Discussion
mental illness, illness, PLWS [A, cancer, PLWS, disability, hopefulness
CANCER, RECRUITMENT
The current study examined the independent and dyadic associations between hopefulness and selected predictors within the PLWS-caregiver relationship. Hopefulness in our study population exhibits interdependence meaning dyad partners influence one another’s level of hope over time. To the best of our knowledge, there is no current literature on the interdependence of hopefulness among PLWS and their caregivers for comparison. Family functioning was found to be an important correlate of hopefulness among both participant groups. Better family functioning was associated with higher levels of hopefulness, suggesting that the maintenance of a healthy relationship with one’s dyadic partner is essential. This finding speaks to the interdependent nature of hopefulness among this population and suggests that facilitating healthy relationship dynamics could promote positive outcomes in both PLWS and caregivers.Among PLWS, we found various psychosocial and clinical factors to be important correlates of hopefulness. Precisely, lower levels of internalized stigma, symptom severity, and disability were associated with higher levels of hopefulness. This aligns with findings from the limited studies that have explored correlates of hopefulness among PLWS [A positive partner effect was identified among PLWS. This indicates that higher caregiver hopefulness is associated with higher patient hopefulness at follow-up. Therefore, caregivers may play a significant role in influencing hopefulness levels among PLWS. Facilitating hopefulness in caregivers may ultimately be important for improving psychosocial and clinical outcomes in PLWS. A negative partner effect among caregivers was identified, indicating that higher hopefulness among PLWS is associated with lower caregiver hopefulness at follow-up. This finding is only somewhat unexpected. There is literature to indicate that PLWS who have low insight (illness awareness) have more difficulties in the recovery process which could include goal setting alignment with clinicians and caregivers who are more or less hopeful about what is possible for the future given symptomology and functioning [This study has several limitations, including its small sample size of dyads (Second, hopefulness is a latent construct that is subject to measurement error. The HHI instrument has not been validated in Tanzania and may not have accurately captured the experience of hopefulness in our study population despite instrument translation and adaptation. It is worth noting that the Herth Hope scale was found to be highly correlated in our data with a second local measure of hopefulness, the Helen Siril Hope scale, which was originally developed for HIV populations (ρLastly, the study sample may be not representative of the larger population of PLWS and their caregivers in Tanzania. Participants were eligible to participate if they were receiving outpatient services at either of the study sites. This criterion likely excluded several affected individuals due to the logistical and financial challenges associated with accessing care in Tanzania. Additionally, symptoms among PLWS had to be stable at the time of informed consent which likely led to the exclusion of affected individuals who were experiencing an acute episode of their illness at the time of study recruitment. As many of the PLWS in our study are reliant on their relatives for organizing their treatment and appointments, our study may exclude less involved caregivers. Consequently, hopefulness levels may be higher in the present study than in the general population of PLWS in the areas studied.Tanzania’s Disabilities Act of 2010, which legally requires informal family caregivers to take financial and social responsibility for individuals with disabling levels of mental illness, could be improved upon with a government-backed statutory financial safety net. While caregivers are needed for a range of psychosocial supports, removing the additional financial burden could help them better carry out their roles effectively while remaining hopeful. Additionally, caregivers should be included in clinic and community-based interventions targeted at fostering hopefulness alongside patients. Similar to the intervention implemented by Chan et al. in persons recovering from cancer, a clinic-based hope intervention may consist of therapy on topics including goal setting, identification of pathways to achieve goals, and positive self-talk [To the best of our knowledge, this study is the first to examine the longitudinal, dyadic relationship of hopefulness among PLWS and their caregivers in resource limited settings, such as Tanzania. As indicated in other studies conducted in Tanzania, family structures, roles, and responsibilities are both traditional and evolving with rapid social change (e.g. deferential respect for parents/elders who are often caregivers, alongside a potential lessening of extended family support for caregiving, moving towards more nuclear family structures, particularly in urban areas [Qualitative research may be particularly beneficial to conduct on this topic, as hopefulness is a multifaceted construct that is influenced by culture and context. Qualitative research should be conducted among both PLWS and their caregivers in order to further reveal the complexities of hopefulness as experienced in the family context.