Staff's Experiences of Preparing and Caring for Children With Cancer and Their Families During the Child's Radiotherapy.

BACKGROUND: Approximately one-third of children diagnosed with cancer are treated with radiotherapy (RT). Staff experiences of preparing and distracting the children and their families during a child's RT are sparsely described. OBJECTIVE: The aim of this study was to describe staff experiences of preparing and caring for children with cancer and their families during the child's RT. INTERVENTION/METHODS: Semistructured interviews with staff were performed at 3 Swedish RT centers. The interviews were analyzed using inductive qualitative content analysis. RESULTS: The analysis revealed 5 categories summarizing the staff members' experiences. These include the following: experiences of various emotions; care for the child and the child's family; commitments before, during, and after RT; organizational issues; and experiences of the intervention and suggestions for improvement. CONCLUSIONS: The preparatory intervention facilitated the ability of staff members to conduct their work, although the intervention should be specifically tailored to each child. Meeting children and their families and providing care to both during RT were challenging. The staff strived to provide optimal care for each child and family. Interdisciplinary teamwork and organizational acceptance for the importance of preparation and distraction were essential. IMPLICATIONS FOR PRACTICE: A future challenge will be to provide opportunities for all staff involved in the treatment of children with cancer to develop their skills continuously in order to provide high-quality preparation and distraction to all children undergoing RT, regardless of the geographical location of the RT center.

Correction to: Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study.

Following publication of the original article [1], the authors reported an error in the data of their article: one girl was by mistake scored as a boy. The authors have made new analyses of the corrected data. The corrected data and the new analyses are listed in this Correction.

Children's experiences and responses towards an intervention for psychological preparation for radiotherapy.

BACKGROUND: Children can experience distress when undergoing radiotherapy as a reaction to being scared of and unfamiliar with the procedure. The aim was to evaluate children's experiences and responses towards an intervention for psychological preparation for radiotherapy. METHODS: A case control design with qualitative content analysis of semi-structured interviews and statistical analysis of anxiety ratings were used for evaluating a strategy for psychological preparation and distraction. Fifty-seven children aged 2 to 18 years and their parents participated - 30 children in the baseline group and 27 in the intervention group. Child interviews were performed and the child and their parents rated the child's anxiety. RESULTS: The intervention was most appropriate for the younger children, who enjoyed the digital story, the stuffed animal and training with their parents. There were some technical problems and the digital story was not detailed enough to fit exactly with various cancer diagnoses. Children described suggestions for improvement of the intervention. The ratings of the child's anxiety during radiation treatment showed no differences between the baseline group and the intervention group. CONCLUSIONS: The children of all the age groups experienced their interventions as positive. The strength of the intervention was that it encouraged interaction within the family and provided an opportunity for siblings and peers to take part in what the child was going through. Future research on children's experiences to interventions should be encouraged. The intervention and the technical solutions could improve by further development. TRIAL REGISTRATION: The study design was structured as an un-matched case-control study, baseline group vs. intervention group. TRIAL REGISTRATION: ClinicalTrials.gov NCT02993978 , Protocol Record 2012-113-31 M. Retrospectively registered - 21 November 2016.

Parents' Experiences and Responses to an Intervention for Psychological Preparation of Children and Families During the Child's Radiotherapy.

The aim of this study was to evaluate parents' experiences and responses to a systematic intervention for psychological preparation of children and families during the child's radiotherapy (RT) treatment. In this case-control study at 3 pediatric RT centers, an intervention with a preparatory kit, including age-adjusted information on tablets, gift of a stuffed toy or a pair of headphones, a parent booklet, and toy models of the computed tomography and RT machines was implemented. For evaluation, a mixed methods data collection was conducted. A total of 113 parents of children undergoing RT were included-n = 59 in the baseline group and n = 54 in the intervention group. Health-related quality of life was rated low, but parents in the intervention group expressed less anxiety after the RT compared with the baseline group. They found information suitable for their young children, siblings, and friends were involved and the toy models were used for play. Parents expressed positive feelings due to close interaction with staff and each other within the family. The solutions developed within a human-centered design approach and shaped as a systematic family-centered strategy contributed to parents understanding and coping with the child's RT.

Family Health Conversations at a Pediatric Oncology Center - A Way for Families to Rebalance the Situation.

PURPOSE: The study aimed to describe and understand adult family members' experiences of participating in a Family Health Conversation (FamHC) when a child is diagnosed with cancer. DESIGN AND METHODS: Twelve individual interviews were performed with adult family members who had participated in a FamHC. During the interviews each interviewee was a spokesman for his or her respective family. Thereby the family was included as a system. The interviews were analyzed using a hermeneutic approach. RESULTS: The analysis resulted in four themes: "To unburden the burden," "Seeing things in a new light," "To be seen the way you are," and "Talking to someone who is both within and alongside." Finally an overarching theme evolved, "To rebalance the situation" revealing the meaning of taking part in the FamHC. CONCLUSION: All participants considered the FamHC to be valuable. It was surprising that such a relatively small investment of two family conversations and a closing letter could have such significance for the families in their difficult situation. PRACTICE IMPLICATIONS: With training, clinical nurses can use a well-established structured interview process such as the Family Health Conversation to help family members to gain insight into each other's experiences, which increase their ability to cope and regain control.

Developing the role of Swedish advanced practice nurse (APN) through a blended learning master's program: Consequences of knowledge organisation.

This paper reports on a research study conducted with a group of nurses in Sweden enrolled in a newly developed blended learning master's programme to become advanced practice nurses (APNs). As background, the paper presents the regional needs the programme is intended to address and describes how the programme was designed. The aim was to understand how, from students' perspective, the nurse master's programme structured knowledge for their future position as APNs. The research question focuses on how the master's programme prepares students by meeting their diverse needs for knowledge. Empirical material was collected at two times during the students' first and second years of study through semi-structured qualitative interviews. The findings highlight the process in which these master's students gained a more advanced identity of becoming APNs. This process demonstrates how students perceive their current position as nurses based on a discourse of knowledge in relation to the practical and theoretical knowledge they encounter in the master's programme. This article concludes by recommending that attention should be paid to developing APN role models in the current Swedish healthcare system.

Adolescents' Experiences of Scoliosis Surgery and the Trajectory of Self-Reported Pain: A Mixed-Methods Study.

Scoliosis surgery for adolescents is a major surgery with a difficult recovery. In this study, a mixed-methods design was used to broaden the scope of adolescents' experiences of surgery for idiopathic scoliosis and the trajectory of self-reported pain during the hospital stay and through the first 6 months of recovery at home. Self-reports of pain, diaries, and interviews were analyzed separately. The results were then integrated with each other. The trajectory of self-reported pain varied hugely between individuals. Adolescents experienced physical suffering and struggled to not be overwhelmed. The adolescents described the environmental and supportive factors that enabled them to cope and how they hovered between suffering and control as they strived toward normality. This study highlights areas of potential improvement in perioperative scoliosis care in terms of nursing support and pain management.

Health Related Quality of Life among schoolchildren aged 12-13 years in relation to food hypersensitivity phenotypes: a population-based study.

BACKGROUND: While Health Related Quality of Life has been investigated among children with IgE-mediated food allergy, less is known about quality of life among children with other types of hypersensitivity to food. The aim of this study was to investigate Health Related Quality of Life (HRQL) in children with and without food hypersensitivity. Further, we compared HRQL between children with different phenotypes of food hypersensitivity. METHODS: In a large population-based cohort of schoolchildren in Northern Sweden, the parents of 2612 (96% of invited) completed a questionnaire. All 125 (5%) children who reported complete elimination of milk, egg, fish or wheat due to food hypersensitivity were invited to a clinical examination and 94 children participated. Of these, 75 children also completed a generic (KIDSCREEN-52) and a disease-specific HRQL questionnaire (FAQLQ-TF). Thereafter, these children were categorised into the different phenotypes: current food allergy, outgrown food allergy, and lactose intolerance. Additionally, 209 children with unrestricted diets answered the generic questionnaire. RESULTS: The median score of all KIDSCREEN-52 domains were above the population norm of 50 both in children with and without food hypersensitivity. No significant differences in distribution in generic or disease-specific HRQL were found between children with or without food hypersensitivity. There were no significant differences in HRQL between children with different phenotypes of food hypersensitivity. However, children with current food allergy tended to have the lowest HRQL. Further, poor HRQL defined as ≥75th percentile for the disease specific score was significantly more common in the current food allergy phenotype in the domain Emotional impact and the total FAQLQ, compared to the other phenotypes. CONCLUSIONS: In this population-based study, 12-13 year old children reported good HRQL regardless of having food hypersensitivity or not. However, the children with the current phenotype reported lower HRQL than the other phenotypes.

Translation and Testing of the Swedish Version of Iceland-Family Perceived Support Questionnaire With Parents of Children With Congenital Heart Defects.

There is a need for a suitable instrument for the Swedish context that could measure family members' perceptions of cognitive and emotional support received from nurses. The purpose of this study was to translate and test the psychometric properties of the Swedish version of the Iceland-Family Perceived Support Questionnaire (ICE-FPSQ) and, further, to report perceptions of support from nurses by family members of children with congenital heart defects (CHDs). A sample of 97 parents of children with CHD, living in Sweden, completed the Swedish translation of ICE-FPSQ. The Swedish version of ICE-FPSQ was found to be reliable and valid in this context. Parents scored perceived family support provided by nurses working in pediatric outpatient clinics as low, which suggests that nurses in these outpatient contexts in Sweden offered family nursing only sparingly.

It Is Tough and Tiring but It Works--Children's Experiences of Undergoing Radiotherapy.

Approximately 300 children ages 0 to 18 are diagnosed with cancer in Sweden every year, and 80 to 90 of them undergo radiotherapy treatment. The aim was to describe children's experiences of preparing for and undergoing radiotherapy, and furthermore to describe children's suggestions for improvement. Thirteen children between the ages of 5 and 15 with various cancer diagnoses were interviewed. Data was analyzed using qualitative content analysis. The findings revealed five categories: positive and negative experiences with hospital stays and practical arrangements; age-appropriate information, communication, and guidance to various degrees; struggle with emotions; use of distraction and other suitable coping strategies; and children's suggestions for improvement during radiotherapy. An overarching theme emerged: "It is tough and tiring but it works". Some key areas were: explanatory visits, the need for information and communication, being afraid, discomfort and suffering, the need for media distraction, dealing with emotions, and the need for support. A systematic, family-centered preparation program could possible help families prepare and individualized distraction during radiotherapy could contribute to reducing distress. Further studies with interventions could clarify successful programs.

A Family Systems Nursing Approach for Families Following a Stroke: Family Health Conversations.

Stroke in midlife is a life altering, challenging experience for the whole family thereby necessitating a family approach to intervention. The aim of this study was to describe the experiences of 17 family members living in Sweden, including seven adult stroke patients (six males; one female) under the age of 65 who participated in a series of three nurse-led family conversations that were offered in each family's home. These Family Health Conversations (FamHC) were guided by the conceptual lens of Family System Nursing. Individual, semi-structured, evaluative interviews conducted with each participant one month after the FamHC were analyzed by qualitative content analysis. The FamHC were described by family members as a unique conversation that they had not previously experienced in health care contexts. Family members described possibilities for relational sharing and meaningful conversations as well as changes in family functioning that support the suitability of FamHC for family stroke care.

Stress symptoms among adolescents before and after scoliosis surgery: correlations with postoperative pain.

AIMS AND OBJECTIVES: The aim of this study was to describe stress symptoms among adolescents before and after scoliosis surgery and to explore correlations with postoperative pain. BACKGROUND: Scoliosis surgery is a major surgical procedure. Adolescent patients suffer from preoperative stress and severe postoperative pain. Previous studies indicate that there is a risk of traumatisation and psychological complications during the recovery period. DESIGN: A prospective quantitative cohort study with consecutive inclusion of participants. METHODS: A cohort of 37 adolescent patients aged 13-18. To assess the adolescents' experiences before surgery and at six to eight months after surgery, the Trauma Symptom Checklist for Children - Alternative version, Youth Self-Report and Kiddie Schedule for Affective Disorder and Schizophrenia for children 12-18 were used. The Visual Analogue Scale was used for self-report of postoperative pain on day three. RESULTS: Rates of anxiety/depression and internalising behaviour were significantly higher before surgery than six months after. Preoperative anger, social problems and attention problems correlated significantly with postoperative pain on day three. At follow-up, postoperative pain correlated significantly with anxiety, social problems and attention problems. CONCLUSIONS: The results of this study indicate a need for interventions to reduce perioperative stress and postoperative pain to improve the quality of nursing care. RELEVANCE TO CLINICAL PRACTICE: Attention to preoperative stress and implementation of interventions to decrease stress symptoms could ameliorate the perioperative process by reducing levels of postoperative pain, anxiety, social and attention problems in the recovery period.

Support for Fathers of Children With Heart Defects.

The purpose of the study was to illuminate the meanings of the lived experiences of support as disclosed by fathers of children with congenital heart defect (CHD). Narrative interviews were conducted individually with five fathers of children diagnosed with CHD. A phenomenological-hermeneutic method was used to interpret the verbatim transcribed narrative interviews. The meanings of the lived experiences of support for the fathers were identified in two themes and illustrate the fathers' feelings of being supported when being in a mutual relationship with others. A third theme illustrates the situation when support is absent. Our findings indicate that support for fathers of children with CHD might be best promoted by the philosophy of family-centered care.

Children Undergoing Radiotherapy: Swedish Parents' Experiences and Suggestions for Improvement.

Approximately 300 children, from 0 to 18 years old, are diagnosed with cancer in Sweden every year. Of these children, 80-90 of them undergo radiotherapy treatment for their cancer. Although radiotherapy is an encounter with advanced technology, few studies have investigated the child's and the parent's view of the procedure. As part of an ongoing multicenter study aimed to improve patient preparation and the care environment in pediatric radiotherapy, this article reports the findings from interviews with parents at baseline. The aim of the present study was twofold: to describe parents' experience when their child undergoes radiotherapy treatment, and to report parents' suggestions for improvements during radiotherapy for their children. Sixteen mothers and sixteen fathers of children between 2-16 years old with various cancer diagnoses were interviewed. Data were analyzed using content analysis. The findings showed that cancer and treatment turns people's lives upside down, affecting the entire family. Further, the parents experience the child's suffering and must cope with intense feelings. Radiotherapy treatment includes preparation by skilled and empathetic staff. The parents gradually find that they can deal with the process; and lastly, parents have suggestions for improvements during the radiotherapy treatment. An overarching theme emerged: that despair gradually turns to a sense of security, with a sustained focus on and close interaction with the child. In conclusion, an extreme burden was experienced around the start of radiotherapy, though parents gradually coped with the process.

Nurses' fidelity to theory-based core components when implementing Family Health Conversations - a qualitative inquiry.

BACKGROUND AND AIM: A family systems nursing intervention, Family Health Conversation, has been developed in Sweden by adapting the Calgary Family Assessment and Intervention Models and the Illness Beliefs Model. The intervention has several theoretical assumptions, and one way translate the theory into practice is to identify core components. This may produce higher levels of fidelity to the intervention. Besides information about how to implement an intervention in accordance to how it was developed, evaluating whether it was actually implemented as intended is important. Accordingly, we describe the nurses' fidelity to the identified core components of Family Health Conversation. INTERVENTION AND RESEARCH METHODS: Six nurses, working in alternating pairs, conducted Family Health Conversations with seven families in which a family member younger than 65 had suffered a stroke. The intervention contained a series of three-1-hour conversations held at 2-3 week intervals. The nurses followed a conversation structure based on 12 core components identified from theoretical assumptions. The transcripts of the 21 conversations were analysed using manifest qualitative content analysis with a deductive approach. RESULTS AND CONCLUSION: The 'core components' seemed to be useful even if nurses' fidelity varied among the core components. Some components were followed relatively well, but others were not. This indicates that the process for achieving fidelity to the intervention can be improved, and that it is necessary for nurses to continually learn theory and to practise family systems nursing. We suggest this can be accomplished through reflections, role play and training on the core components. Furthermore, as in this study, joint reflections on how the core components have been implemented can lead to deeper understanding and knowledge of how Family Health Conversation can be delivered as intended.

Relaxation and guided imagery used with 12-year-olds during venipuncture in a school-based screening study.

Needle-related procedures are reported to be problematic for children. In a school-based celiac disease screening, 12-year-olds' experiences with relaxation and guided imagery (R-GI) during venipuncture were investigated. One group tried nurse-led R-GI (n = 60) and another group received standard care (SC; n = 49). A mixed method design was applied using short written narratives, facial affective scale (FAS), and visual analog scale (VAS) for pain intensity. Qualitative content analysis highlighted that diversity and contradictions when facing blood tests. FAS scores were significantly lower in the SC group before (p = 0.01), during (p = 0.01), and after (p = 0.01) venipuncture. VAS scores did not differ between the groups. The blood test was mostly experienced as unproblematic, and GI during venipuncture did not decrease pain or affect. However, the fact that a number of children scored high FAS indicates a need for effective methods to help children cope with needle-related school-based procedures.

Young people's experiences with scoliosis surgery: a survey of pain, nausea, and global satisfaction.

BACKGROUND: Scoliosis surgery is one of the most extensive elective surgical processes performed on young people. Although there is a great store of knowledge of surgical techniques, patients' experiences of going through surgery have not been extensively studied. PURPOSE: The aim of this study is to describe how a cohort of young people and their parents retrospectively rate postoperative pain and nausea and describe their experiences of scoliosis surgery. METHODS: In a retrospective cohort study, 87 young people aged 8-25 years with scoliosis who underwent corrective surgery from 2004 to 2007 were invited to complete a questionnaire, as were their parents. The semistructured questionnaire dealt with experiences of pain, nausea, and global satisfaction pre- and posthospitalization, assessed by visual analogue scales. The free text commentaries were analyzed using qualitative content analysis. RESULTS: A total of 51 patients (59%) and 65 parents (75%) answered the questionnaires. Out of the completed questionnaires, 41 had idiopathic, 23 neuromuscular, and 6 other types of scoliosis. Postoperative patient-rated pain was severe 7.3 (median, interquartile range 5-8.4, visual analogue scale 0-10 cm), and the severe pain lasted for 5 (median, 2.7-7.0) days. Nausea was rated to a median of 5 (1.1-7.3) and lasted for a median of 3 (1-5.2) days. Global satisfaction was rated to a median of 3.2 (1.5-5.2). Postoperative pain was the most prominent issue, and present pain was found in 51% of respondents. Nausea and loss of appetite were common during the entire hospital stay. Waiting for the nurses' assistance, lack of control, and technical failures with the analgesia equipment caused discomfort. Parents experienced a lack of confidence in the nurses and felt helpless to support their child or relieve the child's suffering. CONCLUSION: Young people who underwent scoliosis surgery reported severe postoperative pain and nausea during the hospitalization period and persistent and recent onset pain after discharge, although they did not indicate global dissatisfaction with the hospital stay.

Adolescents' experience with scoliosis surgery: a qualitative study.

This article reports a study of adolescents' narrated experiences of undergoing scoliosis surgery. Six adolescents were interviewed. Open and semistructured questions were asked, and a qualitative content analysis of the text was performed. The results are presented in three main categories followed by subcategories. The three main categories of experience were emotional, physical, and social. The emotional aspects that emerged were fear, nightmares, nervousness, and helplessness. These had a great impact on adolescents' well-being before, during, and after the hospital visit. The physical aspects were mobilization, scars, different hip levels, pain, nausea, appetite, and urinary catheter. These aspects caused much discomfort, mostly during the hospital visit. The social aspects were friends, power, coaching and comfort, and sports. Some of the social aspects had a strong negative impact on the adolescents' well-being mostly after the hospital visit. This study suggests that both before and long after the surgery adolescents have strong emotions that they should be better prepared and helped to manage. To optimize perioperative care an interdisciplinary, a holistic approach must be taken that incorporates the complexity and whole of the adolescent's experiences. The findings of this study suggest that perioperative care of adolescents during scoliosis surgery needs to be optimized. To improve patients' psychologic preparation before surgery pediatric nurses should learn more about the individual patient and make care plans from a holistic perspective. Follow-up after discharge should address emotional, social, and physical aspects of the adolescent's health.

Health-related quality of life in girls and boys with juvenile idiopathic arthritis: self- and parental reports in a cross-sectional study.

BACKGROUND: Juvenile Idiopathic Arthritis (JIA) affects children and adolescents with both short-term and long-term disability. These children also report lower health-related quality of life (HRQOL) compared to their healthy peers. However, there seems to be some discrepancies between self- and parent-reports, and gender differences need to be further studied. This study aims to describe HRQOL in girls and boys with JIA, and to explore gender differences in self-reports compared to parent-reports of HRQOL in children with JIA. METHODS: Fifty-three children and adolescents with JIA (70% girls and 30% boys) with a median age of 14 years (8-18 years), and their parents, participated in this cross-sectional study in Sweden. Data was systematically collected prior to ordinary visits at a Pediatric outpatient clinic, during a period of 16 months (2009-2010). Disability was assessed with the Childhood Health Assessment Questionnaire (CHAQ), and disease activity by physicians' assessments and Erythrocyte Sedimentation Rate (ESR). The Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) was used to assess self- and parent-reports of HRQOL in the child. RESULTS: In this sample of children with generally low disease activity and mild to moderate disability, more than half of the children experienced suboptimal HRQOL, equally in girls and boys. Significant differences between self- and parent-reports of child HRQOL were most evident among girls, with lower parent-reports regarding the girl's physical- and psychosocial health as well as in the total HRQOL score. Except for the social functioning subscale, where parents' reports were higher compared to their sons, there were no significant differences between boys- and parent-reports. CONCLUSIONS: More than half of the girls and boys experienced suboptimal HRQOL in this sample, with no gender differences. However, there were differences between self- and parent-reports of child HRQOL, with most significant differences found among the girls. Thus, differences between self- and parent-reports of child HRQOL must be taken into account in clinical settings, especially among girls with JIA.

Experiences of double-blind, placebo-controlled food challenges (DBPCFC): a qualitative analysis of mothers' experiences.

Fear and anxiety are recurring problems for parents of food-allergic children. However, no study has described parents' experiences of introducing food to their children after double-blind provocation. Therefore the aim of this study was to investigate mothers' experiences during their child's negative Double-Blind, Placebo-Controlled Food Challenge (DBPCFC) and the following reintroduction of food. Eight mothers were interviewed and a qualitative content analysis displayed two themes and six subthemes. The first theme, 'living with fear of the unknown', included the subthemes of 'fear of losing control', 'having faith even though fear prevails', 'reintroducing despite fear' and 'fear of causing harm'. In the second theme, the mothers described the challenging process of 're-evaluating earlier experiences' through the sub-themes of 'daring to take new challenges' and 'refraining from new challenges'. Our study indicates that the maternal perspective--not only the professional perspective--needs to be taken into account if mothers are to succeed in the challenging process of reintroducing foods.