Developing a supportive and palliative care intervention for patients with allogeneic stem cell transplantation: protocol of a multicentre mixed-methods study (allo-PaS).

INTRODUCTION: Although allogeneic stem cell transplantation (allo-SCT) is a curative treatment for many haematological malignancies, it is often associated with a high morbidity and mortality. Yet, little is known about the needs for supportive and palliative care among allo-SCT recipients. Moreover, targeted interventions that reduce symptom burden and suffering are still lacking. The present study aims to inform a supportive-palliative care intervention for patients with allo-SCT and their informal carers by exploring their experience and assessing their needs, especially their existential concerns, regarding four research topics: symptom burden and quality of life; coexistence of a chance for cure and a relevant risk of dying; change in goals of care; dying phase. METHODS AND ANALYSIS: This is a descriptive mixed-methods study in progress with a convergent parallel design. Data on the four research topics will be collected and analysed separately in three steps: (1) qualitative semi-structured interviews among 20 patients, 20 informal carers and 12 healthcare providers (HCPs) and focus groups among 12-24 HCPs; (2) a quantitative cross-sectional survey with validated questionnaires and self-developed questions among 100 patients, 100 informal carers and 50 HCPs; (3) a retrospective case analysis of all deceased patients who underwent an allo-SCT between 2010 and 2019, with collection of quantitative and qualitative data. The qualitative and quantitative data sets will be finally merged for comparison and interpretation. Results will serve to develop a supportive-palliative care intervention. ETHICS AND DISSEMINATION: The Ethics Commission of the Faculty of Medicine of the University of Cologne approved this study (20-1370_2). The study results will be published in peer-review journals, be presented at congresses and will be translated into clinical practice through the development of the palliative-supportive care intervention. TRIAL REGISTRATION NUMBER: DRKS00027290 (German Clinical Trials Register).

How does stress affect maternal and paternal perceptions of relationship strain after a preterm birth? Results of a retrospective survey study.

AIM: Strain on couple relationships is associated with a lower well-being. As premature birth is known to pose stress to parents, this study explores whether interparental relationship strain comes to pass within mothers and fathers during their infant's stay in a neonatal intensive care unit. METHODS: A retrospective cross-sectional survey was conducted with parents who experienced a preterm birth (September to December 2020). Linear regression was used to analyse associations between stress and relationship strain. RESULTS: The study included 437 mothers and 301 fathers. Fathers experienced lower relationship strain (M = 2.49, SD = 1.00) than mothers (M = 3.37, SD = 1.04). Overall, a significant association between relationship strain and stress due to the infant's behaviour and appearance was found for mothers (ß = 0.16, p = 0.02) and fathers, with a significantly higher association for fathers (ß = 0.27, p ≤ 0.002). With regard to parental role alterations, only mothers showed a significant association (ß = 0.21, p ≤ 0.001). CONCLUSION: Although mothers showed higher levels of stress and relationship strain, stress may also have an impact on fathers. Therefore, research should focus on stress prevention measures to meet both maternal and paternal needs.

Parental preference for webcams in neonatal intensive care units: an indicator of lacking trust?

BACKGROUND: Some neonatal intensive care units offer parents webcam systems for times when they cannot be in the ward. Leaving an infant in the ward can be challenging for parents, and trust in the neonatal healthcare professionals mitigates parents' worries of not knowing how their infant is doing while they are away. If parents lack trust in the neonatal healthcare professionals, they may attempt to compensate by using webcams. In this work, we examine whether an association exists between the parental preference to use a webcam and low trust in physicians and nursing staff. METHODS: In a nationwide, retrospective cross-sectional study, parents of infants with a birth weight below 1500 g were surveyed six to 18 months after their infant's birth. Parents who were not offered a webcam system in the ward were asked whether they would have opted for it. Trust was measured by the Trust in Physician and Trust in Nursing Staff scales. RESULTS: Of the parents who were not offered a webcam, 69% would have chosen to use a webcam if they had been granted the opportunity. The decision for or against a webcam was not significantly associated with either trust in physicians (OR = 0.654, 95% CI = 0.456, 0.937, p = .124) or trust in nursing staff (OR = 1.064, 95% CI = 0.783, 1.446, p = .932). CONCLUSIONS: While the majority of parents surveyed would opt for webcam usage, this preference should not be interpreted as an indicator of lacking trust in neonatal healthcare professionals.

Driving new technologies in hospitals: association of organizational and personal factors with the readiness of neonatal intensive care unit staff toward webcam implementation.

BACKGROUND: The use of webcam technology in neonatal intensive care units (NICUs) enables parents to see their child when the parents cannot be present at the NICU. The webcam's use has been gaining increasing attention. Lead physicians and lead nursing staff play a key role in the decision of whether to implement webcams. This study investigates factors that are associated with the readiness for the implementation of a webcam system among lead NICU staff. METHODS: A postal survey was conducted among all lead physicians and lead nursing staff in all German NICUs between December 2020 and April 2021 (total N = 416, one lead physician and one lead nursing staff per NICU, N = 208). On the basis of normalization process theory, personal (technology acceptance) and organizational (innovation climate) attributes were chosen to determine their association with the readiness for the implementation of a webcam system. The association of these factors was determined using multiple linear regression models for both lead physicians and lead nurses. RESULTS: Overall, a response rate of 66.59% (n = 277) was achieved. Technology acceptance proved to be a significant factor associated with the readiness for the implementation of a webcam system among lead physicians. Furthermore, staff already working with webcams in their NICUs indicated a significantly higher level of technology acceptance than staff without webcam experience and without any desire to use a webcam in the future. No significant association was found between innovation climate and the readiness for the implementation of a webcam system. CONCLUSIONS: Technology acceptance was identified as a factor associated with the readiness for the implementation of a webcam system. The insights from this study can be used to manage potential barriers regarding the readiness for implementation of webcams in NICUs. TRIAL REGISTRATION: The Neo-CamCare study is registered at the German Clinical Trials Register. DRKS-ID: DRKS00017755 . Date of Registration in DRKS: 25-09-2019.

Trust in medical professionals and its influence on the stress experience of parents of premature infants.

AIM: To examine parents' perceptions of stress and their trust in physicians and nursing staff and to investigate whether trust influences the parental perceptions of potential stressors resulting from their infant's hospitalisation in a neonatal intensive care unit. METHODS: Parents of very and extremely low birth weight infants were surveyed in a nationwide retrospective cross-sectional study 6-18 months after their child's birth. Parental stress was measured utilising the PSS:NICU_German/2-scales, and trust was measured by the scales Trust in Physicians and Trust in Nursing Staff. In addition to descriptive analyses, multiple linear regression models were conducted. RESULTS: The change in parents' anticipated roles was assessed as more stressful than their infant's appearance and behaviour. Trust in nursing staff significantly influenced the parental stress level. Although the level of trust in physicians was rated higher than trust in nursing staff, trust in physicians did not yield a significant effect on the parental stress experience. CONCLUSION: Efforts to foster parental trust in nursing staff may reduce the parental stress level and hence enable parents to better cope with the situation. The parental resources unleashed in this way can be employed to enhance parenting.

Webcam use in German neonatological intensive care units: an interview study on parental expectations and experiences.

BACKGROUND: To bridge the physical distance between parents and children during a neonatal intensive care unit (NICU) stay, webcams are used in few German NICUs. They allow parents to view their infant even when they cannot be present on the ward. The aim of the study was to explore the factors for and against webcam use that parents with or without webcam use encountered. METHODS: Guideline-based, semi-structured qualitative interviews were conducted in the period from September 2019 to August 2020. Interview transcripts were analysed using a category-based content analysis. The categories were generated in a combined deductive-inductive procedure. RESULTS: We interviewed 33 mothers and seven fathers. Parents with webcam experience emphasised positive aspects concerning their webcam use. Factors that increased webcam acceptance included feeling certain about the child's well-being and an increased sense of proximity. Only a few critical voices emerged from parents who had webcam experience, e.g. regarding privacy concerns. Parents who had no experience with webcam use showed ambivalence. On the one hand, they expressed a positive attitude towards the webcam system and acknowledged that webcam use could result in feelings of control. On the other hand, reservations emerged concerning an increase of mental stress or a negative influence on parental visitation behaviour. CONCLUSION: In addition to the parents' positive experiences with webcam use, results show a need within parents who lacked webcam experience. Despite some criticism, it was evident that webcam use was primarily seen as an opportunity to counteract the negative consequences of separation in the postnatal phase. TRIAL REGISTRATION: The Neo-CamCare study is registered at the German Clinical Trials Register. DRKS-ID: DRKS00017755 . Date of Registration in DRKS: 25-09-2019.

The effects of webcams on German neonatal intensive care units - study protocol of a randomised crossover trial (Neo-CamCare).

BACKGROUND: The separation of parents and their prematurely born children during care in a neonatal intensive care unit (NICU) can have far-reaching consequences for the well-being of the parents and also of the children. The aim of this study is to evaluate the use of webcams on NICUs and to conduct a systematic assessment of their possible effects on parents and clinical staff. In addition, it aims at determining the need for webcams  in German NICUs and to identify possible barriers and moderators. The development and evaluation of practical guidance for the use of webcams will enable the comprehensive education of clinical staff and parents and, as a result, is intended to mitigate any potential undesirable consequences. METHODS: The study will be based on a mixed methods approach including all groups concerned in the care. Qualitative data will be collected in interviews and focus groups and evaluated using content analysis. The collection of quantitative data will be based on written questionnaires and will aim to assess the status quo as regards the use of webcams on German NICUs and the effects on parents, physicians, and nursing staff. These effects will be assessed in a randomised cross-over design. Four NICUs will be involved in the study and, in total, the parents of 730 premature babies will be invited to take part in the study. The effects on the nursing staff, such as additional workload and interruptions in workflows, will be evaluated on the basis of observation data. DISCUSSION: This study will be the largest multicentre study known to us that systematically evaluates the use of webcams in neonatal intensive care units. The effects of the  implementation of webcams on both parents and care providers will be considered. The results provide evidence to decide whether to promote the use of webcams on NICUs or not and what to consider when implementing them. TRIAL REGISTRATION: The trial has been registered at the German Clinical Trial Register (DRKS). Number of registration: DRKS00017755 , date of registration: 25.09.2019.