Conectar
Healthcare consumers require diverse resources to assist their navigation of complex healthcare interactions, however, these resources need to be fit for purpose.
In this study, we evaluated the utility, usability and feasibility of children, families and adults requiring long-term intravenous therapy using a recently developed mobile health application (App), intravenous (IV) Passport.
Multi-site, parallel, multi-method, prospective cohort study.
A multi-site, multi-method study was carried out in 2020–2021, with 46 participants (20 adults, 26 children/family) reporting on their experiences surrounding the use of the IV Passport for up to 6 months.
Overall, utility rates were acceptable, with 78.3% (N = 36) using the IV Passport over the follow-up period, with high rates of planned future use for those still active in the project (N = 21; 73%), especially in the child/family cohort (N = 13; 100%). Acceptability rates were high (9/10; IQR 6.5–10), with the IV Passport primarily used for documenting new devices and complications. Thematic analysis revealed three main themes (and multiple subthemes) in the qualitative data: Advocacy for healthcare needs, Complexity of healthcare and App design and functionality.
Several recommendations were made to improve the end-user experience including ‘how to’ instructions; and scheduling functionality for routine care.
The IV Passport can be safely and appropriately integrated into healthcare, to support consumers.
Patient-/parent-reported feedback suggests the Intravenous Passport is a useful tool for record-keeping, and positive communication between patients/parents, and clinicians.
Not applicable.
Consumers reported their experiences surrounding the use of the IV Passport for up to 6 months.
by Chorong Park, Britta Larsen, Simona C. Kwon, Yuhe Xia, Marianna LaNoue, Victoria V. Dickson, Harmony R. Reynolds, Tanya M. Spruill
The 24-hour day consists of physical activity (PA), sedentary behavior, and sleep, and changing the time spent on one activity affects the others. Little is known about the impact of such changes on cardiovascular risk, particularly in Asian American immigrant (AAI) women, who not only have a higher cardiovascular risk but also place greater cultural value on family and domestic responsibilities compared to other racial/ethnic groups. The purpose of this study was to evaluate the effects of reallocating 30 minutes of each 24-hour activity component for another on BMI, waist circumference, and blood pressure in AAI women. Seventy-five AAI women completed 7 days of hip and wrist actigraphy monitoring and were included in the analysis (age = 61.5±8.0 years, BMI = 25.5±3.6 kg/m2, waist circumference = 85.9±10.2 cm). Sleep was identified from wrist actigraphy data, and moderate-to-vigorous PA (MVPA), light PA, and sedentary behavior identified from hip actigraphy data. On average, the women spent 0.5 hours in MVPA, 6.2 hours in light PA, 10 hours in sedentary activities, and 5.3 hours sleeping within a 24-hour day. According to the isotemporal substitution models, replacing 30 minutes of sedentary behavior with MVPA reduced BMI by 1.4 kg/m2 and waist circumference by 4.0 cm. Replacing that same sedentary time with sleep reduced BMI by 0.5 kg/m2 and waist circumference by 1.4 cm. Replacing 30 minutes of light PA with MVPA decreased BMI by 1.6 kg/m2 and waist circumference by 4.3 cm. Replacing 30 minutes of light PA with sleep also reduced BMI by 0.8 kg/m2 and waist circumference by 1.7 cm. However, none of the behavioral substitutions affected blood pressure. Considering AAI women’s short sleep duration, replacing their sedentary time with sleep might be a feasible strategy to reduce their BMI and waist circumference.To explore how long-term and late effects of paediatric brain tumours influence the everyday lives of survivors at various ages and their parents.
A qualitative interview study using reflexive thematic analysis.
We conducted individual interviews and focus groups with 14 paediatric brain tumour survivors aged 9–52 years and 16 parents, which were audiorecorded and transcribed. We inductively analyzed the data using Braun and Clarke's reflexive thematic analysis. Inductively derived themes were then mapped onto the components of the International Classification of Functioning, Disability and Health framework to examine the survivors' everyday functioning.
All survivors experienced ongoing long-term and late effects but with considerable variations in how these restricted the survivors' functioning and thus their ability to participate in everyday life activities (e.g. social, educational and work activities). All survivors expressed an explicit focus on and use of different strategies to manage their perceived functional limitations and participation restrictions. Many survivors expressed discrepancies between their own goals, expectations and actual abilities post-cancer; making them very aware of their limitations. In addition, many survivors and parents experienced ongoing concerns about the survivors’ future, including the risk of late effects, relapse or other complications.
A wide range of long-term and late effects continue to affect the survivors and their parents' functioning and everyday lives. Their ongoing needs emphasize the importance of comprehensive, life-long follow-up care, as recommended.
The complex challenges across the biopsychosocial realms faced by the survivors supports the call for multidisciplinary survivorship care. Nurses are well positioned to lead such care, as they are trained to provide holistic care and thereby support survivors' functioning and activity participation in everyday life.
We used the COREQ guidelines when reporting the study.
Two user representatives (one young adult PBT survivor and one mother of a PBT survivor) ensured the relevance and quality of the semi-structured interview guides prior to the interviews with the survivors and parents. The guides were sent to the user representatives by mail, and they provided their written feedback by mail to the first author.
by Agnieszka Konieczna, Christina Petrea Larsen, Sarah Grube Jakobsen, Taro Okuda, Karin Moriyama, Winibaldus Stefanus Mere, Erik Christiansen
Suicide is a major public health problem and complex phenomenon, affecting many people around the world. However, the incidence of suicide varies by sex and age, which includes differences in the means used. Therefore, to implement effective preventative interventions, it is important to study these differences to design effective, preventative interventions. This study investigates the trends in suicide rates in Denmark from 1995 to 2019 by analysing changes based on sex, age, and the means used for suicide. Data on all suicide deaths in the study period were extracted from the Danish Register of Causes of Death, and data on the background population were obtained from Statistics Denmark. We used negative binomial regression models to analyse the data, and the obtained estimates as a logarithm of the rate ratios allowed us to compare the results across groups and years. An overall decline in Danish suicide rates was observed during the study period, with the exception of young females aged 15–29 years. The demographic composition did not change significantly, and suicide rates are still highest for males and the elderly aged 60+. Hanging, self-poisoning and firearms remain the most prevalent means of suicide. Suicide prevention initiatives are required, especially interventions targeting males and the elderly. Restricting access to the means of suicide for these groups with high fatality rates may help reduce the overall suicide rate. Moreover, more research is needed to understand the factors that lead to suicide and affect the choice of means, which should also include studying the effects of different suicide prevention strategies on males and females from different age groups.To synthesise qualitative literature on (1) the perceptions of patients with cancer of participating in an exercise intervention while undergoing chemotherapy and (2) to inform and guide professionals in oncology and haematology practice.
A qualitative meta-synthesis based on Noblit and Hare’s seven-step meta-ethnography.
Six electronic databases: Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL, EMBASE, PubMed, SCI-Expanded—SSCI and Scopus (final search June 2022) were used to identify qualitative literature containing individual or focus group interviews. The transparency of reporting for each study was assessed using the Consolidated criteria for Reporting Qualitative research checklist.
The search identified 5002 articles, 107 of which were selected for full-text review. Seventeen articles from five countries with patients undergoing chemotherapy during exercise interventions were included. Eleven articles were included in the meta-synthesis, which comprised 193 patients with various cancer diagnoses, disease stages, sexes and ages. Four main themes were identified: chemotherapy overpowers the body; exercise in battle with side effects; a break from gloomy thoughts; and a question of survivorship.
The meta-synthesis emphasised that patients with cancer undergoing chemotherapy and simultaneously participating in exercise interventions may experience momentary relief from overwhelming side effects, even though full bodily recovery may be perceived as a distant prospect. The synthesis offers a sparse empirical basis for gaining insight into what patients experience existentially following exercise interventions. It is up to patients to independently apply the transfer value of exercise to their own existential circumstances.
To explore the potential of a structured active play intervention to promote social and personal development in preschoolers during cancer treatment.
A hermeneutic-phenomenological inspired explorative study.
Participant observations were conducted on 15 consecutively sampled children (aged 1–5 years) from April 2021 to April 2022. Observations were written as narrative scenic descriptions from field notes and were analysed inspired by hermeneutic-phenomenological analysis and using a thematic analysis structure.
Observations were carried out during 67 group or individual structured active play sessions, resulting in 129 scenic descriptions. Observations of the children's emotional, verbal and bodily expressions and social interactions resulted in three main themes: (1) wanting to play, (2) gaining confidence in movement and (3) being part of a group. The findings showed how children, irrespective of age and the severity of their illness, wanted to play and expressed joy of movement. The children's daily physical state fluctuated and influenced their motivation to participate as well as their confidence in their physical abilities. Through structured active play and with support from their parents and healthcare professionals, the children had successful movement experiences and regained confidence in movement, supporting their personal development. Playing together with other children and accompanied by their parents, healthcare professionals supported the children's opportunities to practice social skills, such as turn-taking, waiting and taking charge. Familiarity, recognizability and fun were key motivational components for the children.
Participating in structured active play during treatment has the potential to promote personal and social development in preschoolers with cancer. Parents play a crucial role in supporting the participation of their children.
The healthcare system and healthcare professionals should provide opportunities for preschoolers with cancer and other illnesses to participate in structured active play.
What problem did the study address? Cancer treatment affects the development of preschoolers’ gross motor-, personal and social skills—essential skills in childhood development. This study aimed to explore the potential for social and personal development through structured active play. What were the main findings? This study found that preschoolers want to play, and participating in structured active play can support their personal and social development through regained confidence in movement and becoming part of a group. Where and on whom will the research have an impact? The research impacts healthcare professionals working with preschoolers in the healthcare system. Creating opportunities for preschoolers to participate in structured active play throughout treatment can promote personal and social development.
The study adheres to relevant EQUATOR guidelines and is reported according to the Standards for Reporting Qualitative Research (SRQR) checklist.
Participants in this study were preschoolers with cancer and their parents. No public or patient involvement in the design of this study.
ClinicalTrials.gov: NCT04672681. Registered on December 17, 2020. https://clinicaltrials.gov/ct2/show/NCT04672681.
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