Starting parenting in isolation a qualitative user-initiated study of parents’ experiences with hospitalization in Neonatal Intensive Care units during the COVID-19 pandemic

Background Worldwide, strict infection control measures including visitation regulations were implemented due to the COVID-19 pandemic at Neonatal Intensive Care Units (NICUs). These regulations gave restricted access for parents to their hospitalized infants. The consequence was limited ability to involve in the care of their infants. At Oslo University Hospital entry to NICU was denied to all except healthy mothers in March 2020. The absolute access ban for fathers lasted for 10 weeks. The aim of this study was to explore parental experiences with an infant hospitalized in the NICU during this absolute visitation ban period. Methods We invited post discharge all parents of surviving infants that had been hospitalized for at least 14 days to participate. They were interviewed during autumn 2020 using an explorative semi-structured interview approach. Data were analyzed via inductive thematic analysis. Results Nine mothers and four fathers participated. The COVID-19 regulations strongly impacted the parent’s experiences of their stay. The fathers’ limited access felt life-impacting. Parents struggled to become a family and raised their voices to be heard. Not being able to experience parenthood together led to emotional loneliness. The fathers struggled to learn how to care for their infant. The regulations might lead to a postponed attachment. On the other hand, of positive aspect the parents got some quietness. Being hospitalized during this first wave was experienced as exceptional and made parents seeking alliances by other parents. Social media was used to keep in contact with the outside world. Conclusions The regulations had strong negative impact on parental experiences during the NICU hospitalization. The restriction to fathers’ access to the NICU acted as a significant obstacle to early infant-father bonding and led to loneliness and isolation by the mothers. Thus, these COVID-19 measures might have had adverse consequences for families.publishedVersio

Parents of preterm-born children; sources of stress and worry and experiences with an early intervention programme – a qualitative study

Background Preterm-born children are at increased risk of adverse developmental outcomes, and their parents may experience increased stress levels. The Mother–Infant Transaction Program (MITP) is an early intervention that aims to enhance the parent–infant relationship and child development. The present study investigated differences in parents’ experience of stress and concerns about caring for their preterm-born child according to whether they participated in the programme. Parental satisfaction with the intervention was also explored. Methods As part of a follow-up study at 36 months, a randomized controlled trial of the MITP—14 parents of 11 children from the intervention group, and 17 parents of 14 children from the control group were interviewed by the use of semi-structured focus group interviews. The interviews were analysed thematically. Results The intervention parents reported that the knowledge, advice, guidance and emotional support given during the intervention made them feel less stressed and more confident, competent and secure caring for their preterm born child than they would otherwise have been. The control parents described feeling less involved and emotionally supported, and seemed more anxious about their child’s development than the intervention parents. All parents were vigilant and alert to their child’s needs and monitored developmental milestones carefully. Conclusion This qualitative exploration of the influences of the MITP revealed a positive impact of the intervention and seems to be an important educational and supportive initiative. Thus, reducing parental stress and enhancing confidence in the parental role

Starting parenting in isolation a qualitative user-initiated study of parents’ experiences with hospitalization in Neonatal Intensive Care units during the COVID-19 pandemic

Background Worldwide, strict infection control measures including visitation regulations were implemented due to the COVID-19 pandemic at Neonatal Intensive Care Units (NICUs). These regulations gave restricted access for parents to their hospitalized infants. The consequence was limited ability to involve in the care of their infants. At Oslo University Hospital entry to NICU was denied to all except healthy mothers in March 2020. The absolute access ban for fathers lasted for 10 weeks. The aim of this study was to explore parental experiences with an infant hospitalized in the NICU during this absolute visitation ban period. Methods We invited post discharge all parents of surviving infants that had been hospitalized for at least 14 days to participate. They were interviewed during autumn 2020 using an explorative semi-structured interview approach. Data were analyzed via inductive thematic analysis. Results Nine mothers and four fathers participated. The COVID-19 regulations strongly impacted the parent’s experiences of their stay. The fathers’ limited access felt life-impacting. Parents struggled to become a family and raised their voices to be heard. Not being able to experience parenthood together led to emotional loneliness. The fathers struggled to learn how to care for their infant. The regulations might lead to a postponed attachment. On the other hand, of positive aspect the parents got some quietness. Being hospitalized during this first wave was experienced as exceptional and made parents seeking alliances by other parents. Social media was used to keep in contact with the outside world. Conclusions The regulations had strong negative impact on parental experiences during the NICU hospitalization. The restriction to fathers’ access to the NICU acted as a significant obstacle to early infant-father bonding and led to loneliness and isolation by the mothers. Thus, these COVID-19 measures might have had adverse consequences for families

Starting parenting in isolation a qualitative user-initiated study of parents’ experiences with hospitalization in Neonatal Intensive Care units during the COVID-19 pandemic

Background: Worldwide, strict infection control measures including visitation regulations were implemented due to the COVID-19 pandemic at Neonatal Intensive Care Units (NICUs). These regulations gave restricted access for parents to their hospitalized infants. The consequence was limited ability to involve in the care of their infants. At Oslo University Hospital entry to NICU was denied to all except healthy mothers in March 2020. The absolute access ban for fathers lasted for 10 weeks. The aim of this study was to explore parental experiences with an infant hospitalized in the NICU during this absolute visitation ban period. Methods: We invited post discharge all parents of surviving infants that had been hospitalized for at least 14 days to participate. They were interviewed during autumn 2020 using an explorative semi-structured interview approach. Data were analyzed via inductive thematic analysis. Results: Nine mothers and four fathers participated. The COVID-19 regulations strongly impacted the parent’s experiences of their stay. The fathers’ limited access felt life-impacting. Parents struggled to become a family and raised their voices to be heard. Not being able to experience parenthood together led to emotional loneliness. The fathers struggled to learn how to care for their infant. The regulations might lead to a postponed attachment. On the other hand, of positive aspect the parents got some quietness. Being hospitalized during this first wave was experienced as exceptional and made parents seeking alliances by other parents. Social media was used to keep in contact with the outside world. Conclusions: The regulations had strong negative impact on parental experiences during the NICU hospitalization. The restriction to fathers’ access to the NICU acted as a significant obstacle to early infant-father bonding and led to loneliness and isolation by the mothers. Thus, these COVID-19 measures might have had adverse consequences for families

Parents of preterm-born children; sources of stress and worry and experiences with an early intervention programme - a qualitative study

Background Preterm-born children are at increased risk of adverse developmental outcomes, and their parents may experience increased stress levels. The Mother–Infant Transaction Program (MITP) is an early intervention that aims to enhance the parent–infant relationship and child development. The present study investigated differences in parents’ experience of stress and concerns about caring for their preterm-born child according to whether they participated in the programme. Parental satisfaction with the intervention was also explored. Methods As part of a follow-up study at 36 months, a randomized controlled trial of the MITP—14 parents of 11 children from the intervention group, and 17 parents of 14 children from the control group were interviewed by the use of semi-structured focus group interviews. The interviews were analysed thematically. Results The intervention parents reported that the knowledge, advice, guidance and emotional support given during the intervention made them feel less stressed and more confident, competent and secure caring for their preterm born child than they would otherwise have been. The control parents described feeling less involved and emotionally supported, and seemed more anxious about their child’s development than the intervention parents. All parents were vigilant and alert to their child’s needs and monitored developmental milestones carefully. Conclusion This qualitative exploration of the influences of the MITP revealed a positive impact of the intervention and seems to be an important educational and supportive initiative. Thus, reducing parental stress and enhancing confidence in the parental role

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol

Introduction: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. Methods and analysis: This scoping review will employ the framework of Arksey and O’Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies’ eligibility and extract data using a standardised datacharting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. Ethics and dissemination: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol

Introduction Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. Methods and analysis This scoping review will employ the framework of Arksey and O’Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies’ eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. Ethics and dissemination Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research

Non-invasive ventilation in the care of patients with chronic obstructive pulmonary disease with palliative care needs: a scoping review

Abstract Background Patients with severe chronic obstructive pulmonary disease (COPD) could have palliative care (PC) needs because of unmet needs such as dyspnoea. This may lead to anxiety and may have an impact on patients’ ability to perform daily activities of living. PC can be started when patients with COPD have unmet needs and can be provided alongside disease-modifying therapies. Non-invasive ventilation (NIV) could be an important measure to manage dyspnoea in patients with COPD in need of PC. A scoping review was conducted to gain an overview of the existing research and to identify knowledge gaps. The aim of this scoping review was to systematically map published studies on the use of NIV in patients with COPD with PC needs, including the perspectives and experiences of patients, families, and healthcare professionals (HCPs). Methods This review was conducted following the framework of Arksey and O’Malley. The reporting of the review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The review protocol was published. AMED, CINAHL, Embase, MEDLINE, PEDro, and PsycInfo were searched from inception to November 14, 2022. The included studies had to report the perspectives and experiences of COPD patients, relatives, and HCPs regarding NIV in the care of patients with COPD with PC needs. In pairs, the authors independently assessed studies’ eligibility and extracted data. The data were organised thematically. The results were discussed in a consultation exercise. Results This review included 33 papers from 32 studies. Four thematic groupings were identified: preferences and attitudes towards the use of NIV; patient participation in the decision-making process of NIV treatment; conflicting results on the perceived benefits and burdens of treatment; and heterogenous clinical outcomes in experimental studies. Patients perceived NIV as a ‘life buoy’ to keep them alive. Many patients wanted to take part in the decision-making process regarding NIV treatment but expressed varying degrees of inclusion by HCPs in such decision-making. Conflicting findings were identified regarding the perceived benefits and burdens of NIV treatment. Diversity in heterogeneous clinical outcomes were reported in experimental studies. Conclusions There is a need for more studies designed to investigate the effectiveness of NIV as a palliative measure for patients with COPD with PC needs using comprehensive outcomes. It is especially important to gain more knowledge on the experiences of all stakeholders in the use of home-based NIV treatment to these patients

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol

Introduction: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. Methods and analysis: This scoping review will employ the framework of Arksey and O’Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies’ eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. Ethics and dissemination: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research

Non-invasive ventilation in the palliative care of patients with chronic obstructive pulmonary disease: a scoping review protocol

Introduction: Patients with advanced chronic obstructive pulmonary disease (COPD) experience a great symptom burden. Breathlessness is a very frequently reported symptom that negatively affects all aspects of daily life and could lead to fear of dying. Non-invasive ventilation (NIV) could be an important palliative measure to manage breathlessness in patients with advanced COPD. We decided to conduct a scoping review to attain an overview of the existing research and to identify knowledge gaps. This scoping review aims to systematically map published studies on the use of NIV in the palliative care of COPD patients, including the perspectives and experiences of patients, families and healthcare professionals. Methods and analysis: This scoping review will employ the framework of Arksey and O’Malley. The reporting will be guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. A comprehensive and systematic search strategy will be developed in cooperation with an experienced librarian. Database searches will be conducted in AMED, PEDro, Embase, CINAHL, PsycInfo and MEDLINE in February 2021. Pairs of authors will independently assess studies’ eligibility and extract data using a standardised data-charting form. The data will be inductively summarised and organised thematically. The results will be discussed with an advisory board consisting of nurses and physicians from respiratory and intensive care units. Ethics and dissemination: Approval for the workshop with the advisory board has been attained from the Norwegian Centre for Research Data (480222), and approval will be attained from the Personal Data Protection Officers of the participating hospitals. All advisory board participants will sign an informed written consent before participation. The results could contribute to developing the body of evidence on the use of NIV in the palliative care of COPD patients and serve to identify directions for future research