“I'm Taking Charge of My Arthritis”: Designing a Targeted Self-Management Program for Frail Seniors

Abstract Background Chronic diseases are responsible for over 70% of all deaths globally. While some self-management programs have been shown to be efficacious in preventing or altering trajectories for some chronic conditions, scaling-up and sustaining such programs beyond tightly-controlled study conditions remain a major challenge. CISSS-Laval partnered with the Cardiovascular Health Awareness Program team to co-develop Cible-santé/prévention and evaluate the first cohort of participants enrolled in the program, in order to better understand the program’s implementation and scope. The objective of the current study was to describe the profile of attendees and the level of engagement of participants in a new, region-wide cardiometabolic disease self-management program offered in Laval, Canada. Methods This was a prospective study with no comparison group. Potential participants were identified and referred to the program from April to December 2015 by their primary care health professional practicing in one of the city’s interdisciplinary primary care clinics. They had their blood pressure, waist circumference and body mass index measured by trained volunteers, and completed a questionnaire on health habits, level of activation and the risk of developing prediabetes and type 2 diabetes over the next 10 years. Results A descriptive analysis of the first cohort of 141 Cible-Santé/prévention participants showed very low attendance. Furthermore, only 1 in 10 of enrolled participants completed the full program. The program typically attracted adults with some risk factors associated with their conditions (high waist circumference, obesity), but with an already high level of knowledge, skills and confidence to participate in self-management activities. Conclusion This study provides a portrait of new participants to a self-management cardiometabolic disease program, which highlights the potential of supporting patients ready to make changes but also exposes the difficulty of attracting a larger number and diversity of participants and in encouraging completion of the program.

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Perspectives on mental health among patients receiving dialysis

Nephrology Dialysis Transplantation ◽

10.1093/ndt/gfaa346 ◽

2020 ◽

Author(s):

Melissa Nataatmadja ◽

Nicole Evangelidis ◽

Karine E Manera ◽

Yeoungjee Cho ◽

David W Johnson ◽

...

Keyword(s):

Mental Health ◽

Symptom Burden ◽

Self Management ◽

Health Practitioners ◽

Taking Charge ◽

Mental Health Support ◽

Health Support ◽

Mental Wellness ◽

Uncertain Future ◽

Using Data

Abstract Background Diminished mental health is associated with increased morbidity and mortality and may contribute to loss of independence and motivation in patients receiving dialysis and their caregivers. Increased understanding of the patient perspective on triggers, impacts and strategies for managing mental health may inform ways to address mental health conditions in this population. Methods A secondary thematic analysis was undertaken using data from the Standardized Outcomes in Nephrology (SONG)-Hemodialysis and SONG-Peritoneal Dialysis projects. We extracted and analysed data on the perceived causes, meaning, impact and management of mental health in patients receiving dialysis from 26 focus groups (in six countries), multinational Delphi surveys and consensus workshops. Results A total of 644 patients and caregivers participated. We identified five themes: bound to dialysis (forced into isolation, enslaved to a machine, stress of relentless planning and grieving the loss of a normal life), underrecognized and ignored (missed by health practitioners, need for mental health support), an uncertain future (dreading complications, coming to terms with mortality), developing self-reliance (vulnerability in being solely responsible for dialysis, sustaining motivation for dialysis, necessity for self-vigilance and taking charge to regulate emotions) and responding to a lifestyle overhaul (guilt of burdening family, controlling symptoms for overall mental wellness, protecting independence and trying to feel grateful). Conclusions Patients receiving dialysis and their caregivers endure mental and emotional distress attributed to the burden of dialysis, lifestyle restrictions, the constant threat of death and symptom burden, which can impair motivation for self-management. Increased attention to monitoring and management of mental health in this population is needed.

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