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Darcy, Laura
Alternative names
Publications (10 of 20) Show all publications
Darcy, L. & Karlsson, K. (2018). Humanising Care for Sick Children in Hospital: – are we ready to meet the demands of The Convention on Human Rights of the Child (CHRC)?. In: : . Paper presented at 4th PNAE Congress on Paediatric Nursing, Athens, June 1-2, 2018..
Open this publication in new window or tab >>Humanising Care for Sick Children in Hospital: – are we ready to meet the demands of The Convention on Human Rights of the Child (CHRC)?
2018 (English)Conference paper, Oral presentation with published abstract (Refereed)
Abstract [en]

Background

Nursing Care of children is complex and nurses need specific knowledge in meeting children to ensure high quality care. Caring for children based on their age, developmental stage and maturity can be a challenge for nurses and sets demands on care. When the CRC becomes law in Sweden 2020 children’s rights will be strengthened and we can expect repercussions in the quality of care delivered to children in need

 

Aim

The aim of this study was to investigate the degree to which nurses in paediatric hospital services work in compliance with the CRC.

 

Method

Nurses in paediatric services in Western Sweden answered a survey on if their work situation allowed them to give care to children in accordance with the CRC. Survey responses (n=69) were analysed with descriptive analysis. Personal interviews were performed with paediatric nurses (n=9) and analysed with a qualitative content analysis.

 

Results

Nurses working in paediatric services are well aware of children’s rights in health care and strive to meet children’s needs. However, a stressed working situation with lack of time and/or an environment that is not child friendly means that their caring is not always optimal. Children are not participatory to the degree nurses would wish then to be and the CRC stipulates they should.

 

Conclusions

Nurses working with children show competence in and knowledge of children’s needs. However thay are limited by their working environments. Clear guidelines and working tools such as time for reflection are suggestions of measures that need to be taken to ensure compliance with the upcoming demands of the CRC.

Keywords
children, paediatric care, convention on rights of the child
National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-15512 (URN)
Conference
4th PNAE Congress on Paediatric Nursing, Athens, June 1-2, 2018.
Available from: 2019-01-02 Created: 2019-01-02 Last updated: 2019-01-03Bibliographically approved
Darcy, L. (2018). Meeting the social needs of young children with cancer: – a transdisciplinary implementation of research results.. In: : . Paper presented at 50th Congress of the International Society of Paediatric Oncology (SIOP 2018), Kyoto, November 16-19, 2018.
Open this publication in new window or tab >>Meeting the social needs of young children with cancer: – a transdisciplinary implementation of research results.
2018 (English)Conference paper, Poster (with or without abstract) (Refereed)
Abstract [en]

Background

Young children are increasingly surviving their cancer and their experiences of living with cancer are crucial to providing evidence based care. Their own experiences of everyday life with cancer were elicitated by interview shortly after diagnosis and six, 12, 18 and 36 months later (2011-2015). Qualitative analyses of the results described the child living with cancer over a three year period as a child apart, striving to live an everyday life. A strong sense of loneliness, isolation, feeling left out and feeling different persisted throughout the study. Emerging issues of survivorship, such as the child’s social needs, were revealed that need to be addressed as young children learn to live an everyday life with cancer and the effects of its treatment.

Methods

The present paper aims to describe the actions taken by the Child Life Specialist Department at a paediatric hospital in the West of Sweden based on these results.

Results

Child Life Specialists (CLS) play an integral role on the oncology team. Guidelines and working practise were developed to meet the child’s social needs. CLS are now present at visits made to preschool/schools together with the consultant oncology nurses and maintain contact with preschool/school personnel over time. Through brochures and meetings the CLS spreads information on the child’s social needs to surrounding municipalities and other CLS teams in Sweden.

 

Conclusions

The results of studies with young children with cancer need to be implemented and evaluated in clinical care. Traditionally, studies within nursing are disseminated to and implemented by nursing staff. The present study shows how other disciplines can be involved in the dissemination and implementation of nursing study results- with the child and the child’s needs as the guiding point.

Keywords
Childhood cancer, Everyday life, Young child, Child Life Specialists
National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-15513 (URN)
Conference
50th Congress of the International Society of Paediatric Oncology (SIOP 2018), Kyoto, November 16-19, 2018
Available from: 2019-01-02 Created: 2019-01-02 Last updated: 2019-01-03Bibliographically approved
Darcy, L., Enskär, K. & Björk, M. (2018). Young children's experiences of living an everyday life with cancer – A three year interview study. European Journal of Oncology Nursing
Open this publication in new window or tab >>Young children's experiences of living an everyday life with cancer – A three year interview study
2018 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122Article in journal (Refereed) Epub ahead of print
Abstract [en]

Purpose

The young child's experiences of living with cancer are crucial to providing evidence based care. This study explores and describes experiences of everyday life of young children with cancer, over a three year period from diagnosis.

Method

This is a longitudinal, inductive interview study with young children with cancer, and their parents. Interviews from shortly after diagnosis, six and 12 months after diagnosis have been reanalysed. Interviews with the same children and their parents from 18 to 36 months after diagnosis have been analysed for the first time in the present paper. A longitudinal temporal analysis at category level for five synchronic data sets forms the basis for the results.

Results

The child living with cancer over a three year period is described as a child apart, striving to live an everyday life. This description is built on three categories: I want to be a child like any other, I need security and control and I feel lonely and left out. Young children with cancer actively strive to understand their illness, participate in care and live an ordinary everyday life- but with ongoing feelings of social isolation and loneliness.

Conclusions

Young children with cancer need access to and ongoing contact with peers and preschool. A structured follow-up throughout the cancer trajectory and not just during active treatment, is necessary. A child-centred philosophy of care would guide the child towards attainment of health and wellbeing.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
Childhood cancer, Everyday life, Young child, Longitudinal
National Category
Cancer and Oncology Nursing
Identifiers
urn:nbn:se:hb:diva-15594 (URN)10.1016/j.ejon.2018.12.007 (DOI)
Available from: 2019-01-02 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Björk, M., Darcy, L., Jenholt Nolbris, M. & Hedman Ahlström, B. (2017). Att vara barn och möta sjukdom.. In: Eva Benzein (Ed.), Att möta familjer i vård och omsorg:: . Lund: Studentlitteratur AB
Open this publication in new window or tab >>Att vara barn och möta sjukdom.
2017 (Swedish)In: Att möta familjer i vård och omsorg: / [ed] Eva Benzein, Lund: Studentlitteratur AB, 2017Chapter in book (Refereed)
Place, publisher, year, edition, pages
Lund: Studentlitteratur AB, 2017
National Category
Health Sciences
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-15570 (URN)9789144115870 (ISBN)
Available from: 2019-01-02 Created: 2019-01-02 Last updated: 2019-01-03Bibliographically approved
darcy, l., Karlsson, K. & Galvin, K. (2017). Humanising children's suffering during medical procedures. In: European Conference in Nursing  and Nursing Research 2017: . Paper presented at European Conference in Nursing and Nursing Research 2017, Malmö, 4-5 July, 2017 (pp. 32). , 16, Article ID suppl1.
Open this publication in new window or tab >>Humanising children's suffering during medical procedures
2017 (English)In: European Conference in Nursing  and Nursing Research 2017, 2017, Vol. 16, p. 32-, article id suppl1Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

Humanising children’s suffering during medical procedures

Laura Darcy, Katarina Karlsson, Kate Galvin

Background: The views of children have historically been seen as unimportant – they have been viewed as unintelligent and unable to tell of their experiences or participate in care, resulting in dehumanisation. Recent research has given young vulnerable children a voice and highlighted the importance of caring humanly for sick children (Darcy, 2015 & Karlsson, 2015). A conceptual framework consisting of eight dimensions of humanisation has been proposed by Todres, Galvin and Holloway (2009)which can highlight the need for young children to be cared for as human beings: Insiderness, Agency, Uniqueness, Togetherness, Meaning – making, Personal journey, Sense of Place and Embodiment. The aim of this study is to demonstrate the value of a humanising theoretical framework in paediatric care illustrated by examples of young children’s suffering when undergoing medical procedures.

Materials and Methods: In two separate Swedish studies 20 children (3-7 years of age) with a variety of diagnosis were interviewed about their experiences of everyday life with cancer or their experiences of undergoing painful medical procedures. Parents and nurses views were welcomed as complimentary to child data. Interviews had been analysed qualitatively by either content analyses or by phenomenological and life world herme­neutic approaches. In the present study, a secondary inductive qualitative content analysis of the results has been made based on the proposed dimensions of humanisation/dehumanistion.

Results: The eight dimensional framework Illustrated several forms of dehumanisation: Objectification –children’s opinions and experiences are seldom requested; Passivity – the use of restraint still happens and negatively affects the child; Homogenisation – children are viewed as their diagnosis; Isolation – children sense separation from parents, siblings and friends; Loss of meaning –appropriate information and preparation for the child is lacking; Loss of personal journey - everyday life functioning is affected making it difficult to see meaning; Dislocation – a sense of homelessness  is experienced at home, at the hospital and at preschool/school; Reductionist view – medical procedures becomes the professional focus of care, not the child.

Conclusion: Dehumanisation occurs when humanising dimensions are obscured to a significant degree. Children’s own voices in care and research are required to correct the present power imbalance. Children require assistance in making sense of healthcare situations through play and preparation. Access to family and friends, being treated with dignity and encouragement to participate in care, will encourage humanising the dehumanisation illustrated in this study.

References:

Darcy, L. (2015). The everyday life of young children through their cancer trajectory. Jönköping: School of Health Sciences.

Karlsson, K. (2015). ”I´m afraid, I want my mommy”: Younger children´s, parents’ and nurses´ lived experiences of needle procedures in health care. Jönköping: Jönköping University, School of Health and Welfare

Todres, L., Galvin, K. T., & Holloway, I. (2009). The humanization of healthcare: A value framework for qualitative research. International Journal of Qualitative Studies on Health and Well-being, 4(2), 68-77.

National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-13565 (URN)10.1186/s12912-017-0218-2 (DOI)
Conference
European Conference in Nursing and Nursing Research 2017, Malmö, 4-5 July, 2017
Available from: 2018-02-19 Created: 2018-02-19 Last updated: 2018-03-13Bibliographically approved
Darcy, L., Björk, M., Granlund, M. & Enskär, K. (2017). ICF applications in health care for children with cancer in Sweden. In: S. Castro & O. Palikara (Ed.), An emerging approach for education and care: Implementing a worldwide classification of functioning and disability (pp. 178-186). London: Routledge
Open this publication in new window or tab >>ICF applications in health care for children with cancer in Sweden
2017 (English)In: An emerging approach for education and care: Implementing a worldwide classification of functioning and disability / [ed] S. Castro & O. Palikara, London: Routledge , 2017, p. 178-186Chapter in book (Refereed)
Abstract [en]

The International Classification of Functioning, Disability and Health (ICF) and its version for children and youth, the ICF-CY, can contribute to the present knowledge on the lives of young children with cancer, with an international and interdisciplinary language. In this context, the term health can be seen as a multidimensional concept in which both illness and non-illness/well-being are dimensions that can be present at the same time, rather than two opposite concepts. Health is the result of a continuous process rather than something that one individual has; it is a resource for everyday life rather than the objective of living (WHO, 1986). The ICF was developed to classify different dimensions on individuals’ health as a unified standardised common language and framework, to be used across disciplines (WHO, 2007). It acknowledges that health and illness are complex concepts and promotes a biopsychosocial model of health, in which the context is as important as the individual and his/her needs. The view of health as functioning in everyday life can be operationalised using the ICF model of body structure, body function, activities and participation and environmental factors (Rosenbaum & Gorter, 2012).

Place, publisher, year, edition, pages
London: Routledge, 2017
National Category
Educational Sciences Medical and Health Sciences
Identifiers
urn:nbn:se:hb:diva-15596 (URN)10.4324/9781315519692 (DOI)2-s2.0-85050297818 (Scopus ID)9781315519685 (ISBN)9781138698178 (ISBN)
Available from: 2018-11-02 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Darcy, L., Björk, M., Knutsson, S., Granlund, M. & Enskär, K. (2016). Following young children's health and functioning in everyday life through their cancer trajectory. Journal of Pediatric Oncology Nursing, 33(3), 173-189
Open this publication in new window or tab >>Following young children's health and functioning in everyday life through their cancer trajectory
Show others...
2016 (English)In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 3, p. 173-189Article in journal (Refereed) Published
Abstract [en]

Background: Knowledge of living with childhood cancer, through the trajectory, is sparse.

Aim: The aim of this study was to follow young children’s health and functioning in everyday life through their cancer trajectory.

Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis.

Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children’s trajectories in relation to diagnosis but individual patterns were seen for each child.

Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.

Keywords
Childhood cancer, Sweden, Young child
National Category
Nursing
Identifiers
urn:nbn:se:hb:diva-15595 (URN)10.1177/1043454215610489 (DOI)000373837100002 ()26655332 (PubMedID)2-s2.0-84962691659 (Scopus ID)
Funder
Swedish Child Diabetes Foundation
Available from: 2015-04-28 Created: 2019-01-03 Last updated: 2019-01-03Bibliographically approved
Darcy, L., Björk, M., Person, C. & Enskär, K. (2016). It’s not just about making them talk: Some thoughts and experiences on interviewing children in research. In: Nordic Conference on Nursing Research 2016: Methods and Networks for the future. Paper presented at Nordic Conference on Nursing Research 2016.
Open this publication in new window or tab >>It’s not just about making them talk: Some thoughts and experiences on interviewing children in research
2016 (English)In: Nordic Conference on Nursing Research 2016: Methods and Networks for the future, 2016Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

It’s not just about making them talk - thoughts and experiences on interviewing children in research

Historically, children’s views have not been valued in medical care.  In research, children have been seen as a vulnerable group, difficult to access and unable to tell their story. Many proxy studies have been performed where health care staff and parents have given their views about what they think the child experiences. However,it is difficult to draw valid conclusions about the child´s experience using proxy valuations. Children have the right and the ability to contribute unique information about their own experiences. These views are valuable in providing evidence based care.

The aim of this paper is to share experiences and thoughts gained from interviewing children with cancer aged 3-13 years of age.

Young children (from 3 years of age) have sufficient mental ability, cognition and concepts to describe experiences– just not in the same way as adults. They are able to articulate their experiences, providing the interview context feels safe, questions and props are developmentally appropriate and the interviewer follows the child’s leads. Special considerations need to be taken such as how to best inform them about the study, ethical issues, where and when to undertake the interview, how long the interview should be, how to make the child talk in the interview and which elucidating devices/props  can  be used during the interview as facilitators.  Parental contributions to child interviews can be useful as long as focus is kept on the child’s experiences. Interviewing over several time points gives new insights.

National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-11180 (URN)
Conference
Nordic Conference on Nursing Research 2016
Available from: 2016-12-13 Created: 2016-11-28 Last updated: 2017-03-17Bibliographically approved
Karlsson, K., Darcy, L. & Enskär, K. (2016). Powerless and afriad: What using restaint means to young children with cancer during painful medical procedures. In: 48th congress of the international society of paediatric oncology: SIOP. Paper presented at SIOP, Washington, 2016.
Open this publication in new window or tab >>Powerless and afriad: What using restaint means to young children with cancer during painful medical procedures
2016 (English)In: 48th congress of the international society of paediatric oncology: SIOP, 2016Conference paper, Poster (with or without abstract) (Other academic)
Abstract [en]

Background

Children’s need for support is tied to their experiences of fear during times of trauma and uncertainty. The aim of this paper was to review the use of restraint with young children with cancer, from the child’s perspective, during painful medical procedures.

Method

In two separate Swedish doctoral theses, 20 children (3-7 years of age) with a variety of cancer diagnosis were interviewed about their experiences of everyday life with cancer and experiences of undergoing painful medical procedures. Parents and nurses views were welcomed as complimentary to child data. Interviews were analysed qualitatively by content analyses and phenomenological and life world hermeneutic approaches.

Result

Children and parents described trauma related to the suddenly changed caring role parents’ play: from caring parent to health care assistant. Parents helped restrain children and took part in painful and unpleasant procedures and treatments. Nurses described the use of restraint as sometimes necessary due to logistical constraints but also as supportive to the child. Lack of access to parents as protectors was experienced as traumatic by the child. The child felt ashamed, humiliated and powerless, having lost the right to control his/her own body.

Conclusion

From the young child’s perspective, restraint is never supportive. Children require a sense of security to overcome fear. When the child seeks security in an adult, the adult’s response becomes extremely important. Children need be guide and be guided by adults, until they think: “I can manage this”. Adequate support enables a caring situation characterised by mutual trust. Parents ought to be involved to help alleviate fear, but strategies for collaboration and role definition for parents and health care professionals need to be reassessed.

Keywords
child, cancer, restaint
National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-11378 (URN)
Conference
SIOP, Washington, 2016
Available from: 2016-12-13 Created: 2016-12-13 Last updated: 2017-03-17Bibliographically approved
Darcy, L., Enskär, K. & Björk, M. (2016). The everyday life of young children through their cancer trajectory. In: The 48th congress of the international society of paediatric oncology: SIOP. Paper presented at SIOP, Dublin, 2016.
Open this publication in new window or tab >>The everyday life of young children through their cancer trajectory
2016 (English)In: The 48th congress of the international society of paediatric oncology: SIOP, 2016Conference paper, Oral presentation with published abstract (Other academic)
Abstract [en]

Background

The young child’s experiences of living with cancer are crucial to providing evidence based care. The aim of this study was to explore and describe experiences of health and functioning in the everyday life of young children with cancer, over a three year period from diagnosis.

Methods

Children and parents were interviewed at four time points and questionnaire data collected at five time points over a three year period from diagnosis. A qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. Mixed methods were used to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. These codes were then used to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

Results

The everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Children living with cancer want to be participatory in their care and to have access to their parents as protectors. They need access to and ongoing contact with peers and preschool. Although physical difficulties in living an everyday life with cancer reduce over time, new difficulties emerge as the child post cancer treatment re-enters society.

Conclusions

The results of this study reveal emerging issues of survivorship that need to be addressed as young children learn to live an everyday life with cancer and the effects of its treatment. A structured follow-up throughout the cancer trajectory and not just during active treatment is necessary. A child-centered philosophy of care would guide the child towards attainment of health and wellbeing.

National Category
Nursing
Research subject
Människan i vården
Identifiers
urn:nbn:se:hb:diva-11381 (URN)
Conference
SIOP, Dublin, 2016
Funder
Swedish Childhood Cancer Foundation
Available from: 2016-12-13 Created: 2016-12-13 Last updated: 2017-03-17Bibliographically approved
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