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To analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their experiences for medical providers of patients with GBM.
A qualitative study using reflexive thematic analysis of letters written by female spouses/life partners and primary caregivers of patients with GBM.
101 current or former female spouse primary caregivers of patients with GBM wrote letters to share with the medical community between July 2019 and August 2019. Inclusion criteria: (1) the primary caregiver who is a spouse of a patient with glioblastoma, (2) be a member of the secret Facebook group, ‘We are the wives of GBM and this is our story’, and (3) completed informed consent for the contents of their letter to be included for primary and secondary data analysis. Participants who wrote letters but did not complete the informed consent were excluded from the study.
Themes from the letters included the patient experiences: (1) medical details of the disease trajectory, (2) interactions of the patient/caregiver dyads with healthcare and (3) the changing patient condition over time. Themes focused on the caregiver experiences: (1) caregiver challenges, (2) caregiver responses and (3) caregiver coping strategies, and description of tangible needs that would help other caregivers in the future. Caregiver needs were highest during the living with disease progression phase. Caregivers wanted more education and to be valued as members of the care team.
Shared decision-making through family-centred care would be beneficial for primary caregivers of patients with GBM. These findings provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers.
Long-term chikungunya disease is characterised by persistent rheumatic symptoms following chikungunya virus infection. As there is no specific treatment available, affected individuals need strategies to adapt. However, research on these is scarce. This study aimed to explore which adaptive coping strategies are employed to manage persistent rheumatic symptoms in daily life.
The study was conducted in Curacao.
An explorative qualitative study was conducted between September and October 2020, among a purposive sample of adults, 19 women and 4 men affected by long-term chikungunya disease. In-depth interviews were semi-structured and transcribed verbatim. The data were analysed using inductive thematic analysis.
The disease duration for all participants ranged between 68 and 74 months (6 years). In narrating their experiences of coping with long-term chikungunya disease, four themes were identified: (1) learning to live with the disease; (2) resilience for dealing with pain; (3) maintaining positive self-image and attitude; and (4) coping through spirituality.
To live with long-term chikungunya disease with dignity in spite of physical pain and discomfort, participants tried to retain a sense of control of oneself and one’s lives, to not let the disease take over, focusing on the positive in their lives, and finding strength and remain hopeful. Interventions such as cognitive–behavioural therapy and mindfulness exercises may be effective in strengthening or regain affected individual’s sense of competence and control by fostering adaptive coping skills and resilience. Subsequently, these interventions may improve health-related quality of life when rheumatic symptoms persist following chikungunya virus infection.
by Tinne Gils, Mashaete Kamele, Thandanani Madonsela, Shannon Bosman, Thulani Ngubane, Philip Joseph, Klaus Reither, Moniek Bresser, Erika Vlieghe, Tom Decroo, Irene Ayakaka, Lutgarde Lynen, Alastair Van Heerden
During TB-case finding, we assessed the feasibility of implementing the advanced HIV disease (AHD) care package, including VISITECT CD4 Advanced Disease (VISITECT), a semiquantitative test to identify a CD4≤200cells/μl. Adult participants with tuberculosis symptoms, recruited near-facility in Lesotho and South-Africa between 2021–2022, were offered HIV testing (capillary blood), Xpert MTB/RIF and Ultra, and MGIT culture (sputum). People living with HIV (PLHIV) were offered VISITECT (venous blood) and Alere tuberculosis-lipoarabinomannan (AlereLAM, urine) testing. AHD was defined as a CD4≤200cells/μl on VISITECT or a positive tuberculosis test. A CD4≤200cells/μl on VISITECT triggered Immy cryptococcal antigen (Immy CrAg, plasma) testing. Participants were referred with test results. To evaluate feasibility, we assessed i) acceptability and ii) intervention delivery of point-of-care diagnostics among study staff using questionnaires and group discussions, iii) process compliance, and iv) early effectiveness (12-week survival and treatment status) in PLHIV. Predictors for 12-week survival were assessed with logistic regression. Thematic content analysis and triangulation were performed. Among PLHIV (N = 676, 48.6% of 1392 participants), 7.8% were newly diagnosed, 81.8% on ART, and 10.4% knew their HIV status but were not on ART. Among 676 PLHIV, 41.7% had AHD, 29.9% a CD4≤200cells/μl and 20.6% a tuberculosis diagnosis. Among 200 PLHIV tested with Immy CrAg, 4.0% were positive. The procedures were acceptable for study staff, despite intervention delivery challenges related to supply and the long procedural duration (median: 73 minutes). At 12 weeks, among 276 PLHIV with AHD and 328 without, 3.3% and 0.9% had died, 84.8% and 92.1% were alive and 12.0% and 7.0% had an unknown status, respectively. Neither AHD nor tuberculosis status were associated with survival. Implementing AHD care package diagnostics was feasible during tuberculosis-case finding. AHD was prevalent, and not associated with survival, which is likely explained by the low specificity of VISITECT. Challenges with CD4 testing and preventive treatment uptake require addressing.There is an urgent need for scalable strategies for treating overweight and obesity in clinical settings. PROPS 2.0 (Partnerships for Reducing Overweight and Obesity with Patient-Centered Strategies 2.0) aims to adapt and implement the combined intervention from the PROPS Study at scale, in a diverse cross-section of patients and providers.
We are implementing PROPS 2.0 across a variety of clinics at Brigham and Women’s Hospital, targeting enrolment of 5000 patients. Providers can refer patients or patients can self-refer. Eligible patients must be ≥20 years old and have a body mass index (BMI) of ≥30 kg/m2 or a BMI of 25–29.9 kg/m2 plus another cardiovascular risk factor or obesity-related condition. After enrolment, patients register for the RestoreHealth online programme/app (HealthFleet Inc.) and participate for 12 months. Patients can engage with the programme and receive personalized feedback from a coach. Patient navigators help to enrol patients, enter updates in the electronic health record, and refer patients to additional resources. The RE-AIM (Reach, Effectiveness, Adoption, Implementation, and Maintenance) framework is guiding the evaluation.
The Mass General Brigham Human Research Committee approved this protocol. An implementation guide will be created and disseminated, to help other sites adopt the intervention in the future.
by Lars M. Tingelstad, Truls Raastad, Kevin Till, Live S. Luteberget
BackgroundPhysical development during adolescence is crucial for athletes in team sports, as it prepares them for the high sport demands at the senior level. While physical development in non-athletes are well-documented, a comprehensive understanding of adolescent athletes’ development, including the potential effects of team sports participation and training load, is lacking.
ObjectivesThe study aimed to investigate the development of physical characteristics in team sport athletes during adolescence (12–20 years) and explore the impact of training load.
MethodsA systematic search of the databases PubMed, SPORTDiscus and Web of Science were conducted combining keywords related to physical characteristics, youth athletes, team sport and study design. Criteria for inclusion were: (1) team sport athletes aged 12–20 years, (2) cross-sectional or longitudinal designs investigating physical characteristics, (3) comparisons across different age groups, (4) peer-reviewed original article, (5) written in English, and (6) available results from physical testing. Results were normalized and weighted based on sample size.
Results176 eligible articles were identified. The results showed consistent annual improvement in most physical characteristics from 12 to 16 years for both sexes (e.g., boys: lower body strength 14.3%; intermittent endurance 11%; countermovement jump height 6.7%; change of direction 2.8%; 30 m sprint 3.6%, and girls: lower body strength 9.4%; intermittent endurance 12.1%; countermovement jump 4.7%; change of direction 3.3%; 30 m sprint 1.9%). Only 4 studies investigated the effect of training load on physical development.
ConclusionsAlthough both sexes consistently improved through adolescence, girls tended to have less pronounced physical development compared to boys, likely due to lower increase in lean mass and limb length. The existing evidence do not definitively establish whether team sports participation, compared to studies examining non-athletes, or training load have an additive effect on physical development during this period.
To examine the relationship between mental health continuum and care dependence of hospitalized patients, who were diagnosed with chronic obstructive pulmonary disease (COPD).
Descriptive, cross-sectional study.
The data were obtained from 448 inpatients diagnosed with COPD, who were treated in clinics, by utilizing questionnaires and face-to-face interviews between November 2021 and February 2022. The Mental Health Continuum Short Form and Care Dependency Scale were used by the researchers with the sociodemographic and clinical characteristics form created in line with the literature. The data were analysed using the SPSS 23.0 software.
It was determined that a moderately significant positive relationship between mental health continuum and care dependency. In addition, the patient's perception of own health, disease stage and severity of dyspnoea were also found to be associated with mental health and care dependency. Gender, marital status, employment status and income level were found to be associated with mental health continuum, but not with care dependency. Advanced age, low educational level, alcohol consumption, antidepressant use and comorbidities were found to be associated with both care dependency and mental health continuum.
Individuals with COPD who have low mental health, poor health perception, high disease stage and dyspnoea severity have high care dependency.
In this study, it was revealed that the level of mental health continuum was significantly associated with care dependency in individuals with COPD; in addition, the individual's perception of poor health, disease stage and dyspnoea severity were other factors associated with care dependency. It is important for nurses working with individuals with COPD to evaluate the mental health of individuals with poor health perception, high disease stage and dyspnoea severity and to plan appropriate interventions to reduce care dependency.
No patient or public contribution was required in the design, conduct, analysis or interpretation of this study. Patients/public members only contributed to data collection. Data were obtained from patients hospitalized in the chest diseases clinic of a training and research hospital.
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