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. 

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

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.

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.

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. 

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. 

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.

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.