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  • 1.
    Bray, Lucy
    et al.
    Edge Hill University, Ormskirk, United Kingdom.
    Carter, Bernie
    Edge Hill University, Ormskirk, United Kingdom.
    Kiernan, Joann
    Edge Hill University and Alder Hey Children’s Hospital, Liverpool, United Kingdom.
    Horowicz, Ed
    University of Liverpool, Liverpool, United Kingdom.
    Dixon, Katie
    Expert by Experience, Liverpool, United Kingdom.
    Ridley, James
    Edge Hill University and National Restraint Reduction Network, Ormskirk, United Kingdom.
    Robinson, Carol
    University of Strathclyde, Glasglow, United Kingdom.
    Simmons, Anna
    Alder Hey Children’s Hospital, Liverpool, United Kingdom.
    Craske, Jennie
    Alder Hey Children’s Hospital, Liverpool, United Kingdom.
    Sinha, Stephanie
    Alder Hey Children’s Hospital, Liverpool, United Kingdom.
    Morton, Liza
    University of Glasgow, Glasgow, United Kingdom.
    Nafria, Begonya
    Sant Joan de Déu Children’s Hospital, Barcelona, Spain.
    Forsner, Maria
    Umeå universitet, Institutionen för omvårdnad.
    Rullander, Anna-Clara
    Umeå universitet, Institutionen för omvårdnad.
    Nilsson, Stefan
    University of Gothenburg, Gothenburg, Sweden.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. University of Borås, Borås, Sweden.
    Karlsson, Katarina
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare. University of Borås, Borås, Sweden.
    Hubbuck, Cath
    Great Ormond Street Hospital, London, United Kingdom.
    Brenner, Maria
    Trinity College, Dublin, Ireland.
    Spencer-Little, Sian
    Great Ormond Street Hospital, London, United Kingdom.
    Evans, Kath
    Barts Health NHS Trust, London, United Kingdom.
    Rowland, Andrew
    The University of Salford, Salford, United Kingdom.
    Hilliard, Carol
    Children’s Health Ireland (CHI) at Crumlin, Dublin, Ireland.
    Preston, Jennifer
    University of Liverpool, Liverpool, United Kingdom.
    Leroy, Piet L.
    Maastricht University Medical Centre / Maastricht University, Maastricht, Netherlands.
    Roland, Damian
    University Hospitals of Leicester NHS Trust and Leicester University, Leicester, United Kingdom.
    Booth, Lisa
    University of Cumbria, Cumbria, United Kingdom.
    Davies, Jean
    Bangor University, Bangor, United Kingdom.
    Saron, Holly
    Edge Hill University, Ormskirk, United Kingdom.
    Mansson, Marie Edwinson
    Paediatric RN, HSC, Lund University, Lund, Sweden.
    Cox, Ann
    Midlands Partnership NHS Foundation Trust & Keele University, Keele, United Kingdom.
    Ford, Karen
    University of Tasmania and the Royal Hobart Hospital, Tasmani, Australia.
    Campbell, Steven
    University of Tasmania, TAS, Australia.
    Blamires, Julie
    Auckland University of Technology, Auckland, New Zealand.
    Dickinson, Annette
    Auckland University of Technology, Auckland, New Zealand.
    Neufeld, Michael
    Auckland University of Technology, Auckland, New Zealand.
    Peck, Blake
    Federation University, VIC, Australia.
    de Avila, Marla
    São Paulo State University, São Paulo, Brazil.
    Feeg, Veronica
    Molloy College in Rockville Centre, New York City, United States.
    Mediani, Henny Suzana
    Universitas Padjadjaran, Bandung Ciry, Indonesia.
    Atout, Maha
    Philadelphia University, Amman, Jordan.
    Majamanda, Maureen D.
    University of Malawi, Kamuzu College of Nursing, Malawi, South Africa.
    North, Natasha
    The Harry Crossley Children’s Nursing Development Unit, University of Cape Town, Cape Town, South Africa.
    Chambers, Christine
    Dalhousie University, Halifax, Canada.
    Robichaud, Fanny
    Ulluriaq, Ungava Tulattavik Health Center and UQAM UQO, QC, Canada.
    Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus2023In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076Article in journal (Refereed)
    Abstract [en]

    Children continue to experience harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care. The international ISupport collaboration aimed to develop standards to outline and explain good procedural practice and the rights of children within the context of a clinical procedure. The rights-based standards for children undergoing tests, treatments, investigations, examinations and interventions were developed using an iterative, multi-phased, multi-method and multi-stakeholder consensus building approach. This consensus approach used a range of online and face to face methods across three phases to ensure ongoing engagement with multiple stakeholders. The views and perspectives of 203 children and young people, 78 parents and 418 multi-disciplinary professionals gathered over a two year period (2020–2022) informed the development of international rights-based standards for the care of children having tests, treatments, examinations and interventions. The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

    Conclusion: This is the first study of its kind which outlines international rights-based procedural care standards from multi-stakeholder perspectives. The standards offer health professionals and educators clear evidence-based tools to support discussions and practice changes to challenge prevailing assumptions about holding or restraining children and instead encourage a focus on the interests and rights of the child.

    What is Known:

    • Children continue to experience short and long-term harm when undergoing clinical procedures despite increased evidence of the need to improve the provision of child-centred care.

    • Professionals report uncertainty and tensions in applying evidence-based practice to children’s procedural care. What is New:

    • This is the first study of its kind which has developed international rights-based procedural care standards from multi-stakeholder perspectives.

    • The standards are the first to reach international multi-stakeholder consensus on definitions of supportive and restraining holds.

    Download full text (pdf)
    FULLTEXT01
  • 2.
    Hedén, Lena E
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    von Essen, Louise
    Ljungman, Gustaf
    Effect of morphine in needle procedures in children with cancer.2011In: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 15, no 10Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The aim was to investigate whether children experience less fear, distress, and/or pain when they receive oral morphine vs. placebo before a needle is inserted in a subcutaneously implanted intravenous port when combined with topical anesthesia.

    METHOD: Fifty children 1-18 years of age who were treated in a pediatric oncology and hematology setting were included consecutively when undergoing routine needle insertion into an intravenous port. All children were subjected to one needle insertion following topical anesthetic (EMLA) application in this randomized, triple-blind, placebo-controlled study comparing orally administered morphine (n=26) 0.25 mg/kg body weight with placebo (n=24). The patients' fear, distress, and pain were reported by parents, nurses and the children themselves (if ≥ 7 years of age) on 0-100 mm Visual Analogue Scales. In addition, observational methods were used to measure distress and procedure pain.

    RESULTS: No differences between the morphine and the placebo group were found with respect to age, weight, height, physical status, sex, weeks from diagnosis, or weeks from latest needle insertion. According to, parents, nurses, and children, oral morphine at a dose of 0.25 mg/kg body weight did not reduce fear, distress or pain compared with placebo.

    CONCLUSION: We could not reject the null hypothesis that there is no difference between the oral morphine and placebo groups assuming an effect size of 15 mm on VAS. Therefore it seems that oral morphine at 0.25 mg/kg does not give any additional reduction of fear, distress or pain compared with placebo when combined with topical anesthesia in pediatric patients undergoing subcutaneous port needle insertion, and would not be expected to be of any advantage for similar procedures such as venipuncture and venous cannulation when topical anesthesia is used.

  • 3.
    Hedén, Lena
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Pöder, Ulrika
    von Essen, Louise
    Ljungman, Gustaf
    Parents' perceptions of their child's symptom burden during and after cancer treatment.2013In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 46, no 3Article in journal (Refereed)
    Abstract [en]

    CONTEXT: Previously reported studies of children with cancer mostly provide cross-sectional knowledge of the prevalence of symptoms but do not show when during the disease trajectory and after the end of successful treatment certain symptoms are most prevalent and/or distressing.

    OBJECTIVES: The aim was to describe parents' perceptions of their child's symptom burden longitudinally during and after cancer treatment and to investigate whether parents' perceptions vary with child characteristics and parent gender.

    METHODS: One hundred sixty parents (49% fathers) of 89 children answered a modified version of the Memorial Symptom Assessment Scale (MSAS) 10-18 at six different time points from one week after the child's diagnosis (T1) to 12-18 months after the end of successful treatment (T6).

    RESULTS: Feeling drowsy, pain, and lack of energy are initially the most prevalent symptoms. During treatment, the most prevalent symptom is less hair than usual. Pain, feeling sad, and nausea are initially the most distressing symptoms. Pain is both prevalent and distressing throughout the treatment. The child's symptom burden decreases over time. There is no difference regarding the reported symptom burden between the parents of a daughter or a son, or parents of a child older or younger than seven years of age. Mothers' and fathers' assessments of the symptom number, total MSAS and the subscales, are associated, but mothers' assessments are often higher than fathers' assessments.

    CONCLUSION: The prevalence and distress of symptoms and symptom burden decrease over time. However, even though the cancer is cured, feeling sad is reported as being prevalent and psychological distress is an issue. A dialogue between staff and the family about distressing symptoms and when they can be expected may increase acceptance and adaptation in children and parents during the disease trajectory.

  • 4.
    Hedén, Lena
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    von Essen, L
    Department of Public Health and Caring Sciences, Clinical Psychology in Healthcare, Uppsala University, Sweden.
    Ljungman, G
    Department of Women's and Children's Health, Pediatric Oncology, Uppsala University, Sweden.
    The relationship between fear and pain levels during needle procedures in children from the parents' perspective.2016In: European Journal of Pain, ISSN 1090-3801, E-ISSN 1532-2149, Vol. 20, no 2Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The primary objective was to determine the levels of and potential relationships between procedure-related fear and pain in children. Secondary objectives were to determine if there are associations between the child's age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol levels and the parent's fear level in relation to fear and pain.

    METHODS: The child's level of pain and fear was reported by parents on 0-100 mm visual analogue scales (VAS). One hundred and fifty-one children were included consecutively when undergoing routine needle insertion into a subcutaneously implanted intravenous port. All children were subjected to one needle insertion following topical anaesthesia (EMLA) application. The effect of the child's age and sex, diagnostic group, time since diagnosis, time since last needle insertion, cortisol change levels and the parent's fear level, on fear and pain levels was investigated with multiple regression analysis.

    RESULTS: The needle-related fear level (VAS mean 28 mm) was higher than the needle-related pain level (VAS mean 17 mm) when topical anaesthesia is used according to parents' reports (n = 151, p < 0.001). With fear as the dependent variable, age and pain were significantly associated and explained 33% of the variance, and with pain as the dependent variable, fear, parents' fear and change in cortisol level were significantly associated and explained 38% of the variance.

    CONCLUSIONS: According to parents, children experienced more fear than pain during needle insertion when topical anaesthesia is used. Therefore, in addition to pain management, an extended focus on fear-reducing interventions is suggested for needle procedures.

  • 5.
    Kleye, Ida
    et al.
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Darcy, Laura
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Karlsson, Katarina
    Hedén, Lena E
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    Sundler, Annelie Johansson
    University of Borås, Faculty of Caring Science, Work Life and Social Welfare.
    "This is the way i want it": Children's strategies for dealing with fear and pain during hospital care2019In: / [ed] Ida Kleye, 2019Conference paper (Refereed)
    Abstract [en]

    Introduction

    The aim of this study was to describe children's self-identified strategies for dealing with fear and pain during hospital care and treatment

    Download full text (pdf)
    fulltext
1 - 5 of 5
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