INTRODUCTION: Children experience anesthetization as stressful, and many preoperative measures have been tested for reducing their anxiety. There is, however, little research about children's own experiences and thoughts about being anesthetized.

AIMS: The aim of the present study was thus to explain and understand the meaning of being anesthetized as experienced by children.

METHODS: A qualitative lifeworld hermeneutic approach was used. Data were collected through nonparticipant video observations, field notes, and interviews. The participants were children (n = 28) aged 4-13 years who required general elective minor surgery performed in four Swedish hospitals.

RESULTS: The four interpreted themes describe the children's experiences of being anesthetized: Being powerless, Striving for control, Experiencing an ambiguous comprehensibility, and Seeking security. The children struggled with anxiety as a result of their inability to protect themselves from perceived external threats while being anesthetized. In order to meet their needs, it would be beneficial for them to receive appropriate information in a calm, supportive, and protective environment.

CONCLUSION: The reasons for children experiencing anxiety when being anesthetized are multifaceted, and this study highlights the importance of listening to each child's own voice and striving to create an individually adapted caring and safe environment with as much protection as possible.

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

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.

Aim: The overall aim of the thesis is to create knowledge about what it means for younger children toundergo needle-related medical procedures (NRMPs), and what caring support in relation to this meansbased on nurses’, parents’, and younger children's perspectives.

Methods: The first and second papers used descriptive phenomenological analysis to describe themeanings of supporting younger children during NRMPs from the perspective of nurses (Ι) and parents(ΙΙ). The third and fourth papers used lifeworld hermeneutic analysis to explain and understand theconsequences related to NRMPs (ΙΙΙ) and support (ΙV) during these procedures from younger children’sperspectives. Data has been collected by participant observations and lifeworld interviews documented byvideo-recorded observations, field notes, and audio-recorded interviews. In total 60 people participated,fourteen nurses, twenty-five parents, and twenty-one children.

Main results: The results show that an important consequence for children of procedures with needles isexperiences of fear. The child's fear affects how the child is able to manage the procedure and the supportthe child gets from adults is crucial to whether the child's fear increases or decreases.

The support consists of giving support or receiving support. Parents support the child by safeguarding andprotecting the child during the needle-related procedure; they “keep the child under the protection of theirwings,” sometimes very close and sometimes a little further out under the wingtips. Nurses support thechild by starting from individual child’s experiences and needs; they "balance on a tightrope" in anunpredictable situation. In the meeting between the child, the parents, and the nurses, the adults areguided by the child in what forms of support are provided. This continues until the needle-related medicalprocedure is completed and the child can walk proud and strong from the procedure with a feeling that "Ican handle this.”

Conclusions: Children’s need for support during needle-related medical procedures is primarily tied tochildren’s experiences of fear. For the child to experience a caring support, adults need to understandchildren’s experiences of fear as well as children’s need for support and what form the support shouldtake. A caring support develops dialectically between children and adults in a circular movement. In such adialectic, the child guides the adult and vice versa. That children have the capability of guiding adultsduring needle-related medical procedures shows that they are active and participating. Here it becomesclear that there is no objective location of the phenomenon of support. Support can therefore only bestudied as a lived experience of those who need it.

In this study, we highlight the importance of methodological creativity when researching existential phenomena in caring science. Our intention is to provide epistemological and methodological support that would encourage researchers to be creative when collecting data. One fruitful way to approach creativity involves basing one’s research on the epistemological and methodological ideas of lifeworld research. We will illustrate the usefulness of lifeworld research via examples from empirical caring science research and show how creativity may contribute to a profound understanding of patients’ experiences. Hopefully, this article will help other researchers be creative without losing epistemological foundations and scientific validity.

Needle-related medical procedures (NRMPs) are something that all young children need to undergo at some point. These procedures may involve feelings of fear, pain and anxiety, which can cause problems later in life either when seeking healthcare in general or when seeking care specifically involving needles. More knowledge is needed about supporting children during these procedures.

AIM:

This study aims to explain and understand the meaning of the research phenomenon: support during NRMPs. The lived experiences of the phenomenon are interpreted from the perspective of younger children.

METHOD:

The analysis uses a lifeworld hermeneutic approach based on participant observations and interviews with children between 3 and 7years of age who have experienced NRMPs.

RESULTS:

The research phenomenon, support for younger children during NRMPs, is understood through the following themes: being the centre of attention, getting help with distractions, being pampered, becoming involved, entrusting oneself to the safety of adults and being rewarded. A comprehensive understanding is presented wherein younger children experience support from adults during NRMPs in order to establish resources and/or strengthen existing resources.

CONCLUSIONS:

The manner in which the child will be guided through the procedure is developed based on the child's reactions. This approach demonstrates that children are actively participating during NRMPs. Supporting younger children during NRMPs consists of guiding them through a shared situation that is mutually beneficial to the child, the parent and the nurse. Play during NRMP is an important tool that enables the support to be perceived as positive.

Children state that among their worst fears during hospitalization are those related to various nursing procedures and to injections and needles. Nurses thus have a responsibility to help children cope with needle-related medical procedures (NRMP) and the potentially negative effects of these. The aim of the study is to describe the lived experience of supporting children during NRMP, from the perspective of nurses. Fourteen nurses took part in the study, six of whom participated on two occasions thus resulting in 20 interviews. A reflective lifeworld research approach was used, and phenomenological analysis was applied. The result shows that supporting children during NRMP is characterized by a desire to meet the child in his/her own world and by an effort to reach the child’s horizon of understanding regarding these actions, based on the given conditions. The essential meaning of the phenomenon is founded on the following constituents: developing relationships through conversation, being sensitive to embodied responses, balancing between tact and use of restraint, being the child’s advocate, adjusting time, and maintaining belief. The discussion focuses on how nurses can support children through various types of conversation and by receiving help from the parents’ ability to be supportive, and on whether restraint can be supportive or not for children during NRMP. Our conclusion is that nurses have to see each individual child, meet him/her in their own world, and decide on supportive actions while at the same time balancing their responsibility for the completion of the NRMP. This work can be described as ‘‘balancing on a tightrope’’ in an unpredictable situation.

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.

Purpose:

For many children, needle procedures are fearful events that are often painful. The first step in symptom management is to assess the child's pain and fear, and the next step is to use coping strategies to provide symptom relief for children who experience or feel pain and fear during procedures. The Children's Action–Reaction Assessment Tool (CARAT) is built on action–reaction strategies. This study aimed to determine the inter-rater reliability of the CARAT when used during needle procedures with 3- to 7-year-old children.

Design and Methods:

We used a quantitative approach in which 21 children were observed by two independent observers during needle procedures to evaluate the inter-rater reliability of the CARAT. Data were analysed with descriptive statistics, and the observation scores were calculated with an intraclass correlation coefficient (ICC) test on SPSS for Windows, version 25.

Results:

The completed CARAT indicated the use of action–reaction strategies. Neither action nor reaction strategies were frequently used. The parents were seldom involved in the procedure. The inter-rater reliability showed a sufficient correlation between the observers.

Practice Implications:

This study showed promising results for the inter-rater reliability of the CARAT, which can be used to facilitate care for children. The observational tool can be used to assess the use of action–reaction strategies in conjunction with needle procedures in children aged 3–7 years. 

Children state that among their worst fears during hospitalization are those related to various nursing procedures and to injections and needles. Nurses thus have a responsibility to help children cope with needle-related medical procedures (NRMP) and the potentially negative effects of these. The aim of the study is to describe the lived experience of supporting children during NRMP, from the perspective of nurses. Fourteen nurses took part in the study, six of whom participated on two occasions thus resulting in 20 interviews. A reflective lifeworld research approach was used, and phenomenological analysis was applied. The result shows that supporting children during NRMP is characterized by a desire to meet the child in his/her own world and by an effort to reach the child's horizon of understanding regarding these actions, based on the given conditions. The essential meaning of the phenomenon is founded on the following constituents: developing relationships through conversation, being sensitive to embodied responses, balancing between tact and use of restraint, being the child's advocate, adjusting time, and maintaining belief. The discussion focuses on how nurses can support children through various types of conversation and by receiving help from the parents' ability to be supportive, and on whether restraint can be supportive or not for children during NRMP. Our conclusion is that nurses have to see each individual child, meet him/her in their own world, and decide on supportive actions while at the same time balancing their responsibility for the completion of the NRMP. This work can be described as "balancing on a tightrope" in an unpredictable situation.

Background Needle-related medical procedures (NRMPs) are often frightening and cause children anxiety and pain. Only a few studies have examined the perspectives of younger children. More knowledge is needed about younger children's experiences in caring situations such as NRMPs. Aim The aim of this study was to explain and understand the consequences related to NRMPs from younger children's perspectives. Methods Participant observations and interviews with younger children who had experienced NRMPs were analysed using a lifeworld hermeneutic approach. Results Experiencing fear is central for younger children during an NRMP and interpretation of its consequences formed the basis for the following themes: seeking security, realizing the adult's power, struggling for control, feeling ashamed, and surrendering. A comprehensive understanding is presented wherein younger children's experiences of NRMPs vary across time and space related to weakening and strengthening their feelings of fear. Conclusions Awareness is needed that adults' power becomes more obvious for children during an NRMP. Children's surrender does not necessarily imply acceptance of the procedure. Providing children with opportunities to control elements of the procedure creates a foundation for active participation, and vice versa.

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. 

Anxiety has been identified as one of the most severe and long-lasting symptoms experienced by hospitalized children with cancer. Self-reports are especially important for documenting emotional and abstract concepts, such as anxiety. Children may not always be able to communicate their symptoms due to language difficulties, a lack of developmental language skills, or the severity of their illness. Instruments with sufficient psychometric quality and pictorial support may address this communication challenge. The purpose of this review was to systematically search the published literature and identify validated and reliable self-report instruments available for children aged 5–18 years to use in the assessment of their anxiety to ensure they receive appropriate anxietyrelief intervention in hospital. What validated self-report instruments can children with cancer use to self-report anxiety in the hospital setting? Which of these instruments offer pictorial support? Eight instruments were identified, but most of the instruments lacked pictorial support. The Visual Analogue Scale (VAS) and Pediatric Quality of Life (PedsQL™) 3.0 Brain Tumor Module and Cancer Module proved to be useful in hospitalized children with cancer, as they provide pictorial support. It is recommended that faces or symbols be used along with the VAS, as pictures are easily understood by younger children. Future studies could include the adaptation of existing instruments in digital e-health tools. © 2021 by the authors. Licensee MDPI, Basel, Switzerland.

Introduction This study protocol outlines the evaluation of the pictorial support in person-centred care for children (PicPecc). PicPecc is a digital tool used by children aged 5-17 years to self-report symptoms of acute lymphoblastic leukaemia, who undergo high-dose methotrexate treatments. The design of the digital platform follows the principles of universal design using pictorial support to provide accessibility for all children regardless of communication or language challenges and thus facilitating international comparison.

Methods and analysis Both effect and process evaluations will be conducted. A crossover design will be used to measure the effect/outcome, and a mixed-methods design will be used to measure the process/implementation. The primary outcome in the effect evaluation will be self-reported distress. Secondary outcomes will be stress levels monitored via neuropeptides, neurosteroids and peripheral steroids indicated in plasma blood samples; frequency of in-app estimation of high levels of distress by the children; children's use of analgesic medicine and person centeredness evaluated via the questionnaire Visual CARE Measure. For the process evaluation, qualitative interviews will be carried out with children with cancer, their legal guardians and case-related healthcare professionals. These interviews will address experiences with PicPecc in terms of feasibility and frequency of use from the child's perspective and value to the caseworker. Interview transcripts will be analysed using an interpretive description methodology.

Ethics and dissemination Ethical approval was obtained from the Swedish Ethical Review Authority (reference 2019-02392; 2020-02601; 2020-06226). Children, legal guardians, healthcare professionals, policymaking and research stakeholders will be involved in all stages of the research process according to Medical Research Council's guidelines. Research findings will be presented at international cancer and paediatric conferences and published in scientific journals.

Trial registration ClinicalTrials.gov; NCT04433650. 

Purpose: This study describes the lived experiences of nurse-led consultations in pediatric emergency departments from the perspective of pediatric nurses.

Design and methods: A descriptive qualitative study with a reflective lifeworld research approach was used to explore nurses' experiences of nurse-led consultations. The study was conducted through meaning-oriented individual interviews with ten pediatric nurses.

Results: The results are grouped into four themes: (a) embracing the encounter and being touched by it; (b) having time to be present and committed; (c) having the ability and trusting in one's intuition; and (d) negotiating between families' wishes and the organization's guidelines.

Conclusions: Our study shows that nurse-led consultations conducted in separate nurse-led reception areas promote a positive experience of the consultations from the perspective of pediatric nurses. In a nurse-led consultation, a nurse's confidence in their ability to provide care is connected to time, broad skills and knowledge, and a supportive organization.

Practice implications: As the rising global population increases the demand for healthcare services, pediatric emergency departments must streamline their services to provide patient-safe, high-quality health care. Nurse-led consultations are an effective means of meeting these growing demands. This study contributes to an understanding of pediatric nurses' experiences at both the individual level and a more structured level, namely that families' wishes and an organization's guidelines do not always coincide. 

With a common ground in the epistemology of lifeworld phenomenological and hermeneutical approaches, we explored the possibility of understanding existential phenomena in different stages of human life, such as children’s illness and experience of medical procedures, childbirth and breastfeeding and old age. Through various forms of lifeworld theory-based data collection methods, examples of how lifeworld stories can emerge are presented. There is humbleness and an understanding that there may be more to be understood than what may be directly apparent in the story of a patient. This gives rise to the fact that analyses may sometimes need to be further developed with the aid of philosophical examination and interpretation, which open up opportunities to understand what is unspoken and hidden in stories. Such examination and interpretation also make it possible to deepen what is said. The philosophy of existence can help researchers get hold of what does not appear immediately and what is hinted at but not stated directly, and uncover hidden meanings in stories. Such in-depth understanding may have significance for developing caring practice by potentially bridging the dualistic view of human beings as body and soul. Through a lifeworld theory-based research approach, caring that takes into account existential dimensions in people's lives in relation to caring can be developed and stimulated.

This article is devoted to reflections on how to prevent pre-understanding from influencing the research process and jeopardizing the validity of a study. Influences from preunderstanding exemplified from empirical lifeworld-led caring science research. Finally, there is a discussion of preunderstanding as a natural attitude and therefore also an important part of the lifeworld. It is concluded that validity requires a self-critical approach. It is suggested that a descriptive analysis, where the findings are fairly close to the data, involves a less problematic approach than research, which requires special attention to pre-understanding in connection with different levels of interpretation.

Background and aim

The aim of the present article was to elaborate on a research approach and method called ‘lifeworld hermeneutics’. Significant to lifeworld hermeneutics is that interpretation is the main methodological instrument for explaining and understanding existential research questions and lived experiences. From a caring science perspective, this often refers to research that aims to gain a deeper understanding of existential phenomena and issues, such as existential meaning of health, well-being, homelessness, lostness, suffering and ageing, as well as what it means to experience unhealthiness and illness, the need for care, and caring that responds to such needs.

Design

Theoretical paper.

Result

The article briefly covers ontology and epistemology that clarifies the meaning and importance of a lifeworld hermeneutic attitude. This is followed by suggestions for how to perform a lifeworld hermeneutic study, expressed in relation to methodological principles for the interpretation, validation and structuring of interpretations. Thereafter, follow reflections on how to use theoretical or philosophical support to develop and deepen existential interpretations. The findings of lifeworld hermeneutic research consist of existential interpretations where the researcher, with an open and pliable attitude towards the phenomenon and the aim of the study, clarifies, explains and suggests new ways of understanding participants’ lived experiences; the researcher should maintain such an attitude towards their understanding of the phenomenon as well.

Conclusion

The lifeworld hermeneutical approach and method described in this article makes it possible to further deepen the understanding and knowledge about existential issues that is relevant for caring and caring science. 

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.

Background: Children with long-term illness frequently experience symptoms that affect their daily life, and this is underreported in healthcare. Despite the large number of mHealth tools, few are based on a theoretical framework or supported by scientific knowledge. Incorporating universal design when developing a product ensures that all may benefit from the design and that person-centred communication is facilitated.

Objective: Our study aimed to develop a person-centred communication support mHealth tool (i.e. Pictorial support in personcentred care for children: PicPecc) based on universal design principles for children with long-term illness to communicate their symptoms, using the co-design process by involving various stakeholder groups (children with long-term illness, parents, healthcare professionals, developers).

Methods: The co-design development process included four phases: (i) interviews with seven children, 8 parents and 19 healthcare professionals to determine needs and wishes for support, (ii) workshop with 19 researchers, (iii) workshop with developers and (iv) interviews with 10 children, 9 parents and 21 healthcare professionals to evaluate the mock-up (prototype) of the developed mHealth tool. Data were synthesised using interpretive description. 

Results: There is a need for children with long-term illness to address symptoms such as fear, fatigue, nausea, pain, and anxiety. Fatigue and anxiety may be overlooked by healthcare professionals and therefore an easy-to-use tool to facilitate communication with the children is needed. Three common aspects were constructed: different perspectives on provided and perceived support, need for an easy tool to assess symptoms and to facilitate communication, as well as mapping the journey to facilitate recall. Parent and children stakeholders expressed a need for support when dealing with psychosocial issues, while parents were simultaneously concerned that children may regard the word anxiety as too alarming. However, the children themselves did not react to the word. Researchers repeated the importance of employing easy-to-use mHealth tools for children to communicate symptoms going beyond pain, e.g. anxiety and fatigue. The developers highlighted the practical and logistical implications of suggestions offered by other stakeholders and proposed best options for the development of the tool. 

Conclusions: The co-designed developed PicPecc tool demonstrated the capacity to provide support when dealing with multiple symptoms and conditions. PicPecc opens a dialogue between the child and the healthcare professionals, and it addresses symptoms that may otherwise be overlooked. Future research includes usability testing and evaluation in hospitals, as well as in a home care setting.