Background

Information exchange is fundamental in the paediatric care encounter. Health care professionals need further background knowledge to encounter the parents/guardians from their perspective in their minors’ paediatric care. The parents’/guardians’ ability to manage the situation is dependent on their receiving optimal information, which is why it is important to study how information is exchanged.

Aim

The aim of this study was to identify, describe and conceptualize how parents/guardians resolved their main concern in information exchange with health care professionals in paediatric care situations involving their minors.

Methodology

Glaser’s grounded theory method was used and all data were analysed using constant comparative analysis. The observational study took place at three paediatric outpatient units at a university hospital and 24 parents/guardians participated. Data sources were field notes from 37 observations of paediatric care situations and five adherent excerpts from the minors’ medical records. Grounded theory is a method of conceptualising behaviour, which is why an observational study of parents’/guardians’ information exchange and social interaction in the context of nursing care is relevant as research design.

Results

Firm handling was revealed as the way the parents/guardians resolved their main concerns when they were exchanging information about their minors’ paediatric care. Firm handling is built on five inter-related categories: representative advocating, collaborating, aim sharing, supportive resourcing and minor bypassing.

Conclusions

This knowledge suggests possible ways for health care professionals to design paediatric care that supports, facilitates, strengthens and improves the parents’/guardians’ firm handling. The key issue is to find ways to support parents/guardians and minors so they can participate in health care encounters according to their preferences. Firm handling gives an opportunity to both reinforce parenthood in paediatric care and invite minors to participate.

Informationsutbyte är en väsentlig del i mötet i pediatrisk vård, precis som i all sjukvård. Fastän barnen måste ses som huvudpersoner i pediatrisk vård, så har det mest forskats i hur de vuxna utbyter information. Och när det har handlat om barnet, så har det utgått från den vuxnas syn på barnet. Därför blev det två övergripande syften i denna avhandling. För det första så var syftet att identifiera, beskriva och begreppsliggöra informationsutbytet i pediatriska vårdsituationer mellan minderåriga, föräldrar/vårdnadshavare och hälso- och sjukvårdspersonal. För det andra, målet med forskningen var att formulera en teoretisk konstruktion, en teori, av fenomenet informationsutbyte i pediatriska vårdsituationer.Avhandling bygger på fyra studier. I studie I, II och III används metoden grundad teori enligt Glaser och data har analyserats enligt metoden konstant jämförande analys. Data har samlats in genom observationer och utdrag från journaler och även genom uppföljande intervjuer. I den sista studien gjordes först en kvalitativ innehållsanalys av Løgstrups etiska krav. De etiska kravet handlar om att den ena människan är inblandad i den andra människans liv. Kravet går ut på att bära omsorg om den andres liv som just denna inblandning ger. Därefter gjordes en samtidig begreppsanalys av fynden från de tre studierna och fynden från den kvalitativa innehållsanalysen. Totala antalet deltagare i de tre observationsstudierna var 67 personer: 28 barn, 24 föräldrar/vårdnadshavare och 15 vårdpersonal, vilka utbytte information i olika pediatriska vårdsituationer. Toatalt gjordes 138 observationer.Interaktionen i informationsutbytet hanterades av barnen som ”balanserade omständigheterna”, föräldrarnas/vårdnadshavarnas ”handfasta hanterande” och vårdpersonalen som ”delade och fördelade ansvaret”. Den kvalitativa innehållsanalysen av Løgstrups etiska krav gav fynden förmedlingen och de sociala normerna. Den samtidigabegreppsanalysen gav slutligen resultatet att gradvis nå samförstånd, vilket innebär att komma överens med varandra, steg för steg, genom en serie av kompromisser. Samtidigt som vi gradvis når samförstånd i pediatrisk vård, så beskyddar vi minderårigas integritet, vi uppmärksammar föräldrarnas/vårdnadshavarnas beroendeställning till oss och genomvårdpersonalens sociala samspel, så kommer informationsutbytet att förbättras. Denna avhandling understryker betydelsen av vårdpersonalens förmåga att kommunicera och behovet av utbildning och träning inom området, för att förbättra informationsutbytet med minderåriga och deras föräldrars/vårdnadshavares från ett etiskt perspektiv. Teorin, att gradvis nå samförstånd, förklarar hur detta kan användas och genomföras.

Information exchange is an essential component for all involved in the paediatric care encounter. Despite this, most of the research about information exchange concerns adults and the significance of the child’s existence in the encounter have not been given sufficient attention. Therefore, the overall aims of this thesis were twofold. Firstly, the aim was to identify, describe and generate concepts in information exchange between minors, parents/guardians and health care professionals in paediatric care situations. Secondly, the intention was to formulate a theoretical construction, a theory, of the phenomenon of information exchange in paediatric care situations.

This thesis is based on four studies. In studies I, II and III grounded theory was used according to Glaser and data have been analyzed using the constant comparative analysis method. Data have been collected through observations and medical records (I, II and III) and also with additional follow-up interviews (III). In study IV, at first a qualitative content analysis of Løgstrup’s ethical demand was conducted and, second, a simultaneous concept analysis of the findings from studies I, II and III and the findings from the qualitative content analysis was carried out. There were a total of 67 participants in the three observational studies: 28 minors (I), 24 parents/guardians (II) and 15 health care professionals (III), who exchanged information in different paediatric care encounters.

The information exchange interaction process was resolved by the minors “balancing the circumstances” (I), the parents/guardians used “firm handling” (II) and the health care professionals were “sharing and contributing the responsibility” (III). The qualitative content analysis of Løgstrup’s ethical demand provided the mediation and the social norms. The simultaneous concept analysis finally gave the advanced outcome to intergrade, which means to merge gradually with another through a continuous series of intermediates. At the same time as we intergrade in paediatric care, we protect the totality of minors, recognize the dependency of the parents/guardians and the social interplay by the health care professionals, the information exchange is improved. This thesis emphasizes the importance of health care professionals’ communication skills and the need for education and practice in this topic, in order to improve the information exchange with minors and their parents/guardians from an ethical viewpoint. The theory intergrade explains how this could be applied and implemented.

This study aimed to identify, describe and generate concepts regarding health care professionals’ information exchanges with minors and/or their parents/guardians in paediatric caring situations. The study took place at three paediatric outpatient units at a university hospital and there were 15 health care professionals involved. Using the grounded theory and the constant comparative analysis methods, the data collection and analysis was undertaken simultaneously, using participant observation, review of medical records and follow-up interviews. The main concern of the health care professionals that emerged as the core category was: sharing and contributing responsibility, interrelated with the six categories; interchanging of knowledge, relationship-creating chat, calculated confirming, encouraging, dichotomous talking and of situation related effects. This research has explored the elements of information exchange in caring situations and highlighted the interaction between the involved persons. These findings could be valuable to health care professionals in order to develop and improve their caring skills.

In this column the authors discuss the ethics of information exchange in nursing practice with children. Five concepts identified in three Swedish grounded theory studies and a content analysis that used the theoretical framework of ethical demand were analyzed. A simultaneous concept analysis found five related concepts: being interconnected, acting according to accepted procedure, completeness, interdependence, and social intercourse. These concepts are synthesized in the concept of intergrade, which emphasizes the value of maintaining the integrity of all involved in information exchange.

Aims and objectives: The purpose of this literature review was to search for and review, systematically, childrens decision-making competence in health care in the scientific literature. Findings of both quantitative and qualitative studies were analysed thematically.

Background: Most previous research in childrens decision-making competence in health care concerns adults care in the best interests of the child. It is important to consider decision-making competence from the childs perspective because of childrens own human rights.

Methods: Systematic review including database search, manual selection, supplementary searching, management and acquisition of relevant literature, quality appraisal, literature review saturation and thematic review.

Results: Six themes emerged: measurable issues, values and beliefs, power, parent-related communication, trust and self-determination. Measurable issues were age, reading ability and memory. Values and beliefs as well as power and parent-related communication were associated with healthcare professionals. Children showed trust and expressed a wish to use self-determination.

Conclusions: Age appropriate information and participation were prerequisites for allowing children to have possibilities of making competent decisions about their own care. Childrens decision-making competence is dependent on others, such as parents and healthcare professionals, attitudes and not only on their own capacity. Lack of competence, however, does not exclude children from the human right to have a say. It should be noted that it is a decision to leave the determination to a parent or healthcare professional.

Relevance to clinical practice: Future research from the viewpoint of children is important to reach optimal levels of participation, through respecting their integrity and to develop them into potential competent decision makers.

This presentation is a self experienced encounter with a boy, Linuz, 18 months old, which is no longer with us. He was so young that his language was not fully developed, and he could not express himself totally verbally. These circumstances challenge the power and responsibility of health care professionals, to encounter a small person while respecting the integrity and developing autonomy.

The aim of the study is to make ethical refl ections, in a paediatric nursing care situation, with a severe ill small child.

Method used is a case study, an empirical investigation of an incident in real-life context, here a little boy being treated at a paediatric ward in a county hospital.

Linuz was diagnosed with a malignant tumor in his stomach. He was very upset of what the health care professionals had to do with him in nursing care and he protested loudly and clearly; he was not motivated at all to cooperate. In our fi rst meeting Linuz needed intravenous medication in his central venous catheter and I shared this information with him, while he was sitting in his parent’s knee. “Come here Linuz, and lay down on your bed and I will give you your medication in the catheter so you are going to be big, strong and healthy”. He looked at me for a moment and then he climbed up in the bed, looking me in the eyes all the time and lay down on the pillow very close to me. Then he put up his t-shirt, handed me the central venous catheter and received his medication without any complaints and in full cooperation. Afterwards he draws down his t-shirt and returned to his parents. The silence was total during this sequence. My fi rst refl ection was that; this little boy was listening to me, was thinking what to do, did make a competent decision and was acting according to that.

There is no age limit to have a standpoint of what is going to happen, even if it is not possible for the person to express it verbally. We can only imaging what Linuz was thinking, if he made a competent decision, or if he felt hope or trust or if it was all of this that he felt. But it was his human right to express his feelings.

1.Background: This paper concerns an encounter with a boy, 18 months of age, diagnosed with malignant tumor in his stomach. He could just say some words, but was able to loudly and clearly express his fear and feelings of inconvenience during nursing care procedures. These nursing care situations were a challenge for the health care professional; to encounter a very small person and simultaneously create possibilities of trustful relation.

2. Objectives / Aim: To make reflections about this specific encounter where a small child with severe illness finds trust in a paediatric nursing care situation, and how this trust was enabled by health care professionals acts.

3. Method: A case study, a philosophical and qualitative investigation of empirical data, an incident in real-life context; a little boy being treated at a general paediatric ward in a county hospital.

4. Results / Conclusion: In spite of his apprehensions; he dared to trust the health care professional. The little boy listened to the information, made a decision and cooperated during the nursing care procedure. Trust comes from the little boys need in his situation, which can and must be provided by health care professional. It is always a risk to rely on another person; expectations can be ruined. Trust can be seen as an invitation to be listened to and a wish to be listened at and to be taken seriously. There is no age limit to have a standpoint of what is going to happen in a situation, even if it is not possible for the person to express it verbally.

Objective: The purpose of study was to identify, describe and generate concepts in parents/guardians information exchange with health care professional in nursing care situations for their minors in paediatric outpatients units.

Materials & Methods: In this observational study a grounded theory methodology was used. The study started with a descriptive observation of the units in a period of two weeks. After that, the 18 female and six male parents/guardians to minors, aged 10-16 years, were observed during their visit in three separate paediatric outpatients units; the paediatric day care unit, the paediatric neuro- urology and bowel disorders unit and the paediatric diabetic clinic. Data collection was made by using field notes from the observations and also notes from patient records were data sources. Totally 37 observations were conducted, all together in about a time of 10 hours. All data was analysed according to constant comparative analysis, the basis for grounded theory.

Results: The data analysis gave the meaning of parents/guardians information exchange, generating the core category steadfast handle and containing of six categories: substitute manners, cooperation, shared aims, and resource, involvement and adult relations. Steadfast handle is manoeuvrings with the minor in exchanging information in paediatric nursing care situations, handling the situation as an adult in charge. Substitute manners are when acting instead of the minor and cooperation is acting together with the minor. Shared aims are when being active together with the minor in a focused way and resource is when supporting the minor in the situation. Involvement is when being concerned and curios about the minor in the situation. Adult relations are separated from the minor and are about the present adults’ particular communication. The categories relieved one another in priority and intensity and was to be seen all or just some of them in every single observation.

Conclusion: This knowledge have relevance to health care professional to design paediatric nursing care situations and support and facilitate the parents/guardians handling in their minors nursing care.