Anders Ringnér

Parental experiences of information within pediatric oncology

Parents of children with cancer use information to create knowledge about their child’s disease. Information can help parents reduce chaos and create a feeling of control, but there are often obstacles to its acquisition, which has been described as similar to learning a new language. The purpose of this study was to describe parents’ experiences of acquiring and using information to create knowledge about their child’s cancer during the course of the illness. The authors used qualitative content analysis on data from focus groups and individual interviews with 14 parents of children with cancer. Two themes were constructed: (a) feeling acknowledged as a person of significance included feeling safe and secure in spite of uncertainty, having one’s hopes supported, and getting relief from other families’ experiences; (b) feeling like an unwelcome guest included feeling abandoned at important milestones, feeling forced to nag for information, and feeling burdened by the obligation to inform others. Parents may need extra attention at important milestones such as treatment cessation, with information meetings grounded in the parents’ own needs.

Professional Caregivers’ Perceptions of Providing Information to Parents of Children With Cancer

Information has been described as a critical part of the care for parents of children with cancer, but not much is known about how caregivers makes decisions about informing parents. This study aims to illuminate professional caregivers’ perceptions of providing information to parents of children with cancer. Twenty caregivers at a Swedish pediatric oncology ward participated in four focus group interviews. The interviews were transcribed verbatim and subjected to qualitative content analysis. Two themes were found: Matching the amount of information to the parents’ needs concerned situations where the amount of information provided according to the caregivers’ assessment is deemed too small, appropriate, or too large. Navigating through a vague structure dealt with a disrupted setting, unclear responsibilities within the team, difficult timing, unintelligible information, and underused tools for communication. Implications for intervention development are discussed.

Talking via the child: discursively created interaction between parents and health care professionals in a pediatric oncology ward.

The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.

Time Together : A nursing intervention in psychiatric inpatient care:Feasibility and effects

The facilitation of quality time between patients and staff in psychiatric inpatient care is useful to promote recovery and reduce stress experienced by staff. However, interventions are reported to be complex to implement and are poorly described in the literature. This multisite study aimed to evaluate the feasibility and effects of the nursing intervention Time Together, using mixed methods. Data consisted of notes from participant observations and logs to evaluate feasibility, and questionnaires to evaluate effects. The primary outcome for patients was quality of interactions, and for staff, it was perceived stress. The secondary outcome for patients was anxiety and depression symptom levels, and for staff, it was stress of conscience. Data were analysed using visual analysis, percentage of nonoverlapping data, and qualitative content analysis. The results showed that Time Together was a feasible intervention, but measurements showed no effects on the two patient outcomes: quality of interactions and anxiety and depressive symptoms and, questionable effects on perceived stress and stress of conscience among staff. Shared responsibility, a friendly approach, and a predictable structure enabled Time Together, while a distant approach and an unpredictable structure hindered the intervention. In conclusion, the intervention proved to be feasible with potential to enable quality interactions between patients and staff using the enabling factors as supportive components. It also had some effects on perceived stress and stress of conscience among staff. Further evaluation is needed to build on the evidence for the intervention.

Person-centred information to parents in paediatric oncology (the PIFBO study): A study protocol of an ongoing RCT.

BackgroundParents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child’s disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children’s nurses trained in the intervention method.Methods/DesignThis is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents’ preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses.DiscussionFew studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children’s nurses, which will facilitate implementation if the intervention proves to be effective.Trial registrationClinical trials NCT02332226 (December 11, 2014).

The Pediatric Inventory for Parents - Swedish Translation and Psychometric Testing

&NA; The Pediatric Inventory for Parents (PIP) measures parental stress related to caring for a child with an illness. However, no Swedish translation is available. Purpose: This study reports a Swedish translation of the PIP and psychometric properties of the instrument. Design and Methods: This is a descriptive/methodological paper. The PIP was translated and culturally adapted to Swedish, and comprehensibility was tested. Data were collected twice from 48 parents of children with different illnesses, and initial psychometric properties of the instrument were examined. The IES‐R (Impact of Event Scale‐Revised) was used for concurrent validity. Results: The Swedish version of the PIP demonstrated good correlations with the IES‐R, and temporal changes were similar. Endorsement frequencies and test‐retest were also satisfactory. When comparing groups of parents, the parents of children with cancer were statistically significantly more distressed, both on total score and for emotional distress and role function. Discriminative validity was demonstrated by comparing parents of children with cancer with parents of children with other diseases. Conclusions: The Swedish version of the PIP seems to be a valid and reliable instrument. However, as we used relatively small sample, for the future, we suggest further testing with larger samples. Practice Implications: Clinicians and researchers seeking to measure parental distress in chronic illness could use the Swedish version of the PIP. Highlights:The PIP measures distress in parents of chronically ill children.We present a Swedish translation and psychometric testing of the PIP.The Swedish version shows good initial validity and reliability.We recommend further testing in a larger sample.

Does ‘Time Together’ increase quality of interaction and decrease stress? A study protocol of a multisite nursing intervention in psychiatric inpatient care, using a mixed method approach

Introduction Despite the long-known significance of the nurse–patient relationship, research in psychiatric inpatient care still reports unfulfilled expectations of, and difficulties in, interactions and relationships between patients and staff. Interventions that create structures to allow quality interactions between patients and staff are needed to solve these problems. The aim of this project is to test effects of the nursing intervention Time Together and to evaluate the intervention process. Methods and analysis This is a multisite study with a single-system experimental design using frequent measures. The primary outcomes are quality interactions for patients and perceived stress for staff. Secondary outcomes are levels of symptoms of anxiety and depression for patients and stress of conscience for staff. A process evaluation is performed to describe contextual factors and experiences. Data are collected using questionnaires, participant observations and semistructured interviews. For analysis of quantitative data, both visual and statistical methods will be used. Qualitative data will be analysed using qualitative content analysis. Ethics and dissemination Ethical approval was granted by the Ethical Review Board in the region (Dnr 2016/339-31). The findings will contribute to the development of nursing interventions in general, but more specifically to the development of the intervention. This is relevant both nationally and internationally as similar interventions are needed but sparse. The findings will be disseminated through conference presentations and peer-reviewed publications. Trial registration number NCT02981563