Developing rights-based standards for children having tests, treatments, examinations and interventions: using a collaborative, multi-phased, multi-method and multi-stakeholder approach to build consensus.

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.

Children's individual voices are required for adequate management of 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.

Swedish School Nurses' Experiences of Child Abuse.

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.

Children's rights as law in Sweden-every health-care encounter needs to meet the child's needs.

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.

Unmet health-care needs and human rights-A qualitative analysis of patients' complaints in light of the right to health and health care.

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 development of the clinical assessment tool "Health and Everyday Functioning in Young Children with Cancer".

BACKGROUND: Young children's experiences of everyday life with cancer are vital in guiding care. The universal and interdisciplinary language of the International Classification of Functioning (ICF) and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) has wide reaching effects for the care of young children in need. The aim of this study was to select and validate the content of a clinical assessment tool (CAT) for health and everyday functioning in young children with cancer. METHODS: A comprehensive set of ICF-CY codes (n = 70) mapping everyday function and health was previously identified from the transcripts of 12 interviews with young children with cancer and their parents at a paediatric oncology centre in the west of Sweden. Three transcripts were from data collected shortly after diagnosis, three transcripts from 6 months after diagnosis, three transcripts from 12 months after diagnosis, and three transcripts from 18 months after diagnosis. The present study involved the development of items based on the ICF-CY codes. RESULTS: The CAT consists of 52 items grouped in four dimensions: "the child herself/himself," "the child's everyday life," "the child's need for support," and "the child's contacts with health care." CONCLUSION: The questions correlate well with known research results and highlight areas that are important for health and everyday life for young children with cancer. This tool, based on children's experiences, can be used by both parents and health care personnel such as nurses to highlight aspects of health and function in everyday life for the young child with cancer that otherwise might be missed. This novel approach using the ICF-CY could be used to guide the delivery of care towards living an everyday life with a long-term illness.

An Analytic Review of Clinical Implications From Nursing and Psychosocial Research Within Swedish Pediatric Oncology.

The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff.

A qualitative analysis of child and family complaints related to child mental health services.

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.

Positive effects of a child-centered intervention on children's fear and pain during needle procedures.

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.

Individual patterns of problems with participation, activity, body function and environment in everyday life for children who completed brain tumor treatment.

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 rehabilitationCare 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.

Adolescents' and young people's experiences of social relationships and health concerns during COVID-19.

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.

'Are they really allowed to treat me like that?' - A qualitative study to explore the nature of formal patient complaints about mental healthcare services in Sweden.

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.

Children's communication of emotional cues and concerns during a preoperative needle procedure.

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.

Experiences of Young Children With Cancer and Their Parents With Nurses' Caring Practices During the Cancer Trajectory.

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.

Young children's experiences of living an everyday life with cancer - A three year interview study.

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.

Medical procedures in children using a conceptual framework that keeps a focus on human dimensions of care - a discussion paper.

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.

Following Young Children's Health and Functioning in Everyday Life Through Their Cancer Trajectory.

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.

A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review.

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.

The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives.

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.

The process of striving for an ordinary, everyday life, in young children living with cancer, at six months and one year post diagnosis.

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.