Progress in Palliative Care

2019

DOI: 10.1080/09699260.2019.1646033

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Integrating palliative care to improve the care of children living with HIV in Indonesia

Suryadi Limardi¹,

Ricky Saunders²,

et al.

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“…The Indonesian Ministry of Health reports that the cases of children living with human immunodeficiency virus (HIV) below 19 years of age have cumulatively increased from 2133 in 2013 to 3055 in 2017 (The Ministry of Health, 2018). The government of Indonesia has established a national HIV programme responding to the rising number of HIV cases, however, the programme is focused on adults (Limardi et al, 2019) leading to the fragmentation of care for children and their families (Qur'aniati et al, 2022). HIV infection does not only have an impact on the physical health of children, but also results in socioeconomic hardship, psychosocial stress and emotional problems for children and their families leading to sub‐optimal treatment and care (Qur'aniati et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

Social determinants of health on human immunodeficiency virus care quality in Indonesia

¹

,

²

,

³

et al. 2022

Journal of Advanced Nursing

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Aims:The aim was to examine the social determinants of health on human immunodeficiency virus care quality for children in Indonesia.Design: A qualitative design using constructivist grounded theory methods was utilized.Methods: Data were collected between 2019 and 2020 using in-depth-interviews and memo writing. In total, 23 semi-structured individual interviews with healthcare professionals, 12 with children with human immunodeficiency virus, and eight family members were conducted. Data were analysed with the two-step initial coding and focused coding, along with the constant comparative method, theoretical sensitivity and memo writing.Results: Five themes were constructed from participants' perspectives on human immunodeficiency virus care for children: (1) living with a low-socioeconomic status,(2) lacking instrumental support, (3) experiencing complicated procedures for public health insurance, (4) limited Human Immunodeficiency Virus care services for children and (5) lacking care coordination, policies and practices. Conclusion:Children living with human immunodeficiency virus had poor health outcomes, due to having a low-socioeconomic status, reduced access to healthcare, coupled with a lack of social support services.Impact: This study demonstrated how the social determinants of health negatively impact the quality of care for Indonesian children with human immunodeficiency virus and their families. Understanding these determinants would benefit health professionals, in particular nurses, to consider these factors in their assessment to create a holistic care plan for children living with human immunodeficiency virus and their families. Addressing the social determinants of health would beneficially enhance outcomes and well-being of children living with human immunodeficiency virus health in Indonesia.

“…The Indonesian Ministry of Health reports that the cases of children living with human immunodeficiency virus (HIV) below 19 years of age have cumulatively increased from 2133 in 2013 to 3055 in 2017 (The Ministry of Health, 2018). The government of Indonesia has established a national HIV programme responding to the rising number of HIV cases, however, the programme is focused on adults (Limardi et al, 2019) leading to the fragmentation of care for children and their families (Qur'aniati et al, 2022). HIV infection does not only have an impact on the physical health of children, but also results in socioeconomic hardship, psychosocial stress and emotional problems for children and their families leading to sub‐optimal treatment and care (Qur'aniati et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

Social determinants of health on human immunodeficiency virus care quality in Indonesia

¹

,

²

,

³

et al. 2022

Journal of Advanced Nursing

View full text Add to dashboard Cite

Aims:The aim was to examine the social determinants of health on human immunodeficiency virus care quality for children in Indonesia.Design: A qualitative design using constructivist grounded theory methods was utilized.Methods: Data were collected between 2019 and 2020 using in-depth-interviews and memo writing. In total, 23 semi-structured individual interviews with healthcare professionals, 12 with children with human immunodeficiency virus, and eight family members were conducted. Data were analysed with the two-step initial coding and focused coding, along with the constant comparative method, theoretical sensitivity and memo writing.Results: Five themes were constructed from participants' perspectives on human immunodeficiency virus care for children: (1) living with a low-socioeconomic status,(2) lacking instrumental support, (3) experiencing complicated procedures for public health insurance, (4) limited Human Immunodeficiency Virus care services for children and (5) lacking care coordination, policies and practices. Conclusion:Children living with human immunodeficiency virus had poor health outcomes, due to having a low-socioeconomic status, reduced access to healthcare, coupled with a lack of social support services.Impact: This study demonstrated how the social determinants of health negatively impact the quality of care for Indonesian children with human immunodeficiency virus and their families. Understanding these determinants would benefit health professionals, in particular nurses, to consider these factors in their assessment to create a holistic care plan for children living with human immunodeficiency virus and their families. Addressing the social determinants of health would beneficially enhance outcomes and well-being of children living with human immunodeficiency virus health in Indonesia.

Construction of a conceptual model of comprehensive care for Indonesian children with human immunodeficiency virus

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²

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³

et al. 2022

Journal of Pediatric Nursing

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‘Diagnosis, disclosure and stigma: The perspectives of Indonesian children with HIV and their families’

¹

,

²

,

³

et al. 2022

J Child Health Care

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This grounded theory study aimed to explore the subjective experiences of children living with Human Immunodeficiency Virus (HIV) from the perspective of children and their families in Indonesia. Twenty participants were interviewed, consisting of 12 children aged 9–18 years and eight family members. Using grounded theory analysis, this study identified three categories: ‘coping with diagnosis’, ‘disclosing their status’ and ‘living with the stigma of HIV’. Participants responded with shock, denial, sadness, secrecy and often had misconceptions about the virus to the diagnosis of themselves or their children. After diagnosis, children with HIV and their families continuously lived with stigma stemming from individual and societal beliefs about the virus. This stigma manifested in actions such as isolation, disclosure avoidance, secrecy, deception and social rejection. Because of these stigmatisations, many of the participants decided not to disclose the child’s HIV status and used status strategies such as telling lies, keeping secrets and keeping their distance. The participants offered insight into the need for comprehensive programs to address care gaps. This study highlights that health professionals need to develop practical guidelines to support families during the disclosure process, provide psychosocial care for children, and create stigma reduction interventions for children with HIV.

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