Aims and objectives
To report an analysis of the concept of Living with chronic illness in adults, using Rodger's evolutionary analytical methodology.

Background
In the literature, several qualitative studies exist that address the question of Living with chronic illness from the adult patient's perspective. However, the lack of clarity and consensus among the existing studies renders this concept ambiguous when it is analysed in depth.

Design
A narrative review.

Methods
A systematic search has been carried out on electronic databases such as Medline (PubMed), Cinahl (Ebsco), Cochrane Library, PsycINFO (Ovid), Embase, Cuiden, Dialnet and Scielo. This was limited to articles published in either Spanish or English, from 2003–2013.

Results
Living with chronic illness is a complex, dynamic, cyclic and multidimensional process, and involves the development of five different attributes: Acceptance, Coping, Self-management, Integration and Adjustment. Depending on how these attributes operate, there are four different ways of living which can result from the process of Living with chronic illness: (1) Disavowal, (2) False Normality, (3) The New Normal and (4) Disruption.

Conclusions
This paper contributes to the understanding of the concept ‘Living with chronic illness’. Findings in this analysis have to be evaluated with caution and further research is needed on this topic to confirm them. Also, more studies in evaluating how patients live a long-term condition are recommended to foster patient-centred care.

Relevance to clinical practice
Findings generated from this concept analysis can raise awareness of Living with chronic illness so that this process could be assessed in a correct and uniform way in the clinical community and improved when needed.

Living with chronic illness in adults: a concept analysis.

This study shows that self-responsibility and self-control are meaningful values in the activities and decisions of everyday life. Dignity and being respected as an individual are closely connected to being able to manage on one's own and being independent of others' help. The study also shows that including other people into one's life situation can be an important sign of self-management. However, the critical interpretation shows that it is the view of the human being which determines whether help from others and self-managing on one's own can be combined. With a relational view of the human being, i.e. the basic condition that people always enter into relations of dependence, there is no contradiction between independence and dependence. In contrast, an individualist, liberalist view of the human being promotes an attitude of blaming oneself with the potential for feelings of inadequacy and guilt. The study also shows that seeking out treatment in the alternative medical sector maintain a form of continued self-control and self-responsibility. The study concludes that the nurse must work to qualify her/his sensory-based, situationally determined attentiveness and her/his view of the human being, which will include directing her/his attention towards the patient's view of the human being, values and ways of relating to oneself and to one's choices. The research design is qualitative and takes a phenomenological-hermeneutic approach. The data are based on interviews with 18 chronically ill patients, divided into three groups of six patients diagnosed with 'type I' diabetes, colitis ulcerosa and patients with coronary occlusion in the rehabilitation phase. Regardless of the diagnosis, the objective of the interview study was to highlight themes in the patients' views of health and illness related to their chronic condition and the significance of these views have for their mastery of everyday life. The research method is inspired by Paul Ricoeur.

Independence/dependence - A Contradictory Relationship?: Life with a chronic illness

Objectives Parkinson's disease (PD) is a progressive neurodegenerative disease that often impedes activities of daily living (ADL) and social functioning. Impairment in these areas can alter social roles by interfering with employment status, household management, friendships, and other relationships. Understanding how PD affects social functioning can help clinicians choose management strategies that mitigate these changes. Methods We conducted a mixed-methods systematic review of existing literature on social roles and social functioning in PD. A tailored search strategy in five databases identified 51 full-text reports that fulfilled the inclusion criteria and passed the quality appraisal. We aggregated and analyzed the results from these studies and then created a narrative summary. Results Our review demonstrates how PD causes many people to withdraw from their accustomed social roles and experience deficits in corresponding activities. We describe how PD symptoms (eg, tremor, facial masking, and neuropsychiatric symptoms) interfere with relationships (eg, couple, friends, and family) and precipitate earlier departure from the workforce. Additionally, several studies demonstrated that conventional PD therapy has little positive effect on social role functioning. Conclusions Our report presents critical insight into how PD affects social functioning and gives direction to future studies and interventions (eg, couple counseling and recreational activities).

Social role functioning in Parkinson's disease: A mixed-methods systematic review.

Health economic evaluations of patient education interventions a scoping review of the literature.

Parkinson's disease is the second most common neurodegenerative condition after Alzheimer's disease. The number of patients will rise dramatically due to ageing of the population and possibly also due to environmental issues. It is widely recognised that the current models of care for people with Parkinson's disease or a form of atypical parkinsonism lack continuity, are reactive to problems rather than proactive, and do not adequately support individuals to self-manage. Integrated models of care have been developed for other chronic conditions, with a range of positive effects. A multidisciplinary team of professionals in the United Kingdom and the Netherlands, all with a long history of caring for patients with movement disorders, used knowledge of deficiencies with the current model of care, an understanding of integrated care in chronic disease and the process of logic modelling, to develop a novel approach to the care of patients with Parkinson's disease. We propose a new model, termed PRIME Parkinson (Proactive and Integrated Management and Empowerment in Parkinson's Disease), which is designed to manage problems proactively, deliver integrated, multidisciplinary care, and empower patients and their carers. It has five main components: (1) personalised care management, (2) education and empowerment of patients and carers, (3) empowerment of healthcare professionals, (4) a population health approach, and (5) support of the previous four components by patient- and professional-friendly technology. Having mapped the processes required for the success of this initiative, there is now a requirement to assess its effect on health-related and quality of life outcomes as well as determining its cost-effectiveness. In the next phase of the project, we will implement PRIME Parkinson in selected areas of the United Kingdom and the Netherlands.

/pdf/proactive-and-integrated-management-and-empowerment-in-59xlrlusjx.pdf

Proactive and Integrated Management and Empowerment in Parkinson's Disease: Designing a New Model of Care.

Objective
The influence that social conditions and personal attitudes may have on the quality of life (QoL) of Parkinson’s disease (PD) patients and informal caregivers does not receive enough attention in health care, as a result of it not being clearly identified, especially in informal caregivers. The aim of this study was to provide a comprehensive analysis of psychosocial adjustment and QoL determinants in PD patients and informal caregivers.

/pdf/factors-influencing-psychosocial-adjustment-and-quality-of-2krlral2qv.pdf

Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers

/pdf/proyecto-renace-convivencia-de-pacientes-y-familiares-con-la-27mpf1w4vl.pdf

Proyecto ReNACE. Convivencia de pacientes y familiares con la enfermedad de Parkinson: resultados preliminares de la Fase I

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Living with chronic illness in adults: a concept analysis.

Factors influencing psychosocial adjustment and quality of life in Parkinson patients and informal caregivers

Proyecto ReNACE. Convivencia de pacientes y familiares con la enfermedad de Parkinson: resultados preliminares de la Fase I