Reconstructing the Meaning of Caregiving Experience: Breaking the Vicious Cycle of Parental Stress in Taking Care of Children with Eczema

Background and Purpose

Eczema is a chronic skin disease that affects a large population worldwide. Children with eczema not only 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.  Despite the fact that some research studies have been conducted to elucidate the caregiving burden and distress of parents in the caregiving journey, none focus on the psychosocial mechanisms of reconstructing the meaning of the disease and integrating it into parent’s life experiences. Most research studies have indicated the profound psychosocial impact of the disease on parents, but they scarcely reveal the benefits that parents may gain from the caregiving experience, and how their overall wellbeing can be maintained. The current study fills these gaps by developing a conceptual framework to describe the meaning reconstruction mechanism of parents in managing parental stress and identify the benefits they may realize in the caregiving process of children with eczema.    

Method

Nine parents of children with eczema were invited for an in-depth, semi-structured interview. The informants are predominantly female parents (1 father and 8 mothers) with age from 32 to 48 (mean: 36). Majority of their children are males (7 boys and 2 girls) with age from 0.5 to 11 (mean: 3.3) and all children experienced infant onset of eczema from 1 month to 8 months (mean: 3.8 months). Interviews elicited informants’ parental stress, coping strategies, sense-making and benefit-finding mechanism in their eczema caregiving experience. Interviews were transcribed verbatim, coded thematically and analyzed guided by the principles of constructivist grounded theory.

Result

Three major themes on the circular causality of parental stress and children’s illness experience were emerged: 1) affective apprehension (including transferred emotion from bodily discomfort, psychological distress and social stigmatization), 2) caregiving related concerns (including caregiving myths, treatment detour, family functioning and financial burden), and 3) relationship dynamics (including family misunderstanding, spouse collaboration, social support, parent-child dynamics and professional advices). The unresolved conflicts could in turn generate higher psychological distress and tremendous adverse impact on mental health, and a vicious cycle could eventually be developed.

However, some parents were still able to find benefits and search for meanings which could bring new essence to their caregiving experience and break the vicious cycle of parental stress: 1) affliction acceptance, 2) equanimity appreciation, 3) knowledge recognition and 4) positive social support. Informants also realized a number of benefits in the caregiving journey including enhanced self-awareness, closer relationships with other family members, mastery of new parenting and caregiving skills, redefinition of life priorities, and reestablishment of life attitude.

Conclusion

Despite parental stress from various dimensions in the caregiving process, some parents were able to go through a meaning reconstruction process which resulted in a spiritual growth and a positive attitude in facing challenges. This highlights the importance of maintaining psychosocial wellbeing of parents of children with eczema, and identifies a new therapeutic direction in addition to the conventional pharmacological approaches.