| 1. |
- Afua Quaye, Angela, et al.
(författare)
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Children's active participation in decision‐making processesduring hospitalisation : An observational study
- 2019
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Ingår i: Journal of cilinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 28:23¨24, s. 4525-4537
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: The aim was to explore and describe the child's active participationin daily healthcare practice at children's hospital units in Sweden.Objectives: (a) Identify everyday situations in medical and nursing care that illustratechildren's active participation in decision‐making, (b) identify various ways of activeparticipation, actual and optimal in situations involving decision‐making and (c) explorefactors in nursing and medical care that influence children's active participation indecision‐making.Background: Despite active participation being a fundamental right for children, theyare not always involved in decision‐making processes during their health care. Therestill remains uncertainty on how to support children to actively participate in decisionsconcerning their health care.Design: A qualitative study with overt, nonparticipant observations fulfilling theCOREQ checklist criteria.Methods: Observations of interactions between children aged 2 and 17 years withboth acute and chronic conditions, their parents, and healthcare professionals wereconducted at three paediatric hospitals in Sweden. The Scale of Degrees of SelfDetermination was used to grade identified situations. The scale describes five levelsof active participation, with level one being the least and level five being the mostactive level of participation. Normative judgements were also made.Results: Children's active participation was assessed as being generally at levels fourand five. Children demonstrated both verbal and nonverbal ways of communicationduring decision‐making. Findings indicated that children's, parents' and healthcareprofessional's actions influenced children's active participation in decision‐makingprocesses involving healthcare.Conclusions: Healthcare professionals specialised in paediatrics need to embrace botha child perspective and a child's perspective, plan care incorporating key elements of achild‐centred care approach, to ensure children's active participation at a level of theirchoosing.
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| 2. |
- Afua Quaye, Angela, et al.
(författare)
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How are children’s best interests expressed during their hospital visit? : An observational study
- 2021
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 30:23-24, s. 3644-3656
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Tidskriftsartikel (refereegranskat)abstract
- Aims and objectives: To describe ways in which children's best interests were observed to be expressed in paediatric settings during their hospital visit. Background: The best interests of the child are embodied in national and international legal systems, although the definition remains problematic. The child's limited autonomy mandates duty bearers to have both a child perspective and the child's perspective when considering what the best interest of the child entails in care situations. Design: A qualitative descriptive study with overt, non-participant observations fulfilling the COREQ criteria. Methods: Thirty-two observations of interactions between children aged 2 to 17 years with both acute and chronic conditions, their parents and healthcare professionals were conducted at three paediatric hospitals in Sweden. Inductive and abductive reasoning were used in the content analysis of data, which followed the identification, coding, categorising and abstraction of observed patterns of the best interest of the child. Results: Findings reveal facilitating and obstructing factors for the child's best interests to be safeguarded in healthcare situations. Children were guided in or hindered from exercising their competence. The observations showed a variation in actions taken by both parents and healthcare professionals to safeguard the best interests of the child. Conclusions: Determining the best interest of the child requires a case-by-case basis, as it is context-dependent, situational, flexible and dependent on all actors involved and actual decisions made. Relevance to clinical practice: Healthcare professionals’ actions can facilitate or obstruct observed expressions of the child's best interest. It is essential to enhance healthcare professionals’ communication skills, knowledge awareness and continuing education about the rights of children receiving healthcare services. Reflections and discussions on how to protect the best interests of children may help healthcare professionals to uphold children's best interest in daily clinical practice.
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| 3. |
- Al-Motlaq, Mohammad A., et al.
(författare)
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Toward developing consensus on family-centred care : An international descriptive study and discussion
- 2019
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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 23:3, s. 458-467
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Tidskriftsartikel (refereegranskat)abstract
- Nurses around the world have described family-centred care (FCC) in various ways. With limited evidence regarding its implementation and with dissent among professionals regarding outcomes that are amorphously defined across age groups, systems and global settings, a group of children’s nursing experts from around the world collaborated to seek clarification of the terms, deconstruct the elements in the model and describe empirically a consensus of values toward operationally defining FCC. A modified Delphi method was used drawing on expert opinions of participants from eight countries to develop a contemporary and internationally agreed list of 27 statements (descriptors of FCC) that could form the foundation for a measure for future empirical psychometric study of FCC across settings and countries. Results indicated that even among FCC experts, understandings of FCC differ and that this may account for some of the confusion and conceptual disagreement. Recommendations were identified to underpin the development of a clearer vision of FCC.
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| 4. |
- Cederved, Catarina, 1979-
(författare)
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Alleviating anxiety in children with cancer facing radiotherapy : The creation of a serious game
- 2023
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Children undergoing radiotherapy (RT) can experience anxiety, and explaining the procedure through a serious game could be a means to alleviate anxiety. Children have the right to take part in research that concerns them. Through co-creation stakeholders can be part of the process and thereby ensure that the developed product is suitable for the end users. The overarching aim was to investigate the developmental process of a serious game about RT, with a focus on the influence of co-creation, the feasibility of the game, and the game’s effects on self-rated anxiety by children undergoing RT.The thesis consists of four studies, where the first three describes the developmental process of the serious game from different aspects. Study I describes the children’s and their parents’ contributions to the game development based on data from interviews, audio recordings from workshops, and filmed gameplay. Nine children participated, 7 to 10 years old. Study II describes the experiences of seven parents who participated in the first study through interviews. Study III consist of interviews made with thirteen researchers, game designers and hospital staff. The interviews describe the participants’ experiences of taking part in the developmental process of the game. In study IV, reach and acceptability of the game was tested through a feasibility study at one clinic. . It was a randomized pilot, waiting list based study where 22 children participated. Analyses were performed by thematic analysis (Study I and III), content analysis (Study II) and statistical calculations (Study IV).The results showed that every participant involved in the development of the game contributed to the process. The method used in study I can be applied by researchers to co-create serious games with children. The children were active participants and had a consulting and informative role in the development, and their participation led to numerous changes. The interdisciplinary work was challenging but with ample time and an open climate it worked. A majority of children reported anxiety at the start of RT. In conclusion, the children’s participation impacted the game’s design and its content. The children’s abilities to participate in workshops was affected by their disease. Not all of the feasibility criteria set for study IV were reached. There were too few participants enrolled in the study to conclusively answer if the game had an effect on self-reported anxiety.
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| 5. |
- Coyne, Imelda, et al.
(författare)
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Children's participation in decision-making : Balancing protection with shared decision-making using a situational perspective
- 2011
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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 15:4, s. 312-319
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Tidskriftsartikel (refereegranskat)abstract
- Children's participation in decision-making in the health care setting is complex because parents and health professionals tend to take a protective stance towards children to act in their best interest. Children prefer to be protected in some situations and to share decision-making in others. Adults in the health care setting need to consider children as individuals, rather than as a homogenous group, and take into account that a child's competence and preferences will depend on the circumstances in every situation. This article argues for a situational perspective of children's participation to act in the child's best interest and to balance protection with shared decision-making, according to children's rights and desires.
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| 6. |
- Coyne, Imelda, et al.
(författare)
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Reframing the focus from a Family-centred to a child-centred care approach for children's healthcare
- 2016
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Ingår i: Journal of Child Health Care. - : SAGE Publications. - 1367-4935 .- 1741-2889. ; 20:4, s. 492-502
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Tidskriftsartikel (refereegranskat)abstract
- In this article, we argue for a conceptual move from family-centred care (FCC) to a child-centred care approach and the implications for clinical nursing practice. Firstly, we argue that the parents and professional dominance constructs an asymmetric relationship towards the child, which may take away the focus from the child; Secondly, we need to renew efforts to promote the fundamental principles of protection, promotion and participation rights for children and young people according to the United Nations Convention on the Rights of the Child declaration and thirdly, we need to strengthen the child’s perspective and to view the child as an agent representing own experiences and wishes to be respected and negotiated.
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| 7. |
- Foster, Mandie Jane, et al.
(författare)
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Seeing lockdown through the eyes of children from around the world : Reflecting on a children's artwork project
- 2021
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Ingår i: Nursing Praxis in Aotearoa New Zealand. - : College of Nurses Aotearoa - NZ - Inc. - 2703-4542. ; 37:3, s. 104-115
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Tidskriftsartikel (refereegranskat)abstract
- The COVID-19 pandemic created new challenges for children including access to education and limiting social and emotional connections to extended family, friends, and the community. Globally, opportunities for sharing children’s self-reported experiences during lockdown were limited. The primary aim of this project was to create an art-eBook that reflects children’s experiences of life during the COVID-19 pandemic that could be shared with other children around the world. Secondly, we wanted to reflect on the consultation undertaken within the International Network of Child and Family Centered Care (INCFCC) using Gibbs (1988) reflective cycle framework. Children from around the world were invited to submit a piece of artwork that reflected their experience during the COVID-19 pandemic via a Qualtrics-survey in May 2020. The children’s artwork and written pieces were transcribed verbatim into an eBook and the artwork was further placed into groups based on similarity of meaning. Fifty-five children from 17 countries submitted an artwork piece. Four groups were evident within the children’s artwork including infection control measures, positive experiences and emotions (connection to family, fun activities), negative experiences and emotions (social impact, emotional impact), and uniting children globally. The eBook illustrates how children of all ages can provide meaningful insightful commentary and valuable information on their experiences during an unprecedented pandemic.
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| 8. |
- Harder, Maria, et al.
(författare)
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Five-year-old Children's Tuning-in and Negotiation Staregies in an Immunization Situation
- 2011
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Ingår i: Qualitative Health Research. - : SAGE. - 1049-7323 .- 1552-7557. ; 21:6, s. 818-829
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Tidskriftsartikel (refereegranskat)abstract
- In this article, we have explored 5-year-old children's expressions when they as actors took part in an immunization situation in the Primary Child Health Care (PCHC) service in Sweden. Although children's health and development are the main concern in the PCHC service, their perspectives in such a setting have not been explored fully. To capture children's perspectives we used a hermeneutic design and video observations. The findings revealed children as competent and active participants, contributing to the construction of the PCHC situation in mutuality with the nurse and the parent. The conceptualization of children's expressions and actions revealed how they influenced and dealt with a PCHC situation by using strategies of tuning-in, affirmative negotiation, and delaying negotiation. Understanding children's actions will assist nurses to act with sensitivity when they encounter and support children.
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| 9. |
- Lundberg, Veronica, et al.
(författare)
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How children with juvenile idiopathic arthritis experience participation and communication in healthcare encounters : Children’s, young adults’ and parents’ views
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Annan publikation (övrigt vetenskapligt/konstnärligt)abstract
- Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting themselves. Children and parents are more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters. Aim: The aim was to explore children and young adults with Juvenile Idiopathic Arthritis (JIA) experiences and parents of children with JIA about the children´s participation and communication with healthcare professionals.Methods: A qualitative study design was used, with participatory workshops, held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman’s Qualitative Content Analysis (QCA) framework resulting in one main theme and two subthemes. Results: The theme “Moving from alienation to familiarity with healthcare encounters” illustrates how the children needed extra support from healthcare professionals (HCPs) and their parents to be able to participate. They needed to feel safe, understood and respected by the HCPs and they wanted to receive the help they needed. The subtheme “Distancing oneself from healthcare” describes why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme “Being a normal event in life” explains how children felt more comfortable in healthcare over time when they knew what would happen, and felt that HCP gave them the support they needed to participate.Conclusions: Children’s participation in healthcare encounters varied depending on if children felt alienation or familiar to the healthcare situations. Children distance themselves and are reluctant to healthcare encounters if they find them emotionally distressing and feel disregarded. In time children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.
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| 10. |
- Lundberg, Veronica, et al.
(författare)
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How children with juvenile idiopathic arthritis view participation and communication in healthcare encounters: a qualitative study
- 2021
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Ingår i: Pediatric Rheumatology. - : BioMed Central (BMC). - 1546-0096. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Children report that they do not participate in their healthcare as much as they want, despite having the lawful right to form their own views and the right to express those views freely in all matters affecting them. Children and parents appeared to be more satisfied when healthcare professionals (HCP) use a participatory style in healthcare encounters.Aim: To explore how children, adolescents and young adults with Juvenile Idiopathic Arthritis (JIA) and parents of children with JIA view their participation and communication in healthcare encounters with healthcare professionals.Methods: Using a qualitative study design, participatory workshops were held separately for children and young adults with JIA and parents of children with JIA. The workshop data were analysed with Graneheim and Lundman’s Qualitative Content Analysis resulting in one main theme and two subthemes.Results: The theme “Feeling alienated or familiar with healthcare encounters” illuminates how children felt alienated at healthcare encounters if they found the encounters emotionally distressing. Children could withhold information regarding their health and function from both HCPs and their family and friends. The subtheme “Distancing oneself from healthcare” describe why children felt reluctant to engage in the healthcare encounters and experienced difficulty expressing how they really felt. The subtheme “Being a normal event in life” describe how children felt more comfortable over time engaging with HCPs when they knew what would happen, and felt that HCPs gave them the necessary support they needed to participate. Conclusions: Children’s participation in healthcare encounters varied depending if children felt alienated or familiar to the healthcare situations. Children distance themselves and are reluctant to engage in healthcare encounters if they find them emotionally distressing and feel disregarded. Over time, children can become more familiar and at ease with healthcare situations when they feel safe and experience personal and positive encounters. When the children are prepared for the encounter, provided with the space and support they want and receive tailored help they are more enabled to participate.
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| 11. |
- Rising Holmström, Malin, 1966-, et al.
(författare)
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To integrate and manage diabetes in school : Youth's expereinces of living with Type 1 diabetes in relation to school- a qualitative study
- 2017
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Ingår i: International Diabetes Nursing. - : Informa UK Limited. - 2057-3316 .- 2057-3324. ; 14:2-3
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Tidskriftsartikel (refereegranskat)abstract
- In Sweden, each year approximately 700 children develop Type 1 diabetes. Living with the illness is a challenge for youth and requires adjustments to lifestyle, and to manage school. The aim was to describe youths’ experiences of living with Type 1 diabetes in relation to school. A qualitative research design was used and interviews were performed with eight girls and five boys with Type 1 diabetes. The interviews were subjected to qualitative content analysis. Three themes were identified: to be friends with the diabetes, striving for normality and receiving support from others. Results showed a need to increase the understanding of T1D and diabetic competence within the Swedish school system and knowledge of youths’ own experiences is vital in this work. Living with T1D was a struggle for normality, independency and the youth needed to be friends with diabetes to handle everyday self-management. Although there are demanding life and school circumstances, it eventually becomes possible for the youth to handle the illness and to integrate and manage diabetes in school.
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| 12. |
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| 13. |
- Stålberg, Anna, 1976-, et al.
(författare)
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Using an interactive communication tool in healthcare situations : Patterns in young children's use of participation cues
- 2019
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Ingår i: Journal of Child Health Care. - : SAGE PUBLICATIONS LTD. - 1367-4935 .- 1741-2889.
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Tidskriftsartikel (refereegranskat)abstract
- This study forms part of a larger project about developing and using interactive technology to facilitate young children's participation in healthcare situations. Children's participation in these situations improves their motivation and situated understanding. Likewise, their participation helps professionals to more fully understand the child's perspective. In the project, an interactive communication tool, that is, an application suitable for tablet use, was developed with children, aged three to five, in two clinical settings. When tested, the children's participation cues, identified from video recordings of healthcare situations, were understood as having curious, thoughtful or affirmative meanings. This study aimed to investigate the similarities and differences in the young children's use of participation cues when using an interactive communication tool in healthcare situations. A secondary analysis of the identified cues was performed focusing on age, setting and examination or procedure. In total, 2167 cues were identified representing either curious, thoughtful or affirmative cues. The curious cues were mainly used (66%), followed by thoughtful (28%) and affirmative (6%) cues. Differences in cue usage were seen in relation to the children's age and setting. Knowing how children may react to common healthcare procedures may help increase healthcare professionals' awareness of the need to support children in an individual and situational way.
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| 14. |
- Söderbäck, Maja, et al.
(författare)
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Family centred care: illusion, rhetoric or reality?
- 2008
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Konferensbidrag (refereegranskat)abstract
- Overview of symposiumFamily centred care has been promoted as the ideal way to structure the nursing care of sick children and their families and is seen as a key principle in children’s health care provision globally. The involvement of parents in the delivery of care is seen as leading to positive outcomes both for the child and family. Although parent participation has been promoted for several decades, been formalised in numerous government policy documents, and embraced by health professionals in hospital and community, it remains a difficult concept to operationalise. There is discrepancy between what is espoused and what is actually practiced. There is confusion about the concept and inconsistent application in practice in hospital and community healthcare settings. The purpose of this symposium is to present a considered critique of family centred care which will be of use to practitioners and educators and which will provide a forum for debate and collegiality. The key objectives are:1. To highlight the idealised notion of FCC and challenge current assumptions of FCC.2. To contrast the idealised version with reality, drawing on our research (experiences from England, Sweden, Mozambique, Australia, Indonesia, Thailand) to substantiate the content3. To discuss how FCC is about survival, obligation or choice.4. To suggest ways in which FCC may be implemented to provide a firmer basis for development and evaluation of practice.The symposium will consist of four related presentations that focus on family centred care and with the opportunity for participants to make both written feedback/response to the papers and to join in a discussion with the presenters.Presentation 1: ‘The elephant in the room?’ Professor Bernie CarterFamily centred care is part of our psyche, part of our professional raison d’être. Children’s nurses are not actually born hard-wired to believe in family-centred care but the wiring is laid down early in our education and its centrality to our way of working and being with families continues to be emphasised. However, there is a paradox at the heart of FCC: we all believe that it is good but there is no ‘hard’ evidence (and not much ‘soft’ evidence) that demonstrates that it is effective. Despite this we ‘know’ that it is good, we promulgate it as a way of working – perhaps because we can’t think of anything else that’s better. In this paper, Bernie intends to problematise and question our faith in FCC and provide a stepping off point for my fellow presenters’ papers.Presentation 2. Professor Imelda CoyneThe pendulum of parent participation has swung from excluding parents in the past to making parents feel total responsibility for their child in hospital. Imelda will illustrate how parents want to stay with their hospitalised child (in varying ways) primarily because of concern for their child’s welfare but then feel compelled to be there because of nurses’ expectations. Nurses controlled the nature of parents’ participation and parents had to ‘toe the line’. Although participation was presented as optional, parents were presented with no course other than acceptance. Parents were expected to stay with their child, behave properly and be involved in care. When certain parents did not adhere to these norms, they caused disruption to the order and routine of the ward. The dominant process appeared to be the socialisation of parents to their role on the ward through inclusionary and exclusionary tactics. The results from this research (from UK & Ireland) indicate that the current models or theories on parent participation/ partnership are inappropriate or inadequate because they do not address important elements of children and parents’ experiences in hospital. The impact of the burden of caring and providing a consistent presence on parents and their families could be considerable and adversely affect parents’ welfare in the long term.Presentation 3 Dr Maja SoderbackMaja will illustrate how participation or mutuality are co-created by nurses and the involved family caregivers during a child’s hospitalization. The situated actions are culture bound and different professional cultures struggle with tradition of family caregivers’ involvement as well as different work conditions. Maja will draw on data from two studies (from Sweden and Mozambique) to provide insights into the nurses’ mastering of their everyday encounters with family caregivers during a child’s hospitalization. The studies used ethnography with participant observations and interviews. The fieldwork in Sweden occurred at three paediatric wards. One or more caregivers from a family were living-in with their children 0-18 years with various illnesses. Five paediatric wards were included in Mozambique. The age of the hospitalized children varied between 0-7 years, with various illnesses. All children mostly had one family caregiver living-in with them. The conclusions demonstrate how a nurse interacts with family caregivers, and how he or she must be focused on intention and action in a specific situation, context and culture of life, and work conditions. Also important are the nurse’s beliefs about what constitutes both nursing and parenting, and the rights of children.Presentation 4. Professor Linda Shields and Dr Jan PrattThere are myths and misconceptions about family-centred care, and Linda and Jan will “bust” some of these based on work in developing countries. Also, they will describe the Cochrane systematic review of FCC that they undertook, explaining the inclusion and exclusion criteria for studies and the rationale behind them. The aim was to find studies that might show whether or not FCC really works. The results showed that at this stage, there is no evidence either way. From this, they will postulate that families' experiences of FCC are driven by survival, obligation or choice, and add this to the mix of discussion that will be an important part of this seminar.Conclusion and Discussion. Professor Bernie CarterIn conclusion, Bernie will synthesise the core concepts presented in each of the four papers. These concepts will act as triggers for the discussion with the symposium participants with the aim of trying to further our understanding of FCC.
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| 15. |
- Söderbäck, Maja, et al.
(författare)
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The importance of including both a Child perspective and the Child's perspective within Health Care settings to provide truly Child centred care.
- 2011
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Ingår i: Journal of Child Health Care. - : SAGE. - 1367-4935 .- 1741-2889. ; 15:2, s. 99-106
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Tidskriftsartikel (refereegranskat)abstract
- The UN Convention on the Rights of the Child (1989) asserts the right of every child to self-determination, dignity, respect, non-interference, and the right to make informed decisions. The provision of quality care in health services tailored to children's preferences means that health professionals have a responsibility to ensure children's rights, and that the child is encouraged and enabled to make his or her view known on issues that affect them. This paper will help illuminate and differentiate between a child perspective and the child's perspective in health care settings. The issues are supported with research which illustrates the different perspectives. Both perspectives are required to perceive and encounter children as equal human beings in child-centred health care settings.
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