Exploring public perceptions and understanding of dementia: Analysing narratives from the Mass Observation Project.

Over 850,000 people living in the United Kingdom have been diagnosed with dementia, yet knowledge about this condition amongst the general population remains relatively poor. Many studies have evaluated the level of public knowledge and understanding about dementia from a research and professional service perspective; however, none have considered this condition from the perspective of the wider public. In this preliminary overview, we analyse and describe high-level narratives collected from 143 respondents to a Dementia Directive commissioned to the Mass Observation Project. These narratives present a perspective on the public knowledge and understanding about dementia not previously considered, where respondents have written openly about their own experiences, and reflected on their perception of the wider public's knowledge and understanding about dementia. This unique perspective importantly enhances our knowledge about the public's understanding and awareness of dementia, and informs the main areas of public concern found in the analysis: care responsibilities, impact on relationships, and fears about developing dementia.

A biopsychosocial-spiritual model of chronic pain in adults with sickle cell disease.

Chronic pain in adults with sickle cell disease (SCD) is a complex multidimensional experience that includes biologic, psychologic, sociologic, and spiritual factors. To date, three models of pain associated with SCD (i.e., biomedical model, biopsychosocial model for SCD pain, and Health Beliefs Model) have been published. The biopsychosocial multidimensional approach to chronic pain developed by Turk and Gatchel is a widely used model of chronic pain. However, this model has not been applied to chronic pain associated with SCD. In addition, a spiritual/religious dimension is not included in this model. Because spirituality/religion is central to persons affected by SCD, that dimension needs to be added to any model of chronic pain in adults with SCD. In fact, data from one study suggest that spirituality/religiosity is associated with decreased pain intensity in adults with chronic pain from SCD. A biopsychosocial-spiritual model is proposed for adults with chronic pain from SCD, because it embraces the whole person. This model includes the biologic, psychologic, sociologic, and spiritual factors relevant to adults with SCD based on past and current research. The purpose of this paper is to describe an adaptation of Turk and Gatchel's model of chronic pain for adults with SCD and to summarize research findings that support each component of the revised model (i.e., biologic, psychologic, sociologic, spiritual). The paper concludes with a discussion of implications for the use of this model in research.

A review of the literature on the multiple dimensions of chronic pain in adults with sickle cell disease.

Sickle cell disease (SCD) is a major health care and societal problem that affects millions of people worldwide. In Nigeria, 45,000 to 90,000 babies are born each year with SCD. In the United States, SCD is the most common genetic disorder, affecting more than 80,000 people, the majority of whom are African American. Sickle cell pain is the hallmark feature of SCD. Most of the research on pain from SCD has focused on children with acute pain associated with sickle cell crisis. Consequently, very little is known about the occurrence and characteristics of chronic pain, especially in adults with SCD. Individuals with SCD who experience chronic pain are often underserved, and their pain is undertreated. This undertreatment may result in millions of dollars per year spent on emergency room visits, hospitalizations, and lost work productivity. The primary purpose of this literature review was to summarize the findings from studies that evaluated the characteristics of chronic pain in adults with SCD. Each of the studies included in this review was evaluated to determine if it provided data on the following multidimensional characteristics of chronic pain: occurrence, number of pain episodes, duration, pattern, quality, location, intensity, aggravating factors, relieving factors, and impact of pain on function. A secondary purpose was to identify gaps in knowledge and directions for future research on the multiple dimensions of chronic pain in adults with SCD.