Development of a Comprehensive Psycho Social Care and Support Model for Children and Adolescents Living with HIV/AIDS in India

Special Article - Psychiatric Nursing

Austin J Nurs Health Care. 2017; 4(2): 1041.

Development of a Comprehensive Psycho Social Care and Support Model for Children and Adolescents Living with HIV/AIDS in India

Vranda MN¹*, Subbukrishna D², Ramakrishna J³ and Veena HG4

¹Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences (Institute of National Importance), India

²Department of Biostatistics, National Institute of Mental Health and Neuro Sciences (Institute of National Importance), India

³Department of Mental Health Education, National Institute of Mental Health and Neuro Sciences (Institute of National Importance), India

4National Institute of Mental Health and Neuro Sciences (Institute of National Importance), India

*Corresponding author: Vranda MN, Department of Psychiatric Social Work, National Institute of Mental Health and Neuro Sciences (NIMHANS) (Institute of National Importance), Bangaluru - 560 029, Karnataka, India

Received: March 31, 2017; Accepted: September 01, 2017; Published: September 12, 2017


Introduction: Psychosocial care and support for children and adolescents living with HIV is a novel program initiated with an aim to develop and standardize a comprehensive psychosocial care and support model for children and adolescents living with HIV/AIDS (CALHIV) in India.

Methods and Materials: Cross-sectional approach was used to collect the data from different groups. Non-random purposive sampling technique was employed for selecting the subjects for different groups. Structured indepth interview and focus group discussion were held with children living with HIV/AIDS, their parents/care providers, stakeholders, NGO’s peronnels, government officials and policy makers to understand their concerns, needs and psychosocial issues of children infected with HIV/AIDS. The existing programs, polices and gap in delivering services; and training needs were also explored using structured in-depth interview guide and focus group discussion guide.

Results and Conclusion: Based on the need assessments and in triangulation with existing literature a comprehensive psychosocial care and support intervention package and disclosure booklets were prepared and fieldtested with counselors from ART centers and NGOs staffs. The paper discusses methodology adopted in developing and standardizing a model and its utility in resource limited settings.

Keywords: Children; Stigma; Disclosure; HIV; Psychosocial care; Support


Globally, it was estimated that in the year 2008 there were 33.4 million people living with HIV, out of which children below 15 years constituted 2.1 million [1]. It was estimated that India has an overall prevalence of 0.31%. Approximately 50,000 children below 15 years are infected by HIV every year [2]. The increased access to antiretroviral treatment resulted in increased survival rates among the children infected with HIV/AIDS and also led to the improved quality of life of sero-positive children. This continues to have an increased impact on the mental health of children and adolescents living with HIV. Children with any chronic illness, in general, are found to be at greater risk of psychiatric problems, including depression, anxiety, and feelings of isolation. A major factor that distinguishes HIV/AIDS from other chronic or terminal illness is the stigma. Too often many HIV infected children and their families live in shame associated with AIDS. Illness is often kept as a secret. Parents delay disclosing child’s as well as their own HIV/AIDS illness status due to stigma and possible psychological consequences. Internalizing problems such as anxiety, withdrawn behaviour, depression and somatic complaints are more in younger children with HIV and externalizing problems such as rule breaking, aggressive behaviour, and conduct disorders are common among older adolescent living with HIV [3,4,5]. Further, children with HIV/AIDS have additional factors in the complexity of their illness and treatment as well as in the adverse psychological circumstances and poverty in which many live. These children who know about their HIV status live in fear of their disease, and fear of loss of parents with HIV/AIDS. Moreover, given the nature of HIV transmission, if both parents infected with HIV, then many children become ‘double orphans’. Children not only have to endure the pain and loss of losing parents, and also have to face stigma and survive without the emotional support of their parents. Following the death of the parents most of these infected children end up in living in orphan homes for long term care and protection. This has immediate as well as longer term emotional consequences [6]. As a result the mental health, needs and concerns of the children and adolescents with HIV infection need to be an essential part of their care even with advancements in HAART. When it comes to the disclosure of HIV/ AIDS infection status to the children, there is no clear consensus among the practitioners and parents on when to disclose the HIV positive status to the child. Most of the disclosure guidelines address on illness aspect and treatment adherence and not on addressing the mental health impact of disclosure of HIV status to the child [7]. Once the HIV diagnosis has been disclosed to the infected child, there is a need to monitor in every follow-up visit, the child’s level of functioning, behavioural changes, emotional and psychological adjustment by the health care provider. Moreover, health care providers who work directly with HIV infected children are not being trained with adequate skills to handle the psychosocial and mental health issues of children infected with HIV/AIDS [8,9]. This adds to the woes of the children in vulnerable situations and affects their overall development. The existing counselling programs in India do not address the psychological and mental health issues of children either infected or affected with HIV/AIDS. The existing services in the ART centers in India are more generic than specific needs of infected children and adolescents. There is a lacuna in providing counselling and therapeutic psycho social services to children and adolescents and their families living HIV/AIDS. Some of the existing psychosocial models such as PEPFARmodel based on ecological approach deals with AIDS affected children to promote their resilience and psychological well-being [9] whereas Psychosocial Support (PSS) Model address, age appropriate intervention at emotional, spiritual, cognitive and social domains of HIV infected children through interactions with their surroundings [10]. Few of these models are of western context may not be applicable to the cultural context of Indian setting. There is still limited evidence demonstrating which interventions have positive effects on the well-being of HIV infected children in resource limited settings [11,12]. The present research was aimed towards developing and standardizing a comprehensive psychosocial care model for Children and Adolescents Living with HIV/AIDS (CALHIV) in India. The specific objectives were: to understand the psychosocial and mental health needs of children and adolescents infected with HIV/AID, understand the issues, concerns, training needs of health care service providers working with CALHIV; to develop culturally sensitive comprehensive psychosocial care modules for CALHIV. Towards these ends, we also intended to test the model by training health care service providers in the use of the modules.

Methods and Study Design

The study design was an explorative study using both qualitative methods. It was a cross-sectional research. The use of qualitative methods in a study of this nature would be beneficial as the purpose was to understand the complexity of the participants’ situation and experiences in a comprehensive manner. For the current study nonrandom purposive sampling technique was used to select participants from different groups for data collection. The methodologies adopted for qualitative data collections were In-depth Key Interviews (IDKIs) and Focus Group Discussion Methods. Twenty IDKIs were conducted with CALHIV. A total of four Focus Group Discussion (FGDs) each one with CALHIV and their parents/caregivers; heath care professionals (such as counselors, community care providers, medical officers, pediatricians, and policy makers), and Staffs of Non- Governmental Organizations (NGOs) which provide shelter and care to HIV infected orphan children and adolescents in Bengaluru. Three Phases of the research are given in the flow chart-1.