XPLORING XDP: Coping Strategies of Female Caregivers of Patients with X-linked Dystonia Parkinsonism

Abstract

Dystonia, a word that is unusual and unfamiliar for many, is a disorder that is understudied in the medical world. There exists a specific type of Dystonia that is endemic to the Philippines yet many are unaware and uninformed, leaving the patients and their families to deal with the debilitating disorder, the difficult situation, and the social discrimination on their own. This study focused on the analysis of the coping strategies of female caregivers of patients with X-linked Dystonia Parkinsonism (XDP). The purpose of the study was to determine the level of coping skills of the female caregivers and identify the coping strategy they use based on their attitude towards themselves, the patient, and others. It also aimed to investigate the psycho-social stigma attached to the disorder and its effects on the female caregivers as perceived by the respondents. Thirty female caregivers, specifically wives, mothers, and sisters of XDP patients from selected areas in Metro Manila, participated in the study. The researcher used both quantitative and qualitative methods in conducting the research. A survey questionnaire was designed and distributed to the respondents to determine their level of coping, and the type of coping strategy used in their caregiving functions. Key informant interviews were likewise conducted with five of the thirty respondents to further investigate the individual perception and effects of the psycho-social stigma attached to the disorder. Descriptive statistical analysis and content analysis were performed to analyze the data gathered. The results revealed that female caregivers residing in Metro Manila had high coping skills when taken as a group, as shown in their high mean scores in all three attitude domains in the scale. In addition, the data indicated that the most commonly used coping strategy was emotion-focused coping wherein the respondents reported that they manage their feelings and maintain affective equilibrium. Furthermore, the respondents had a low level of perception with regards to the psycho-social stigma of XDP. The female caregivers did not perceive the stigma, and did not feel being discriminated by society. Consequently, their responses to the statements and questions showed that the stigma did not affect them in their caregiving functions, as they did not perceive themselves as stigmatized.