–Eczema is a chronic skin disease that affects a large population worldwide. In Hong-Kong, around one third of primary and secondary students experience skin problems and eczema is one of the major diseases reported. -Research studies have shown that not only will children with eczema suffer from physical and emotional disturbances, their parents may also experience various kinds of social and psychological distresses in the caregiving process which will subsequently challenge their core values, philosophies and attitudes towards life. However, the psychosocial needs of the parents of children with eczema have generally been neglected and the initiatives to understand how they make sense of their lived experience have also been under-researched. Besides, most studies scarcely reveal the benefits that the parents may gain from the caregiving experience, and how their overall well-being an be maintained.
A research study was carried out to explore the psychosocial mechanism of how the parents of children with eczema reconstruct the meaning of their caregiving experiences, and examine how they establish and maintain their week-being in spite of their caregiving burden.
-15 parents of children with eczema were invited for a semi-structured interview. In addition to the parental stress and coping strategies, the sense-making and benefit-finding mechanism in their eczema caregiving experience were explored. A conceptual schema on the psychosocial predicament of parent caregivers was developed.
Results demonstrate a vicious circle among 3 major kinds of challenges:
1. Affective Apprehension (e.g. legacy puzzles, transferred emotion from children),
2. Caregiving Related Concerns (e.g. caregiving myths, financial burden),
3. Relationship Dynamics (e.g. family misunderstanding, spouse collaboration)
1. Affective Apprehension
-These confronting encounters and incidents reinforced one another in a feedback loop and created a never-ending cycle.
-The feeling of hopelessness and helplessness about the disease in the caregiving process, and the unresolved conflicts in turn generated higher psychological distress and tremendous adverse impact on parents’ mental health.
-The interaction of the parent caregivers and their children with eczema was shown to be quite dynamic and affects the behavior of one another.
-While most parents were very keen to identify the appropriate treatments for children with eczema, they were also disheartened by the incurable nature and the repeated episode of the disease.
2. Caregiving Related Concerns
Caregiving experience normally came with stressful and depressive incidents, many parents therefore were stuck between the “hyper-vigilant” and “indifferent states, which generated the corresponding “approach” or “avoidance” behavior. Depending on the outcome of treatment options and responses from the children, parent caregivers could shift between these psychological states and behave differently.
Conclusions
-Despite the struggles and confrontations in the caregiving journey, some parents, however, were still able to identify the benefits in the stressful journey by revisiting their core beliefs and values.
-These gains and advancements included enhanced understanding of oneself, closer relationships with other family members, mastery of new skills, and refreshed perspectives on life priorities.
–As life was no longer controllable and was full of uncertainties, some parents would redefine their sense of purpose, discover a new essence of caregiving experience, and shift from the ordinary or global meaning to a more existential or situational meaning of life.
-The meaningful reconstruction process resulted in a spiritual growth and positive attitude in facing the caregiving challenges, which also highlighted the importance of maintaining psychosocial week-being of the parents.
-By elucidating the strengths, assets, capabilities, meaning, and uplifts of the parenting experiences in the context of eczema, more effective caregiver support can be developed to empower distressed eczema families.
Chan C. Body – mind – spirit approach in management of Atopic Dermatitis. – an Evidence-Based Review. Atopic Dermatitis Symposium – Oct 2016 – Hong Kong
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