Parent support initiative needs assessment on early NCD prevention in adolescents

Indonesia is experiencing rapid change in the pattern of disease in the population as a result of the increasing rate of non-communicable diseases (NCDs). Adolescence is a critical period for encouraging the adoption of healthy lifestyle behaviours that will optimise prevention of NCD across life course. The quality of parenting is known to have a significant impact on developing healthy lifestyles.

However, there’s a significant lack of support for parents of adolescents generally, let alone for parents of those with chronic illnesses or special needs. Despite having a large population of adolescents whose future health is at risk from factors such as smoking, poor diet, poor exercise habits, and an ignorance of mental health, there haven’t been specific supportive parenting materials from the Indonesian Ministry of Health, which instead focuses on newborns and under-fives. There is also little information or discussion by Indonesian parents of what skills they feel they need, and how they might be interested in accessing parenting information.

This study is an important first effort to address this gap in parenting education and to move towards better understanding the role that parents might play around NCD prevention in adolescents. Our study focused on identifying the support needed to improve the skills of both parents of adolescents in general, and the parents of adolescents with chronic illnesses or special needs. We addressed four key aims through qualitative methods with two groups of parents (of adolescents in general, and parents of adolescents with chronic illness or special needs). This study aims to identify the knowledge and skills needed, potential barriers, and the best method of delivery of educational support for parents.

Methods

The research conducted focus group discussions (FGDs) using a semi-structured interview with six groups of parents; four groups of parents with different demographic backgrounds, one group of parents of adolescents with chronic illnesses (e.g. thalassemia, cancer, diabetes mellitus type I) and one group of parents of adolescents with special needs (e.g. intellectual disability). For each group, a trained moderator conducted the discussion, assisted by a member of the research team to take notes and ensure that all points were covered. An anonymous questionnaire was completed by each parent at the time of the discussion to access personal and parenting-style data. We undertook discussions with parents from both rural and urban settings. The rural setting had two groups: one on Java island (Serang, Banten Province) and one outside of Java (Padang, West Sumatra). The urban setting, Jakarta, also had two groups: from lower and higher socioeconomic backgrounds. Group of parents of adolescents with chronic illnesses and special needs were gathered from Cipto Mangunkusumo Hospital, Jakarta. Each group consisted of five to 10 parents, and each spouse was counted as individual representation to gain more individual insight around the issues.

The discussions covered a range of topics: parenting issues in general; changes and challenges of parenting in the transition from childhood to adolescence; knowledge of NCDs and preventions; difficulties parenting adolescent children in general; strategies on developing healthy behavior and incorporating healthy lifestyle in daily living; obtaining parenting support from families, communities or professionals; the knowledge and skills needed to help adolescents adopt healthy behaviors needed for NCD prevention; and, whether they were interested in more information about parenting, and their preferred format to access that information (e.g. parenting group, app, website etc). All discussions were audio-recorded and transcribed for content and thematic analysis. Themes were compared across the four demographic areas to determine any similarities or differences in needs.

Findings

The parents from lower socioeconomic backgrounds were found to have challenges in communicating with their adolescent and a lack of knowledge of NCD prevention and healthy behavior (most fathers were smokers). Most had no boundaries for gadget use, encouraged underage (unlicensed) motorbike riding and had less priority for healthy food. “I need support to know how to deal with adolescent; I need the knowledge about adolescence and health,” one said.

Meanwhile, parents from higher socioeconomic backgrounds had more challenges in controlling the use of technology, although they had set limits on gadget use. “I still need support for parenting to teen, especially how to equip them to resist bad influence and how to develop good communication habit”.

Those whose children had chronic illnesses said “It is easier to implement healthy lifestyle after my child was diagnosed to have chronic disease. Our family is also more inclined to commit to a healthier lifestyle.”

The parents of adolescents with special needs had more problems dealing with puberty and more concern about their adolescent’s independence and the impact of stigma on adolescent wellbeing.

Parenting support programs that provide basic knowledge and skills on parenting adolescent are needed. There were two methods mentioned by parents: interactive and practical mobile applications, and offline support programs through existing community-based activity. There was more support for online programs.

Conclusion

Parents most needed basic information about understanding adolescence, communication skills and puberty. Although knowledge, attitude and practice around NCD prevention were not good enough, NCD has not become a priority issue in parenting adolescents in general. Support programs are needed by all kinds of parents, especially those from lower socioeconomic backgrounds and parents of children with special needs. An online support program was preferable across all socioeconomic backgrounds.

Outputs

  • Paper presentation in Annual Scientific Meeting of Indonesian Pediatric Society in 2019
  • News article

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