SPOUSAL CAREGIVERS OF ADVANCED CANCER PATIENTS : ACOMPARATIVE STUDY OF THE MIDDLE-AGE AND ELDERLY CAREGIVERS

Abstract

This thesis focuses on the caregiving experiences of spousal caregivers of advanced cancer patients. The comparative design adopted serves to explore differences between the level of stress, level of informal social support received, level of awareness and utilisation of formal services and the needs and worries of two groups of caregivers: the middle-aged and the elderly. The theoretical background on which this comparison was based, was the individual life stage and family life cycle concept. A total of 30 spousal caregivers: 15 middle-aged (35-50 years old) and 15 elderly (60-75 years old) were involved in separate face-to-face interviews. A self developed questionnaire guided the quantitative and qualitative enquiries during the interview sessions. Standard instruments were adopted, namely the Barthel ADL Index, Caregiver Strain Index and General Health Questionnaire. The latter two jointly measured the multidimensional construct of caregiver stress. Statistical tests designed for smaller sample sizes were engaged for results analysis. Quantitative results showed high levels of stress amongst both caregiver groups. Significant differences in stressors were found. Individual and family life stages had indeed highlighted differences on their impact on caregiving. Excessive role demands were unique to the middle-aged caregivers whereas health strains were prominent amongst the older group. The stress study gave rise to important secondary findings. Positive correlations were established between the patients' reduced activity days and level of activity of daily living (ADL) with caregiving stress. Implications arose for gender effects and quality of marital relationship. In terms of the quantitative social support enquiry, a key finding was the clear emergence of a discrepancy between the types of support most perceived Ill important and the actual types of support received. Practical support was ranked most important yet, emotional support was the most extensively received. Family and kin support were most frequently sought. Caregivers tended to possess low help seeking behaviour, adopted independence in the caregiving role and experienced isolation. Social services yielded low levels of awareness and thus utilisation. Strong implications were drawn specific to the mode of service delivery i.e. high dependence on professional referrals. Caregivers' low help-seeking behaviour, coupled with the accessibility and availability of services were key factors to service utilisation. Practical and specific life stage worries and needs were most commonly expressed. Insightful implications for policies, programmes, medical professionals and social work practice were derived, targeted at the best fit between needs and services. Finally, the thesis concludes with useful recommendations for future research.