Parents and nurses in a neonatal intensive care unit: the development of a mutual beneficial partnership in the care of the infant

Ph.D. Thesis, University of Oslo - Faculty of Medicine, Institute of Health and Society”Foreldre og sykepleiere på en nyfødtavdeling - utvikling av et likeverdig partnerskap i omsorgen for barnet” Studien viser hvor viktig det er umiddelbart å involvere foreldre i omsorgen for det premature barnet, og at ansvar avklares ved at sykepleier og foreldre i fellesskap blir enige om hvordan, på hvilke områder og i hvilken grad foreldre ønsker å delta. Etter fødselen og når barnet er akutt sykt vil sykepleier ta hovedansvaret mens foreldre oppfordres til å være til stede og gi barnet fysisk kontakt. Studien viser hvor krevende starten oppleves for foreldrene, og at sykepleiers tidlige involvering av far positivt påvirker både mor, barn og far. Etter hvert som barnet stabiliseres vil gradvis mer av ansvaret for pleien overføres til foreldrene. Denne prosessen med endrede ansvarsforhold oppleves som utfordrende for begge parter, og preges av spørsmål som ”hvem har ansvar for hva”, ”hvordan balansere mellom en profesjonell og en personlig relasjon”, og ”hvem bestemmer hvis foreldre og sykepleiere er uenige om hva som er best for barnet”. Nyfødtavdelingens åpenhet og gjennomsiktighet kan bidra til å skape trygghet og tillitt i denne prosessen. På den andre siden kan åpenhet være både avslørende og forpliktende og dermed øke belastningen for begge parter. Tidligere studier viser stor enighet om at familiesentrert tilnærming basert på likeverd og samarbeid er den beste tilnærming til foreldre på nyfødtavdelinger. På tross av dette er det et økende fokus på hvor komplekst dette samarbeidet kan være, og uklare roller og manglende samarbeid er ofte beskrevet. Hensikten med denne studien var å utforske hvordan foreldre og sykepleiere opplever samarbeidet, og hvordan dette utvikler seg i løpet av barnets innleggelse. Data ble innsamlet gjennom observasjoner og intervjuer av mødre, fedre og sykepleiere

”En ny hverdag”. Mødres opplevelse av hverdagen med et prematurt barn, og støtten ved en ressurshelsestasjon

The study explores mothers’ of premature infants experience of how health centers especially adapted for families with premature infants can help them to cope with everyday life after discharge from a neonatal intensive care unit. Background: Premature children are at higher risk for physical and mental health problems, which makes parenting demanding. The transition between hospital and home is a challenging period where parents may need extra support to cope with everyday life. Method: Nine mothers of premature infants receiving follow-up care at a health center especially adapted for families with premature infants were interviewed. Data were analyzed by Kvale and Brinkmann’s guidelines for text analysis. Findings: The study revealed that mothers of premature infants need to adapt to a daily life with both challenges and joys. Mothers’ sense of coping in everyday life is affected by the public health nurse’s knowledge of and experience with premature infants. Conclusion: Mothers of premature infants experience a challenging daily life after discharge from neonatal intensive care unit. A health center especially adapted for families with premature infants can help mothers cope with everyday life after discharge through availability, flexibility, expertise, facilitating a social network and focusing on mothers’ own experience of their daily life

Young people with long-term health challenges experiences in transition to adulthood: A qualitative metasynthesis

Author's accepted manuscriptThis is the peer reviewed version of the following article: Rasalingam, A., Fegran, L., Brekke, I. & Helseth, S. (2021). Young people with long-term health challenges experiences in transition to adulthood: A qualitative metasynthesis. Journal of Advanced Nursing, 77(2), 595-607 which has been published in final form at https://doi.org/10.1111/jan.14641. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Use of Self-Archived Versions. This article may not be enhanced, enriched or otherwise transformed into a derivative work, without express permission from Wiley or by statutory rights under applicable legislation. Copyright notices must not be removed, obscured or modified. The article must be linked to Wiley’s version of record on Wiley Online Library and any embedding, framing or otherwise making available the article or pages thereof by third parties from platforms, services and websites other than Wiley Online Library must be prohibited.Aims: The aim of this study was to describe the experiences of the transition to adult-hood for young people with long-term health challenges.Design: The metasynthesis approach was based on the guidelines by Sandelowski and Barroso for synthesizing qualitative research.Data sources: Seven electronic databases: CINAHL, Medline, Embase, PsycINFO, Web of Science, Scopus, and SocIndex were searched on 6–10 February 2020.Review methods: Studies were critically appraised using the Joanna Briggs criti-cal appraisal tool. Qualitative data were extracted, meta-summarised, then meta-synthesized.Findings: Nineteen qualitative studies were included in this review. Six themes il-lustrated experiences in the transition to adulthood: wishing for an ‘ordinary’ life, significance of close network, working towards independence, in need of systemic resources and services, psychosocial challenges and keeping a positive attitude.Conclusion: Young people with long-term health challenges wished for as ‘ordinary’ a life as possible in the future. In the transition to adulthood, they gradually gained more competence in self-management skills and knowledge and strived to become more independent. By having a positive attitude and using other coping strategies, young people can work on some of the difficulties they experience in this phase. However, to achieve and maintain independence young people with long-term health challenges are dependent on the support of a close network and systemic support and services.Impact: The findings highlight the need to help alleviate the fears and worries of young people with long-term health challenges and create opportunities for success-ful transition to adulthood by increased awareness and interventions from policy-makers and professionals in the health and social systemacceptedVersio

Postpartum experiences of early skin-to-skin contact and the traditional separation approach after a very preterm birth: A qualitative study among mothers

Traditional care immediately after very preterm birth separates the mother and child by the transfer of the infant to the neonatal intensive care unit. A nonseparation approach is currently being considered, allowing early skin-to-skin contact in the delivery room/postoperative care unit. This study aimed to explore mothers’ experiences of early skin-to-skin contact and traditional care. A qualitative study using individual semi-structured interviews with five mothers from each of the two groups was conducted. Content analysis revealed that both groups’ experiences were characterized by (i) mothers’ need to be affirmed of their infants’ vitality, (ii) bonding challenges, and (iii) benefits of skin-to-skin contact. We suggest that early skin-to-skin contact after very preterm births is crucial for the bonding process and mothers’ feelings of safety and well-being. When early skin-to-skin contact is infeasible, our findings reveal the significance of photos, information, and the father’s presence at the time of postpartum separation.publishedVersio

Nurse-led consultations reinforced with eHealth technology: a qualitative study of the experiences of patients with gynecological cancer

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Hverdagslivet til foreldre som har barn med utviklingsmessige funksjonshemninger

Published version of an article in the journal: Vård i Norden. Also available from the publisher at: http://www.artikel.nu/Bob/GetBob.aspx?bobID=3544Purpose: The purpose of this study was to describe and illuminate the daily life of parents who have children with developmental disabilities. Background: Up to the 1980’s most children with disabilities were institutionalized. Today these children live with their families supported by public health care services and the family’s social network. Parents experience extreme strain due to unpredictability, sleep deprivation, multiple hospitalizations and demanding caregiving procedures. Method: Semi structured interviews of four couples of parents with children from age one to six years with developmental disabilities were conducted. The interviews were taped and transcribed verbatim. Data were analyzed using Systematic Text Condensation. Findings: Four main themes were identified, “different and unpredictable daily life”, “always in a state of preparedness”, “living right now” and “challenging encounters with health professionals“. Despite parents’ challenging daily life they emphasized their positive view of caring for a child with disabilities. Conclusion: To manage their daily life parents needed to be acknowledged as valuable collaborators and experts on their child’s condition. They expressed a need for information adjusted to their child’s illness trajectory. Training family, especially grandparents, to be confident performers of caring procedures may relieve parents’ caring load. Despite a challenging daily life the parents expressed a positive and healthful attitude. To improve parents’ coping it is crucial that health professionals support the parents’ health promoting strategies as well as their need for care. Further studies on grandparents’ contribution is needed, as well as parents’ experiences of early transfer to the child’s habilitation services

Sleep and its relationship to health in parents of preterm infants: a scoping review

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Getting Physically Active by E-Bike : An Active Commuting Intervention Study

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Use of KIDSCREEN health-related quality of life instruments in the general population of children and adolescents - A scoping review

Purpose Subjectively assessing health related quality of life (HRQoL) in children and adolescents is increasingly important in the public health field. One valid and widely used generic HRQoL instrument is the KIDSCREEN questionnaire. The aim of this study was to map all studies using KIDSCREEN instruments in the general population of children and adolescents aged 6–18 years. Methods A scoping review was conducted. The search strategy was formulated according to the Preferred Reporting Items for Systematic Reviews and Scoping Reviews guidelines. The databases Cinahl, socINDEX, Medline, Embase, APA Psychinfo, Scopus, and Eric were searched in October 2021. Results In total, 1365 papers were eligible for screening, 1031 were excluded and 334 reports were read in full. 252 reports were included. KIDSCREEN studies in the general population was predominantly conducted in Europe (n = 211). Most studies (n = 179) had a cross sectional design, while few experimental studies (n = 24) were found. The three KIDSCREEN versions comprising of 10, 27 and 52 items, were equally distributed between studies. The self-reported version (n = 225) of the KIDSCREEN instrument was more prevalent than the proxy version, while few studies discussed a cut point. Study contexts reflected international trends of public health challenges, commonly including mental- and psychosocial health, physical activity, socioeconomic status, and obesity. Conclusion KIDSCREEN is widely used in cross sectional studies assessing common public health challenges. Experimental and longitudinal assessments, possibly including relevant cut offs remain mainly unexplored and are recommended for future research.publishedVersio

Sleep patterns and psychosocial health of parents of preterm and full-born infants: a prospective, comparative, longitudinal feasibility study

Background: The early birth and hospitalization of a preterm infant in neonatal intensive care unit can produce several emotional and behavioural responses including sleep problems for parents. Few studies have explored sleep and its associations with health and HRQoL over time in this vulnerable parent population. This purpose of this study was to evaluate the feasibility of a prospective, comparative, longitudinal study of the sleep patterns and psychosocial health of preterm and full-born infants’ parents during the first postpartum year. Methods: A prospective, comparative, longitudinal feasibility study was conducted. Parents of preterm infants were compared to parents of full-born infants to identify if there were differences in outcomes between the groups. The parents were instructed to wear actigraphs and complete sleep diaries for two consecutive weeks, and responded to a digital questionnaire covering stress, insomnia, fatigue, depression, social support, self-efficacy, and health-related quality of life. Survey data were collected at infant ages of 2, 6, and 12 months, actigraphy and sleep diary data were collected at infant age of 2 months only. Descriptive analysis was used to describe recruitment and attrition rates. Differences between completers and dropouts were analysed with a chi-square test (categorical data) and Mann–Whitney–Wilcoxon test for two independent samples (continuous variables). Results: Between June 2019 and March 2020, 25 parents of a preterm infant and 78 parents of a full-born infant were recruited from four neonatal intensive care units and two maternity wards, respectively, in four Norwegian hospitals. Feasibility was predefined as recruiting ≥ 75 parents each of preterm and full-born infants. The target for the full-born group was reached. However, the preterm group recruitment was challenging. Actigraphs, sleep diaries, and questionnaires were evaluated as feasible for use in a future study. Attrition rates were high in both groups at 6 and 12 months. No parent-related characteristics were associated with participation at 6 months. At 12 months, dropouts had a statistically significantly lower age in the full-born group (both parents) and higher age and body mass index in the preterm group (fathers). Conclusions: A longitudinal study is feasible; however, procedural changes, including using active methods and contacting participants, are necessary to increase the recruitment of preterm infants’ parents.publishedVersio