The ethos brief index-validation of a brief questionnaire to evaluate wellness based on a holistic perspective in patients with restless legs syndrome.

PURPOSE: The aim of this study was to validate the Ethos Brief Index (EBI) in patients with Restless Legs Syndrome (RLS). METHODS: A cross-sectional design, including 788 subjects with RLS (65% women, 70.8 years, SD 11.3) from the Swedish RLS Association, was used. A postal survey was sent out to collect data regarding socio demographics, comorbidities, and RLS-related treatment data. Questionnaires included were EBI, the Restless Legs Syndrome-6 Scale (RLS-6), Restless Legs Syndrome-Quality of Life questionnaire (RLSQoL), the Insomnia Severity Index (ISI), and the Epworth Sleepiness Scale (ESS). The validity and reliability of the EBI were investigated using Rasch and confirmatory factor analysis (CFA) models. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age and gender groups, as well as insomnia, daytime sleepiness, RLS-related QoL and RLS severity were assessed. RESULTS: The results supported the unidimensionality of the EBI in the CFA (i.e., explaining 61.5% of the variance) and the Rasch model. The reliability of the EBI was confirmed using composite reliability and Cronbach's alpha. No DIF was identified for gender, age, insomnia, daytime sleepiness, RLS severity or RLS-related QoL. CONCLUSION: The EBI showed good validity and reliability and operated equivalently for male and female patients with RLS. Accordingly, healthcare professionals can use the EBI as a psychometrically sound tool to explore and identify patient-centered problems related to the whole life situation.

Content validity of the electronic faces thermometer scale for pain in children: is a picture worth more than a thousand words?

Introduction: Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0-10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children. Methods: A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8-17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations. Results: A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0-1) and pain (level 2-10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2-10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments. Discussion: The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.

Development of caring behaviour in undergraduate nursing students participating in a caring behaviour course.

BACKGROUND: In today's complex healthcare organisations there is an increasing recognition of the need to enhance care quality and patient safety. Nurses' competence in demonstrating caring behaviour during patient encounters affects how patients experience and participate in their care. Nurse educators are faced with the challenge of balancing the demand for increasingly complex knowledge and skills with facilitating students' abilities essential to becoming compassionate and caring nurses. AIM: The aim was to describe undergraduate nursing students' development of caring behaviour while participating in a caring behaviour course. METHOD: This pilot study used a quantitative observational design. At a university in Sweden, video-recorded observational data from twenty-five students were collected in the first and last weeks of a full-time five-week Caring Behaviour Course (the CBC). In total, 56-min video-recorded simulation interactions between a student and a standardised patient were coded by a credentialed coder using a timed-event sequential continuous coding method based on the Caring Behaviour Coding Scheme (the CBCS). The CBCS maps the five conceptual domains described in Swanson's Theory of Caring with related sub-domains that align with Swanson's qualities of the Compassionate Healer and the Competent Practitioner. The CBCS contains seventeen verbal and eight non-verbal behavioural codes, categorised as caring or non-caring. RESULTS: Between the two simulations, most verbal caring behaviours increased, and most non-verbal caring behaviours decreased. Statistically significant differences between the simulations occurred in the sub-domains Avoiding assumptions and Performing competently/skilfully in the quality of the Competent Practitioner. Most observed caring behaviours aligned with the Compassionate Healer. CONCLUSION: Generally, the students' development of caring behaviours increased while participating in the CBC. Using a structured observational behavioural coding scheme can assist educators in assessing caring behaviour both in education and in practice, supporting caring as the universal foundation of nursing and a key to patient safety.

Validation of two brief instruments (the SURE and CollaboRATE) to measure shared decision-making in patients with restless legs syndrome.

Restless legs syndrome (RLS) is a common neurological disorder characterised by an urge to move arms and legs, usually associated with discomfort, pain, motor restlessness, and sleep disturbance. An individually adapted treatment is needed but difficult to optimise, which makes shared decision-making (SDM) important. However, brief validated instruments on how patients with RLS perceive their involvement in treatment decisions are lacking. Therefore, the aim was to validate two instruments, SURE (Sure of myself, Understand information, Risk-benefit ratio, Encouragement, i.e., to assess decisional conflict) and CollaboRATE (brief patient survey focused on SDM, i.e., to assess SDM), in patients with RLS. A cross-sectional design, including 788 participants with RLS (65% females, mean [SD] age 70.8 [11.4] years) from a national patient organisation for RLS, was used. A postal survey was sent out to collect data regarding weight, height, comorbidities, demographics, and RLS-related treatment data. The following instruments were included: the SURE, CollaboRATE, Restless Legs Syndrome-6 Scale, and eHealth Literacy Scale. Confirmatory factor analysis and Rasch models were used to assess the validity and reliability of the SURE and CollaboRATE. Measurement invariance, unidimensionality, and differential item functioning (DIF) across age, gender, and medication groups were assessed. The SURE and CollaboRATE were both identified as unidimensional instruments with satisfactory internal consistency. No DIF across age and gender was identified, while significant DIF was observed for both the SURE and CollaboRATE regarding medication use categories. However, both the SURE and CollaboRATE are potential instruments to be used in research, but also as reflection tools by healthcare professionals, patients, and students to explore and assess SDM, and support its development in clinical care.

Everyday life during the childhood cancer trajectory-childhood cancer survivors' descriptions of the role of caring support.

Background: Being diagnosed with cancer in childhood often has a direct impact on the child's opportunities to participate in activities and the child's sense of belonging in different life situations. Experiences of illness in youth affect the lives of these individuals in numerous ways and they need pronounced support to regain their normal life after treatment. Purpose: To illustrate how childhood cancer survivors describe the role of the caring support provided by healthcare professionals at diagnosis and during the cancer trajectory. Methods: A mixed methods approach was applied. Swanson's Theory of Caring was used to deductively analyze the answers in a study-specific questionnaire with Likert scales (1-5). Descriptive and comparative statistics and exploratory factor analyses were performed. Results: Sixty-two former patients, diagnosed with solid tumors/lymphoma in 1983 to 2003 in Sweden, participated. The mean time passed since treatment was 15.7 years. Swanson's caring processes Being with and Doing for were the most prominent loading categorical factor indicators. Higher scores for healthcare professionals being emotionally present (Being with), doing for others what they would do for themselves (Doing for) and being willing to understand the sick child's situation (Knowing) were highlighted by survivors older than 30 years, compared to those younger than 30 years (p = 0.041, p = 0.045, and p = 0.013, respectively). An increased vulnerability regarding their ability to cope with difficulties (Maintain belief) was found among participants who were treated during adolescence, related to schoolchildren (p = 0.048), and among those who had been treated with extra-cranial irradiation in comparison with no extra-cranial irradiation (p = 0.004). The role of having a partner in comparison with being single was underlined among those who felt they had acquired the tools they needed to take care of themselves (Enabling) (p = 0.013). The total explained variance was 63%. Conclusions: A person-centered care approach during treatment for childhood cancer, reflected by a caring model, highlights the role of healthcare professionals being emotionally present, involving children, performing actions, and with an approach that has potential long-term implications. Childhood cancer patients and survivors need not only clinically competent professionals, but professionals who provide caring interactions with compassion.

Effects of Person-Centered Information for Parents of Children With Cancer (the PIFBO Study): A Randomized Controlled Trial.

Background: Conveying information to parents is a core part of pediatric oncology nursing; however, most published interventions do not tailor information to individual parental needs. Objective: To evaluate the effect on parental illness-related stress of person-centered information provided to parents of children with cancer. Methods: A multicenter, unblinded randomized controlled trial with two parallel arms recruiting parents of children diagnosed within the past two months from two tertiary children's cancer centers in Sweden. Parents were randomized using sealed envelopes prepared and opened by an independent person. Parents in the intervention arm met four times with experienced nurses trained in the intervention, whereas controls received standard care. The effect of the intervention was measured five times regarding parents' illness-related stress. Secondary outcomes were psychosocial states, experiences with healthcare providers, and received information. Further, we collected process data on the intervention's content and fidelity. Results: Of the 32 parents included and analyzed in the study, 16 were randomized to the intervention, which addressed a broad variety of topics. The intervention increased parents' knowledge about the biophysiological and functional aspects of their child's illness, but it had no measurable effect on their distress. Discussion: Although fidelity to the intervention protocol was sufficient, the study was flawed by recruitment difficulties, primarily due to organizational factors, which may have prevented us from observing any possible effects on psychosocial distress. Having a person-centered perspective could be promising for future studies aimed at parents of children with cancer. (Registered at Clinicaltrials.gov, number NCT02332226.).

What Was on the Parents' Minds? Changes Over Time in Topics of Person-Centred Information for Mothers and Fathers of Children with Cancer.

Acquiring information about one's child's cancer diagnosis is a complex and ever-changing process, and parents' needs change over time. As yet, we know little about what information parents require at different stages of their child's illness. This paper is part of a larger randomized control trial studying the parent-centered information given to mothers and fathers. The aim of this paper was to describe the topics addressed in person-centered meetings between nurses and parents of children with cancer and how those changed over time. Using qualitative content analysis, we analyzed nurses' written summaries of 56 meetings with 16 parents and then computed for each topic the percentage of parents who brought it up at any time during the intervention. The main categories were Child's disease and treatment (addressed by 100% of parents), Consequences of treatment (88%), Emotional management for the child (75%), Emotional management for the parent (100%), Social life of the child (63%), and Social life of the parent (100%). Different topics were addressed at different points in time, and fathers raised more concerns about the child's emotional management and the consequences of treatment than mothers. This paper suggests that parental information demands change over time and differ between fathers and mothers, implying that information should be person-centered. Registered at Clinicaltrials.gov (NCT02332226).

Discussing racism in healthcare: A qualitative study of reflections by graduate nursing students.

AIM: The aim is to illustrate and analyse reflections from graduate nursing students over their experience of discussing racism in healthcare in an educational intervention. DESIGN: A qualitative, descriptive design was adopted. METHODS: Data were collected through written reflections and analysed through content analysis. In total, 81 students participated in the intervention; 39 paediatric and 42 public health care nursing students. Of those, 27 participants gave consent to have their written reflections included in the study. RESULTS: Three main categories were developed in the content analysis of student reflections: (a) the implicit embeddedness of racism in healthcare organization; (b) the effect of racism on interactions with patients; and (c) a growing awareness of one's own understanding of racism. This study indicates that student nurses discussed racism as relevant to understanding good clinical practice for the benefit of patients and work-based wellbeing of staff. This recognition of the organizational nature of racism warrants nursing leaders and managers to include racism as a social determinant of health in the undergraduate and graduate curricula to educate the next generation of nursing about racism.

Pediatric Nurses' Person-Centered Approach to Nausea Management in Children With Cancer.

Background: Nausea is a problematic side effect of childhood cancer treatment. However, it is not clear what interventions and assessments pediatric oncology nurses make when caring for a child with nausea. A person-centered approach can illuminate nausea management in pediatric care. The aim was to investigate how pediatric nurses retrieve the patient's narrative, establish partnership, and document nausea in hospitalized children with cancer. Methods: Individual interviews with nurses were conducted and analyzed using deductive content analysis with the framework of person-centered care. Results: The pediatric nurses described retrieving the patient's narrative regarding their nausea by listening to and observing the child. The pediatric nurses tried to establish a partnership with the child by allowing previous knowledge and the child's own preferences guide the interventions that focus on decreasing the child's nausea. The pediatric nurses also documented the effect of the given interventions and described the child's nausea using subjective words. When planning for the child's care it was rare for the nurses to have a documented care plan, but they did review documentation of previously administered interventions to plan for future care. Discussion: The results highlight the pediatric nurses' willingness to listen to the child, but also emphasize the need to further include the child and the parents in the partnership and documentation of nausea management. Collaboration with the child and the parents contributes to higher quality care and a partnership with trust.

Undergraduate nursing students' experiences of practicing caring behaviours with standardised patients.

RATIONALE: Undergraduate nursing students' learning opportunities to practice caring behaviours to assure compassionate and competent nursing practice with standardised patients are few. Earlier studies primarily focused on practicing communication skills in relation to mental health or developing psychomotor skills while caring for a patient with a specific diagnosis. AIM: The study aim was to describe undergraduate nursing students' experiences of practicing caring behaviours with a standardised patient. METHOD: A sample of forty-eight undergraduate nursing students in semester four at a school of nursing in southern Sweden, enrolled in a full-time, 5-week, on-campus elective caring behaviour course, were at the first and last week individually video-recorded during two caring behaviour simulations encountering a standardised patient. After observing each of their video-recordings, students completed written reflections focusing on their own compassionate and competent verbal and nonverbal caring behaviour. In total, 96 individual written reflections were analysed using qualitative content analysis to describe the experience. RESULTS: One main theme emerged: The challenge of being mindfully present in patient encounters. Four themes further described the experience: A challenging but realistic learning experience, learning the impact of nonverbal behaviour, recognising the complexity of verbal behaviour, and learning to be with the patient instead of only doing for the patient. CONCLUSION: When caring is intertwined with visible and realistic nursing practice in simulations using standardised patients it facilitates undergraduate nursing students learning compassionate and competent caring behaviour. The learning experience opened the students' eyes to the impact of practicing caring, recognising that being with is not the same as doing for the patient, and thus, how challenging it is to be mindfully present in patient encounters. Designing caring behaviour simulations with standardised patients is a feasible and efficacious educational learning didactic to facilitate students' learning caring behaviour and enhancing patients' experiences.

End-of-life palliative home care for children with cancer: A qualitative study on parents' experiences.

BACKGROUND: There is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life. METHODS: The study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings. RESULTS: Three main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory. CONCLUSION: End-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.

Conversations About Sexual and Reproductive Health and Rights-From a School Nurse Perspective.

Students have the right to receive education about sexual and reproductive health and rights (SRHR). The United Nations Agenda 2030 for sustainable development includes goals regarding SRHR, including the right to universal access to sexual and reproductive health care services and gender equality. The study used a qualitative design with an inductive approach. Data were collected through semistructured interviews. The results are presented in three categories and nine subcategories. The categories were "having an open attitude," "organizational prerequisites," and "challenging tasks." An open attitude was required to create confidence for both school nurses and students in SRHR conversations. Organizational prerequisites, such as planning SRHR education with others, were successful. Multicultural meetings and conversations regarding gender identity and sexual orientation were challenging tasks. Increased knowledge of SRHR and national standardized guidelines are suggested to achieve Agenda 2030 SRHR goals and to ensure equity in school health care.

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.

Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness.

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described. PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness. METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data. RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support. CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Mechanism of Disease: Recessive ADAMTSL4 Mutations and Craniosynostosis with Ectopia Lentis.

Craniosynostosis, the premature fusion of the calvarial bones, has numerous etiologies. Among them, several involve mutations in genes related to the TGFb signaling pathway, a critical molecular mediator of human development. These TGFb pathway-associated craniosynostosis syndromes include Loeys-Dietz syndrome (LDS) and Shprintzen-Goldberg syndrome (SGS). LDS and SGS have many similarities common to fibrillinopathies, specifically Marfan syndrome (MFS), which is caused by mutations in FBN1. Historically discriminating features of MFS from LDS and SGS are (1) the presence of ectopia lentis (the subluxation/dislocation of the ocular lens) and (2) the absence of craniosynostosis. Curiously, several instances of a seemingly novel syndrome involving only craniosynostosis and ectopia lentis have recently been reported to be caused by recessive mutations in ADAMTSL4, a poorly characterized gene as of yet. Here, we report on two new cases of craniosynostosis with ectopia lentis, each harboring recessive mutations in ADAMTSL4. We also discuss a proposed mechanism for the relationship between ADAMTSL4, FBN1, and TGFb pathway-related syndromes.

Dental health care for children with Down syndrome: Parents' description of their children's needs in dental health care settings.

A visit to the dental clinic may be challenging for a child with Down syndrome due to medical and oral health problems as well as communication problems. The aim of the present study was to explore how parents of children with Down syndrome describe their child's needs in the dental health care setting. In a survey concerning parental experiences with dental health care in Sweden, free comments were analysed with content analysis and resulted in five categories: "Need for continuity of care in dental health care"; "Need for dental health care professionals to have knowledge and expertise in caring for children with Down syndrome and other disabilities"; "Need for dental health care professionals to use a caring approach with children with Down syndrome"; "Need for the child with Down syndrome to be prepared to participate in their dental health care visit" and "Need for the child with Down syndrome to be given the same rights as typically developing children". To support children with Down syndrome in an optimal way, dental health care needs to be tailored to meet the child's unique needs. In addition, dental health care professionals need knowledge of and expertise in the care of children with Down syndrome.

A moment just for me - parents' experiences of an intervention for person-centred information in paediatric oncology.

PURPOSE: Information can help parents of children with cancer by reducing uncertainty and giving them a sense of control in a chaotic situation. Although providing information to parents is a core activity of paediatric oncology nursing, few studies focus on interventions for informing parents. Thus, the aim of this study is to evaluate parents' experiences after participating in a person-centred information intervention for parents of children with cancer. METHOD: This study is part of a process evaluation of a person-centred informational intervention in paediatric oncology for patients' parents. Qualitative semi-structured interviews with 13 parents who had taken part in the intervention were analysed using qualitative content analysis. RESULTS: An opening for healing emerged as the overarching theme, consisting of three categories. Gaining a deeper understanding of the entire situation describes how parents benefitted from processing current topics and moving forward by learning. Caring reflections in a safe space describes how parents appreciated having a moment just for themselves and feeling better by venting their feelings. Meeting a competent and compassionate nurse describes how parents experienced trust and being listened to. CONCLUSION: Having individual information meetings integrated as a primary nursing responsibility, mediated by competent and compassionate nurses also responsible for the care of the child, could enhance person-centred care and individualise parental education.

Using ICF to Describe Problems With Functioning in Everyday Life for Children Who Completed Treatment for Brain Tumor: An Analysis Based on Professionals' Documentation.

Background: Children treated for brain tumors often experience persistent problems affecting their activity performance and participation in everyday life, especially in school. Linking these problems to the International Classification of Functioning, Disability and Health (ICF) classification system can be described as affecting body function, activity performance, and/or participation. Services involved in the everyday life of the child have different focus and goals when meeting the child in context, which advantage the use of ICF to overcome this impediment to follow-up and provide comprehensive support for children who have completed treatment for a brain tumor. Aim: The aim of the study was to use the ICF classification system to describe how professionals in healthcare, habilitation, and school document problems with everyday life functioning at body, activity, and participation levels for children who completed treatment for a brain tumor. Materials and Methods: A retrospective review of records from healthcare, habilitation, and school concerning nine children completed treatment for brain tumor was implemented. Identified problems in everyday life were linked to ICF codes. Descriptive statistics of ICF-linked code frequency supplemented by network visualization diagrams viewing the co-occurrence between codes within the body, activity participation, and environmental components were performed. Results: Most documented problems were found in healthcare records, whereas the documentation in habilitation and school was sparse. The frequently occurring codes, independent of record source, were linked to the body function component, and ICF-linked problems in habilitation and school were salient in the activity and participation component. To gain a holistic picture of relations between ICF codes and problems, network visualization diagrams were used to illustrate clusters of problems. Conclusion: Code prevalence likely reflects where healthcare professionals and educators focus their attention when meeting the needs of children treated for a brain tumor in context. To maximize the comprehensive view of functioning and participation of children in everyday life, the full range of difficulties regarding body impairments, activity limitations, and participation restrictions must be identified and linked to each other in patterns of co-occurrence, which the ICF facilitate. However, ICF provides no guidance on how to identify networks of problems within the body, activity, and participation. Identifying such networks is important for building comprehensive interventions for children.

Caring Behavior Coding Scheme based on Swanson's Theory of Caring - development and testing among undergraduate nursing students.

RATIONALE: To maintain patients' dignity and well-being and alleviate suffering, it is essential that healthcare providers engage in caring behaviours. Yet, every year patient boards receive an increasing number of complaints from patients and significant others regarding healthcare providers' non-caring behaviours. Defining and measuring both verbal and nonverbal caring and non-caring behaviour in healthcare delivery is vital to address such complaints. However, no studies were found that incorporated a comprehensive theory of caring to code encounters between healthcare providers and patients. AIM: The aim was to develop and test a Caring Behavior Coding Scheme based on Swanson's Theory of Caring. METHOD: An instrument development process was used for behavioural coding including observational data from thirty-eight video recordings collected in an undergraduate nursing course at a Swedish University. The observational data involved interactions between undergraduate nursing students and a standardised patient. RESULT: The Caring Behavior Coding Scheme (the CBCS), contains seventeen verbal and eight nonverbal behavioural codes, categorised as caring and non-caring in accordance with Swanson's Theory of Caring. Content and face validity were assessed. Timed-event sequential continuous coding was performed in INTERACT software. The coder achieved excellent agreement with the developed gold standard (k = 0.87) and excellent mean inter-rater reliability (k = 0.82). All domains in Swanson's Theory of Caring were observed and coded in the interaction. DISCUSSION/CONCLUSION: The CBCS is a theory-based instrument that contributes to research on healthcare providers' behavioural encounters. It uses verbal and nonverbal caring and non-caring behavioural codes to assess the alignment of both the theory and practice of caring. The CBCS can contribute to both development and measurement of interventions focused on improving healthcare providers' caring behaviour with the intended outcome of patient well-being.

Childhood Cancer Survivors: Self-Reported Quality of Life during and after the Cancer Trajectory.

OBJECTIVE: This cross-sectional study aimed to present how the unique cancer experience in childhood influences young adults' quality of life (QOL). METHODS: Qualitative and quantitative methods were used to code and analyze a study-specific questionnaire (133 items). These data are presented in accordance with a conceptual QOL/health-related QOL model. RESULTS: The participants included 34 women and 28 men (n = 62) diagnosed with solid tumors/lymphoma in the period 1983-2003, who had been treated at the same childhood cancer center in Sweden. The current mean age was 28.7 years (range: 18-45, standard deviation [SD]: 6.3, median value: 28.5), the mean age at diagnosis was 12.9 years (range: 8-17, SD: 2.3, median value: 13), and the mean time elapsed since treatment was 15.7 years (range: 4-28, SD: 2.4, median value: 15). The response rate was 65%. Higher levels of psychological maturity were reported by women versus men (P = 0.01) and by survivors diagnosed with cancer during adolescence versus school age (P = 0.04). Male participants reported lower levels of physical limitations (P = 0.03) and emotional distress when being of treatment and in contact with health care services (P = 0.04). The strongest factor influencing QOL during therapy was parental support (97%), while the strongest factors after therapy were to live a life similar to peers (82%) and to be satisfied with one's life situation (81%). During treatment, limitations influencing QOL were related to lack of school support (2%), and after treatment, to deteriorated relationships with siblings (5%). CONCLUSIONS: Life-threatening diseases at young ages have long-term psychosocial effects with ambiguous results at multiple levels. To capture these experiences, we recommend clinical studies that are based on conceptual clarifying frameworks and adopt a quantitative and qualitative research approach.