongly expressed by the mothers. Conclusion: It is important for healthcare providers to help parents clarify their individual needs and values in caring for a preterm infant to help them achieve parental and family well‐being. Relevance to clinical practice: These findings can guide healthcare providers to help parents improve care for their preterm infants in the NICU. Integrating a person‐centred approach such as supportive person‐centred dialogues focused on parents' individual needs might be one way to support parents. [ABSTRACT FROM AUTHOR]

The death of a parent is a life-changing event, and different programmes are developed to support children. This study explored how parental bereaved adolescents were included and (inter)acted in a Swedish support programme. The conducted ethnographic field study included six adolescents, their parents, and eight volunteers. The empirical material was thematically analysed through a theoretical lens inspired by Bourdieu. Three themes emerged: ‘Different strategies for adolescents’ inclusion in the programme,’ ‘Medico-psychological understanding of grief and suffering,’ and ‘Reproduction of the logic of the school.’ Adolescents were included in the programme through different strategies, where adults functioned as gatekeepers. The programme reproduced the school logic and was based on a medico-psychological grief/bereavement understanding. Volunteers had pedagogic authority and concomitant symbolic power, ruling adolescents to do what they must do in the meetings, silently socialising them into the medical logic. The adolescents only interacted and communicated with each other during breaks. [ABSTRACT FROM AUTHOR]

This article illuminates (inter)actions and group dynamics of adult volunteers in programs for bereaved children and parents. A focus group interview with seven volunteers in Swedish was conducted. A latent, thematic analysis was conducted, inspired by Braun and Clarke, and Goffman. Two themes were constructed: Personal despair as a motivation for establishing and consolidating voluntary involvement and The volunteers acted as an extended family. Group dynamics within the group contributed to uphold volunteers' adherence to formal and informal guidance related to the program. Strong engagement among volunteers and internal recruitment strategies contributed to uphold and consolidate the program's implementation. [ABSTRACT FROM AUTHOR]

Background: All parents in Sweden are invited to child health service (CHS) parental groups, however only 49% of the families participate. The way the parental groups are managed has been shown to be of importance for how parents experience the support and CHS nurses describe feeling insecure when running the groups. Lack of facilitation, structure and leadership might jeopardise the potential benefit of such support groups. This study describes CHS nurses' experiences of how a course in group leadership affected the way they ran their parental groups. Methods: A course in group leadership given to 56 CHS nurses was evaluated in focus group interviews 5-8months after the course. Results: The nurses felt strengthened in their group leader role and changed their leadership methods. The management of parental groups was after the course perceived as an important work task and the nurses included time for planning, preparation and evaluation, which they felt improved their parental groups. Parental participation in the activities in the group had become a key issue and they used their new exercises and tools to increase this. They expressed feeling more confident and relaxed in their role as group leaders and felt that they could adapt their leadership to the needs of the parents. Conclusions: Specific training might strengthen the CHS nurses in their group leader role and give them new motivation to fulfil their work with parental groups. Trial registration: Clinical Trials.gov ID: NCT02494128. [ABSTRACT FROM AUTHOR]

Aims and objectives To investigate the experience and personal impact of a group leadership course for child healthcare nurses. Background During their child's first year, all parents in Sweden are invited to participate in parental groups within the child health service; however, only 49% choose to participate. Despite extensive experience, child healthcare nurses find managing parental groups challenging and express a need for training in group dynamics and group leadership. Design The study was designed as a controlled study with a pretest/post-test design where the participants form their own control group. Methods A group leadership course was given to 56 child healthcare nurses and evaluated in a pre- and postintervention questionnaire, a course evaluation and an interview with the course leaders. Results The child healthcare nurses felt their group leadership skills were strengthened and the majority (96%) felt that the course had changed their way of leading parental groups. They felt that the group leader role had been clarified and that they had obtained several new tools to use in their groups. Conclusions and relevance to clinical practice Clarifying the role of group leader and adding knowledge about group leadership and dynamics seems to have increased the self-confidence for child healthcare nurses in group leadership. Improved confidence in group management might motivate the child healthcare nurses to further develop parental groups to attract the parents who currently choose not to participate. [ABSTRACT FROM AUTHOR]

Parents react differently after their child is diagnosed with type 1 diabetes, both at onset and longitudinally. The aim of this study was to describe and compare the disease impact on parents, in terms of health-related quality of life (HRQOL), parents’ satisfaction with the care received, and the child´s experience of diabetes-specific family support 2 years after the child’s diagnosis. A further aim was to compare mothers’ and fathers’ HRQOL and satisfaction with care over time from the child’s diagnosis to follow-up 2 years later. A total of 43 children and 114 parents participated. Parents independently filled in the PedsQLTMFamily Impact Module and the PedsQLTMHealth Care Satisfaction Generic Module and children over the age of 8 filled in the Diabetes Family Behavior Scale®. The results showed that mothers reported a lower level of emotional functioning than fathers (p = 0.011) and a higher degree of worry 2 years after the child’s diagnosis (p = 0.035). Parents reported an overall high satisfaction with the child’s healthcare, but mothers reported lower satisfaction concerning the satisfaction of their emotional needs (p = 0.012). There was no correlation between how children experienced parental support and their HbA1c value. However, one outlier emerged and when this was removed a significant correlation was found between HbA1c and a warmth-caring support. When a child is diagnosed with type 1 diabetes it is important to take into consideration how parents are affected longitudinally. Furthermore, it is also important to further explore what children over the age of 8 estimate as important with regard to their family support. [ABSTRACT FROM PUBLISHER]

Screening studies of a population in primary health care are sparsely reported. The aim was to describe observed atypical behaviours that may be associated with autism spectrum conditions, in a population (n = 4329) of infants at eight months. Observations were performed by paediatric nurses. An observational instrument, named SEEK developed for child health care, was used focusing on social interaction, communication, motor skills, and an interview with parents. The analysis contains descriptive statistics, correlation analysis and a logistic regression model (cut-point 8 SEEK points). Infants scoring 8 points or more were observed a second time by psychologists and judged to be in the risk zone for atypical development. Delayed reaction to stimuli and preverbal language development were significant atypical behaviours together with deficits in communication skills, the latter more often among boys than girls. However, 7% scored 4 points or more indicating minor developmental problems. Catching early signs are crucial for both proactive care and intervention. [ABSTRACT FROM PUBLISHER]

Family caregivers play a critical role in caring for children living with HIV, however, there is little knowledge about their experiences. The aim of this study was to illuminate the family caregivers’ lived experiences of caring for a child when he or she has been diagnosed with HIV and enrolled to antiretroviral treatment. Qualitative interviews with 21 family caregivers of 21 children diagnosed with HIV were analyzed using an inductive design with a hermeneutic phenomenological approach. The caregivers' experience were articulated in 5 subthemes under the main theme of “Surviving overwhelming challenges”: “Committed care-giving,” “Breaking the family life,” “Caring burdens,” “Confronting conflicts,” and “Living with worry.” Despite the difficult situation the family caregivers experienced with extensive worry, caring burdens, and disrupted family and social networks, they were committed caregivers. They were empowered by their belief in God but also by their strong belief in the child’s treatment and support from healthcare workers. The healthcare system needs to consider possible ways to support the family caregivers during child’s HIV diagnosis and treatment initiation as part of a continuum of care. [ABSTRACT FROM PUBLISHER]

The 1830s has been singled out as the decade in which the Swedish consumer market really started to expand. In the same period, cotton textile production expanded in the Gothenburg area. A small group of immigrant Jewish families played an important role in this development. The impact of Jewish merchants on the growth of the consumer goods market is consistent with international research. Their entrepreneurial activities and renewal of textile production and trade have been emphasized. This has, however, not been paid much attention to in the Swedish research. This article discusses what impact the Jewish immigrants had on the increase of the textile market in Gothenburg and its surroundings. Through a couple of case studies and examples, we want to elucidate the significance of Jewish textile production and trade: Jewish calico printers started up mass production of fashionable fabrics in the 1820s. Furthermore, Jewish merchants spread their goods to customers in the countryside in cooperation with Swedish pedlars. The authors also discuss different reasons why the Jews played such a significant role during this particular period: The role of the legislation, the Jewish textile tradition, access to capital, networks, effective distribution, a growing consumer demand, and the geographical context. [ABSTRACT FROM AUTHOR]

Background and aim When a child is diagnosed with type 1 diabetes, it is a complex and challenging situation for the whole family. The management of the disease places substantial demands on the family and they need to change their daily life. The short- and long-term impact on the family has rarely been described; therefore, the aim of this study was to describe and compare the disease impact on parents and children in terms of health-related quality of life ( HRQOL) at diagnosis and 1 year subsequent to the child's diagnosis with type 1 diabetes. A further aim was to describe and compare the parents' satisfaction with the care received. Method Sixty-nine children and their parents were included. Parents independently filled in the Peds QL™ Family Impact Module and the Peds QL™ Health Care Satisfaction Generic Module. The Peds QL™ 3.0 Diabetes Module was filled in by parents and children over the age of 5. Results Mothers reported a lower HRQOL than fathers both at the time of diagnosis (p = 0.003) and 1 year later (p = 0.041). For diabetes-specific HRQOL, children aged 5-7 years and their parents reported more worry than children and parents in older age groups (p = 0.037). Children aged 8-12 and 13-18 years reported a higher treatment adherence than mothers (p = 0.011 and p = 0.039, respectively); no differences were found between children and fathers. Both parents expressed overall satisfaction with the child's health care. Conclusion The family is affected during the first year after their child is diagnosed with type 1 diabetes. Both parents and the youngest children estimated a high degree of worry. The diabetes team needs to be aware of this and to take it into consideration. [ABSTRACT FROM AUTHOR]

Aim: To validate and evaluate the psychometric properties of the ALPS-Neo, a new pain assessment scale created for the continuous evaluation of pain and stress in preterm and sick term infants.Methods: A unidimensional scale for continuous pain, Astrid Lindgren Children's Hospital Pain Scale (ALPS 1), was developed further to assess continuous pain and stress in infants treated in the neonatal intensive care unit (NICU). The pain scale includes observations of five behaviours. A manual was created, clarifying the scoring criteria. An internal and an external panel assessed face validity. Psychometric properties were evaluated in three different steps. Inter-rater reliability was estimated from video-based assessments (n = 625) using weighted kappa statistics (test I). Inter-rater reliability was further evaluated in test II (n = 125) and test III (n = 96) by real-time assessments using the intraclass correlation coefficient (ICC) and Cronbach's alpha.Results: The final inter-rater reliability (test III) was assessed as good with ICC 0.91 for the total score and 0.62-0.81 for the five items. Cronbach's alpha showed 0.95 for the total score.Conclusion: ALPS-Neo is a new assessment tool for optimising the management of pain and stress in newborn infants in the NICU. It has proved easy to implement and user-friendly, permitting fast, reliable observations with high inter-rater reliability. [ABSTRACT FROM AUTHOR]

Aim To validate and evaluate the psychometric properties of the ALPS- Neo, a new pain assessment scale created for the continuous evaluation of pain and stress in preterm and sick term infants. Methods A unidimensional scale for continuous pain, Astrid Lindgren Children's Hospital Pain Scale ( ALPS 1), was developed further to assess continuous pain and stress in infants treated in the neonatal intensive care unit ( NICU). The pain scale includes observations of five behaviours. A manual was created, clarifying the scoring criteria. An internal and an external panel assessed face validity. Psychometric properties were evaluated in three different steps. Inter-rater reliability was estimated from video-based assessments (n = 625) using weighted kappa statistics (test I). Inter-rater reliability was further evaluated in test II (n = 125) and test III (n = 96) by real-time assessments using the intraclass correlation coefficient ( ICC) and Cronbach's alpha. Results The final inter-rater reliability (test III) was assessed as good with ICC 0.91 for the total score and 0.62-0.81 for the five items. Cronbach's alpha showed 0.95 for the total score. Conclusion ALPS-Neo is a new assessment tool for optimising the management of pain and stress in newborn infants in the NICU. It has proved easy to implement and user-friendly, permitting fast, reliable observations with high inter-rater reliability. [ABSTRACT FROM AUTHOR]

Aim: To investigate trends in mortality and morbidity in very preterm infants. Methods: Population-based perinatal register; liveborn infants 22 + 0 to 31 + 6 gestational weeks were investigated (time period 1995–2004). Time trends for mortality and common morbidities were explored using logistic regression analyses. Results: Data from 1614 liveborn infants were included. There was an increase in live born infants below 25 gestational weeks, annual odds ratio (OR) 1.15 (95% CI: 1.08–1.23) and a decrease in mortality annual OR 0.82 (95% CI: 0.69–0.98). The rates of bronchopulmonary dysplasia (BPD) and sepsis increased during the study period, annual ORs of 1.10 (95% CI: 1.04–1.17) and 1.09 (95% CI: 1.03–1.16). The duration of mechanical ventilation increased for surviving infants <25 gestational weeks (p = 0.003), while the duration of continuous positive airway pressure (CPAP) increased for infants <28 gestational weeks (p = <0.001). There were no changes in the rates of intraventricular haemorrhages (IVH, 3–4), retinopathy of prematurity (ROP, 3–5), seizures or necrotizing enterocolitis (NEC). Conclusion: During the 10-year period changes in mortality and morbidity were most pronounced for infants with GA <28 gestational weeks. The increasing rate of sepsis was present in infants <28 gestational weeks, whereas the increase in BPD was demonstrated in the whole study population <32 gestational weeks. [ABSTRACT FROM AUTHOR]

Aim: To describe fathers' lived experiences of caring for their preterm infant at the neonatal unit and in hospitalbased neonatal home care after the introduction of an individualised parental support programme. Method: Seven fathers from a larger study were included due to their rich narrative interviews about the phenomenon under study. The interviews took place after discharge from neonatal home care. The theoretical perspective was descriptive phenomenology. Giorgi's outlines for phenomenological analysis were used. Findings The general structure of the phenomenon was described by the following four themes: The partner was constantly present in the fathers' minds; The fathers' were occupied by worries and concerns; The fathers felt that they were an active partner to the professionals and Getting the opportunity to take responsibility. The fathers were satisfied with the support and treatment during their infant's hospitalisation. However, there were times when they felt excluded and not fully responsible for their infant. The fathers prioritised the mother, thus ignoring their own needs. Furthermore, they worried about their infant's health and the alteration of their parental role. Neonatal home care was experienced as a possibility to regain control over family life. Conclusion: The general structure of fathers' experiences highlights the importance of professionals becoming more responsive to fathers' needs and to tailoring support to fathers by focusing on their individual experiences and needs. [ABSTRACT FROM AUTHOR]

Very early precursors of disrupted social behaviours are significant to understanding the possibility of mitigating or changing behaviours through interventions. Spontaneous play situations between infant and parent in two groups of infants aged 8.5–9 months were observed. First, a large number of videos were analysed to develop an observational schedule of play behaviour. Second, 135 videos were used in the comparison of atypical (AT; n = 23) and typically developed (TD; n = 22) infants. Frequency and duration of infants' orientation towards the parent's eye zone was significantly higher among TD infants than AT, indicating a stronger social gaze behaviour. Both groups were as competent at screening the surroundings, grabbing, and looking at toys. Finding may indicate an equal competence at reacting to reflexive stimuli. The quality of gaze behaviour provides important information for child healthcare professionals and parents when deciding whether to start supportive intervention or diagnostic investigation. [ABSTRACT FROM AUTHOR]

Background: One way to measure quality of care is by measuring satisfaction of provided care among patients and their families. EMpowerment of PArents in THe Intensive Care 30 (EMPATHIC‐30) is a self‐reported questionnaire grounded on the principles of FCC aiming to measure parents' satisfaction with paediatric intensive care. There is lack of Swedish questionnaires measuring satisfaction with paediatric intensive care based on family‐centered care principles. Aim: The aim was to translate the instrument EMpowerment of PArents in THe Intensive Care 30 (EMPATHIC‐30) into the Swedish language and evaluate psychometrically the Swedish version in a paediatric intensive care context. Methods: The instrument EMPATHIC‐30 was translated and adapted to Swedish context, thereafter, assessed by expert panels consisting of nurses (panel one; n = 4; panel two; n = 24) and parents (n = 8) with experience in paediatric intensive care. Construct validity, item characteristics and reliability were tested in a cohort of 97 parents whose child had been treated for at least 48 h at two out of four Paediatric Intensive Care Unit (PICUs) in Sweden. Parents whose child died during hospitalisation were excluded. Results: The Swedish version of EMPATHIC‐30 showed an acceptable internal consistency with Cronbach's alpha coefficient for the total scale 0.925. Cronbach's alpha on the domain level varied between 0.548–0.792 with the lowest coefficient in the domain Organisation. Inter‐scale correlation revealed acceptable correlations for both subscales (0.440–0.743) and between total scale and subscales (0.623–0.805), which demonstrated good homogeneity for the instrument in its entirety. One problem regarding the domain Organisation and especially the item "It was easy to contact the pediatric intensive care unit by telephone" was revealed, which indicated that the item needs to be reformulated or that the factor structure needs to be further evaluated. Conclusion: The findings from the current study indicated that the Swedish version of EMPATHIC‐30 has acceptable psychometric properties and can be used in Swedish PICUs. Using EMPATHIC‐30 in clinical practice can give an indication of the overall quality of family‐centered care at the PICU. [ABSTRACT FROM AUTHOR]

Introduction: Attrition from antiretroviral therapy (ART) programmes is a critical challenge among children receiving care in resource-limited settings. Our objective was to determine the rates and predictors of attrition among children on ART in Ethiopia. Methods: Between December 2014 and September 2016, we conducted a prospective cohort study in eight health facilities in Ethiopia. Eligibility criteria included age 3 months–14 years; being on ART for not more than a month. Outcome was attrition due to death and/or loss to follow-up. Predictor variables were child clinical and socio-demographic characteristics, and caregiver socio-demographic characteristics. We used Cox Regression analyses to examine the association between predictors and outcome. Results: Of 309 children, 304 were included, 52% were male. Their median age was 9 years (Inter-quartile range, IQR, 6–12). At ART initiation, their median CD4 was 362 cells/mm3 (IQR 231–499); and 74.3% had WHO stage 1 or 2 disease. During 287.7 person-years of observation (PYO), 24 attritions were recorded, yielding an attrition rate of 8.3 per 100 PYO (95% CI 5.4–12.1). Of these, six children were reported dead, leading to a mortality rate of 2.1 per 100 PYO (95% CI 0.8–4.3). Eighteen were lost to follow-up (LTFU) leading to LTFU rate of 6.26 per 100 PYO (95% CI: 3.83–9.70). The majority, 14 (58%) of attrition occurred during the first six months of treatment. Age below three years [aHR] = 5.14 (95% CI: 2.07–12.96), rural residence (aHR = 3.97, 95% CI: 1.34–11.78) and baseline Hgb in g/dl < 10 g/dl [aHR] = 5.68 (95% CI: 2.03–6.23) predicted higher risk of attrition. Baseline Hgb < 10 g/dl (aHR = 16.63, 95% CI: 1.64–168.4) and WHO stage III or IV (aHR = 12.25, 95% CI: 1.26–119.05) predicted the death of the child. Higher attrition was documented among children of both biological parents alive and biologically related close family caregivers. Conclusion: Younger children, those from rural areas, and children with anaemia were at higher risk of attrition, especially during the early months of treatment, and therefore should be prioritized during treatment follow-up. Further studies should examine underlying reasons for higher attrition. [ABSTRACT FROM AUTHOR]

To achieve optimal virologic suppression for children undergoing antiretroviral therapy (ART), adherence must be excellent. This is defined as taking more than 95% of their prescribed doses. To our knowledge, no study in Ethiopia has evaluated the level of treatment adherence at the beginning of the child’s treatment. Our aim was therefore to evaluate caregiver-reported ART non-adherence among children and any predictors for this during the early course of treatment. We conducted a prospective cohort study of 306 children with HIV in eight health facilities in Ethiopia who were registered at ART clinics between 20 December 2014 and 20 April 2015. The adherence rate reported by caregivers during the first week and after a month of treatment initiation was 92.8% and 93.8%, respectively. Our findings highlight important predictors of non-adherence. Children whose caregivers were not undergoing HIV treatment and care themselves were less likely to be non-adherent during the first week of treatment (aOR = 0.17, 95% CI: 0.04, 0.71) and the children whose caregivers did not use a medication reminder after one month of treatment initiation (aOR = 5.21, 95% CI: 2.23, 12.16) were more likely to miss the prescribed dose. Moreover, after one month of the treatment initiation, those receiving protease inhibitor (LPV/r) or ABC-based treatment regimens were more likely to be non-adherent (aOR = 12.32, 95% CI: 3.25, 46.67). To promote treatment adherence during ART initiation in children, particular emphasis needs to be placed on a baseline treatment regimen and ways to issue reminders about the child’s medication to both the health care system and caregivers. Further, large scale studies using a combination of adherence measuring methods upon treatment initiation are needed to better define the magnitude and predictors of ART non-adherence in resource-limited settings. [ABSTRACT FROM PUBLISHER]

Background: Children with down syndrome (DS) are breastfed to a lesser extent than infants in general, despite research showing that it is possible for these children to breastfeed successfully. Aim: The aim was to describe how mothers of children with DS experienced breastfeeding and breastfeeding support from healthcare professionals. Method: A qualitative study with an inductive approach. Individual interviews were performed with seven mothers from southern Sweden. The interviews were analysed using qualitative content analysis. Result: The mothers felt that the support varied, as some healthcare professionals were supportive, while others had preconceptions regarding breastfeeding and DS. They also experienced that the guidelines could be an obstacle in the encounter with healthcare professionals thereby affecting the possibility to establish breastfeeding. Information and support were important to the mothers, and when insufficient, they turned to the internet for help. Conclusions: Mothers felt that healthcare professionals were bound to ward routines and guidelines, which could be contrary to their own and the family's wishes. They were also sensitive to the attitudes of healthcare professionals, which can affect their own state of mind. Healthcare professionals' preconceptions regarding breastfeeding and DS have not changed, despite research showing that infants with DS can breastfeed successfully. Increased awareness of the possibility to breastfeed an infant with DS is needed to provide better support to mothers. [ABSTRACT FROM AUTHOR]

Background: The positive effects of Kangaroo mother care in NICU's are well documented but, to a lesser extent, explored during inter‐hospital neonatal transport. Inter‐hospital transport, with the infant placed in a transport incubator, increases the risk of separation while infants in Kangaroo mother care position implies that the parents accompany the transport. There exists limited knowledge if physiological stability differs when transported in Kangaroo mother care position compared to transport in a transport incubator. Aims: The aim of this study was to compare physiological stability of infants transported via ground ambulance in either Kangaroo mother care position or positioned in a transport incubator. Method: In total, 24 infants were recruited to be transported between hospitals in either a Kangaroo mother care position (n = 16) or in a transport incubator (n = 8). Inclusion criteria were; current weight >1500 g; current gestational age above 31+0 weeks; no central catheter; no respiratory support and no planed painful or distressing interventions during the 48‐h follow‐up period post‐transport. Exclusion criteria were; infants whose parents did not speak or understand Swedish or English and infants with a current weight above 4500 g for the KMC group. Physiological stability was obtained during transport and for a 48‐h follow‐up period by measuring body temperature, respiratory and heart rate, oxygen saturation, pain score, transport risk assessment and number of interventions during transport and 48‐h post‐transport. Cost‐effectiveness and adverse events were also evaluated. Results: Both groups had comparable background characteristics and physiological stability during transport and for the 48‐h follow‐up period after transport. Transporting in Kangaroo mother care position was more cost‐effective. Study limitation: A small sample size in both groups. Conclusion: Transporting an infant in Kangaroo mother care position can be regarded as a choice of transport mode when the infant fulfils the set criteria. [ABSTRACT FROM AUTHOR]

Aim The aim was to translate the Parental Stressor Scale: Neonatal Intensive Care Unit ( PSS: NICU) into the Swedish language and to evaluate the psychometric properties of the Swedish version. Method The PSS: NICU was translated into Swedish using the process of forward-backward translation. Thereafter, an internal panel of neonatal nurses (n = 10) assessed face and content validity and a panel of parents (n = 10) assessed content validity. A sample of 95 parents recruited from three different neonatal units completed the PSS: NICU and answered some open-ended questions in which they could comment on language and wording. There were eight new items in the PSS: NICU, compared with the very first version of the instrument. These had not been psychometrically tested previously. In this study, the subscales and total scale were analysed both with and without the new items to determine whether or not to use them. Psychometric properties including internal consistency, Cronbach's alpha (if item deleted) and corrected item total were evaluated. Result The result indicates that the Swedish version of PSS: NICU, both with and without the nonvalidated items, has acceptable psychometric properties and can be used in clinical practice in NICUs in Sweden. Conclusion In order to meet the psychological needs of parents, healthcare professionals need to identify risk factors in the Neonatal Intensive Care Unit that contribute to stress amongst parents. The Swedish version of the PSS: NICU can be used for this purpose. [ABSTRACT FROM AUTHOR]

Background: Knowledge of experiences from prostate cancer is sparse in a longitudinal perspective. From a nursing perspective, results from combined qualitative and quantitative studies are lacking however would present the broadest knowledge base for best practice. Present descriptions of medical-physical symptoms such as urinary, bowel and sexual dysfunction from quantitative inquiries need be complemented with qualitative results. Such knowledge is essential in relation to treatment and communication with patients over the years and not only shortly after surgery. Methods: A longitudinal study was formatted to investigate general and specific health quality and sense of coherence quantitative alterations over three years. A general health quality module (EORTC QLC-C30) and a disease-specific module (EORTC PR-25) were applied for the longitudinal study together with the Orientation to life questionnaire (SOC), measuring a persons' sense of coherence. In order to strengthen reliability and compensate for low participation we used the Directed content analysis for interviewing and analysis. The method allows using findings from earlier research when interviewing along with detecting new areas. Twenty-one men were followed over three years and six of them, in the third year, accepted to be interviewed. Results: We found high quality of life ratings and extended the study with follow-up interviews in year three, to investigate whether questionnaire results were in line with interview findings. We found high life quality and functioning ratings that were in line with qualitative descriptions. Interview analysis showed retrieval of life as lived before, yet in a different way, the men never forgot the diagnosis event, had a unique illness history worth hearing, and had come to terms with most treatment-related shortcomings. Sense of coherence ratings were medium to high and confirmed stability over time in comprehensibility, manageability and meaningfulness after prostate cancer treatment. Conclusions: Over the years, the men's negative experiences from shifted into 'a good life' though in a different way than before. The interpretation is supported in the study by quantitative results showing a high degree of functioning. The men's sense of coherence seamed to support their handling of life three years after prostate cancer treatment. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the impact on parental stress of an individualised neonatal parent support programme. Method: A quasi‐experimental design. Parents of preterm infants, at a level II NICU, were consecutively assigned to a control group (n = 130) and to an intervention group (n = 101). The programme focused on person‐centred communication and consisted of four individual nurse–parent dialogues during the infants' hospitalisation. The Swedish version of the Parental Stressor Scale: Neonatal Intensive Care Unit was used to assess parental stress. Result: The total stress scores did not vary significantly between the control and intervention groups either for mothers or for fathers. However, on item‐level, some items were significantly more distressed for mothers in the control group compared to the intervention group; other sick babies being cared for in the room (p = 0.016); my baby's unusual or abnormal breathing patterns (p = 0.025); not being able to hold my baby (p = 0.014); sometimes forgetting what my baby looks like (p = 0.042); being afraid of touching or holding my baby (p = 0.030); feeling the staff is closer to my baby than I am (p = 0.006). Comparing stress between mothers and fathers in the control group demonstrated a significant higher overall stress level for mothers compared to fathers (p < 0.005). The same result was found in the subscales Infant's behaviour and appearance (p = 0.016) as well as Parental role alteration (p = 0.001). No significant differences revealed between parents in the intervention group except for one item not being able to feed the babies themselves. It was significantly more distressed for mothers (p < 0.001). Conclusion: In this study, there was a decreased stress experience on item level in different subscales amongst mothers, but the study did not demonstrate any impact of the intervention on total stress experience either for mothers or for fathers. [ABSTRACT FROM AUTHOR]

Importance: Active perinatal care increases survival of extremely preterm infants; however, improved survival might be associated with increased disability among survivors.Objective: To determine neurodevelopmental outcome in extremely preterm children at 2.5 years (corrected age).Design, Setting, and Participants: Population-based prospective cohort of consecutive extremely preterm infants born before 27 weeks of gestation in Sweden between 2004 and 2007. Of 707 live-born infants, 491 (69%) survived to 2.5 years. Survivors were assessed and compared with singleton control infants who were born at term and matched by sex, ethnicity, and municipality. Assessments ended in February 2010 and comparison estimates were adjusted for demographic differences.Main Outcomes and Measures: Cognitive, language, and motor development was assessed with Bayley Scales of Infant and Toddler Development (3rd edition; Bayley-lll), which are standardized to mean (SD) scores of 100 (15). Clinical examination and parental questionnaires were used for diagnosis of cerebral palsy and visual and hearing impairments. Assessments were made by week of gestational age.Results: At a median age of 30.5 months (corrected), 456 of 491 (94%) extremely preterm children were evaluated (41 by chart review only). For controls, 701 had information on health status and 366 had Bayley-lll assessments. Mean (SD) composite Bayley-III scores (cognition, 94 [12.3]; language, 98 [16.5]; motor, 94 [15.9]) were lower than the corresponding mean scores for controls (cognition, 104 [10.6]; P < .001; adjusted difference in mean scores, 9.2 [99% CI, 6.9-11.5]; language, 109 [12.3]; P < .001; adjusted difference in mean scores, 9.3 [99% Cl, 6.4-12.3]; and motor, 107 [13.7]; P < .001; adjusted difference in mean scores, 12.6 [99% Cl, 9.5-15.6]). Cognitive disability was moderate in 5% of the extremely preterm group vs 0.3% in controls (P < .001) and it was severe in 6.3% of the extremely preterm group vs 0.3% in controls (P < .001). Language disability was moderate in 9.4% of the extremely preterm group vs 2.5% in controls (P < .001) and severe in 6.6% of the extremely preterm group vs 0% in controls (P < .001). Other comparisons between the extremely preterm group vs controls were for cerebral palsy (7.0% vs 0.1%; P < .001), for blindness (0.9% vs 0%; P = .02), and for hearing impairment (moderate and severe, 0.9% vs 0%; P = .02, respectively). Overall, 42% (99% CI, 36%-48%) of extremely preterm children had no disability, 31% (99% CI, 25%-36%) had mild disability, 16% (99% CI, 12%-21%) had moderate disability, and 11% (99% CI, 7.2%-15%) had severe disability. Moderate or severe overall disability decreased with gestational age at birth (22 weeks, 60%; 23 weeks, 51%; 24 weeks, 34%; 25 weeks, 27%; and 26 weeks, 17%; P for trend < .001).Conclusions and Relevance: Of children born extremely preterm and receiving active perinatal care, 73% had mild or no disability and neurodevelopmental outcome improved with each week of gestational age. These results are relevant for clinicians counseling families facing extremely preterm birth. [ABSTRACT FROM AUTHOR]

The article presents a research which aims to analyze the neurodevelopment outcome in preterm children during the age of around two and half years. It is mentioned that population-based prospective cohort analysis was conducted of extremely preterm infants in Sweden. It is mentioned that language, motor and cognitive development was analyzed using Bayley Scales of Infant and Toddler Development. Also use of parental questionnaires and clinical examination for diagnosing the cerebral palsy is mentioned. Medical statistics are discussed in the results.