The aim of the present study was to investigate the impact of parental leprosy on the well-being of adolescent children. The study found that adolescents with leprosy-affected parents had higher levels of depressive symptoms and lower levels of self-esteem and HRQOL. Our results have important implications for implementing mental health programs for adolescents with leprosy-affected parents who currently have limited access to such programs.
In this study, one of the inclusion criteria of adolescents with leprosy-affected parents was not having chronic diseases. The “Physical Well-Being” score of the KINDLR
was lower for adolescents with leprosy-affected parents than for those with unaffected parents. Adolescents with leprosy-affected parents are vulnerable to the onset of leprosy [30
] and thus, they might worry about contracting the disease despite being in good health and having regular health check-ups.
Adolescents with leprosy-affected parents had lower “Emotional Well-Being” and “Self-Esteem” scores than those of general adolescents. Self-esteem is strongly related to emotional well-being and is an emotional component of personal qualities and competencies. It is generally related to how well or poorly individuals feel about themselves [28
]. Leprosy-affected people and their family members are often excluded from social participation at the community level [4
]. Such experiences of adolescents with leprosy-affected parents might contribute to their low self-esteem and poor emotional state. Over 90% of students in public schools in the study area come from the poorest quintiles in Nepal [31
]. Thus, low self-esteem of the participants in this study might be due to the poverty of their families. Adolescents are highly susceptible to the impact of family events such as poverty, unemployment, and other adverse social circumstances [32
scores might vary according to these participants’ background. Many adolescents of leprosy-affected parents cannot go to school because of the poor state of the parents’ economic situation [15
]. Thus, there is a need to deal with such issues and further enhance the educational environment for these adolescents.
The “Friends” and “School” subscale scores were not significantly different between adolescents with and without leprosy-affected parents. In the hostels or the leprosarium, adolescents stay with other primary stakeholders of leprosy. It is unlikely that the adolescents are discriminated against by adolescents of a similar status. A previous study [33
] suggested that the partnerships formed within minority groups promote the strength of solidarity. In addition, fieldwork for this study was conducted soon after school final examinations. In Nepal, such examinations are generally stressful because students might fail and be required to repeat the same grade [34
]. This situation might have contributed to the low levels of school subscale scores among the studied adolescents.
Mental health studies in developed and developing countries show that between 10–25% of children and adolescents suffer from a mental health problem [35
]. The high prevalence of depressive symptoms among adolescents with parents unaffected by leprosy in this study might be due to their economic backgrounds. Mental health programs are difficult to access for most of the population in Nepal.
total and subscale scores of adolescents with two parents affected with leprosy were significantly different from those with only one parent affected. In addition, the presence of depression and having two parents affected with leprosy significantly affected adolescents’ HRQOL. A previous study reported a similar result where the risk of mental health problems for adolescents was greater when both parents had mental health problems than when a single parent had a mental health problem [36
]. Adolescents with leprosy-affected parents might be involved in daily household activities including caring for family members as they grow up [17
], especially when both parents are affected with leprosy-related disabilities. Thus, the burden of leprosy and related social problems might be more severe among adolescents with two parents affected with leprosy compared with those with only one parent affected. The results of the present study may be helpful in evaluating the environment of adolescents with leprosy-affected family members and for assessing the range of interventions that might be appropriate.
Our results suggest the need for implementing mental health programs for adolescents with leprosy-affected parents, in particular, those adolescents with both parents affected with leprosy. Moreover, the programs should be designed to reduce or prevent stigma among adolescents with leprosy-affected parents. Most of the patients and their family members, as primary stakeholders in leprosy, are also vulnerable to public stigmatization and misinformation that causes fear or anxiety. Such programs should aim to reduce depressive symptoms and improve self-esteem and subjective well-being among adolescents with leprosy-affected parents, and help them to cope with their parents’ disease [37
One limitation of our study is the small sample size, and it may not be possible to generalize our results to all adolescents with leprosy-affected parents. Thus, the suggested interventions may not be definitive in Nepal or other countries. However, it is difficult to recruit sufficient participants to adequately represent the target population, because home-based treatment of leprosy patients is common in Nepal as patients want to conceal their disease from the local community. Nevertheless, we recruited participants residing either in the leprosarium or in hostels. The response rate of participants in the study was 75% (102/135). Therefore, our results are applicable to adolescents residing in similar institutions.
Our study has another limitation. The CES-D is a self-rating instrument to identify depressive symptoms during the previous week, and is not a diagnostic tool to identify depression administered by a suitably trained professional.