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  • 1.
    Gerhardsson, Emma
    et al.
    Uppsala universitet.
    Hildingsson, Ingegerd
    Uppsala universitet.
    Mattsson, Elisabet
    Uppsala universitet.
    Funkquist, Eva-Lotta
    Uppsala universitet.
    Prospective questionnaire study showed that higher self-efficacy predicted longer exclusive breastfeeding by the mothers of late preterm infants.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 5, p. 799-805Article in journal (Refereed)
    Abstract [en]

    AIM: An important variable that influences breastfeeding outcomes is how confident a woman feels about her ability to breastfeed successfully at an early stage. We investigated breastfeeding self-efficacy in the mothers of late preterm infants.

    METHODS: This was a prospective, comparative study that focused on mothers who had delivered babies at 34 + 0 to 36 + 6 weeks and were recruited in 2012-2015 from a neonatal intensive care unit and a postnatal ward at a Swedish university hospital. The Breastfeeding Self-Efficacy Scale-Short Form (BSES-SF) was used to psychometrically assess the mothers at 40 weeks of postmenstrual age (n = 148) and at three months of corrected age (n = 114).

    RESULTS: The BSES-SF scores were higher in the 87% of mothers that exclusively breastfed when their babies reached 40 weeks (57.1 out of 70) than those who did not (41.4, p < 0.001), indicating better self-efficacy. The figures remained higher in the 68% of exclusive breastfeeding mothers at three months of corrected age (60.9 versus 51.7).

    CONCLUSION: Self-efficacy was an important predictor of the length of breastfeeding in mothers of late preterm infants, and the BSES-SF can be used to detect low self-efficacy that could lead to early breastfeeding cessation.

  • 2. Jackson, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Magnuson, Anders
    Schollin, Jens
    Parental stress and toddler behaviour at age 18 months after pre-term birth.2007In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 96, no 2, p. 227-32Article in journal (Refereed)
    Abstract [en]

    AIM: To describe the parent's judgement of their own stress and the child's behaviour at 18 months after pre-term birth and if there are any correlations between these assessments, the morbidity in the neonatal period, the gestational age at birth and the occurrence of twin/triplet births. METHOD: Twenty-one mothers and 19 fathers of pre-term infants answered two questionnaires, The Swedish Parenthood Stress Questionnaire (SPSQ) and The Toddler Behaviour Questionnaire (TBQ). RESULTS: Mothers scored somewhat higher than fathers concerning parental stress. Parents with twins/triplets and of children born in gestational week 25-30 felt more stress, though the differences were not statistically significant. High-risk diagnoses did not correlate to any of the dimensions. The parents judged the behaviour of the children similar except that parents of children born in gestational week 25-30 scored significantly higher for intensity/activity (p = 0.002). The correlation between parental stress and judgement of their children's behaviour did not show any significant association except for the dimension regularity in TBQ (p = 0.016). CONCLUSIONS: The mothers' and fathers' assessments of their own stress and of the children's behaviour were similar. Parents of very pre-term children felt more stress and judged the children somewhat delayed in their social behaviours, probably due to their low gestational age.

  • 3. Jackson, Karin
    et al.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Magnuson, Anders
    Schollin, Jens
    Quality of care of the preterm infant--the parent and nurse perspective.2006In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 95, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    AIM: To study the subjective opinions about what is important in care at neonatal units and child health centres (CHCs) for premature newborns, and to compare these opinions with the care actually given. SUBJECTS: 21 mothers, 20 fathers and 15 nurses at the neonatal unit, and 21 mothers, 14 fathers and 18 nurses at CHCs. METHODS: A questionnaire on quality of Care from the Patient's Perspective was used. It contained three dimensions: identity-oriented approach, medical-technical competence and socio-cultural atmosphere. Each dimension was evaluated in terms of subjective importance and perceived reality of given care. RESULTS: In general, subjective importance was rated higher than perceived reality both for neonatal care and care at CHCs for the dimensions identity-oriented approach and medical-technical competence. However, higher ratings were given to neonatal care compared to CHCs for medical-technical competence. High-risk diagnoses and very low gestational age in the newborn did not affect the answers. Mothers rated medical-technical competence higher than nurses for neonatal care. Mothers and nurses rated identity-oriented approach higher than fathers for CHCs. CONCLUSION: Although both neonatal care and care at CHCs were highly rated, improvements can be made to fulfil the expectations of parents and nurses. Neonatal units seem to be more efficient in taking care of the special needs of these newborns compared to CHCs. The need for an optimal identity-oriented approach, medical-technical competence and socio-cultural atmosphere could strengthen the possibilities of parents to be confident in their parental role.

  • 4.
    Jalmsell, Li
    et al.
    Uppsala universitet, Visby lasarett.
    Forslund, Martin
    Uppsala universitet.
    Hansson, Mats G
    Uppsala universitet.
    Henter, Jan-Inge
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Sophiahemmet.
    Frost, Britt-Marie
    Uppsala universitet.
    Transition to noncurative end-of-life care in paediatric oncology: A nationwide follow-up in Sweden2013In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 102, no 7, p. 744-748Article in journal (Refereed)
    Abstract [en]

    AIM: To estimate whether and when children dying from a malignancy are recognized as being beyond cure and to study patterns of care the last weeks of life.

    METHODS: A nationwide retrospective medical record review was conducted. Medical records of 95 children (60% of eligible children) who died from a malignancy 2007-2009 in Sweden were studied.

    RESULTS: Eighty-three children (87%) were treated without curative intent at the time of death. Children with haematological malignancies were less likely to be recognized as being beyond cure than children with brain tumours [relative risks (RR) 0.7; 95% confidence interval (CI) 0.6-0.9] or solid tumours (RR 0.8; 0.6-1.0). The transition to noncurative care varied from the last day of life to over four years prior to death (median 60 days). Children with haematological malignancies were treated with a curative intent closer to death and were also given chemotherapy (RR 5.5; 1.3-22.9), transfusions (RR 2.0; 1.0-4.0) and antibiotics (RR 5.3; 1.8-15.5) more frequently than children with brain tumours the last weeks of life.

    CONCLUSION: The majority of children dying from a malignancy were treated with noncurative intent at the time of death. The timing of a transition in care varied with the diagnoses, being closer to death in children with haematological malignancies.

  • 5.
    Jalmsell, Li
    et al.
    Uppsala universitet; Visby lasarett.
    Lövgren, Malin
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Frost, Britt-Marie
    Uppsala universitet.
    Children with cancer share their views: tell the truth but leave room for hope2016In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 105, no 9, p. 1094-1099Article in journal (Refereed)
    Abstract [en]

    AIM: One in five children diagnosed with cancer will die from the disease. Few studies have focused on how children with cancer want to receive bad news, such as when no more treatment options are available, and that was the aim of this study.

    METHODS: We conducted individual interviews with ten children with cancer, aged seven to 17 years, at a single paediatric oncology unit in central Sweden. Interviews were audiotaped and analysed with systematic text condensation. Bad news was defined as information about a potentially fatal outcome, such as a disease relapse, or information that the treatment administered was no longer working and that there was no more treatment possible.

    RESULTS: All children expressed that they wanted truthful information, and they did not want to be excluded from bad news regarding their illness. They wanted to be informed as positively as possible, allowing them to maintain hope, and in words that they could understand. They also wanted to receive any bad news at the same time as their parents.

    CONCLUSION: Children with cancer want to be fully informed about their disease, but they also wanted it to be relayed as positively as possible so that they could stay hopeful. This article is protected by copyright. All rights reserved.

  • 6.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Paediatric palliative care: A personal perspective2021In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 110, no 10, p. 2678-2679Article in journal (Refereed)
  • 7.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Paediatric palliative care should focus on living as well as dying.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 6, p. 914-915Article in journal (Refereed)
  • 8.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Why and where do children die?2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 10, p. 1671-1672Article in journal (Refereed)
  • 9.
    Kreicbergs, Ulrika
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    No impact of previous evidence advocating openness to talk to children about their imminent death2021In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, no 5, p. 1671-1672Article in journal (Refereed)
    Abstract [en]

    Communication is as important as the drug and the knife in medical care, particularly when patients are facing life-threatening conditions. However, the ability to communicate effectively has been commonly associated with strong emotional barriers among healthcare professionals and family members. Studies that have focused on paediatric oncology have showed that openness about the transition from curative to palliative care is frequently avoided. As long ago as the 1980s a paper in this journal reported that children often wanted to share their thoughts and feelings at the end of life, but that adults often failed to recognise that need.

  • 10.
    Kvist, Therese
    et al.
    Karolinska institutet; Center for Paediatric Oral Health Research, Stockholm.
    Dahllöf, Göran
    Karolinska institutet; Center for Paediatric Oral Health Research, Stockholm; Center for Oral Health Services and Research, Trondheim, Norway.
    Svedin, Carl Göran
    Ersta Sköndal Bräcke University College, Department of Social Sciences.
    Annerbäck, Eva-Maria
    Linköpings universitet; Centre for Clinical Research, Region Sörmland, Uppsala universitet.
    Child physical abuse, declining trend in prevalence over 10 years in Sweden2020In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 109, no 7, p. 1400-1408Article in journal (Refereed)
    Abstract [en]

    AIM: To study trends in prevalence and risk factors of child physical abuse over 10 years in Sweden.

    METHODS: This study analysed responses from school surveys in 2008, 2011, 2014 and 2017 in Södermanland County, Sweden with average 5125 respondents per year, 15 and 17 years old. There were identical questions on exposure to violence and risk factors including parental employment, separated parents, disability or disease, foreign background and lack of adult support. Intimate partner violence was included at three occasions. Data were analysed with bi- and multivariate models, and mean of accumulated risks were compared.

    RESULTS: Child physical abuse decreased significantly between 2008 and 2017. Repeated abuse decreased to a less degree than abuse once. In bivariate analyses, the share of risk factors declined for those exposed to physical abuse. In multiple analyses, it was found significant associations with exposure. There was and a dose-relationship between numbers of accumulated risk categories and self-reported abuse.

    CONCLUSION: Exposure to child physical abuse decreased substantially between 2008 and 2017. However, prevalence of abuse is still unacceptable, and the finding that prevalence of the more severe forms of CPA decreased less during the same time, draws attention to the need of ongoing efforts.

  • 11.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset; Karolinska institutet.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning Dalarna (CKF).
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Telling the truth to dying children: End‐of‐life communication with families2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 11, p. 2111-2112Article in journal (Refereed)
  • 12.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Mogensen, N
    Karolinska institutet.
    Harila-Saari, A
    Uppsala universitet.
    Lähteenmäki, P M
    Finland.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sweden and Finland need to improve the support provided for the siblings of children with cancer.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 2, p. 369-370Article in journal (Refereed)
    Abstract [en]

    Evidence favours sibling support as a standard of care in paediatric oncology (1). Guidelines published in 1999 by the International Society of Paediatric Oncology (2) recommended involving siblings in the ill child's care and supporting siblings during and after the illness. Studies have shown that this is something that siblings want and need (3) and lack of support has increased the risk of long-term psychological distress (4). Sibling support varies between countries. This article is protected by copyright. All rights reserved.

  • 13.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning, Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Is the family talk intervention feasible in paediatric oncology?: An evaluation of a family-based psychosocial intervention2022In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 111, no 3, p. 684-692Article in journal (Refereed)
    Abstract [en]

    AIM: To examine the feasibility of a family-based psychosocial intervention, Family Talk Intervention (FTI), in paediatric oncology in terms of recruitment, retention, delivery, response rate and acceptability from the parents' perspective.

    METHODS: This study involved 26 families affected by childhood cancer. FTI encompasses six family meetings, with the main goal being to facilitate family communication about illness-related subjects. Meeting 5 is preferably moderated by the parents. Extra meetings (7-11) can be held if needed. This paper includes observational data and surveys, and interviews with parents.

    RESULTS: All families who started FTI underwent the full intervention and the survey response rate varied between 100% and 71% over time. Extra meetings were held with most families. The parents stated that FTI filled a gap of support to the family as a unit and described FTI as a map they could follow. Since FTI was conducted at home, this created a safe environment, which contributed to their participation. The parents valued the children's perspectives being considered, but some felt uncomfortable moderating 'the family talk' (meeting 5).

    CONCLUSION: Family talk intervention was valued by parents, but it would benefit from being slightly modified before a large trial can be developed.

  • 14.
    Udo, Camilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Center for Clinical Research Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Axelsson, Bertil
    Umeå universitet.
    Björk, Olle
    Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 108, no 12, p. 285-2291Article in journal (Refereed)
    Abstract [en]

    AIM: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.

    METHODS: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.

    RESULTS: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.

    CONCLUSION: Training to overcome communication issues could support the early integration of palliative care.

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