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AIMS: To explore how parents experienced their child with delirium and how parents viewed our delirium management bundle. DESIGN: We conducted a qualitative exploratory descriptive study using semi-structured individual or dyad interviews. METHODS: Twelve semi-structured interviews with 16 parents of 12 critically ill children diagnosed with delirium in a paediatric intensive care unit were conducted from October 2022 to January 2023 and analysed through a reflexive thematic analysis. FINDINGS: We generated five themes: (1) knowing that something is very wrong, (2) observing manifest changes in the child, (3) experiencing fear of long-term consequences, (4) adding insight to the bundle, and (5) family engagement. CONCLUSION: The parents in our study were able to observe subtle and manifest changes in their child with delirium. This caused fear of lasting impact. The parents regarded most of the interventions in the delirium management bundle as relevant but needed individualization in the application. The parents requested more information regarding delirium and a higher level of parent engagement in the care of their child during delirium. IMPACT: This paper contributes to understanding how parents might experience delirium in their critically ill child, how our delirium management bundle was received by the parents, and their suggestions for improvement. Our study deals with critically ill children with delirium, their parents, and staff working to prevent and manage paediatric delirium (PD) in the paediatric intensive care unit. REPORTING METHOD: The consolidated criteria for reporting qualitative research guidelines were used to ensure the transparency of our reporting. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution to the research design. WHAT DOES THIS PAPER CONTRIBUTE TO THE WIDER GLOBAL COMMUNITY?: - It increases awareness of the parent's perspective on PD in critically ill children. - It shows how PD might affect parents, causing negative emotions such as distress, frustration, and fear of permanent damage. - It shows that the parents in our study, in addition to the care bundle, requested more information on delirium and more involvement in the care of their delirious child.
Subject(s)
Delirium , Intensive Care Units, Pediatric , Parents , Qualitative Research , Humans , Delirium/psychology , Parents/psychology , Male , Female , Child , Child, Preschool , Adult , Critical Illness/psychology , Patient Care Bundles , Infant , Adolescent , Middle AgedABSTRACT
BACKGROUND: Paediatric delirium (PD) is increasingly recognised as a common disorder in critically ill children with a reported prevalence ranging from 9% to 66%. We validated the PD component of the Sophia Observation withdrawal Symptoms-Paediatric Delirium (SOS-PD) scale in a Danish setting to provide increased awareness and reliable identification of this critical condition, thereby paving the way for improved pathways to targeted delirium care. OBJECTIVE: The objectives of this study were to criterion validate the PD component of the SOS-PD screening tool by comparing blinded psychiatric and nurse assessments and to estimate the prevalence of delirium in critically ill children in a Danish context. METHODS: A prospective observational study was performed on critically ill children aged between 3 m and 18 y, admitted to an intensive care unit, with a hospital stay of 48 h or more. Assessments took place on a fixed weekday over an 18-month period. To test accuracy and criterion validity, bedside nurses' SOS-PD assessments were compared to the reference standard, a diagnostic assessment performed by a child psychiatrist according to the Diagnostic and Statistical Manual-V criteria by use of the Vanderbilt Assessment of Delirium in Infants and Children. RESULTS: We included 141 children in the study, 30 (21%) of whom were diagnosed with delirium by the child psychiatrist. The accuracy of the delirium diagnosis was 93.6% (95% confidence interval [CI]: 88.3-97.1) among the nurses' SOS-PD assessments compared to the reference standard. The SOS-PD demonstrated a high sensitivity of 83.3% (95% CI: 65.3-94.4) and a high specificity of 96.4% (95% CI: 91.0-99.0) with five false-negative and four false-positive cases. CONCLUSION: The PD component of the SOS-PD tool has good accuracy and validity for assessments performed by nurses compared to a child psychiatrist's diagnosis in critically ill children in a Danish setting. We recommend the use of the SOS-PD instrument in clinical practice.
Subject(s)
Delirium , Substance Withdrawal Syndrome , Infant , Child , Humans , Child, Preschool , Delirium/epidemiology , Critical Illness , Sensitivity and Specificity , Reproducibility of Results , Intensive Care Units , DenmarkABSTRACT
Person-specific evidence was developed as a grounded theory by analyzing 20 selected case descriptions from interventions using the guided self-determination method with people with various long-term health conditions. It explains the mechanisms of mobilizing relational capacity by including person-specific evidence in shared decision-making. Person-specific self-insight was the first step, achieved as individuals completed reflection sheets enabling them to clarify their personal values and identify actions or omissions related to self-management challenges. This step paved the way for sharing these insights and challenges in a relationship with a supportive health professional, who could then rely on person-specific evidence instead of assumptions or a narrow disease perspective for shared decision-making. Trust in the evidence encouraged the supportive health professional to transfer it to the interdisciplinary team. Person-specific evidence then enhanced the ability of team members to apply general evidence in a meaningful way. The increased openness achieved by individuals through these steps enabled them to eventually share their new self-insights in daily life with other people, decreasing loneliness they experienced in self-management. Relational capacity, the core of the theory, is mobilized in both people with long-term health conditions and healthcare professionals. Further research on person-specific evidence and relational capacity in healthcare is recommended.
Subject(s)
Health Personnel , Personal Autonomy , Humans , Grounded TheoryABSTRACT
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.
Subject(s)
Critical Care , Parents , Child , Humans , Sweden , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , LanguageABSTRACT
Pain in hospitalized infants, children, and young people (ICYP) is a well-known phenomenon but remains undertreated. This study aimed to examine documented pain management practices provided for ICYP and compare practices adopted in neonatal and pediatric units. This national retrospective multi-center study was conducted in 40 of the 42 Danish neonatal and pediatric units in November 2020. Data were collected from the medical records of ICYP admitted to a participating unit. We performed a total of 846 medical record audits of which pain was assessed in 51.9% of the ICYP. Pain assessment was documented for more infants (57.8%) than for children and young people (CYP) (47.4%) (p = 0.003). CYP more often received pain treatment (37.7%) than infants (6.9%, p < 0.0001) and more frequently had a pain treatment plan (50.8% versus 10.2%, p < 0.0001). Use of non-pharmacological treatment was documented for 6.3% of the ICYP. Our findings indicate that pain assessment is insufficiently documented in Danish neonatal and pediatric units. Among cases in which pain scores indicated that the patient had experienced pain, pain treatment was documented in a larger proportion of the pediatric population than in the neonatal population.
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AIM: Investigating parent satisfaction with care is important to guide quality development. In this study, we translated and validated a Danish version of the empowerment of parents in the intensive care - neonatology (EMPATHIC-N) questionnaire to determine validity in Danish contexts. METHOD: A psychometric study design was applied. Translation was performed according to recommended international standards. Confirmatory factor analyses including standardised factor loadings, Cronbach's α reliability estimates, congruent validity and non-differential validity testing were applied. The study was performed from June 2017 to November 2019 at a 33-bed level IV neonatal intensive care unit. RESULTS: Participants were 311 parents (response rate = 42,8%). Confirmative factor analyses disclosed a moderate model fit of the instrument with Comparative Fit Index (CFI) values of 0.83-0.92. Cronbach's α showed good reliability (0.82-0.93). Congruent validity showed good positive correlations (0.48-0.71) between the instrument domains and four overall satisfaction indicators. In search of improved model fit, a version including 27 items was tested. This version showed a better model fit with CFI values of 0.92-0.99 and satisfactory Cronbach's α values. CONCLUSIONS: Model fit for the Danish full EMPATIC-N was moderate. The shorter version showed better psychometric properties.
Subject(s)
Neonatology , Infant, Newborn , Humans , Psychometrics , Reproducibility of Results , Surveys and Questionnaires , Critical Care , Parents , DenmarkABSTRACT
PROBLEM: Preterm birth is a stressful event. Paternal experiences of having a preterm infant indicate a need for tailored support. However, it is unclear which interventions work best. This review presents the evidence on existing healthcare interventions to support fathers of preterm infants in early parenthood, how effective they are and paternal experiences with the interventions. ELIGIBILITY CRITERIA: The integrative review process of Whittemore and Knafl was used to guide the study. A structured and comprehensive literature search was conducted in PubMed (MEDLINE), Embase, CINAHL, PsycInfo, Cochrane, Scopus, Web of Science, SweMed+, and Proquest Dissertation & Thesis Global. SAMPLE: A total of 18 qualitative and quantitative studies were included in the review. The Mixed Methods Appraisal Tool was used to assess quality. RESULTS: Three overall themes were identified in the analysis: 1) Skin-to-skin contact supported interaction between infant and father, 2) information impacted paternal experiences of stress, anxiety, and development of fatherhood, 3) fathers' relationships with the nurses oscillated between conflict and assistance. CONCLUSIONS: Our findings show that targeted interventions could support father-infant interaction and reduce stress among fathers of preterm infants. IMPLICATIONS: Fathers of preterm infants rely on nurses to support their engagement in early parenthood, while nurses facilitate the interventions that engage the fathers. It is also essential to develop a culture within the neonatal intensive care unit that encourages the presence of fathers and enhances educational nursing strategies for supporting fathers of preterm infants during early parenthood.
Subject(s)
Infant, Premature , Premature Birth , Male , Infant , Female , Infant, Newborn , Humans , Father-Child Relations , Fathers , Intensive Care Units, NeonatalABSTRACT
BACKGROUND: Non-pharmacologic interventions might be effective to reduce the incidence of delirium in pediatric intensive care units (PICU). AIM: To explore expert opinions and generate informed consensus decisions regarding the content of a non-pharmacologic delirium bundle to manage delirium in PICU patients. STUDY DESIGN: A two-round online Delphi study was conducted from February to April 2021. PICU experts (nurses, physicians, researchers, physical therapists, play specialists, and occupational therapists) located in Europe, North America, South America, Asia, and Australia participated. RESULTS: We developed a questionnaire based on the outcomes of a comprehensive literature search in the domains: 1) cognition support; 2) sleep support; and 3) physical activity support. Under these domains, we listed 11 strategies to promote support with 61 interventions. Participants rated the feasibility of each intervention on a 9-point Likert scale (ranging from 1 strongly disagree to 9 strongly agree). A disagreement index and panel median were calculated to determine the level of agreement among experts. In the second round, participants reassessed the revised statements and ranked the interventions in each domain in order of importance for age groups: 0-2, 3-5, and 6-18 years of age. During the first Delphi round, 53 of 74 (72%) questionnaires were completed, and in the second round 45 of 74 (61%) were completed. Five of the highest ranked interventions across the age groups were: 1) developing a daily routine, 2) adjusting light exposure according to the time of day, 3) scheduling time for sleep, 4) providing eyeglasses and hearing aids if appropriate, 5) encouraging parental presence. CONCLUSIONS: Based on expert consensus, we developed an age-specific non-pharmacologic delirium bundle of interventions to manage delirium in PICU patients. RELEVANCE TO CLINICAL PRACTICE: An age-specific Non-Pharmacological Delirium bundle is now ready to be tested in the PICU and will hopefully reduce pediatric delirium.
Subject(s)
Delirium , Humans , Child , Infant, Newborn , Delirium/therapy , Intensive Care Units, Pediatric , Sleep , Surveys and Questionnaires , Australia , Intensive Care UnitsABSTRACT
AIMS AND OBJECTIVES: The aims of the present study were investigating the feasibility of: (1) using the Danish version of Sophia Observation withdrawal Symptoms-Paediatric Delirium (SOS-PD) screening tool in clinical practice and (2) comparing SOS-PD performance to a child psychiatrist's assessment using the diagnostic criteria as a reference standard. BACKGROUND: Critically ill children risk developing delirium potentially causing discomfort and suffering. Intensive care delirium has a fluctuating course complicating detection. Systematic screening during and after intensive care is central to manage paediatric delirium. DESIGN AND METHODS: We used a descriptive and comparative design. First aim: Bedside nurses were asked to evaluate their experience of using the SOS-PD. Second aim: We compared the SOS-PD performance with the child psychiatrist assessment in 50 children aged 4 weeks to 18 years. RESULTS: Nurses found the Danish version of the SOS-PD applicable and easy to use. Of the 50 children included, 13 were diagnosed with delirium by the child psychiatrist. Consistency was found between the SOS-PD score and the child psychiatrist's assessment (88%). We found three false-negative and three false-positive SOS-PD cases. The false-negative cases could be explained by the differences in time periods for the assessments. SOS-PD assessments covered the past 4 h, whereas the psychiatric assessments covered the past 24 h. We assume the false-positive cases represent an acceptable inconsistency between the two assessment methods. CONCLUSIONS: The Danish version of the SOS-PD appeared suitable for identifying paediatric delirium. Our results emphasised the importance of assessment at least once during each nursing shift to ensure delirium detection around the clock due to the fluctuating course of delirium. RELEVANCE TO CLINICAL PRACTICE: Implementing the Danish SOS-PD may increase awareness of this critical disorder by improving systematic identification of paediatric delirium in clinical practice paving the way for improved delirium prevention and management.
Subject(s)
Delirium , Substance Withdrawal Syndrome , Child , Humans , Feasibility Studies , Delirium/diagnosis , Reproducibility of Results , Denmark , Intensive Care UnitsABSTRACT
AIMS: The aim of this study was to examine the potential association of family-centred care as perceived by parents during a NICU stay with parents' depressive symptoms at discharge and at 4 months corrected for infant age. DESIGN: A longitudinal, multicentre cohort study was conducted from 2018 to 2020 in 23 NICUs across 15 countries. METHODS: Parents (n = 635 mothers, n = 466, fathers) of infants (n = 739) born before 35 weeks of gestation and admitted to the participating NICUs were enrolled to the study during the first weeks of their infants' hospitalizations. They responded to Digi-FCC daily text messages inquiring about their perception of family-centred care provided by NICU staff. In addition, they completed a questionnaire assessing their overall perception of family-centred care at discharge. Parents' depressive symptoms were measured by the Edinburgh Postnatal Depression Scale at discharge and again after discharge when their infants were at 4 months corrected for age. RESULTS: The mothers' and the fathers' perceptions of family-centred care were associated with their depressive symptoms at discharge and at 4 months corrected age, controlling for gestational age, multiple birth, parent education and relationship status. Parents' participation in infant care, care-related decisions and emotional support provided to parents by staff explained the variation in the parents' perceptions of family-centred care. The factors facilitating the implementation of family-centred care included unlimited access to the unit for the parents and for their significant others, as well as amenities for parents. CONCLUSIONS: Our study shows that family-centred NICU care associates with parents' depressive symptoms after a NICU stay. IMPACT: Depression is common in parents of preterm infants. The provision of family-centred care may protect the mental well-being of parents of preterm infants.
Subject(s)
Intensive Care Units, Neonatal , Patient Discharge , Cohort Studies , Depression , Female , Humans , Infant , Infant, Newborn , Infant, Premature , Parents/psychologyABSTRACT
Purpose: To describe parents' views of family-centered care at a pediatric intensive care unit. Design and Methods: A qualitative descriptive study with a deductive and inductive approach was conducted based on the principles of family-centered care. Inclusion criteria were parents of children cared for at a pediatric intensive care unit for at least 48 h. Parents of children who died during the hospital stay were excluded. The sample consisted of spontaneous responses from 70 parents to five open questions in the EMpowerment of PArents in THe Intensive Care questionnaire, which was completed at discharge. The spontaneous responses were analyzed using thematic analysis. Results: The analysis of the parents' statement illuminated that partnership, the essence of family-centered care, appeared incomplete. Partnership was particularly evident regarding parents' experiences of being treated with empathy and respect. It also seemed prominent in situations where the professional team provided support to the child, parents, and family. Based on the parents' statements there was potential for development of the family-centered care approach in aspects such as decision-making concerning care and treatment, as well as improving person-centered communication on order to capture parents' experiences and needs in the highly technological pediatric intensive care unit environment. Conclusions: Although in general parents were satisfied with the care, areas for improvement were identified such as participation in decision-making about care and treatment as well as person-centered communication. The results can contribute to future quality improvement interventions focusing family centered care at pediatric intensive care units.
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BACKGROUND: Adequate pain management of preterm and sick newborn infants is a critical issue in the neonatal intensive care unit, as the infants are small and vulnerable with limited resources to deal with pain and stressful experiences. The use of pain assessment instruments, however, must be applied correctly to achieve consistency and improve continuity in care and treatment among clinicians. PURPOSE: To assess the development of neonatal intensive care unit nurses' interrater agreement in using the COMFORTneo pain assessment tool 5 years after initial implementation, and to identify items needing further development through analysis of discrepancies among nurses' COMFORTneo scores. METHODS: An evaluation study with a pre- and postdesign comparing nurses' interrater reliability in assessing infant pain using the COMFORTneo pain assessment tool at baseline and 5-year follow-up. RESULTS: Eighty-five percent of the nurses in the follow-up group (n = 26) had improved their skills 5 years after the implementation, and the improvement was significant (P < .000). We also found that interrater reliability was satisfactory (κ scores ≥0.65) for all the items of the COMFORTneo tool. However, to obtain "very good" interrater reliability (κ scores ≥0.80) 3 items were identified needing increased focus. IMPLICATIONS FOR PRACTICE: A thorough implementation of a national clinical guideline has been partially effective in ensuring that nurses used the COMFORTneo in their daily practice, which increased their competence in pain assessment. IMPLICATIONS FOR RESEARCH: Further research into the education of nurses on the efficacy of pain scales, nonpharmacologic and pharmacologic therapies, and individualized pain assessment is needed to better address pain management.
Subject(s)
Neonatal Nursing/methods , Neonatal Nursing/standards , Pain Measurement/methods , Pain Measurement/standards , Adult , Clinical Competence , Denmark , Female , Humans , Infant, Newborn , Intensive Care Units, Neonatal , Male , Middle Aged , Pain , Pain Management , Quality Improvement , Reproducibility of ResultsABSTRACT
AIMS AND OBJECTIVES: To explore how parents and nurses experience partnership in neonatal intensive care units and to identify existing barriers and facilitators to a successful partnership. BACKGROUND: Family-centred care is recommended as a frame of reference for treatment and care in neonatal intensive care units. A key element in family-centred care is partnership. Such partnerships are characterised by complex interpersonal relationships and interactions between nurses and parents/families. Partnerships therefore appear to present a significant challenge. DESIGN: A qualitative review and meta-synthesis. METHODS: Comprehensive searching in ten databases: CINAHL, PubMed (MEDLINE), EMBASE, PsycINFO, Scopus and SweMed+, OpenGrey, MedNar, Google Scholar and ProQuest Dissertations & Thesis Global. A total of 1,644 studies (after removal of duplicates) were critically assessed, and 21 studies fulfilled the inclusion criteria. A meta-aggregation was used to synthesise the findings from the studies and was methodically quality assessed with QUARI/SUMARI and PRISMA. FINDINGS: Through a meta-aggregative approach, two synthesised findings were developed: (a) co-creation of mutual knowledge and (b) developing competencies and negotiating roles. The first synthesis embraced the categories: being respected and listened to, trust and sharing knowledge, and the second synthesis embraced the categories: space to learn with guidance, encouraging and enabling, being in control. In constructing the categories, findings were identified as characteristics, barriers and facilitators to application. CONCLUSION: A successful relationship between parents and nurses can be achieved through co-creation of mutual knowledge and development of competencies and negotiation of roles. Neonatal intensive care unit nurses are in a position where they exercise power, but they can change the culture if they are aware of what seems to facilitate or create a barrier to a partnership with parents. RELEVANCE TO CLINICAL PRACTICE: This new evidence may inform a change in policies and guidelines which could be integrated into nurses' clinical practice in neonatal intensive care units.
Subject(s)
Family Nursing/methods , Intensive Care Units, Neonatal/organization & administration , Parents , Professional-Family Relations , Humans , Infant, Newborn , Qualitative ResearchABSTRACT
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.
Subject(s)
Fathers/psychology , Infant Care/psychology , Infant, Premature , Mothers/psychology , Adaptation, Psychological , Adult , Female , Home Care Services, Hospital-Based/organization & administration , Humans , Infant , Infant, Newborn , Male , Parenting/psychology , Pregnancy , Qualitative Research , SwedenABSTRACT
BACKGROUND: Adequate self-management is the cornerstone of preventing type 1 diabetes mellitus (T1DM) complications. However, T1DM self-management is challenging for young people, who often struggle during the transition from childhood to adulthood. The mobile health (mHealth) app Young with Diabetes (YWD) was developed in collaboration with young people to enhance their T1DM self-management during this transition. OBJECTIVE: The purpose of this study was to explore the influence of YWD on young people's self-management during a 12-month period. METHODS: A qualitative explorative approach was used, comprising a purposive sample of 20 young people (11 females and 9 males, ages 15 to 23 years, with app use of 3 to 64 days) from 3 pediatric and 3 adult departments. Participants were interviewed individually using a semistructured interview guide. Data were collected from January to March 2017 and analyzed using thematic analysis. RESULTS: A total of 5 themes were identified: (1) not feeling alone anymore ("we are in this together"); (2) gaining competence by sharing experiences and practical knowledge ("they know what they are talking about"); (3) feeling safer ("it's just a click away"); (4) breaking the ice by starting to share thoughts and feelings and asking for help ("it is an outstretched hand"); and (5) lack of motivating factors ("done with the app"). Young people reported that YWD promoted self-management by peer-to-peer social support, exchanging messages with health care providers, and sharing YWD with parents. Participants recommended YWD as a supplement to self-management for newly diagnosed young people with T1DM and suggested improvements in app content and functionality. CONCLUSIONS: The mHealth app YWD has the potential to support self-management. In particular, peer-to-peer support reduced feelings of loneliness and helped young people to gain knowledge and skills for managing T1DM. A need exists for alternative ways to train health care providers in using YWD and to support collaboration between young people and their parents to further improve young people's self-management of T1DM.
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BACKGROUND: Based on the Family-Centred Care philosophy, skin-to-skin contact is a key activity in neonatal care, and use of this practice is increasing also with extremely preterm infants. Little is known about parents' immediate experiences of and readiness for skin-to-skin contact, while their fragile infant may still not be 'on safe ground'. Knowledge about parents' experiences might reduce doubt and reluctance among healthcare professionals to use skin-to-skin contact with extremely preterm infants and thus increase its dissemination in practice. AIMS AND OBJECTIVES: To explore parents' immediate experiences of skin-to-skin contact with extremely preterm infants <28-week postmenstrual age. METHODOLOGICAL DESIGN: A qualitative study using thematic analysis. RESEARCH METHODS: Thirteen semi-structured interviews conducted in 2008 with 16 parents after skin-to-skin contact with their extremely preterm infants analysed using inductive thematic analysis. FINDINGS: Parents' experiences were related to the process before, during and after skin-to-skin contact and moved from ambivalence to appreciating skin-to-skin contact as beneficial for both parents and infant. The process comprised three stages: (i) overcoming ambivalence through professional support and personal experience; (ii) proximity creating parental feelings and an inner need to provide care; (iii) feeling useful as a parent and realising the importance of skin-to-skin contact. Having repeatedly gone through stages 2 and 3, parents developed an overall confidence in the value of bonding, independent of the infant's survival. CONCLUSIONS: Parents progressed from ambivalence to a feeling of fundamental mutual needs for skin-to-skin contact. Parents found the bonding facilitated by skin-to-skin contact to be valuable, regardless of the infant's survival.
Subject(s)
Infant, Premature/psychology , Kangaroo-Mother Care Method/psychology , Nuclear Family/psychology , Parent-Child Relations , Parents/psychology , Adult , Denmark , Female , Humans , Infant, Newborn , Male , Qualitative ResearchABSTRACT
REVIEW QUESTION/OBJECTIVE: The objective of this review is to identify how parents of premature infants in neonatal intensive care units (NICUs) and nurses perceive their partnership.The review questions are: how do parents of premature infants and nurses perceive their partnership during hospitalization in NICUs? What barriers and facilitators to partnership can be identified?
Subject(s)
Intensive Care Units, Neonatal , Nurse-Patient Relations , Humans , Infant, Newborn , Infant, Premature , Perception , Systematic Reviews as TopicABSTRACT
REVIEW QUESTION/OBJECTIVE: The objectives of this review are to explore parents' experiences of communication with healthcare professionals and to identify the meaningfulness of communication to parents in the neonatal intensive care unit (NICU).More specifically, the objectives are to identify.
Subject(s)
Communication , Intensive Care Units, Neonatal , Parents , Child , Health Personnel , Humans , Infant, Newborn , Systematic Reviews as TopicABSTRACT
AIMS AND OBJECTIVES: Aims of this article were (a) to explore how parents of premature infants experience guided family-centred care (GFCC), and (b) to compare how parents receiving GFCC versus standard care (SC) describe nurse-parent communication in the neonatal intensive care unit. BACKGROUND: Family-centred care (FCC) is acknowledged as fundamental to supporting parents of premature infants, and communication is central to this practice. Accordingly, nurses need good communication skills. GFCC is an intervention developed to improve nurse-parent communication in the neonatal intensive care unit. This intervention helps nurses to realize person-centred communication as an approach to optimize contemporary practice. DESIGN: Our qualitative study had a descriptive and comparative design using semi-structured interviews to explore the parent's experience of GFCC. METHODS: We conducted 10 dyad interviews with parents (n = 20) and two individual interviews with mothers of premature infants (n = 2). Parents in the intervention group versus SC group were 13 versus 9. Thematic analysis was applied. FINDINGS: GFCC was generally experienced as supportive. Three interrelated themes were identified that illustrated how the intervention helped parents cope as persons, parents and couples: (a) discovering and expressing emotions, (b) reaching a deeper level of communication, and (c) obtaining mutual understanding. In contrast, SC communication was more superficial and less structured. Factors such as inaccessibility of nurses, inability to ask for assistance and parent popularity impaired successful communication. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Our study suggested that compared to SC, GFCC provided structured delivery of supportive communication between nurses and parents of premature infants. The intervention promoted the discovery of the parents' individual preferences and concerns, which enabled more focused communication, and set the stage for better nurse-parent and parent-parent understanding. We recommend GFCC as a method to improve communication in the neonatal intensive care unit.