The experiences of grandparents involved in the home-based end-of-life care of their grandchild with cancer: A qualitative secondary data analysis.

While grandparents are often a valuable resource in home-based pediatric end-of-life care, they may also experience psychological consequences when faced with their grandchild's illness and death. In this qualitative study, we performed semi-structured interviews with seven bereaved grandparents of four children with cancer who received home-based end-of-life care and died at home at age <18. Through qualitative content analysis we identified the overarching theme: "Navigating complex and unclear roles to support the family" and five themes: (1) Providing comfort and support; (2) Balancing and adapting involvement; (3) Worrying silently; (4) Managing difficult emotions; and (5) Calling for support and understanding. The findings underline the often conflicting roles that grandparents undertake of providing support while respecting parents' autonomy and putting aside their own emotional reactions. Involving grandparents in pediatric end-of-life care may enhance family resources, but should also consider grandparents' perspectives and need for support.

Self-report and device-based physical activity measures and adherence to physical activity recommendations: a cross-sectional survey among people with inflammatory joint disease in four European countries.

OBJECTIVES: Self-monitoring of physical activity (PA) has the potential to contribute to successful behaviour change in PA interventions in different populations, including people with inflammatory joint diseases (IJDs). The objectives of this study were to describe the use and knowledge of self-report-based and device-based PA measures in people with IJDs in four European countries, and to explore if the use of such devices, sociodemographic or disease-related variables were associated with adherence to the recommendations of at least 150 min of moderate to vigorous PA per week. SETTING: Cross-sectional survey, performed in 2015-2016. PARTICIPANTS: People with IJDs in Belgium, Denmark, Ireland and Sweden. PRIMARY AND SECONDARY OUTCOME MEASURES: Use of self-report and device-based PA measures, receipt of instructions how to use PA measures, confidence in using them, adherence to PA recommendations and associated factors for adherence to PA recommendations. RESULTS: Of the 1305 respondents answering questions on PA measures, 600 (46%) reported use of any kind of self-report or device-based measures to self-monitor PA. Between country differences of 34%-58% was observed. Six per cent and four per cent received instructions from health professionals on how to use simple and complex devices, respectively. Independent associated factors of fulfilment of recommendations of PA were living in Ireland (OR=84.89, p<0.001) and Sweden (OR=1.68, p=0.017) compared with living in Denmark, not perceiving activity limitations in moderate activities (OR=1.92, p<0.001) and using a device to measure PA (OR=1.56, p<0.001). Those living in Belgium (OR=0.21, p<0.001) were less likely to fulfil recommendations of PA. CONCLUSIONS: Almost half of the participants with IJDs used self-report-based or deviced-based PA measures, although few used wearable devices regularly. The results indicate that participants meeting public PA health guidelines were engaged in self-monitoring of PA.

Home-Based Specialized Pediatric Palliative Care: A Systematic Review and Meta-Analysis.

CONTEXT: Although specialized pediatric palliative care (SPPC) teams increasingly provide home-based care, the evidence of its impact has not yet been systematically evaluated. OBJECTIVES: To examine the impact of home-based SPPC in children and adolescents with life-limiting conditions, regarding place of death, quality of life and symptom burden. METHODS: We searched Medline, EMBASE, CINAHL, PsycINFO, the Cochrane Central Register of Controlled Trials, Web of Science and Scopus for studies comparing children and adolescents with life-limiting conditions receiving home-based SPPC with children and adolescents not receiving home-based SPPC, or studies reporting before-and-after measurements. We included studies that reported on place of death, quality of life and/or symptoms. Two authors independently screened the articles, extracted data, and assessed quality. Results were synthesized as a systematic narrative synthesis and meta-analysis, using a random-effects model. RESULTS: We included five studies, which reported on 392 children and adolescents. Meta-analysis showed that receiving home-based SPPC was associated with a more than fourfold increased likelihood of home death (risk ratio 4.64, 95% confidence interval 3.06-7.04; 3 studies; n=296). Most studies reported improved quality of life and reduced symptom burden. The included studies were of low to moderate quality with a high risk of bias. CONCLUSION: This systematic review suggests that home-based SPPC is associated with increased likelihood of home death, and might be associated with improved quality of life and reduced symptom burden. The small number of studies and an overall high risk of bias, however, makes the overall strength of evidence low.

Intersectoral collaboration in home-based end-of-life pediatric cancer care: A qualitative multiple-case study integrating families' and professionals' experiences.

BACKGROUND: Many children and adolescents with incurable cancer and their families prefer to receive end-of-life care and to die at home. This implies a transition of care from hospital to home and presupposes the establishment of a well-functioning collaboration between the family and professionals across health care sectors. AIM: To identify and explore key elements of home-based end-of-life care collaboration for children with cancer, as experienced by their parents and grandparents and the hospital- and community-based professionals involved. DESIGN: Descriptive qualitative multiple-case study. Data were collected by semi-structured interviews and written responses to open-ended questions, and analyzed inductively across cases using qualitative content analysis. SETTING/PARTICIPANTS: Cases comprised a criterion sample of five children (aged <18 years), who died of cancer at home. Cases were represented by the children's bereaved parents (n = 8) and grandparents (n = 7), and community-based professionals (n = 16). Also, hospital-based professionals (n = 10) were interviewed about the children's end-of-life care through group interviews. RESULTS: We identified five main themes, describing key elements of the end-of-life collaboration: Establishing the collaboration, Bolstering family life, Elucidating organization and integration, Managing challenges, and Closing the collaboration. These themes all came under the overarching theme: A mutual trust-based collaboration. On this basis, we developed the "Home-Based Pediatric End-of-Life Care Model for Children with Cancer." CONCLUSIONS: By highlighting key elements in the family-centered, intersectoral and interprofessional end-of-life care collaboration, our "Home-Based Pediatric End-of-Life Care Model for Children with Cancer" offers a framework for further optimization of home-based end-of-life care services for children with cancer and their families.

Preferences for Self-Management and Support Services in Patients With Inflammatory Joint Disease: A Danish Nationwide Cross-Sectional Study.

OBJECTIVE: To explore preferences for self-management and support services in patients with inflammatory joint disease (IJD) and to investigate whether these preferences differ by age, sex, diagnosis, and disease duration. METHODS: We used a nationwide cross-sectional online survey for patients with rheumatoid arthritis, psoriatic arthritis, and axial spondyloarthritis. Descriptive statistics were applied to explore preferences and to test for differences according to the different subgroups of patients. RESULTS: The questionnaire was completed by 664 patients. Younger patients indicated greater interest in 1-to-1 discussions with psychologists or another patient, educational sessions, events, and online services, and older patients indicated greater interest in talks by researchers. More women than men indicated interest in health professionals' 1-to-1 discussions, occupational therapists' question-and-answer (Q and A) sessions, physical activity, and informational websites. Patients with axial spondyloarthritis tended to indicate the most interest in the different services, and patients with rheumatoid arthritis the least interest, reaching statistical significance regarding discussion groups about IJD experiences, 1-to-1 discussions with psychologists or another patient, Q and A with another patient, stress/anger management, and online patient communication. More patients with short rather than long disease duration indicated interest in 1-to-1 discussions with rheumatologists or nurses, organized talks with experienced patients, and online services for patient communication and stories. CONCLUSION: Patients with IJD report various needs regarding self-management and support services, including 1-to-1 services traditionally delivered as part of usual care, but also talks, physical activity, and educational and online services. Although preferences differed across age, sex, diagnosis, and disease duration, all subgroups indicated great need for support, with only small differences in their top preferences.

Back to school with telepresence robot technology: A qualitative pilot study about how telepresence robots help school-aged children and adolescents with cancer to remain socially and academically connected with their school classes during treatment.

Aim: To explore how an AV1 telepresence robot helps school-aged children and adolescents with cancer to remain socially and academically connected with their school classes during cancer treatment. Design: Qualitative pilot study. Methods: Data were collected through semi-structured interviews with school-aged children and adolescents (N = 3, 12-14 years) diagnosed with cancer, their parents (N = 3), teachers (N = 2), classmates (12-14 years, N = 15, focus group interviews) and healthcare professionals (N = 4). Participant observation was performed in the child or adolescents' homes and in the classrooms during education participation via an AV1 telepresence robot. Results: Five themes emerged: expectations, sociality, learning, spatiality and technology. Participants experienced the robots as facilitating social interaction processes with classmates and inclusion in learning activities, reducing their sense of loneliness and lacking behind educationally. Nevertheless, multiple factors determine whether the robot is perceived as exclusive, including the technical functionality of the robot, spatiality in the classroom and mutual expectations of the parties involved.

Development of an Educational Program for Non-Professional Soccer Coaches in Charge of Community-Based Soccer in Men with Prostate Cancer: a Qualitative Study.

BACKGROUND: While clinical trials have demonstrated the benefits of structured exercise for prostate cancer survivors, few attempts have been made to investigate and implement sustainable community-based exercise programs supporting adoption of long-term physical activity behavior. Against this background, the aims of this study was to explore the perspectives of experts and stakeholders on the development of a training course and intervention manual used to support the delivery of community-based soccer training in men with prostate cancer (the FC Prostate Community [FCPC] trial). METHODS: A two-step qualitative design including triangulation of methods, data sources, and researchers. Step 1 comprised key informant interviews with clinical and scientific experts (n = 4). Step 2 included stakeholder focus group interviews with nurses (n = 5), non-professional soccer coaches and club representatives (n = 5), and prostate cancer survivors (n = 7). RESULTS: Four themes emerged from the analysis of the key informant interviews: The Coach's Qualifications, Structure of the Training, Prevention of Injuries, and A Non-Patient Environment, which informed development of the training course and intervention manual. The stakeholders added the importance of clarifying the Responsibility of the Coach, the value of Positive Competition, and Social Inclusion of the prostate cancer survivors in the club. Based on these results, we present the final templates for the training course and intervention manual. CONCLUSIONS: No general set of rules or safety measures to promote or optimize the delivery of community-based exercise in cancer survivors is recommended. However, the general principles related to the necessary clarification of the coach's responsibility in relation to the prevention and management of injuries and participant adherence through a non-patient environment may be transferable to the training and education of other groups of lay persons in charge of delivering exercise interventions to other clinical subpopulations in a non-hospital setting.

A survey across four European countries to determine rheumatology health professionals' awareness of physical activity measures in people with inflammatory joint diseases.

OBJECTIVES: The objectives of this study were to determine rheumatology health professionals' (HPs)' awareness of and confidence in using physical activity (PA) measures in people with inflammatory joint diseases (IJDs), their own self-reported PA levels and to identify HP-related educational needs. METHODS: Rheumatology HPs in Denmark, Sweden, Ireland and Belgium participated in an on-line survey. Descriptive statistics and latent class analysis (LCA) were undertaken SPSS (v21and SASv9.4) to describe data aggregates and range and to identify subclasses of groups with respect to use of PA measures. RESULTS: 322 (n=322, 75.5% women) HPs responded from Denmark (n=50, 15.5%), Sweden (n=66, 20.5%), Ireland (n=28, 8.7%) and Belgium (n=178, 55.3%) and the majority of respondents (n=286, 91.7%) reported it was important to measure PA in people with IJDs. Only 28.2% of HPs used simple body worn sensors to measure PA levels in their patients. The majority were interested in on-line education on measuring PA (82.9%). LCA, used to generate classes of PA measures employed by HPs, revealed three distinct classes reflecting differences in self-reported PA levels, awareness of PA measures, further education requirements and professional background. CONCLUSIONS: The majority of respondents reported that they considered measuring PA as important in people with IJDs; however, the majority lacked confidence in how to measure it. There was strong interest in further education around measuring PA. Three distinct respondent classes were identified to inform targeted education on how to measure PA.

Physical activity behaviour in men with inflammatory joint disease: a cross-sectional register-based study.

Objectives: Physical activity is recommended as an essential part of the non-pharmacological management of inflammatory joint disease, but previous research in this area has predominantly included women. The aim of this study was to examine physical activity behaviour in men with inflammatory joint disease. Methods: The study was conducted as a cross-sectional register-based study. Data on physical activity behaviour in men with RA, PsA and AS were matched with sociodemographic and clinical variables extracted from the DANBIO registry. Logistic regression analyses using multiple imputations were performed to investigate demographic and clinical variables associated with regular engagement in physical activity (moderate-vigorous ⩾2 h/week). Descriptive statistics were applied to explore motivation, barriers and preferences for physical activity. Results: A total of 325 men were included of whom 129 (40%) engaged in regular physical activity. In univariate analyses, higher age, visual analogue scale (VAS) for pain, VAS fatigue, VAS patient's global, CRP level, disease activity, functional disability and current smoking were negatively associated with regular engagement in physical activity. In the final multivariable regression model only a high VAS fatigue score (⩾61 mm) (OR = 0.228; CI: 0.119, 0.436) remained significantly independently associated with regular physical activity. Conclusion: A majority of men with inflammatory joint disease do not meet the recommendations of regular physical activity. Both sociodemographic and clinical parameters were associated with engagement in physical activity, and fatigue especially seems to play a pivotal role in explaining suboptimal physical activity behaviour in this patient group.

Feasibility and acceptability of active book clubs in cancer survivors - an explorative investigation.

BACKGROUND: While the increasing number of people surviving cancer is promising, the long-term health effects warrant broad, innovative interventions. We investigated the feasibility and acceptability of a 24-week intervention called 'Active Book Club' comprising audio book listening, pedometer walking and supervised book club meetings. MATERIAL AND METHODS: An exploratory and descriptive design was applied. Qualitative data included baseline and post-intervention focus group interviews as well as post-intervention individual interviews. The study also included data on retention, attendance, and adherence. Seventeen self-referred cancer survivors with various oncological and sociodemographic backgrounds were included. RESULTS: Eight (47%) participants completed the entire intervention. Their median attendance at the book club meetings was eight [interquartile range (IQR) 6-9] of nine possible, and they reached the walking step goal in a median of 11 (IQR 7-12) of the first 12 weeks, and seven (IQR 1-10) of the last 12 weeks. The qualitative analysis revealed five themes including: Motivation and expectations (i.e. reasons for enrollment), Attentive listening (i.e. experiences of the audio book format), Affected by the story (i.e. experiences of the content of the books), Group involvement (i.e. experiences of the book club meetings) and Walking regularly (i.e. experiences of the walking program). Overall, findings revealed that while audio books may bring new meaning to physical activity and serve as a relief from own concerns, certain stories may affect some individuals negatively. The substantial dropout rate, however, suggested that modification is necessary and that patient involvement in choice of literature may be critical to enhance acceptability. CONCLUSION: The 'Active Book Club' represents a novel psychosocial intervention potentially supporting physical activity adoption and mental health in cancer survivors. However, several issues related to feasibility and acceptability including choice of literature genre, format and supervision of book club meetings need to be considered before larger scale clinical trials are initiated.

The impact of self-efficacy on physical activity maintenance in patients with hip osteoarthritis - a mixed methods study.

PURPOSE: Understanding motivational factors related to physical activity (PA) maintenance is essential in promoting long-term exercise benefits. This study explored the impact of self-efficacy (SE) on post-intervention PA maintenance in patients with hip osteoarthritis. METHOD: An SE-theory based mixed-methods sub-study of a trial investigating the effects of 4 months supervised exercise in patients with hip osteoarthritis. Questionnaire data (n = 52; baseline and 12 months) on PA and SE (Arthritis Self-Efficacy Scale, ASES, score-range 10-100) were analysed (Mann-Whitney test) for differences in characteristics of maintainers and non-maintainers. Semi-structured individual interviews (n = 15; at 12-months follow-up) were analysed using directed content analysis. RESULTS: Compared to non-maintainers (n = 9; 17%) maintainers (n = 31; 60%) had improved (p < 0.01) in median scores of ASES (Pain: +12 versus -32 points; Function: +7 versus -9 points; Other Symptoms: +11 versus -26 points) from baseline to 12 months. Experiences of possessing required skills, inspiration by other participants, encouragement from physical therapists and altered interpretations of PA-induced physiological conditions contributed to increased SE and PA maintenance. Moreover, experienced symptoms, exercise outcome expectations and obligation towards the study influenced maintenance. CONCLUSION: SE contributes to understanding of post-intervention PA maintenance in patients with hip osteoarthritis. However, disease-related factors and clinical trial participation appears significant too. Implications for Rehabilitation Patients' perceived self-efficacy for physical activity contributes to the understanding of post-intervention physical activity maintenance in patients with hip osteoarthritis. Practitioners may benefit from incorporating the self-efficacy theory in the planning and execution of exercise interventions to promote post-intervention physical activity maintenance and long term health benefits. Post-intervention physical activity maintenance may be increased by focussing on the patients' exercise self-efficacy through verbal persuasion and support, disease-specific information and information on normal physiological responses to exercise combined with an individualised training progression to support experiences of success and achievement of desired outcomes.

Cancer survivors' experience of exercise-based cancer rehabilitation - a meta-synthesis of qualitative research.

BACKGROUND: Evidence for the safety and benefits of exercise training as a therapeutic and rehabilitative intervention for cancer survivors is accumulating. However, whereas the evidence for the efficacy of exercise training has been established in several meta-analyses, synthesis of qualitative research is lacking. In order to extend healthcare professionals' understanding of the meaningfulness of exercise in cancer survivorship care, this paper aims to identify, appraise and synthesize qualitative studies on cancer survivors' experience of participation in exercise-based rehabilitation. MATERIAL AND METHODS: Five electronic databases (PubMed, PsychINFO, EMBASE, Cinahl and Scopus) were searched systematically for articles published up to May 2014 using keywords and MeSH terms. To be included, studies had to contain primary data pertaining to patient experiences from participation in supervised, structured moderate to vigorous-intensity exercise. RESULTS: In total 2447 abstracts were screened and 37 papers were read in full. Of these, 19 studies (n = 390) were selected for inclusion and critically appraised. Synthesis of data extracted from eight studies including in total 174 patients (77% women, age 28-76 years) exclusively reporting experiences of participation in structured, supervised exercise training resulted in nine themes condensed into three categories: 1) emergence of continuity; 2) preservation of health; and 3) reclaiming the body reflecting the benefits of exercise-based rehabilitation according to cancer survivors. Accordingly, the potential of rebuilding structure in everyday life, creating a normal context and enabling the individual to re-establish confidentiality and trust in their own body and physical potential constitute substantial qualities fundamental to the understanding of the meaningfulness of exercise-based rehabilitation from the perspective of patients. CONCLUSIONS: In addition to the accumulating evidence for the efficacy of exercise training in cancer rehabilitation, it is incumbent upon clinicians and policy-makers to acknowledge and promote the meaningfulness of exercise for the individual, and to use this knowledge to provide new solutions to current problems related to recruitment of underserved populations, long-term adherence and implementation.

Danish emergency nurses' attitudes towards self-harm ­ a cross-sectional study.

AIM: The aim of this study was to examine Danish emergency nurses' attitudes toward people hospitalized after an acetaminophen poisoning. Furthermore, the study examined the relationship between attitudes and factors such as age, gender, and education on self-harm. METHODS: A cross-sectional design was applied. Nurses from seven emergency departments (EDs) in a region in Denmark were asked to complete the Danish version of Attitudes towards Deliberate Self-Harm Questionnaire (ADSHQ). RESULTS: Of the 254 eligible nurses working in the ED, 122 returned the questionnaires, leaving the response rate at 48%. Results show that the emergency nurses generally held positive attitudes toward patients with acetaminophen poisoning. Nurses with longer ED experience held more positive attitudes, and women scored significantly higher than men on the whole scale. Only 19% of the respondents had received education on self-harm, and this education seems to produce more positive attitudes and a greater self-efficacy in relation to managing the patient group. CONCLUSION: Nurses working in the ED generally hold positive attitudes toward patients with acetaminophen poisoning. It is suggested that education on self-harm is a worthwhile endeavor with the potential to strengthen and improve attitudes, for the benefit of both the nurses and the patients.