Purpose: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment.

Materials and methods: Hospital, habilitation and school records for nine children (5–11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations.

Results: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children’s documented problems with participation in everyday life.

Conclusions: The combination of ICF and CPS can provide a comprehensive view of the child’s problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitation Care should be guided by interventions and support directed at individual children and their everyday life. The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child’s patterns of problems and how these affects the child’s everyday life. It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children’s natural settings. The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children. 

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.

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.

The young child’s experiences of living with cancer are crucial to providing evidence based care. The overall aim of this thesis 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, to provide insights and suggestions to improve evidence based care.

The first and second papers in the series of four for this thesis used a qualitative content analysis to describe the child’s experiences shortly after diagnosis and six and 12 months later. The third paper used mixed methods to identify a comprehensive set of ICF-CY codes describing everyday health and functioning in the life of the young child with cancer. The fourth paper used the identified comprehensive set of ICF-CY codes to follow changes in everyday health and functioning over the study’s entire three year period from diagnosis.

Entry into the health-illness transition was characterised by trauma and isolation. Health and functioning in everyday life was utterly changed and physical difficulties were at their peak. The passage through transition was characterised by an active striving on the part of the child to make a normal everyday life of the cancer experience. Difficulties affecting health and functioning in everyday life decreased and changed during the trajectory, though feelings of loneliness prevailed. A new period of stability in the child’s post treatment life was seen from two years after diagnosis and onwards, with (re)-entry to preschool/school and other social activities. However, an increase in difficulties with personal interactions with others and access to, and support from healthcare professionals was seen. Variances were seen within individual children’s’ trajectories.

In summary it can be stated that the everyday life of young children with cancer changes over time and health care services are not always in phase with these changes. Young 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. 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 well-being.

Both the child’s own perspective and a child’s perspective as described by adults caring for them should be seen on a continuum, rather than as opposites. This view could help ensure that young children become visible and are listened to as valuable contributors to care planning. Knowledge of health-illness transition can be useful in illustrating everyday health and functioning through long term illness trajectories.

Purpose Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis. Methods Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out. Results The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described. Conclusion Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

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).

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.

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.

Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

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.

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.

Background Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY). Aims The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment. Method Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures. Results A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence. Conclusions The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children’s health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

Background: Children are a relatively marginalized group when doing research in the context of illness, young children particularly so. This even though children can and should contribute their point of view in providing evidence-based care. This article contributes the experiences of Nurse Researchers in gathering research data in Sweden on the lived experiences of children undergoing needle-related medical procedures, living with home mechanical ventilation or undergoing treatment for cancer.

Methods: Nine published articles from four unique Swedish PhD dissertations in Caring Science formed the basis for the present paper where various open and critical qualitative approaches for gathering data were used.

Results: Accessing and interpreting the lived experiences of ill children in healthcare research presents methodological, ethical, and cultural challenges. As with health care contexts in other countries, capturing the ill child’s experiences in Sweden requires several different methods. Health researchers in Sweden must navigate a complex landscape of communication barriers, emotional and psychological challenges, and structural issues within the healthcare system to effectively access and understand the lived experiences of children.

Conclusions: This paper adds to the knowledge base of research with a focus on gathering the experiences of children with illness within a Swedish health care context. These insights underscore the importance for all researchers of using child-friendly, inclusive methods to understand children’s lived experiences thus ensuring their voices are heard and respected in health research. Children’s and families’ inability to speak the native language of a country cannot be a hinder for inclusion, but rather be encouraged. 

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.

Children’s need for support is tied to their experiences of fear during times of trauma and uncertainty. Two recent studies gave insight to the experiences of young children (3-7 years of age) undergoing painful medical procedures. 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.

The aim of this paper is to review the use of restraint with young children during painful medical procedures

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 to 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.

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.

BACKGROUND:: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life. OBJECTIVE:: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis. METHODS:: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis. RESULTS:: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated. CONCLUSIONS:: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being. IMPLICATIONS FOR PRACTICE:: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.

Problem: Little is known about issues of patient-reported problems, in particular within psychiatric services for children with mental ill health. Child and family complaints related to child mental health services can be analyzed and discussed in light of the universal human right to health and healthcare. Therefore, the aim of this study was to analyze child and family complaints related to child mental health services. Methods: A retrospective, descriptive design was used. Child and family complaints were analyzed with a qualitative thematic analysis. Findings: The findings were described in three themes describing lack of access to care, inadequate communication between services and children with mental ill health and their families, and lack of clarity of who is responsible for care, leading to neglect of children's needs. These issues place a huge responsibility on parents or relatives. Conclusion: Better communication within mental health services, and better collaboration with other services such as school and social services, could limit children's suffering. Healthcare services with named professionals who specialize in child mental health and provide continuity in care, are required. General human rights principles should guide planning and care of children. 

PURPOSE: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives.

METHOD: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden.

RESULTS: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%).

CONCLUSIONS: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice.

Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.

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.

During times of trauma and uncertainty such as when undergoing medical procedures, children’s need for support is tied to their experiences of fear. Two recent Swedish PhD dissertations gave insight to the experiences of young children (3-7 years of age) with cancer.

The aim of this paper was to review the use of restraint with young children with cancer during painful medical procedures, as described in several recent Swedish studies.

Results showed that children felt ashamed, humiliated and powerless, having lost the right to control his/her own body. Nurses described the use of restraint as sometimes necessary due to logistical constraints but also as supportive to children. Parents helped restrain children and took part in painful and unpleasant procedures and treatments.  Lack of access to parents as protectors was experienced as traumatic by the child.

Restraint is never supportive from the young child’s perspective. 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 to 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.

Purpose: Children's perspectives in the context of health service delivery have historically been seen as unimportant. They have been viewed as unintelligent, unable to effectively share or tell of their experiences or fully participate in their care, potentially resulting in a sense of dehumanisation. 

Method: The present paper illustrates children's experiences when undergoing medical procedures, using application of the eight dimensions of humanised care theoretical framework. 

Results: Findings from six published papers were reflectively interrogated to identify implicit findings related to the dimensions of humanised care. These implicit findings show ways of caring for childrenwhichcan lead to enhanced human sensitivity in care or conversely where the dimensions of being human are obscured to greater or lesser degrees and can result in forms of dehumanisation. 

Conclusions: Inadvertent dehumanising features of practice can be mediated by encouraging the inclusion of children's own lifeworld perspective and make room for their voices in both care and research. In this way the present well documented power imbalance could be addressed. Adding the value of the theoretical framework highlights areas of need for young children to be cared for as human beings.

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

Background: Children often report both fear and pain in conjunction with clinical care and treatment. Interventions developed in the field have still not been sufficient to prevent and relieve children’s fear and pain. More knowledge, from children’s own perspectives, is needed about how they deal with their experiences.

Aim: To explore child-identified strategies that children use to manage fear and pain during needle-related medical procedures in hospital.

Methods: Interviews with children, age 4–12 years, with experience of hospital care were analysed qualitatively using content analysis.

Results: Children have self-identified strategies for dealing with fear and pain during hospital care and treatment. The strategies vary depending on examination or treatment and on how the child felt at that particular day. Children describe what they can do themselves, how adults can empower them and support from surroundings as strategies that give them a choice and a voice. Children wished to have influence, decide when and how information should be given, scream out loud or squeeze something hard, to deal with fear and pain. The results also show that children tried to be brave, gain control and think positively. Something nice to look at and opportunities to play with others also contributed.

Conclusions: Strategies vary between children and are used differently on different occasions. Healthcare professionals pose a threat to the child’s needs and ability to use their strategies due to lack of knowledge of the child’s chosen strategies.

Objective

This study explores children’s expressions of emotional cues and concerns during needle procedures, nurses’ responses and findings in relation to children’s age and sex.

Methods

Twenty-six children aged 6–12 years were video recorded during a preoperative needle procedure. Emotional communication was analyzed using Verona Coding Definitions of Emotional Sequences.

Results

A total of 111 cues or concerns were identified in the observed needle procedures, with a distribution of 77 cues and 34 concerns. A majority of children (85%) expressed emotional cues through non-verbal communication. No differences between child age or sex related to expressed emotion were found. The child elicited the communicated emotion in 98% of sequences. Nurses' responses were coded as not providing space for communication in 75% of sequences.

Conclusion

Children are capable of expressing their emotional distress, primarily non-verbally, during needle procedures. A child showing less overt expressions during a needle procedure does not necessarily experience less fear or pain. The nurses’ communication focused on practical information during the needle procedure, with less attention to the child’s distress.

Practice implications

Nurses need to develop strategies to be aware of emotions the child communicates before, during and after a needle procedure.

To examine whether children experience less fear or pain using a child-centered intervention and if there were differences between the intervention group and the control group regarding heart rate, time required for the procedure, success rate for the cannula insertion, and patient satisfaction. A controlled single-center case study of observational design, with one control and one intervention group. Child self-reported fear or pain levels did not reveal any differences for those receiving the intervention compared with controls. However, according to a behavioral observation measure with the Procedure Behavior Check List, effects of the intervention were lower distress in relation to fear and pain during the cannula insertion. The time it took to perform the cannula insertion also decreased significantly in the intervention group. More children in the intervention group reported that they were satisfied with the needle procedure compared with the children in the control group. The child-centered intervention provides reduced observed distress related to fear and pain in children undergoing a cannula insertion and reduced total time by more than 50%. This study found that child involvement in care strengthen their ability to manage a needle procedure. 

Background

In 2020, the United Nations Convention on the Rights of the Child (UNCRC) became law in Sweden. This puts extra demands on Swedish health care for children in need. This study aimed to investigate children's experiences and paediatric nurses' experiences of caring in accordance with the UNCRC.

Methods

Interviews were conducted in 2019 with 10 children and 13 nurses at a paediatric clinic in western Sweden. Child and nurse data were analysed separately with qualitative content analysis. The results are presented as a synthesis of the combined analysis of both data sets.

Results

Children did not always meet health-care professionals with the necessary competence to care for them, and they were not always cared for in a child-friendly environment. Even though nurses in paediatric care had the competence necessary to meet children's rights in health care, organizational issues made it challenging. Providing health care in accordance with the UNCRC principles required time and competence. Sufficient time to help children participate in their care and ensure that they feel secure was considered necessary?regardless of the health-care context.

Conclusion

Health-care encounters without the necessary time or competence can affect children and future encounters negatively. Instruments to safeguard children's rights in health care need to be developed and implemented, such as a documentation system to make children's rights visible and/or UNCRC certification. Implementation of UNCRC principles in all health-care situations for children as standardized care requires competence, involvement, strong leadership and economic support. Children's voices in research can assist in guiding care.

Purpose

To illuminate the meaning of social relationships and health concerns as experienced by adolescents and young people during the COVID-19 pandemic.

Methods

A longitudinal qualitative study was conducted. Data reported from 172 adolescents and young people aged 12–24 years in five countries; Chile, South Africa, Sweden, the United Kingdom and the United States collected from May 2020 to June 2021 were analysed via thematic analysis.

Results

Adolescents and young peoples’ experiences of social relationships and health concerns were described in seven themes: Family proximity, conflicts and frustration; difficulties and challenges related to limited living space; peer relations and maintaining friendship in times of social distancing; the importance of school as a place for interaction; vulnerability, emotional distress and uncertainty about the future; health concerns and sense of caring for others; and worries and concerns related to financial hardship. These reports show that the changes to everyday life that were introduced by public responses to the pandemic generated feelings of loneliness, vulnerability, and emotional distress, as well as increased sense of togetherness with family.

Conclusions

The everyday lives of adolescents and young people were restricted and affected more by the consequences of the pandemic than by the COVID-19 virus. These experiences had various impacts on well-being and mental health, where some individuals felt more exposed and vulnerable to emotional distress and loneliness than others. Family and peer relationships could be protective and support a sense of togetherness and belonging. Hence, social relationships are important to provide emotional support. Support for adolescents and young people should be tailored accordingly around social and emotional concerns, to encourage health and well-being.

BACKGROUND: This study focuses on patient complaints from a human rights perspective. Despite the UN Convention on Human Rights being widely recognized, it has not previously been examined in relation to patients' complaints on health care. A human rights perspective and the right to the highest attainable standard of health are a major sustainability challenge in health care today. Previous research points to patients' complaints as a growing concern for health-care organizations, and the handling of this concern can lead to improvement in health-care services.

OBJECTIVE: The aim was to analyse patients' complaints on health-care services and to examine expressed needs for health care from a human rights perspective.

METHODS: In this descriptive study, a random sample of 170 patient complaints about Swedish health-care services were qualitatively analysed from a human rights perspective.

RESULTS: The complaints are described in three themes: the right to available and accessible health-care services, the right to good quality health-care services and the right to dignity and equality in health care. Questions of availability, accessibility, acceptability and quality are highlighted by patients and/or relatives making complaints on health-care services.

DISCUSSION AND CONCLUSION: This study emphasizes the human right to health in relation to patient complaints. Findings indicate that this right has been breached in relation to availability, accessibility, acceptability and quality in health-care services. Further debate, education and investigations are necessary to ensure that patients' rights to health and health care not be taken for granted.

The improvement of mental healthcare services requires patients' experiences to identify problems and possible deficits in care. In this study, we explored the nature and meaning of formal patient complaints about mental healthcare services in one region of Sweden using a descriptive design with a qualitative approach. A systematic random sample of 106 formal patient complaints about mental healthcare services in 1 Swedish county was selected and analysed thematically, based on descriptive phenomenology. Themes identified were: lack of access to mental healthcare services and specialist treatment, problems related to unmet needs and difficulties with healthcare staff, insufficient care and treatment and lack of continuity in care, and experiences of not been taken seriously or feeling abused by staff. The vulnerability of patients already in the system is a greater issue than realized. The human right to health and the healthcare of patients with mental ill health can be strengthened by increased access to care, listening to patients properly, and delivering continuity in care.

Denna rapport handlar om klagomål på vård för personer med psykisk ohälsa. Analysen utgår från 153 anmälningar till patientnämnderna i Västra Götaland från första halvåret 2017. Anmälningarna har gjorts av patienter och närstående från tre typer av vård: primärvård, specialistpsykiatrisk vård för vuxna och specialistpsykiatrisk vård för barn och ungdomar. Innehållet har sedan granskats utifrån de mänskliga rättigheterna, med fokus på rätten till bästa möjliga hälsa för personer med psykisk ohälsa. Resultaten visar att personer med psykisk ohälsa eller deras närstående upplever att det kan vara svårt att få tillgång till psykiatrisk vård och utredning. Det kan ta månader eller år innan de får träffa rätt vårdpersonal. Att ha tillgång till vård vid behov är grundläggande för att uppnå bästa möjliga hälsa. Resultaten visar också att vården behöver anpassas efter olika behov och förutsättningar. Personer med psykisk ohälsa kan ha svårigheter att söka eller ta emot vård. Det kan handla om svårigheter att ringa telefonsamtal, att sitta bland andra människor i ett väntrum eller att få sin tid plötsligt avbokad eller ombokad. För att få vård på lika villkor som andra behövs en mer personcentrerad och människorättsbaserad hälso- och sjukvård. Patienter och anhöriga lyfter också att vården inte alltid är tillräckligt förutsägbar och regelbunden för personer med psykisk ohälsa. Patienter berättar att de får berätta sin historia för ny vårdpersonal, vilket kan kännas svårt för en person som berättar om psykiska problem. Vissa patienter får mediciner vid psykisk ohälsa, och upplever att de inte alltid får uppföljning av hur medicinen fungerar eller av biverkningar som kan uppstå. För barn med psykisk ohälsa beskrivs nästan samma problem som för vuxna personer. Barn som får vänta länge på utredning, ibland flera år, saknar stöd och hjälp. Det kan vara svårt för skolan att veta vad barnet behöver och hur de kan hjälpa till, när de inte vet barnets behov eller vad som är svårt. I vården av barn med psykisk ohälsa behövs också barnkompetens för att främja och skydda barns rätt till hälsa och utveckling. Rätten till bästa möjliga hälsa är en mänsklig rättighet som gäller alla, även personer med psykisk ohälsa. Anmälningarna visar att det finns situationer där rätten till hälsa inskränks för både barn och vuxna. Att inte få hjälp kan försämra hälsan ytterligare. För att skapa förutsättningar för bästa möjliga hälsa för vuxna och barn med psykisk ohälsa krävs tillgång till vård inom rimlig tid, att vården har en god kvalitet och att vården anpassas utifrån patientens behov och förutsättningar.

Child abuse recognition and the protection of children is a global concern. In Sweden, the role of the school nurse (SN) is to promote schoolchildren's health and development and to identify and prevent harm. The aim of this study was to describe Swedish SN experiences of suspecting, identifying, and reporting child abuse and to compare them with respect to (a) years of experience as SN, (b) age of SN, and (c) pupil population size. A descriptive design was used. Two-hundred and thirty-three SNs completed a survey detailing their experiences. Most SNs (96%) reported having suspected a child suffering from physical or psychological abuse. Approximately half of them reported occurrences of honor-related violence (54%) and of child sexual abuse (57%). SNs with less nursing experience reported significantly less recognition and reporting of child abuse. The findings indicate that experiences of child abuse are common. Thus, it is vital that SNs have the necessary competency and support to identify and report suspected child abuse.