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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: 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: 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]

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]

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]