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).

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.

Rather a Competent Practitioner than a Compassionate Healer: Patients' Satisfaction with Interactions in Psychiatric Inpatient Care.

Interactions with staff are important aspects in patients' experiences of psychiatric inpatient care (PIC). This study aimed to evaluate patients' satisfaction with their interactions with PIC staff and whether sociodemographic factors, depression and anxiety symptoms were associated with their perceptions of these interactions. In this cross-sectional study, we collected data from 84 patients receiving inpatient care in three psychiatric settings in Sweden. The patients' perceptions of interactions with staff and self-reported degrees of depression and anxiety were evaluated through questionnaires. Overall, patients were satisfied with the patient-staff interaction. However, significantly higher scores were related to staffs' practical competence than to their compassion. Older patients reported significantly more satisfaction than younger patients with their most recent meeting with staff. Tailored nursing interventions may improve staff's compassionate capacity. Further research in larger samples is needed to improve our understanding of the factors associated with how patients perceive their interactions with staff.

Sexuality After Treatment of Diffuse Large B-cell Lymphoma: Patients' Experiences and Psychometric Testing of the Sexual Adjustment Questionnaire-Swedish Version II.

BACKGROUND: Sexuality is an important part of health-related quality of life. To ensure adequate supportive interventions, valid and reliable instruments specific to sexual changes and adjustments after cancer treatment are needed. OBJECTIVES: The aims of this study were to test the psychometric properties of the Sexual Adjustment Questionnaire-Swedish version II (SAQ-SII) in patients treated for diffuse large B-cell lymphoma and to describe and explore patients' experiences of sexuality after treatment. METHODS: A cross-sectional study was conducted in 2019, using SAQ-SII and data from the National Quality Registry for Leukemia-subregistry for Lymphoma, which included 257 patients (25% response rate). An exploratory factor analysis was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's α. Independent t tests, analysis of variance, and multiple regression were used to describe patients' experiences of sexuality. RESULTS: The exploratory factor analysis resulted in a 4-factor structure, explaining 65.7% of the total scale variance (SAQ-SII). The Cronbach's α for the SAQ-SII was 0.88 and varied between 0.70 and 0.89 across subscales. Sexuality was affected in various ways and extent. Sexual Interest was most affected, whereas Sexual Function was least affected. Being male, of younger age, without comorbidities, and in a relationship were associated to a higher Sexual Interest. CONCLUSIONS: The SAQ-SII is a valid and reliable instrument to measure changes and adjustments in sexuality in patients treated for lymphoma. IMPLICATIONS FOR PRACTICE: Assessments of sexuality in a broad sense should be an integrated part of cancer care to ensure timely interventions for those who need and want support.

Time Together as an arena for mental health nursing - staff experiences of introducing and participating in a nursing intervention in psychiatric inpatient care.

A lack of meaningful activities for people with mental ill health admitted to psychiatric inpatient care has been related to feelings of boredom and 'doing nothing' and is not in line with recovery-oriented care. Staff in psychiatric inpatient care report having limited time, ambiguous responsibilities, and insufficient support that counteracts their ideals of good nursing care and puts them at risk for high levels of stress and stress of conscience. Research highlights a need for interactions between patients and staff, but few nursing interventions with such a focus are described in the literature. This qualitative study aimed to illuminate staff experiences of introducing and participating in the nursing intervention Time Together, via qualitative content analysis of 17 individual semi-structured interviews with nursing staff in psychiatric inpatient care. The results show that these staff members experienced Time Together as an arena for mental health nursing. They prepared for the introduction of the intervention by laying a framework for success. Although the actual implementation led to them feeling burdened, they found that Time Together fostered relationships between patients and staff. For successful implementation, mental health nurses need to advocate the intervention. As Time Together constitutes an arena for mental health nursing, play and conversations based on reciprocity and equality can contribute to patients' recovery.

Patients' experiences of isolation in psychiatric inpatient care: Insights from a meta-ethnographic study.

Historically, people with mental ill-health have been isolated from society. Although mental health care has moved from closed to more open forms of care, in many societies care is still provided in locked wards, and people with mental ill-health are sometimes secluded from their fellow patients, families, friends, and visitors. The aim of this study was to illuminate patients' experiences of isolation in psychiatric inpatient care. A systematic review of qualitative research was conducted, and the key findings were subjected to meta-ethnographic synthesis. The findings were twofold: 'being admitted to prison' and 'having access to shelter'. The experience of isolated care as prison-like symbolizes patients' longing for freedom and feeling restricted and limited by rules, stripped of rights, abandoned, controlled, powerless, and unsupported. In contrast, the experience of isolation as shelter symbolizes safety and the opportunity to regain control over one's own situation. A stigmatizing public view holds that people with mental ill-health are dangerous and unpredictable and, therefore, unsafe to themselves and others. Being placed in isolation because these fears contribute to self-stigma among patients. Promoting a sheltered experience in which isolation is used with respect for patients and the reasons are made explicit may encourage recovery. A shift in emphasis in ward culture from observation to engagement is needed to reduce blame, shift patient experiences from prison to shelter, and to support autonomy as a therapeutic intervention.

Patients' experiences of taking part in Time Together - A nursing intervention in psychiatric inpatient care.

This qualitative study aimed to illuminate patients' experiences of taking part in the nursing intervention Time Together. The data were drawn from 11 individual semi-structured interviews with patients and analysed with qualitative content analysis using an inductive approach. The results show that patients taking part in Time Together felt confirmed and participated on equal terms; thus, they experienced being seen as humans among other humans. Time Together offered patients a break, and they felt strengthened, which contributed to their hopes for recovery. Furthermore, when Time Together was absent patients felt disconfirmed, which fostered feelings of distance from staff. The results support the effectiveness of the intervention, indicating that Time Together may be a tool to facilitate patients' personal recovery. However, the success of the intervention depends on staff compliance with the predetermined structure of the intervention in combination with engagement.

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.

The Pediatric Inventory for Parents - Swedish Translation and Psychometric Testing.

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.

Does a new spatial design in psychiatric inpatient care influence patients' and staff's perception of their care/working environment? A study protocol of a pilot study using a single-system experimental design.

BACKGROUND: Research shows that worn-out physical environments are obstacles to psychiatric inpatient care. Patients want better relationships with staff and things to do; staff want an environment that offers hope, a calm atmosphere, and joint activities. A county council in northern Sweden and Philips Healthcare partnered to create solutions to the environmental challenges of psychiatric inpatient care. One ward at a county psychiatric clinic was selected for a pilot project to test solutions that could improve the care environment for patients, staff, and relatives. The aim of the overall project is to evaluate the effects of a newly designed psychiatric inpatient ward on patients and staff in terms of quality of care and stress. In this study, we focus on the feasibility through testing questionnaires and exploring barriers to recruiting staff and patients. METHODS: This study had a single-system experimental design, comparing a psychiatric unit pre- and post-implementation of the novel spatial design, using repeated measures with the same questionnaires twice a week during baseline and intervention phases. Primary outcomes were quality interactions (patients) and perceived stress (staff). Secondary outcomes were levels of anxiety and depression (patients), and stress of conscience (staff). A process evaluation was aimed to describe contextual factors and participant experiences of the new design. Data was collected using questionnaires and semi-structured individual interviews with patients and focus group discussions with staff. Both visual and statistical methods were used to analyse the quantitative data and content analysis for the qualitative data. DISCUSSION: The findings will contribute insights into whether and how a new spatial design might contribute to quality interactions and reduced stress. This is relevant both nationally and internationally, as similar interventions are needed but sparse. The findings will be disseminated through peer-reviewed publications and conference presentations. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03140618, registered 4 May 2017.

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.

Perceptions of the Cause, Impact and Management of Persistent Fatigue in Patients with Rheumatoid Arthritis Following Tumour Necrosing Factor Inhibition Therapy.

INTRODUCTION: Fatigue is a major symptom of rheumatoid arthritis (RA), the most common chronic inflammatory joint disease. The present study explored patients' experiences of RA fatigue to elucidate unique elements and management strategies. METHODS: This single site study recruited tumour necrosis factor-α inhibitor (TNFi)-treated RA patients with a moderate/good response in disease activity and persistent moderate/greater fatigue on a five-point verbal rating scale. This qualitative descriptive design used semi-structured questions, individual interviews and content analysis of narrative data. RESULTS: Ten patients were interviewed (six women), with age and disease duration ranges of 44-75 and 6-36 years, respectively. Perceptions of the RA fatigue experience generated four categories (experiencing a distinct, yet seldom discussed RA symptom; seeking an explanation for fatigue; being in an incapacitating state; and trying to manage) and eight subcategories. Fatigue was newly identified as a distinct part of the entity of RA. While patients proposed many plausible root causes, the only rational explanation for the nature of this fatigue was that it was integral to their RA. Singularly, fatigue contributed considerably to RA-imposed lifestyle restrictions. Patients had learnt to accommodate and self-manage fatigue in the absence of professional input. Novel management strategies proposed included patients talking about the nature of RA fatigue with others and the need for staff to alert patients to this distinct symptom of RA. CONCLUSION: Fatigue, branded as a distinct symptom of RA, exerted an identifiable impact on patients. Fatigue is potentially amenable to modification; talking about fatigue was proposed as a novel management strategy. Copyright © 2016 John Wiley & Sons, Ltd.

From ideals to resignation - interprofessional teams perspectives on everyday life processes in psychiatric inpatient care.

WHAT IS KNOWN ON THE SUBJECT?: Psychiatric inpatient care has been described by both ward staff and patients as being demanding and disorganized, lacking opportunities for quality interactions in everyday life through joint activities. Qualitative research on interprofessional teams' perspectives on everyday life processes in psychiatric inpatient care is lacking. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE?: Staff have ideals about care and collaboration, but the obstacles they face in everyday life, such as a poor environment, power asymmetry, lacking structure and the demands of managing chaos, mean that they appear to resign and shift focus from the patients' best interests to self-survival. Different professions in general describe the same obstacles in everyday life on the wards but there are also profession-specific perspectives on distancing and feelings of abandonment. To our knowledge, these findings have not been reported in the international evidence. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Given these findings we suggest interventions such as Protected Engagement Time as well as reflective dialogues within interprofessional teams. This would help staff to resume their caring role in everyday life in psychiatric inpatient care and put their ideals into practice. ABSTRACT: Introduction Patients and ward staff describe psychiatric inpatient care as demanding, characterized by unpredictable events, yet research on interprofessional teams perspectives of everyday life processes in psychiatric inpatient care lacks. Aim This study aims to explore everyday life processes in psychiatric inpatient care, as reported by staff in interprofessional teams. Method A grounded theory design was used and 36 participants were interviewed. Results The analysis resulted in a process-oriented core category From ideals to resignation. Related to this core category were three further categories: Knowing where to go, Walking a path of obstacles and Shifting focus from the patient's best interests to self-survival. The staff had ideals about care and collaboration, but a poor environment, power asymmetry, lacking structure and demands of managing chaos meant that they appeared to resign from putting their ideals into practice. Discussion Different professions in general describe the same obstacles in everyday life on the wards but there are also profession-specific perspectives on distancing and feelings of abandonment. To our knowledge similar findings have not been reported in the international evidence. Implications In order to support interprofessional teams to work according to their ideals, interventions such as Protected Engagement Time and reflective dialogues within the teams are suggested.

Experiences and preferences of care among Swedish immigrants following a prenatal diagnosis of congenital heart defect in the fetus: a qualitative interview study.

BACKGROUND: Immigrants experience significant challenges when in contact with healthcare and report less satisfaction with maternity care compared to native Swedes. Research that gives voice to pregnant immigrant women and their partners following a prenatal diagnosis of a fetal anomaly is scarce. Thus, the aim of this study was to explore experiences and preferences of care following a prenatal diagnosis of congenital heart defect among Swedish immigrants. METHODS: Pregnant immigrants and their partners were consecutively recruited following a prenatal diagnosis of a congenital heart defect in the fetus. Nine respondents were interviewed in five interviews, four with the aid of a professional interpreter. The material was analyzed using manifest qualitative content analysis. RESULTS: The analysis resulted in five categories: 1) "Trustworthy information", 2) "Language barriers", 3) "Psychosocial situation", 4) "Peer support", and 5) "Religious positions". CONCLUSION: The potential need for interpreter services, visual information, psychosocial support, coordination with welfare officers, and respect for religious positions about termination of pregnancy are all important aspects for health professionals to consider when consulting immigrants faced with a prenatal diagnosis of fetal anomaly in the fetus. Peer support within this context needs to be further explored in future studies.

A person-centred intervention for providing information to parents of children with cancer. Experiences and effects.

PURPOSE: The aim of this paper is to describe the experiences of participating in a person-centred information intervention aimed at parents of children with cancer. METHODS: Eight parents participated in the intervention, beginning two months after their child's diagnosis. The intervention was based upon the representational approach to patient education and a mixed method approach was employed in the study. The experiences of parents and intervention nurses were captured via qualitative interviews and the effects of the intervention on parental psychosocial measures, primarily perceived stress, were evaluated using a single-case design with web-based questionnaires. RESULTS: Parents expressed high satisfaction with the intervention, as reported in the follow-up interviews and on the scale measuring satisfaction. However, no changes were seen in the quantitative measures of psychosocial distress. The nurses performing the intervention felt it was useful and feasible. CONCLUSIONS: A representational approach to providing person-centred information to parents of children with cancer was appreciated and considered feasible by both the parents and the intervention nurses. However, further research is needed considering the lack of effect on the parents' perceived stress.

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

BACKGROUND: Parents 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/DESIGN: This 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. DISCUSSION: Few 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 REGISTRATION: Clinical trials NCT02332226 (December 11, 2014).

Including systematic reviews in PhD programmes and candidatures in nursing - 'Hobson's choice'?

Nowadays, gathering and synthesising evidence, i.e. conducting systematic reviews, is considered an important part of any health service research endeavour. Reviewing the literature, however suggest that it is not yet common that PhD students/doctoral candidates publish systematic reviews or even include a high quality review of the literature as a part of their PhD programme or candidature. Implying that systematic reviewing skills might not be acquired by going through an education on a postgraduate level. Additionally, scholars debating systematic reviews 'to be or not to be' as a part of research training seem to be sparse, especially within the field of nursing. In this issue for debate, we would like to propose that the absence of systematic reviews' in this context might severely hamper the 'up and coming' researchers as well as the research conducted. We envisage that this lack can have a negative impact on international nursing practice, and therefore propose that systematic reviews should be considered, whenever appropriate, as a mandatory part of any PhD programme or candidature. We believe that abilities in systematic reviewing will be a sought after research skills in the near future. Including systematic reviews would promote i) refined, well-grounded adequate research questions, ii) PhDs with broad and elevated methodological skills, iii) an increased level of evidence based nursing praxis. However, to make this a reality, supervisors, PhD students, and candidates would need to understand the value of this kind of research activity. Finally, lobbying University faculty boards and grant providers that are not inclined to view literature reviews as 'proper' research or as an important part of health service research, needs to be put on the agenda.

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.