Ambiguous loss and grief reactions among adolescents with parents(s) diagnosed withy HIV/AIDS. identifying moderating family qualities/resilience for intervention

Abstract

The aim of the study was to determine the experience of ambiguous loss and grief reactions in adolescents affected by parental diagnosis of HIV/AIDS, and the identification of potential resilience factors that moderate the grieving symptoms. A convenient sample of 159 adolescents ninety-five (95) from families with a parental diagnosis of HIV/AIDS and a control group of sixty-four (64) adolescents whose parent(s) were diagnosed with cancer, participated in the study. The age of the participants from both families fell in the following ranges: 11-14 (n=45), 14-17 (n=65), 17-18 (n=45), 18 and above (n=2). Eighty-nine (89) were females whereas seventy (70) were males. A triangulation method of data collection was used wherein a biographical questionnaire designed by the researcher, a TRIG questionnaire to assess the level of grief in the participants and resilience scales were used in the quantitative phase. The family resilience scales included Family attachment and changeability Index 8 (FACI-8), Family Crisis Orientated Personal Evaluation Scale (F-COPES), Family Hardiness Index (FHI), and Relative and Friend Support Index (RFS). The Pearson correlation was used to identify the significance of potential resilience factors present in the affected families. Regression analysis was used to determine the predictability of variables to show moderating effect of resilience factors on the impact of experience of an ailing member of the family. Interviews were held with the adolescents in the qualitative phase using semistructured interview schedule. The questions elicited qualitative responses on the participants’ feelings towards the illness of the parents, the role they are playing and feelings towards the role, experience of feelings of loss, disclosure and the family qualities perceived to be helping them adapt to the stress of having a sick parent. The results showed that the two groups experienced ambiguous loss in the form of boundary ambiguity marked by enforced role changes following indisposed parent due to ill-health. Both groups of adolescents experienced forms of grief during the ailment of the parent(s). HIV/AIDS affected group experienced delayed grief whilst the control group of cancer affected individuals experienced acute and prolonged grief. Parental disclosure following diagnosis was higher among cancer affected families (75%) than those affected by HIV/AIDS (55%). There was, however, no significant difference between disclosure of disease status and the experience of grief, p=0.0120. Potential resilience factors in both families were F-COPES, FHI, and FACI-8. These factors were also found to have a moderating effect on the experience of grief in the HIV/AIDS affected families, but showed the opposite effect on the experience of grief in the cancer affected families. This shows the uniqueness of the study in the way the HIV/AIDs and Cancer affected families responded differently to the moderation of the resilience factors. The difference in the impact is in line with the shift in the status of HIV/AIDS from being a terminal condition to being manageable and considered chronic in contrast to cancer. The shift was seen occurring also in this study where previously high grief was associated with HIV/AIDS as its diagnosis was regarded as a death sentence. There was high stigma associated with HIV/AIDS diagnosis until recently when it was found to be controllable and also positively impacting on the life expectancy in South Africa that increased from 53 to 64 years post utilization of ARV’s.