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1.
J Perianesth Nurs ; 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38958626

RESUMO

PURPOSE: The purpose of this study was to describe the experiences of critical care nurses (CCNs) and registered nurse anesthetists (RNAs) when monitoring and observing infants and toddlers recovering from anesthesia. DESIGN: A qualitative design with a critical incident approach. METHODS: Semistructured individual interviews were conducted with a purposeful sample of CCNs and RNAs (n = 17) from postanesthesia care units at two hospitals. The critical incident technique approach was used to guide the interviews, and data were analyzed inductively using thematic analysis. FINDINGS: The main finding was the CCNs' and RNAs' description of how they "watch over the children and stay close" to provide emotional and physical safety. CCNs' and RNAs' experiences of observing and managing the children's small, immature airways were reflected in the theme "using situation awareness of the small, immature airways." The theme "understanding emergence agitation" describes the challenge that arises when children are anxious, feel insecure, and have pain, and the theme "having parents nearby" shows the necessity and value of involving parents in their children's care. CONCLUSIONS: Findings from this study suggest that caring for infants and toddlers recovering from anesthesia requires experience and both technical and nontechnical skills. These are prerequisites for achieving readiness for planning, setting priorities, and adapting one's behavior if an adverse event occurs. Alertness and the ability to solve acute problems and make quick decisions are essential because of the risks associated with children's small, immature airways, as is the ability to understand and respond to emergence agitation. Having parents nearby is equally important for creating the conditions for compassionate child- and family-centered care.

2.
Death Stud ; 47(9): 1061-1071, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36601887

RESUMO

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.


Assuntos
Motivação , Voluntários , Humanos , Adulto , Criança , Grupos Focais , Pais , Família Estendida
3.
Scand J Caring Sci ; 37(3): 805-811, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-36951241

RESUMO

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.


Assuntos
Cuidados Críticos , Pais , Criança , Humanos , Suécia , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Idioma
4.
Omega (Westport) ; : 302228231185802, 2023 Jun 23.
Artigo em Inglês | MEDLINE | ID: mdl-37353971

RESUMO

The death of a parent is a life-changing event, and different programmes are developed to support children. This study explored how parental bereaved adolescents were included and (inter)acted in a Swedish support programme. The conducted ethnographic field study included six adolescents, their parents, and eight volunteers. The empirical material was thematically analysed through a theoretical lens inspired by Bourdieu. Three themes emerged: 'Different strategies for adolescents' inclusion in the programme,' 'Medico-psychological understanding of grief and suffering,' and 'Reproduction of the logic of the school.' Adolescents were included in the programme through different strategies, where adults functioned as gatekeepers. The programme reproduced the school logic and was based on a medico-psychological grief/bereavement understanding. Volunteers had pedagogic authority and concomitant symbolic power, ruling adolescents to do what they must do in the meetings, silently socialising them into the medical logic. The adolescents only interacted and communicated with each other during breaks.

5.
Scand J Caring Sci ; 36(4): 1156-1164, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35582826

RESUMO

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.


Assuntos
Aleitamento Materno , Síndrome de Down , Lactente , Feminino , Gravidez , Criança , Humanos , Conhecimentos, Atitudes e Prática em Saúde , Mães , Cuidado Pós-Natal , Pesquisa Qualitativa
6.
Scand J Caring Sci ; 36(4): 997-1005, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34008205

RESUMO

BACKGROUND: The positive effects of Kangaroo mother care in NICU's are well documented but, to a lesser extent, explored during inter-hospital neonatal transport. Inter-hospital transport, with the infant placed in a transport incubator, increases the risk of separation while infants in Kangaroo mother care position implies that the parents accompany the transport. There exists limited knowledge if physiological stability differs when transported in Kangaroo mother care position compared to transport in a transport incubator. AIMS: The aim of this study was to compare physiological stability of infants transported via ground ambulance in either Kangaroo mother care position or positioned in a transport incubator. METHOD: In total, 24 infants were recruited to be transported between hospitals in either a Kangaroo mother care position (n = 16) or in a transport incubator (n = 8). Inclusion criteria were; current weight >1500 g; current gestational age above 31+ 0  weeks; no central catheter; no respiratory support and no planed painful or distressing interventions during the 48-h follow-up period post-transport. Exclusion criteria were; infants whose parents did not speak or understand Swedish or English and infants with a current weight above 4500 g for the KMC group. Physiological stability was obtained during transport and for a 48-h follow-up period by measuring body temperature, respiratory and heart rate, oxygen saturation, pain score, transport risk assessment and number of interventions during transport and 48-h post-transport. Cost-effectiveness and adverse events were also evaluated. RESULTS: Both groups had comparable background characteristics and physiological stability during transport and for the 48-h follow-up period after transport. Transporting in Kangaroo mother care position was more cost-effective. STUDY LIMITATION: A small sample size in both groups. CONCLUSION: Transporting an infant in Kangaroo mother care position can be regarded as a choice of transport mode when the infant fulfils the set criteria.


Assuntos
Método Canguru , Humanos , Criança , Recém-Nascido , Suécia , Ambulâncias , Unidades de Terapia Intensiva Neonatal , Incubadoras
7.
Nurs Crit Care ; 27(3): 384-391, 2022 05.
Artigo em Inglês | MEDLINE | ID: mdl-34235818

RESUMO

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.


Assuntos
Método Canguru , Ambulâncias , Criança , Emoções , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Pais
8.
Scand J Caring Sci ; 35(4): 1301-1308, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33369757

RESUMO

RATIONALE: Recovery after heart transplantation is challenging and many heart recipients struggle with various transplant-related symptoms, side-effects of immunosuppressive medications and mental challenges. Fatigue has been reported to be one of the most common and distressing symptoms after heart transplantation and might therefore constitute a barrier to self-efficacy, which acts as a moderator of self-management. AIM: To explore the prevalence of fatigue and its relationship to self-efficacy among heart recipients 1-5 years after transplantation. RESEARCH METHOD: An explorative cross-sectional design, including 79 heart recipients due for follow-up 1-5 years after transplantation. Three different self-assessment instruments were employed; The Multidimensional Fatigue Inventory-19, Self-efficacy for managing chronic disease 6-Item Scale and The Postoperative Recovery Profile. ETHICAL APPROVAL: The study was approved by the Regional Ethics Board of Lund (Dnr. 2014/670-14/10) with supplementary approval from the Swedish Ethical Review Authority (Dnr. 2019-02769). RESULTS: The reported levels of fatigue for the whole group were moderate in all dimensions of the Multidimensional Fatigue Inventory-19, with highest ratings in the General Fatigue sub-scale. Those most fatigued were the groups younger than 50 years; pretransplant treatment with Mechanical Circulatory Support; not recovered or had not returned to work. Self-efficacy was associated with the sub-dimensions Mental Fatigue (ρ = -0·.649) and Reduced Motivation (ρ = -0·617), which explained 40·1% of the variance when controlled for age and gender. STUDY LIMITATIONS: The small sample size constitutes a limitation. CONCLUSIONS: The moderate levels of fatigue reported indicate that it is not a widespread problem. However, for those suffering from severe fatigue it is a troublesome symptom that affects the recovery process and their ability to return to work. Efforts should be made to identify those troubled by fatigue to enable sufficient self-management support.


Assuntos
Transplante de Coração , Autoeficácia , Estudos Transversais , Humanos , Qualidade de Vida , Suécia
9.
Scand J Caring Sci ; 35(4): 1143-1151, 2021 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33179339

RESUMO

AIM: To describe fathers' lived experiences of caring for their preterm infant at the neonatal unit and in hospital-based neonatal home care after the introduction of an individualised parental support programme. METHOD: Seven fathers from a larger study were included due to their rich narrative interviews about the phenomenon under study. The interviews took place after discharge from neonatal home care. The theoretical perspective was descriptive phenomenology. Giorgi's outlines for phenomenological analysis were used. Findings The general structure of the phenomenon was described by the following four themes: The partner was constantly present in the fathers' minds; The fathers' were occupied by worries and concerns; The fathers felt that they were an active partner to the professionals and Getting the opportunity to take responsibility. The fathers were satisfied with the support and treatment during their infant's hospitalisation. However, there were times when they felt excluded and not fully responsible for their infant. The fathers prioritised the mother, thus ignoring their own needs. Furthermore, they worried about their infant's health and the alteration of their parental role. Neonatal home care was experienced as a possibility to regain control over family life. CONCLUSION: The general structure of fathers' experiences highlights the importance of professionals becoming more responsive to fathers' needs and to tailoring support to fathers by focusing on their individual experiences and needs.


Assuntos
Pai , Serviços de Assistência Domiciliar , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Masculino , Mães , Pais
10.
J Clin Nurs ; 28(15-16): 2966-2978, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31017322

RESUMO

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.


Assuntos
Pai/psicologia , Cuidado do Lactente/psicologia , Recém-Nascido Prematuro , Mães/psicologia , Adaptação Psicológica , Adulto , Feminino , Serviços Hospitalares de Assistência Domiciliar/organização & administração , Humanos , Lactente , Recém-Nascido , Masculino , Poder Familiar/psicologia , Gravidez , Pesquisa Qualitativa , Suécia
11.
Scand J Caring Sci ; 33(3): 677-687, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-30735266

RESUMO

AIM: To evaluate the impact on parental stress of an individualised neonatal parent support programme. METHOD: A quasi-experimental design. Parents of preterm infants, at a level II NICU, were consecutively assigned to a control group (n = 130) and to an intervention group (n = 101). The programme focused on person-centred communication and consisted of four individual nurse-parent dialogues during the infants' hospitalisation. The Swedish version of the Parental Stressor Scale: Neonatal Intensive Care Unit was used to assess parental stress. RESULT: The total stress scores did not vary significantly between the control and intervention groups either for mothers or for fathers. However, on item-level, some items were significantly more distressed for mothers in the control group compared to the intervention group; other sick babies being cared for in the room (p = 0.016); my baby's unusual or abnormal breathing patterns (p = 0.025); not being able to hold my baby (p = 0.014); sometimes forgetting what my baby looks like (p = 0.042); being afraid of touching or holding my baby (p = 0.030); feeling the staff is closer to my baby than I am (p = 0.006). Comparing stress between mothers and fathers in the control group demonstrated a significant higher overall stress level for mothers compared to fathers (p < 0.005). The same result was found in the subscales Infant's behaviour and appearance (p = 0.016) as well as Parental role alteration (p = 0.001). No significant differences revealed between parents in the intervention group except for one item not being able to feed the babies themselves. It was significantly more distressed for mothers (p < 0.001). CONCLUSION: In this study, there was a decreased stress experience on item level in different subscales amongst mothers, but the study did not demonstrate any impact of the intervention on total stress experience either for mothers or for fathers.


Assuntos
Comunicação , Enfermagem Familiar/métodos , Recém-Nascido Prematuro/psicologia , Unidades de Terapia Intensiva Neonatal , Pais/psicologia , Grupos de Autoajuda , Estresse Psicológico/prevenção & controle , Adulto , Feminino , Humanos , Recém-Nascido , Masculino
12.
AIDS Care ; 29(4): 436-440, 2017 04.
Artigo em Inglês | MEDLINE | ID: mdl-27842440

RESUMO

To achieve optimal virologic suppression for children undergoing antiretroviral therapy (ART), adherence must be excellent. This is defined as taking more than 95% of their prescribed doses. To our knowledge, no study in Ethiopia has evaluated the level of treatment adherence at the beginning of the child's treatment. Our aim was therefore to evaluate caregiver-reported ART non-adherence among children and any predictors for this during the early course of treatment. We conducted a prospective cohort study of 306 children with HIV in eight health facilities in Ethiopia who were registered at ART clinics between 20 December 2014 and 20 April 2015. The adherence rate reported by caregivers during the first week and after a month of treatment initiation was 92.8% and 93.8%, respectively. Our findings highlight important predictors of non-adherence. Children whose caregivers were not undergoing HIV treatment and care themselves were less likely to be non-adherent during the first week of treatment (aOR = 0.17, 95% CI: 0.04, 0.71) and the children whose caregivers did not use a medication reminder after one month of treatment initiation (aOR = 5.21, 95% CI: 2.23, 12.16) were more likely to miss the prescribed dose. Moreover, after one month of the treatment initiation, those receiving protease inhibitor (LPV/r) or ABC-based treatment regimens were more likely to be non-adherent (aOR = 12.32, 95% CI: 3.25, 46.67). To promote treatment adherence during ART initiation in children, particular emphasis needs to be placed on a baseline treatment regimen and ways to issue reminders about the child's medication to both the health care system and caregivers. Further, large scale studies using a combination of adherence measuring methods upon treatment initiation are needed to better define the magnitude and predictors of ART non-adherence in resource-limited settings.


Assuntos
Fármacos Anti-HIV/uso terapêutico , Cuidadores , Infecções por HIV/tratamento farmacológico , Adesão à Medicação , Adolescente , Adulto , Terapia Antirretroviral de Alta Atividade , Criança , Pré-Escolar , Estudos Transversais , Etiópia , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Estudos Prospectivos , Autorrelato , Inquéritos e Questionários , Fatores de Tempo , Adulto Jovem
13.
J Clin Nurs ; 26(3-4): 466-476, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27325290

RESUMO

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.


Assuntos
Liderança , Poder Familiar/psicologia , Pais/educação , Enfermagem Pediátrica/métodos , Apoio Social , Criança , Serviços de Saúde da Criança/organização & administração , Feminino , Humanos , Masculino , Pais/psicologia , Inquéritos e Questionários , Suécia
14.
BMC Nurs ; 16: 73, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-29213213

RESUMO

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 5-8 months 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.

15.
Scand J Caring Sci ; 30(1): 193-201, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25918977

RESUMO

AIM: The aim was to translate the Parental Stressor Scale: Neonatal Intensive Care Unit (PSS: NICU) into the Swedish language and to evaluate the psychometric properties of the Swedish version. METHOD: The PSS: NICU was translated into Swedish using the process of forward-backward translation. Thereafter, an internal panel of neonatal nurses (n = 10) assessed face and content validity and a panel of parents (n = 10) assessed content validity. A sample of 95 parents recruited from three different neonatal units completed the PSS: NICU and answered some open-ended questions in which they could comment on language and wording. There were eight new items in the PSS: NICU, compared with the very first version of the instrument. These had not been psychometrically tested previously. In this study, the subscales and total scale were analysed both with and without the new items to determine whether or not to use them. Psychometric properties including internal consistency, Cronbach's alpha (if item deleted) and corrected item total were evaluated. RESULT: The result indicates that the Swedish version of PSS: NICU, both with and without the nonvalidated items, has acceptable psychometric properties and can be used in clinical practice in NICUs in Sweden. CONCLUSION: In order to meet the psychological needs of parents, healthcare professionals need to identify risk factors in the Neonatal Intensive Care Unit that contribute to stress amongst parents. The Swedish version of the PSS: NICU can be used for this purpose.


Assuntos
Unidades de Terapia Intensiva Neonatal , Pais/psicologia , Psicometria , Estresse Psicológico , Adulto , Feminino , Humanos , Masculino , Suécia
16.
Scand J Caring Sci ; 29(1): 126-35, 2015 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-24735278

RESUMO

BACKGROUND AND AIM: When a child is diagnosed with type 1 diabetes, it is a complex and challenging situation for the whole family. The management of the disease places substantial demands on the family and they need to change their daily life. The short- and long-term impact on the family has rarely been described; therefore, the aim of this study was to describe and compare the disease impact on parents and children in terms of health-related quality of life (HRQOL) at diagnosis and 1 year subsequent to the child's diagnosis with type 1 diabetes. A further aim was to describe and compare the parents' satisfaction with the care received. METHOD: Sixty-nine children and their parents were included. Parents independently filled in the PedsQL(™) Family Impact Module and the PedsQL(™) Health Care Satisfaction Generic Module. The PedsQL(™) 3.0 Diabetes Module was filled in by parents and children over the age of 5. RESULTS: Mothers reported a lower HRQOL than fathers both at the time of diagnosis (p = 0.003) and 1 year later (p = 0.041). For diabetes-specific HRQOL, children aged 5-7 years and their parents reported more worry than children and parents in older age groups (p = 0.037). Children aged 8-12 and 13-18 years reported a higher treatment adherence than mothers (p = 0.011 and p = 0.039, respectively); no differences were found between children and fathers. Both parents expressed overall satisfaction with the child's health care. CONCLUSION: The family is affected during the first year after their child is diagnosed with type 1 diabetes. Both parents and the youngest children estimated a high degree of worry. The diabetes team needs to be aware of this and to take it into consideration.


Assuntos
Diabetes Mellitus Tipo 1/diagnóstico , Adolescente , Criança , Pré-Escolar , Diabetes Mellitus Tipo 1/fisiopatologia , Humanos , Qualidade de Vida
17.
Acta Paediatr ; 103(8): 833-9, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-24813238

RESUMO

AIM: To validate and evaluate the psychometric properties of the ALPS-Neo, a new pain assessment scale created for the continuous evaluation of pain and stress in preterm and sick term infants. METHODS: A unidimensional scale for continuous pain, Astrid Lindgren Children's Hospital Pain Scale (ALPS 1), was developed further to assess continuous pain and stress in infants treated in the neonatal intensive care unit (NICU). The pain scale includes observations of five behaviours. A manual was created, clarifying the scoring criteria. An internal and an external panel assessed face validity. Psychometric properties were evaluated in three different steps. Inter-rater reliability was estimated from video-based assessments (n = 625) using weighted kappa statistics (test I). Inter-rater reliability was further evaluated in test II (n = 125) and test III (n = 96) by real-time assessments using the intraclass correlation coefficient (ICC) and Cronbach's alpha. RESULTS: The final inter-rater reliability (test III) was assessed as good with ICC 0.91 for the total score and 0.62-0.81 for the five items. Cronbach's alpha showed 0.95 for the total score. CONCLUSION: ALPS-Neo is a new assessment tool for optimising the management of pain and stress in newborn infants in the NICU. It has proved easy to implement and user-friendly, permitting fast, reliable observations with high inter-rater reliability.


Assuntos
Lactente Extremamente Prematuro/psicologia , Doenças do Recém-Nascido/psicologia , Terapia Intensiva Neonatal/métodos , Medição da Dor/métodos , Estresse Psicológico/diagnóstico , Humanos , Recém-Nascido , Unidades de Terapia Intensiva Neonatal , Variações Dependentes do Observador , Psicometria
18.
J Pediatr Nurs ; 29(2): 124-31, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24239685

RESUMO

This is the second part of a study that is following eight Swedish fathers of very preterm children using qualitative interviews. The aim was to illuminate fathers' lived experience of the 3 years since the birth of their very preterm child using a hermeneutic phenomenological method. The fathers described their lived experience as a process of reorganizing life, which constituted the overarching theme. They described a journey from the past to the present in which they adapted ordinary family life. The sub-themes identified were struggling to endure, experiencing empowerment, and building a secure base. The results may serve as a basis for neonatal staff to optimize care for both fathers and mothers during the child's hospitalization, as well as subsequent to their discharge.


Assuntos
Saúde da Família , Pai , Recém-Nascido Prematuro , Adulto , Luto , Feminino , Hospitalização , Humanos , Recém-Nascido , Relações Interpessoais , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Irmãos , Suécia
19.
Compr Child Adolesc Nurs ; : 1-10, 2024 Sep 25.
Artigo em Inglês | MEDLINE | ID: mdl-39320934

RESUMO

Although fathers experience emotional stress both during the care period and after discharge, there is limited research focusing exclusively on fathers' experiences after their time in a neonatal intensive care unit. Their experiences are important for tailoring support to fathers based on their individual needs. This paper is part of a longitudinal study in which parents were followed by means of questionnaires and individual interviews during a two-year period after discharge from hospital-based neonatal home care. A qualitative content analysis with an inductive approach was used to elucidate the experiences of fathers six months after their preterm infant's discharge. Twelve fathers participated in the study. The following categories emerged and constituted the result: "Vivid memories from the NICU," "Struggling with new challenges in life" and "Transition to home still in their thoughts." The approach and attitude of health-care professionals may contribute to fathers' involvement during the care period, as fathers tend to set their own feelings aside.

20.
Front Public Health ; 12: 1395682, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38846616

RESUMO

Introduction: The death of a parent can have profound negative impacts on children, and a lack of adequate support can exacerbate negative life experiences. Aim: To explore the influences of various actors on the content and execution of a bereavement programme within a Swedish context, considering relational and contextual perspectives. Methods: An ethnographic field study involving six children, their parents, and eight volunteers. A theory-inspired thematic analysis was conducted, methodically inspired by Braun and Clarke, theoretically inspired by Bourdieu's concepts of position, power, and capital. Results: Confidentiality obligation was an essential element in the programme, however, the premisses varied depending on actors' positions. Volunteers and researchers had different outlets to express their experiences in the program. The programme offered the children an exclusive space for talking about and sharing experiences and feelings. Simultaneously, the programme restricted the children by not allowing them to share their experiences and feelings outside the physical space. The physical settings shaped the different conditions for interactions among the actors. The sessions adopted loss-oriented approaches, where communication between volunteers and children was guided by the volunteers. However, children created strategies for additional, voiceless communication with their peers or themselves. During breaks and mingles, shared interests or spaces connected children (and adults) more than their common experience of parental bereavement. Conclusion: The participants in the programme were significantly influenced by the structural framework of the programme, and their positions within the programme provided them with different conditions of possibility for (inter)acting. Children's daily activities and interests were both ways to cope with parental bereavement and connect them to other people.


Assuntos
Antropologia Cultural , Luto , Pais , Humanos , Suécia , Feminino , Masculino , Criança , Pais/psicologia , Adulto , Voluntários/psicologia , Apoio Social
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