Abstract
Social support is an important factor with illness, but perhaps is most critical during terminal illness. The need to feel cared for and supported becomes more acute when individuals are hospitalised, away from social networks that previously sustained them. In Pakistan, hepatitis C is a prevalent chronic illness that advances to terminal chronic liver disease (CLD) because effective treatment is unavailable. As CLD progresses, many patients find themselves hospitalised and away from their families during this final phase of their lives. Greater knowledge about social support for this terminally ill group can provide insights for healthcare interventions to facilitate a better quality of life.
Investigators in this phenomenological study interviewed 21 terminally ill inpatients with CLD regarding the nature and role of social support. Modifications to streamline the semistructured interview following use of the schedule with five patients strengthened the data collection process. Transcribed and translated recordings were systematically analysed. Social support was important in improving patient outlook. Derived from many sources including family, friends and healthcare providers, social support from spouse and/or children was the most significant.
This study deals with an identified literature gap regarding caring for terminally ill patients with hepatitis C in Pakistan. Investigators correctly indicate that research carried out on patients with other terminal diseases or in different countries are not transferrable to groups from a different culture.
Seeking direct participation of terminally ill patients with CLD is the greatest contribution of this study. Frequently, investigators and institutions are reluctant to approach a sensitive research situation. However, this reluctance deprives patients of the opportunity to offer experiential insights that can positively impact others (Addington-Hall, 2005). Gathering perspectives from actual patients rather than relying on the perceptions of family members or healthcare providers increases information accuracy. While challenging, such research is ethically permissible. Protective safeguards allowed patients or family members to refuse research participation. Following consent, some patients were withdrawn from the study if they were unable to continue participation. Ethical sensitivity to mental health needs was achieved by having a psychologist accompany the investigator to provide participant support.
An important finding is that social support plays a significant role in improving the connectedness and outlook of hospitalised patients with CLD. Notable is that support of the spouse and children are the most significant sources. However, support from a broader network of family, friends and healthcare providers is also important.
While this study provided important information regarding social support of terminally ill patients with CLD, there are considerations to address regarding study limitations and future study. First, qualitative studies tend to have small samples and are not generalisable to broader populations. Participants in this study were part of a specialised healthcare system created for CLD patients. Patients in other facilities or living at home may have different needs and sources of social support. Consequently, future studies need to address these issues. Potential interventions to institute or improve social support of patients with CLD need further investigation.