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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 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 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]

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]

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]

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]