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Patient and caregiver involvement can enhance the uptake and impact of research, but the involvement of patients and caregivers who are underserved and marginalized is often limited. A better understanding of how to make involvement in research more broadly accessible, supportive, and inclusive for patients with chronic kidney disease (CKD) and caregivers is needed. We conducted a national workshop involving patients, caregivers, clinicians, and researchers from across Australia to identify strategies to increase the diversity of patients and caregivers involved in CKD research. Six themes were identified. Building trust and a sense of safety was considered pivotal to establishing meaningful relationships to support knowledge exchange. Establishing community and connectedness was expected to generate a sense of belonging to motivate involvement. Balancing stakeholder goals, expectations, and responsibilities involved demonstrating commitment and transparency by researchers. Providing adequate resources and support included strategies to minimize the burden of involvement for patients and caregivers. Making research accessible and relatable was about nurturing patient and caregiver interest by appealing to intrinsic motivators. Adapting to patient and caregiver needs and preferences required tailoring the approach for individuals and the target community. Strategies and actions to support these themes may support more diverse and equitable involvement of patients and caregivers in research in CKD.
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BACKGROUND: Cross-sectional studies show associations between loneliness, social isolation and physical inactivity. Cohort studies are shedding light on these relationships and further longitudinal investigations are needed. PURPOSE: This study aimed to assess the longitudinal and bidirectional associations between loneliness, social isolation, and physical inactivity. METHODS: Data were drawn from five annual waves of the Household and Labour Dynamics of Australia Survey (2015-2019), providing a sample of 17,303 persons (mean age = 46.3 years [SD = 18.0], 49.4% female). Relationships between loneliness, social isolation, and physical inactivity were examined using cross-lagged panel modeling, with estimation of simultaneous cross-lagged effects across each wave. Models adjusted for sociodemographic factors, chronic disease status, psychological distress, and mutually for social isolation or loneliness. Moderation of associations by sex was explored. RESULTS: There were modest lagged effects of physical inactivity on loneliness across the survey waves (odds ratio 1.16 [95% confidence interval 1.04-1.29] to 1.20 [1.07, 1.33]). A lagged effect of physical inactivity upon social isolation was only present across three of the waves (odds ratio 1.20 [1.02-1.41] to 1.23 [1.05-1.42]). While loneliness and social isolation showed lagged effects upon physical inactivity, these did not persist with adjustment for psychological distress. CONCLUSIONS: Longitudinal analysis found that physical inactivity consistently predicted loneliness, but not social isolation. After adjustment for confounding, loneliness and social isolation were not predictive of physical inactivity. While the strength of the associations was modest, further investigation is warranted of the type and dose of physical activity that is most beneficial for reducing loneliness.
Loneliness and social isolation have been found to be risk factors for heart disease, depression, and early death. A possible way that loneliness and isolation contribute to poor health is through their effect on lifestyle behaviors. In this study, we aimed to explore the relationship between loneliness and isolation and physical inactivity. Most studies that have examined this in the past have used data from one point in time, so it has been unclear whether loneliness or isolation leads to physical inactivity (or vice versa). We used data collected over 5 years from 17,303 adults in the Household, Income and Labour Dynamics of Australia survey. After adjusting for various contributing factors in our analysis, we did not find that loneliness or social isolation in 1 year was consistently associated with physical inactivity in the following year. On the contrary, we found that being physically inactive was associated with loneliness in the following year. Physical inactivity was related to social isolation across some years, but this was less consistent. Overall, it appears that promoting physical activity will be beneficial for reducing loneliness.
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Soledad , Conducta Sedentaria , Aislamiento Social , Humanos , Soledad/psicología , Femenino , Aislamiento Social/psicología , Masculino , Australia , Persona de Mediana Edad , Adulto , Estudios Longitudinales , Renta/estadística & datos numéricos , Estudios de Cohortes , Anciano , Estudios TransversalesRESUMEN
Home dialysis offers several clinical and quality-of-life benefits for patients with kidney failure. However, it is important to recognize that home dialysis may place an increased burden on patients and their care partners. Sources of burden may include concerns about the ability to adequately and safely perform dialysis at home, physical symptoms, impairment of life participation, psychosocial challenges, and care partner burnout. Overlooking or failing to address these issues may lead to adverse events that negatively affect health and quality of life and reduce longevity of home dialysis. This study will explore aspects of home dialysis associated with burden, emphasize the need for increased awareness of potential challenges, and elaborate on strategies to overcome sources of burden. Future research should actively involve patients and care partners to better understand their motivation, experiences, and needs to better inform support strategies.
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Physical activity (PA) is important for prevention of falls and chronic disease in older adults. We aimed to examine the interrelated influences upon PA in culturally diverse older adults who completed a short-term exercise program, to inform maintenance strategies, using a mixed-methods design. Eighty-two past participants from the "Stepping On"© program were surveyed examining ongoing participation, social and cognitive determinants of PA, mental and physical functioning, and fear of falls. Semi-structured interviews were undertaken with 34 respondents regarding enablers and barriers, cultural factors, and preferences for PA. Data were collected in English, Chinese, Arabic, Punjabi, or Hindi. Cultural factors minimally affected PA participation. There was low perceived availability of PA opportunities. Health difficulties not only discouraged but also motivated participation. Social connection was a facilitator and could be used to support maintenance. Older adults may benefit from assistance in accessing PA opportunities and clinical guidance about the benefits of ongoing PA.
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Ejercicio Físico , Humanos , Anciano , Femenino , Masculino , Anciano de 80 o más Años , Accidentes por Caídas/prevención & control , Diversidad Cultural , Terapia por Ejercicio/métodos , Persona de Mediana Edad , Apoyo Social , Motivación , Encuestas y CuestionariosRESUMEN
BACKGROUND: We aimed to identify long-term patterns of sport participation (overall, team, and individual sport) from childhood into adolescence, and to examine the association between these patterns and academic outcomes. METHODS: This cohort study used data from the Longitudinal Study of Australian Children in wave 3 (4-5 y) to wave 9 (20-21 y). The participants were a nationally representative sample of 4241 children. We conducted latent class analyses to identify sport participation trajectories and assessed the association between these trajectories and academic outcomes. RESULTS: Continued sport participation was associated with lower odds of being absent from school (OR = 0.44; 95% confidence intervals [CIs], 0.26 to 0.74), better performance on attention (B = -0.010; 95% CIs, -0.019 to -0.002) and working memory (B = -0.013; 95% CIs, -0.023 to -0.003), higher numeracy (B = 20.21; 95% CIs, 14.56 to 25.86) and literacy scores (B = 9.42; 95% CIs, 2.82 to 16.02), higher end of school academic performance (B = 3.28; 95% CIs, 1.47 to 5.09), and higher odds of studying at university (OR = 1.78; 95% CIs, 1.32 to 2.40). Team sport participation was associated with reduced absenteeism, better performance on attention and working memory, and being awarded the Higher School Certificate. Whereas individual sport participation was associated with higher literacy scores and end of school academic performance. CONCLUSIONS: Team and individual sport participation both benefit academic outcomes, but differently. Given the decline in sport participation during adolescence, these findings highlight the need to develop educational policies to establish an environment that promotes sport participation, which in turn could improve academic outcomes.
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Éxito Académico , Adolescente , Niño , Humanos , Estudios Longitudinales , Estudios de Cohortes , Australia , Ejercicio FísicoRESUMEN
OBJECTIVES: Peritoneal dialysis (PD) allows patients increased autonomy and flexibility; however, both infectious and non-infectious complications may lead to technique failure, which shortens treatment longevity. Maintaining patients on PD remains a major challenge for nephrologists. This study aims to describe nephrologists' perspectives on technique survival in PD. DESIGN: Qualitative semistructured interview study. Transcripts were thematically analysed. SETTING AND PARTICIPANTS: 30 nephrologists across 11 countries including Australia, the USA, the UK, Hong Kong, Canada, Singapore, Japan, New Zealand, Thailand, Colombia and Uruguay were interviewed from April 2017 to November 2019. RESULTS: We identified four themes: defining patient suitability (confidence in capacity for self-management, ensuring clinical stability and expected resilience), building endurance (facilitating access to practical support, improving mental well-being, optimising quality of care and training to reduce risk of complications), establishing rapport through effective communications (managing expectations to enhance trust, individualising care and harnessing a multidisciplinary approach) and confronting fear and acknowledging barriers to haemodialysis (preventing crash landing to haemodialysis, facing concerns of losing independence and positive framing of haemodialysis). CONCLUSION: Nephrologists reported that technique survival in PD is influenced by patients' medical circumstances, psychological motivation and positively influenced by the education and support provided by treating clinicians and families. Strategies to enhance patients' knowledge on PD and communication with patients about technique survival in PD are needed to build trust, set patient expectations of treatment and improve the process of transition off PD.