Self-Management in Daily Life with Psoriasis: An Integrative Review of Patient Needs for Structured Education

Abstract

The aim of this integrative review is to identify and discuss patient needs for education to support self-management in daily life with psoriasis. As psoriasis increasingly gains recognition as a serious chronic autoimmune skin disease with long-term impairment on the life course, and not mainly a cosmetic problem, nurses are highly challenged to develop efficient education to support patient self-management. The paper includes five stages: (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and synthesis, and (5) presentation, based on theoretic scaffolding around the concept “need.” Nineteen of 164 original papers within nursing, medicine and psychology, and reflecting patient perspective were included. To capture the patients' cultural understanding of the implications of the disease and care, we developed an interlevel model indicating that self-experienced burden of disease and its visibility, personal conditions such as illness perception, and the patient's age at onset time are high-impact factors that should be addressed in future structured patient education programmes. The research on patient needs has hitherto focused on adults, but the problems and vulnerability associated with having a chronic and visible disease during adolescence must be acknowledged, and patient education initiatives designed for this young group are recommended.

Dynamic Balancing in Illness Coping: An Interpretative Phenomenological Analysis on the Lived Experience of Chinese Patients with Psoriasis

“…Consistent with previous studies [24][25][26], patients living with psoriasis experienced the disease in a multidimensional perspective in terms of physical, emotional and social ill-being and well-being. Prominent physical symptoms are itching, pain, flaking/scaling and red patches of skin, any of which can significantly impact patients' emotional states and social functioning.…”

Health literacy: a new piece of the puzzle in psoriasis care? A cross‐sectional study

“…It seems reasonable to expect that people with higher HL may be more aware of the importance of psoriasis knowledge to keep symptoms under control and also more prone to participate in patient education and self‐management programmes. For patients with psoriasis with lower HL levels it may be difficult to adhere to complex treatment modalities and navigate lifestyle changes related to optimal self‐management …”

“…Thus, for many, a life with psoriasis includes physical, psychological and economic challenges . The cumulative impact of comorbidity risks related to psoriasis, in addition to time‐consuming skin treatments, may also make treatment concordance and self‐management difficult for patients . Given this biopsychosocial complexity and that of modern healthcare systems, the demands on these individuals in terms of self‐management, healthcare system navigation and communication with different healthcare professionals appear to have increased …”

Facing the dilemma of patient-centred psoriasis care: a qualitative study identifying patient needs in dermatological outpatient clinics

“…There is a high level of awareness of the increased risk of cardiovascular morbidity and mortality in patients with severe psoriasis, which indicates that self‐management must be a long‐term goal in psoriasis management . Self‐management is often described as a skill that clinicians teach patients, but before encountering clinicians, patients have already adopted behavioural mastery towards managing psoriasis throughout their lives.…”