Severe mental illness and chronic kidney disease: a cross-sectional study in the United Kingdom.

OBJECTIVE: We investigated the burden of chronic kidney disease (CKD) among patients with severe mental illness (SMI). METHODS: We identified patients with SMI among all those aged 25-74 registered in the UK Clinical Practice Research Datalink as on March 31, 2014. We compared the prevalence of CKD (two measurements of estimated glomerular filtration rate <60 mL/min/1.73 m2 for ≥3 months) and renal replacement therapy between patients with and without SMI. For patients with and without a history of lithium prescription separately, we used logistic regression to examine the association between SMI and CKD, adjusting for demographics, lifestyle characteristics, and known CKD risk factors. RESULTS: The CKD prevalence was 14.6% among patients with SMI and a history of lithium prescription (n = 4,295), 3.3% among patients with SMI and no history of lithium prescription (n = 24,101), and 2.1% among patients without SMI (n = 2,387,988; P < 0.001). The prevalence of renal replacement therapy was 0.23%, 0.15%, and 0.11%, respectively (P = 0.012). Compared to patients without SMI, the fully adjusted odds ratio for CKD was 6.49 (95% CI 5.84-7.21) for patients with SMI and a history of lithium prescription and 1.45 (95% CI 1.34-1.58) for patients with SMI and no history of lithium prescription. The higher prevalence of CKD in patients with SMI may, in part, be explained by more frequent blood testing as compared to the general population. CONCLUSION: CKD is identified more commonly among patients with SMI than in the general population

Exploring views on satisfaction with life in young children with chronic illness: an innovative approach to the collection of self-report data from children under 11

The objective of this study was to explore young children’s views on the impact of chronic illness on their life in order to inform future development of a patient-based self-report health outcome measure. We describe an approach to facilitating self-report views from young children with chronic illness. A board game was designed in order to obtain qualitative data from 39 children with a range of chronic illness conditions and 38 healthy controls ranging in age from 3 to 11 years. The format was effective in engaging young children in a self-report process of determining satisfaction with life and identified nine domains. The board game enabled children aged 5–11 years with chronic illness to describe the effects of living with illness on home, family, friends, school and life in general. It generated direct, non-interpreted material from children who, because of their age, may have been considered unable or limited their ability to discuss and describe how they feel. Obtaining this information for children aged 4 and under continues to be a challenge

Symbolic aspects of coping with chronic illness through textile arts

(Taken from Introduction) The relevance of art for people living with chronic physical illness is gradually being recognized (Kaye & Blee, 1997; Malchiodi, 1999). Chronic physical illness poses more than physical and functional problems. The person is also likely to face a range of negative emotions, including anxiety, anger and depression. Illness threatens taken-for-granted assumptions about the self and the future. The person’s core identity and self-esteem may be challenged, particularly where the illness leads to loss of roles, abandonment of valued activities and changes in social relationships (Charmaz, 1992; 1999)

To Live Means to Suffer: Exploring the Identity of Chronic Pain Conditions

This paper examines the necessary identity reconstruction for chronic pain patients through the use of illness narratives. The biographical interruption of a chronic illness, partnered with the patients’ inability to discuss embodiment and pain wholly (because language failures to capture the essence of pain and suffering) creates a devastating chasm between the world of the healthy and the world of the sick. Psychosomatic pain, and illnesses without diagnosis, are all the more divisive conditions, because these factors rob the patient further, disallowing them from constructing even an illness identity. Utilizing published patient interviews, sociological and anthropological texts, as well as illness narratives from authors such as Joan Didion, the first half of this paper explores the discourse surrounding chronic pain, reconciling it with the author’s own experience as a chronic pain patient. The second half of the paper includes interviews conducted by the author, and a discussion of the relationship between these illness narratives and the sociological expectations of the chronically ill. Through these interviews, texts, and narratives, the author explores the implications of chronic pain, which are unquantifiable. Chronic pain is a condition unto itself because it expands beyond the body, problematizing the lives of its victims, and requiring a revision of their identities. From these interviews, it is evident that illness narratives are powerful not because of the specifics of a patient’s pain, but due to the life trajectory interrupted by said pain. Ask chronic pain patients to tell you about their pain and they instead tell you about their lives—ruined vacations, lost friendships—“pain environed in a concrete world,” (Kleinman, 1988)

Strategic approaches to enhanced health service delivery for Aboriginal and Torres Strait Islander people with chronic illness: a qualitative study

BACKGROUND Aboriginal and Torres Strait Islander people with chronic illness confront multiple challenges that contribute to their poor health outcomes, and to the health disparities that exist in Australian society. This study aimed to identify barriers and facilitators to care and support for Aboriginal and Torres Strait Islander people with chronic illness. METHODS Face-to-face in-depth interviews were conducted with Aboriginal and Torres Strait Islander people with diabetes, chronic heart failure or chronic obstructive pulmonary disease (n-16) and family carers (n = 3). Interviews were transcribed verbatim and the transcripts were analysed using content analysis. Recurrent themes were identified and these were used to inform the key findings of the study. RESULTS Participants reported both negative and positive influences that affected their health and well-being. Among the negative influences, they identified poor access to culturally appropriate health services, dislocation from cultural support systems, exposure to racism, poor communication with health care professionals and economic hardship. As a counter to these, participants pointed to cultural and traditional knowledge as well as insights from their own experiences. Participants said that while they often felt overwhelmed and confused by the burden of chronic illness, they drew strength from being part of an Aboriginal community, having regular and ongoing access to primary health care, and being well-connected to a supportive family network. Within this context, elders played an important role in increasing people's awareness of the impact of chronic illness on people and communities. CONCLUSIONS Our study indicated that non-Indigenous health services struggled to meet the needs of Aboriginal and Torres Strait Islander people with chronic illness. To address their complex needs, health services could gain considerably by recognising that Aboriginal and Torres Strait Islander patients have a wealth of cultural knowledge at their disposal. Strategies to ensure that this knowledge is integrated into care and support programs for Aboriginal and Torres Strait Islander people with chronic illness should achieve major improvements.This study was supported by the National Health and Medical Research Council which provided funding for the project

Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review.

Children with chronic physical illness are significantly more likely to develop common psychiatric symptoms than otherwise healthy children. These children therefore warrant effective integrated healthcare yet it is not established whether the known, effective, psychological treatments for symptoms of common childhood mental health disorders work in children with chronic physical illness

Challenges for co-morbid chronic illness care and policy in Australia: a qualitative study

BACKGROUND: In response to the escalating burden of chronic illness in Australia, recent health policies have emphasised the promotion of patient self-management and better preventive care. A notable omission from these policies is the acknowledgment that patients with chronic illness tend to have co-morbid conditions. Our objectives were: to identify the common challenges co-morbidity poses to patients and carers in their experiences of self-management; to detail the views and perceptions of health professionals about these challenges; and to discuss policy options to improve health care for people with co-morbid chronic illness. The method included semistructured interviews and focus groups with 129 purposively sampled participants. Participants were people with Type 2 diabetes, chronic obstructive pulmonary disease and/or chronic heart failure as well as carers and health care professionals. Content analysis of the interview data was conducted using NVivo7 software. RESULTS: Patients and their carers found co-morbidity influenced their capacity to manage chronic illness in three ways. First, co-morbidity created barriers to patients acting on risk factors; second, it complicated the process of recognising the early symptoms of deterioration of each condition, and third, it complicated their capacity to manage medication. CONCLUSION: Findings highlight challenges that patients with multiple chronic conditions face in relation to preventive care and self-management. Future clinical policy initiatives need to move away from single illness orientation toward strategies that meet the needs of people with co-morbid conditions and strengthen their capacity to self-manage. These patients will benefit directly from specialised education and services that cater to the needs of people with clusters of co-morbidities.NHMRC, Australian National University, University of Sydney, Menzies Centre for Health Polic

Tertiary students with a disability or chronic illness: stigma and study

This paper explores ways to support the learning of students with a disability or chronic illness based on preliminary findings of a University of Southern Queensland study, and supporting secondary literature. It argues that for such students the capacity for greater control and management of their ‘learning journey’ is as important as access to specialised disability support services. This is because reframing support of students with a disability or chronic illness in terms of ‘choice’ and ‘self-management’ allows them to maintain their identity as ‘able, effective students’. This approach is supported by secondary literature, which affirms that for students with an invisible disability or chronic illness there is often a reluctance to be so – labelled because of the associated stigma. Instead, students often manage their illness by making particular choices about their learning, including their mode of study, and which courses to enrol in. This tendency is echoed by preliminary findings from a University of Southern Queensland (USQ) study based on the learning experiences of students with a chronic illness. These and other findings point to the centrality of the student learning experience and have implications for learning and teaching design within both enabling, and broader university curricula. The paper finishes by examining specific curriculum design responses to the issue of student disability, including the development of learning communities and the potential for more inclusive assessment modes and practices

Coping with chronic illness and disability through creative needlecraft

Chronic illness and impairment commonly restrict the individual's access to work and leisure activities. Furthermore, if increasingly dependent upon family care, the individual may experience loss of valued roles and self- esteem. A qualitative study was carried out on the written narratives of 35 women, aged 18 to 87 years. All had acquired a disability or chronic illness in adulthood, and although facing different health problems, they shared needlecraft as a common leisure pursuit. The narratives explored the circumstances in which needlecraft had been adopted as a leisure pursuit, and the personal benefits experienced. Most of the women had taken up this activity in adulthood to cope with the crisis of illness. Needlework activities were commonly viewed as providing a means of managing pain, unstructured time, self-image and reciprocal social roles. The women's accounts confirm the value of creative activity for patients learning to cope with chronic conditions