Pain and quality of life in persons with spinal cord injury: Mediating effects of mindfulness, self-efficacy, social support, and functional independence.

OBJECTIVE: To identify mediating roles of mindfulness, self-efficacy, social support, and functional independence in the relationship between pain and quality of life (QOL) in persons with spinal cord injury (SCI). METHODS: A cross-sectional descriptive study was conducted using a sample of 272 persons with SCI living in the United States. The participants completed self-report standardized questionnaires on a Qualtrics survey. A parallel mediation analysis adjusting for covariates was performed to test the hypotheses. RESULTS: Findings showed significant direct effects of pain on functional independence, self-efficacy, mindfulness, and social support. Self-efficacy, mindfulness, and social support had significant direct effects on QOL. In the mediation analysis, mindfulness, self-efficacy, and social support significantly mediated the relationship between pain and QOL, controlling for other variables in the model. CONCLUSIONS: This study adds to the extant literature by providing evidence that mindfulness, self-efficacy, and social support not only directly contribute to QOL but are likely to mitigate the negative effect of pain on QOL in persons with SCI. Identifying these potential factors that can assuage the adverse effects of pain on QOL is a first step toward active intervention to facilitate the adjustment of persons with SCI.

Staying hidden: The burden of stigma in PD.

BACKGROUND: Despite the myriad motor and non-motor challenges associated with Parkinson's disease (PD) diagnosis, the hidden issue of stigma may be among the most influential factors negatively affecting quality of life. A number of qualitative studies have been published assessing various aspects of stigma in PD, and quantitative studies assert that most people with PD experience stigma during the course of their disease. Stigma is associated with poorer mental and physical health, poorer quality of life, decreased levels of hope, self-esteem and self-efficacy. The resulting stigma can lead to social anxiety and isolation, reluctance to seek medical care, loneliness, depression and anxiety. Therefore, understanding what stigma is, where it comes from, and how it affects people living with PD may offer clinicians and care partners tools to help mitigate the negative effects. FOCUS: Over the past few decades, we have seen a move away from simply focusing on the effects of a disease (medical model) toward a holistic biopsychosocial approach that considers the role of environmental factors (stigma) when assessing overall well-being. We review some proactive practical suggestions to help people living with PD effectively combat the negative effects of stigma. CONCLUSION: The additional hidden burden of stigma from PD affects quality of life. Having a better understanding of the role of stigma and its impact may allow clinicians to provide proactive care and greater empathy for those living with the challenges of this disease.

A Prescription for Wellness in Early PD: Just What the Doctor Ordered.

BACKGROUND: Being diagnosed with a neurodegenerative disease is a life-changing event and a critical time to help patients cope and move forward in a proactive way. Historically, the main focus of Parkinson's disease (PD) treatment has been on the motor features with limited attention given to non-motor and mental health sequelae, which have the most impact on quality of life. Although depression and anxiety have been described at the time of PD diagnosis, demoralization, intolerance of uncertainty, decreased self-efficacy, stigma and loneliness can also present and have negative effects on the trajectory of the disease. Hence, understanding the psychological impact of the diagnosis and how to provide better counselling at this critical time point may be the key to a better long-term trajectory and quality of life. FOCUS: There has been a paradigm shift in the treatment of chronic illness moving beyond the medical model, which focuses on fighting illness with the physician being in charge of the treatment process and the patient being the passive recipient, toward a more holistic (i.e., physical, psychological, social, and spiritual health) biopsychosocial approach that emphasizes behavioral factors with the patient being an active collaborator in their treatment. Hence, we propose that fostering resilience, social support, and psychological flexibility offer promise toward attenuating negative reactions and improving overall well-being. CONCLUSION: Through a proactive wellness approach incorporating lifestyle choices, people with PD (PwP) can not only achieve improved states of health, well-being, and quality of life, but actually thrive.