Introduction
Rheumatic disease is an autoimmune disorder with an unpredictable course of
exacerbation and remission. There is no known cure for the disease at the moment.
The patients’ conditions may progressively deteriorate despite intensive therapies, and
runs an erratic course with the possibility of disfiguration and alteration in body
image. Pain, disabilities and psychological distress are common. Rheumatic patients
may respond differently to the same level of pain and physical symptoms. The
understanding of the needs of rheumatic patients and how they successfully manage
the disease and optimize psychological adjustment can help develop effective
psychosocial interventions.
Aims
The aims of the study are (1) to identify the needs of rheumatic patients and
perceptions of their disease, (2) to develop a conceptual framework for psychological
adjustment, and (3) to identify factors associated with resilience in rheumatic patients.
Methods
The present study consisted of two phases. The first phase was a focus group
interview, aiming to understand the patients’ feelings and to design a questionnaire.
The second phase was a prospective questionnaire survey that includes a baseline
study and a six-month follow-up study. Patients were recruited from support groups in
Hong Kong. The baseline questionnaire was self-administrated, and the follow-up
questionnaire was administrated by telephone interview. The self-regulation model
was chosen as the basis for the conceptual framework for psychological adjustment.
The questionnaire included demographics, illness representation, coping efforts,
appraisal of coping efforts, sense of coherence, quality of care, functional disability,
and health-related quality of life. The outcome measures were functional and
psychological health, change in adjustment, and positive and negative resilience.
Results
Having a good and caring doctor, more information on the disease, and public
understanding of the disease were the needs of rheumatic patients. The patients
perceived that the disease was chronic, cyclical, and had poor consequences. They
perceived that the disease caused great pain, stress, depression and anxiety, and
affected their daily activities, appearance, and relationship with family and friends.
Poor adjustment was associated with chronic and cyclical timeline, and poor
perception of personal and treatment control. The analysis of resilience shows that
positive perception of treatment control and disease consequence, correct
understanding of disease causes, and high sense of own value and importance to the
society, were protective. While those who lacked family support and blamed
themselves or their families to be the cause of disease, were vulnerable.
Discussion and conclusions
The present study lends support to the validity of self-regulation model in
psychological adjustment to disease, but coping efforts could only partially mediate
the relationship of illness representation to appraisal of coping efforts, implying that
the coping style might not sufficiently capture the underlying differences in individual
coping styles. An effective psychosocial intervention can be developed based on the
factors associated with better adjustment and resilience, and targeted at non-working
older patients with rheumatoid arthritis. Last but not least, support from the
community, and public understanding of the disease are important for rheumatic
patients. / published_or_final_version / Psychiatry / Doctoral / Doctor of Philosophy
| Identifer | oai:union.ndltd.org:HKU/oai:hub.hku.hk:10722/161525 |
| Date | January 2012 |
| Creators | Young, Man-chi., 楊敏智. |
| Contributors | Chung, KF |
| Publisher | The University of Hong Kong (Pokfulam, Hong Kong) |
| Source Sets | Hong Kong University Theses |
| Language | English |
| Detected Language | English |
| Type | PG_Thesis |
| Source | http://hub.hku.hk/bib/B47869653 |
| Rights | The author retains all proprietary rights, (such as patent rights) and the right to use in future works., Creative Commons: Attribution 3.0 Hong Kong License |
| Relation | HKU Theses Online (HKUTO) |
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