Cancer during Adolescence: Negative and Positive Consequences Reported Three and Four Years after Diagnosis

Persons diagnosed with cancer during adolescence have reported negative and positive cancer-related consequences two years after diagnosis. The overall aim was to longitudinally describe negative and positive cancer-related consequences reported by the same persons three and four years after diagnosis. A secondary aim was to explore whether reports of using vs. not using certain coping strategies shortly after diagnosis are related to reporting or not reporting certain consequences four years after diagnosis. Thirty-two participants answered questions about coping strategies shortly after diagnosis and negative and positive consequences three and four years after diagnosis. Answers about consequences were analysed with content analysis, potential relations between coping strategies and consequences were analysed by Fisher's exact test. The great majority reported negative and positive consequences three and four years after diagnosis and the findings indicate stability over time with regard to perceived consequences during the extended phase of survival. Findings reveal a potential relation between seeking information shortly after diagnosis and reporting a more positive view of life four years after diagnosis and not using fighting spirit shortly after diagnosis and not reporting good self-esteem and good relations four years after diagnosis. It is concluded that concomitant negative and positive cancer-related consequences appear stable over time in the extended phase of survival and that dialectical forces of negative and positive as well as distress and growth often go hand-in-hand after a trauma such as cancer during adolescence

Cancer during Adolescence : Coping Shortly after Diagnosis and Psychosocial Function during the Acute and Extended Phase of Survival

In this thesis coping shortly after diagnosis and psychosocial function during the acute and extended phase of survival was investigated for individuals struck by cancer during adolescence. Sixty-one participants were recruited and data were collected from four to eight weeks (T1) up to four years (T7) after diagnosis. Study I: the aim was to describe how participants (n=56) cope with cancer-related distress in response to closed and open-ended questions. In response to closed-ended questions, the majority reported emotion-focused strategies, and in response to open-ended questions they reported meaning-based and problem-focused strategies. Study II: the aim was to investigate nurses’ and physicians’ ability to identify which coping strategies participants (n=48) use. Neither nurses nor physicians were successful in identifying which strategies participants used, although physicians were somewhat better. Study III: the aim was to identify participants’ (n=61) psychosocial states. Three states were identified: poor (A), average (B), and good (C). From 18 months after diagnosis more participants than expected by chance were in state C. At T7 77% were in State C and 15% in State A. Female gender, divorced parents, and using distracting to cope was related to State A and B. Study IV: the aim was to describe negative and positive cancer-related consequences reported (n=32) three and four years after diagnosis and to establish whether using certain strategies at T1 was related to reports of certain consequences at T7. The majority reported negative and positive consequences and a relation between using distracting to cope at T1 and reporting bodily concerns at T7 was established. In conclusion: it is difficult for nurses and physicians to identify how adolescents recently diagnosed with cancer cope with distress; the majority of individuals diagnosed with cancer during adolescence experience a state of good psychosocial function during the extended phase of survival, and distress and personal growth often go hand in hand after cancer during adolescence.

From skepticism to assurance and control : Implementation of a patient safety system at a pediatric hospital in Sweden

BACKGROUND: The use of evidence-based practice among healthcare professionals directly correlates to better outcomes for patients and higher professional satisfaction. Translating knowledge in practice and mobilizing evidence-based clinical care remains a continuing challenge in healthcare systems across the world. PURPOSE: To describe experiences from the implementation of an Early Detection and Treatment Program for Children (EDT-C) among health care professionals at a pediatric hospital in Sweden. DESIGN AND METHODS: Sixteen individual interviews were conducted with physicians, nurses and nurse assistants, which of five were instructors. Data were analyzed with qualitative content analysis. RESULTS: An overarching theme was created: From uncertainty and skepticism towards assurance and control. The theme was based on the content of eight categories: An innovation suitable for clinical practice, Differing conditions for change, Lack of organizational slack, Complex situations, A pragmatic implementation strategy, Delegated responsibility, Experiences of control and Successful implementation. CONCLUSIONS: Successful implementation was achieved when initial skepticism among staff was changed into acceptance and using EDT-C had become routine in their daily work. Inter-professional education including material from authentic patient cases promotes knowledge about different professions and can strengthen teamwork. EDT-C with evidenced-based material adapted to the context can give healthcare professionals a structured and objective tool with which to assess and treat patients, giving them a sense of control and assurance

From crisis to self-confidence and adaptation; Experiences of being a parent of a child with VACTERL association : A complex congenital malformation

Aim Knowledge is scarce regarding mothers' and fathers' experiences of being a parent of a child with VACTERL association-a complex malformation. The aim of the study was to describe experiences of being a parent of a child with VACTERL association. Method Semi-structured interviews were performed with ten mothers and nine fathers face-to-face or by telephone and analyzed by using Qualitative content analysis. Results The parents described crisis reactions at the discovery of malformations in their child. Involvement in care was reported from the initial hospital admission until actively taking responsibility for treatments at home. Eventually the health condition became an integrated part of everyday life. The parents expressed the importance of meeting other families with a child with VACTERL. Descriptions were given of more or less professionalism with perceived discrepancies of knowledge and experience between the healthcare professionals in the tertiary hospital and those in the local hospital. Difficulties in receiving medical support during the initial period at home were described. Furthermore, emotional support and practical arrangements regarding parental accommodation and transportation varied. Conclusion Being a parent of a child with VACTERL association involves crisis, mixed emotional reactions and shared responsibility for the child ' s treatment and care with the professional care providers. Psychological processing, good medical care and support from experts, and peer support from other parents is essential in the parents' struggle to reach self-confidence and adaptation. A care plan with individualized tailored care for each child including a training and support plan for the parents is warranted. To reduce the described discrepancies in knowledge and experience between the local and tertiary hospital, video sessions with the parents and responsible professionals at the local and tertiary hospital could be an appropriate mode of transferring information at discharge and follow up of the child

Parents' experiences of having their children take part in participatory action research creating a serious game about radiotherapy

INTRODUCTION: Radiotherapy (RT) is one of several treatment modalities used for children diagnosed with cancer. Several studies have designed interventions aimed to alleviate the stress that can occur in conjunction with RT. To include children in the design of interventions is rare and dependent on the parents giving consent to participation in research on their children's behalf. The aim was to illuminate, from the parents' perspective, the experience of their children being part in the co-creation of a serious game and their previous experiences of RT. METHODS: Ten parents of children taking part in a participatory action research study of the development of a serious game were invited to an interview and seven parents consented. An inductive, manifest content analysis was performed. RESULTS: The analysis resulted in an overarching theme: Parents' pre-understanding from their child's cancer treatment created a sensitivity to their child's wishes and a willingness to contribute to science. Four categories are presented: Intrinsic factors influenced the intent to participate, Extrinsic factors that had an effect on participation, Parents role in the game development, and Radiotherapy impinged the child and the parent. CONCLUSION: To be able to pay it forward to healthcare and other families with a child diagnosed with cancer was a contributing factor for parents' willingness to consent to participation after their children had undergone RT, especially since their children wanted to do so. Parents indicated interest in the developmental process and in following their children being part of the creation of a serious game about RT. IMPLICATION FOR PRACTICE: To understand why parents allow their children to participate in studies creates opportunities for the research community to structure studies that facilitate participation

Co-creation of a Serious Game About Radiotherapy : Participatory Action Research Study With Children Treated for Cancer

Background: Children with cancer who have to undergo radiotherapy can experience fear, because they have no prior knowledge of the treatment. One way of teaching children about the treatment and reducing their fear is to prepare them for it through serious games. Involvement of the end user in the design process within medicine is a way of ensuring that the product being developed will fit the intended user. Objective: The aim was to outline the contributions made by children and their parents through participatory action research when designing a serious game about radiotherapy. Methods: By means of participatory action research, children and their parents participated in the development of a serious game about radiotherapy. Nine children (7-10 years old) were included, each with an accompanying parent. A qualitative approach was used that included interviews and participant observation. Six rounds of iterative development process were used with the children and their parents. Meetings with the children were held either face-to-face or online. Each round resulted in a list of suggestions for changes to the game. A thematic analysis was performed based on the list of proposed changes, underpinned by all gathered data, to highlight how the children’s participation changed the game. Results: Two main themes were identified. The first theme was “The children’s participation was affected by their health and treatment” and included the following subthemes: “an opportunity to share emotions and perceptions of radiotherapy” and “the possibility to participate was affected by the severity of the disease.” The second theme was “participation allowed becoming an active part of game development” and included the following subthemes: “the opportunity to express sentiments about the game,” “the emergence of a playable game through the children’s contributions,” and “the necessity of understanding the text.” Conclusions: The method used in this study made the children active participants, and our results suggest that this method can be used by health care researchers to cocreate serious games with children. It is necessary to inform the children involved that the process takes time, and that the process can be altered to allow as much participation as possible without placing a burden on them. The children’s illness affected their possibility to take part; thus, it is crucial to accommodate the children’s needs when conducting similar studies. The parents’ participation facilitated the meetings for their children, even though their involvement in the game design was negligible

Understanding of the transition to adult healthcare services among individuals with VACTERL association in Sweden : A qualitative study

Current knowledge of transitional care from the perspective of individuals with congenital malformations is scarce. Their viewpoints are required for the development of follow-up programs and transitional care corresponding to patients' needs. The study aimed to describe expectations, concerns, and experiences in conjunction with transfer to adult health care among adolescents, young adults, and adults with VACTERL association, (i.e. vertebral defects, anorectal malformations (ARM), cardiac defects (CHD), esophageal atresia (EA), renal, and limb abnormalities). Semi-structured telephone interviews were performed and analyzed with qualitative content analysis. Of 47 invited individuals, 22 participated (12 males and 10 females). An overarching theme emerged: Leaving the safe nest of pediatric health care for an unfamiliar and uncertain follow up yet growing in responsibility and appreciating the adult health care. The participants described expectations of qualified adult health care but also concerns about the process and transfer to an unfamiliar setting. Individuals who were transferred described implemented or absence of preparations. Positive and negative experiences of adult health care were recounted including being treated as adults. The informants described increasing involvement in health care but were still supported by their parents. Ongoing follow up of health conditions was recounted but also uncertainty around the continuation, missing follow up and limited knowledge of how to contact health care. The participants recommended information ahead of transfer and expressed wishes for continued health care with regular follow up and accessibility to a contact person. Based on the participants' perspective, a transitional plan is required including early information about transfer and follow up to prepare the adolescents and reduce uncertainty concerning future health care. Meetings with the pediatric and adult team together with the patient and the parents are essential before transfer. Follow up should be centralized to centers with multi-professional teams well-experienced with the condition. Further studies are warranted to evaluate the transition process for adolescents and young adults with complex congenital health conditions

Children's interaction with a dog when having Animal Assisted Activity in paediatric hospital care

The aim of the study was to investigate the interaction process between child and dog and how it possibly affects children's wellbeing during Animal Assisted Activity. Children have reported negative feelings such as fear and anxiety when being cared for in hospital and various kinds of complementary treatment can alleviate this. Different complementary treatments, including interaction with a dog, can create positive emotions and the treatment has been reported to have both physiological and psychological beneficial effects. However, there is a lack of studies describing children's interaction with a dog. This is an observational study, analysed from field notes with qualitative content analysis using a deductive approach. Children (n = 49) aged 3–18 years of age at a paediatric hospital voluntarily participated in the study. The results are reported on a six-level scale that describes the child-dog interaction: 1. Passive interaction, 2. One-way non-spoken communication, 3. Facilitating the interaction, 4. Interaction by activity encouragement, 5. Interaction initiated by the child, and 6. Interaction through deepened interplay. All children attained level five. Eighty-nine per cent attained level six and these children interacted fully, having a two-way deepened interplay with the dog. Further, when the interaction proceeded to a deepened interplay this affected the children positively both physically and emotionally. Structured Animal Assisted Activity with a dog that includes an introduction, an active part and a relaxing part is a suitable model to offer children in paediatric hospital care since the children attained a child-initiated interaction or interaction through deepened interplay

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.De två första författarna delar på förstaförfattarskapet.</p