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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]

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]

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]

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]

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]

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]