Apoio social e repercussões socioeconômicas de famílias de adolescentes e adultos jovens com condições crônicas complexas: um estudo de métodos mistos

Abstract

To analyze the social support received and the socioeconomic repercussions experienced by families of adolescents and young adults with complex chronic conditions. Method: This is a mixed-methods study, using a concurrent triangulation design, conducted in a municipality in the interior of the state of São Paulo, Brazil. Eligible participants were mothers of adolescents or young adults with complex chronic conditions who had taken part in a previous study conducted between 2012 and 2013. Exclusion criteria included resolution of the clinical condition or death of the mother or child. In the quantitative phase, the same socioeconomic questionnaire applied ten years earlier was re-administered, along with the Medical Outcomes Study – Social Support Survey. Quantitative data were analyzed using descriptive and inferential statistics. In the qualitative phase, the mothers participated in semi-structured interviews guided by two introductory questions: a) Tell me about your experiences related to financial and work issues over the past ten years; and b) Tell me about your experiences regarding support from other people (social support) in caring for your child with complex chronic conditions over the past ten years. The empirical material from the interviews was organized and analyzed based on the principles of deductive content analysis. All ethical guidelines for research involving human subjects were followed. Results: Of the 102 children who participated in the original study in 2012, 44 had passed away, five had resolved conditions, and there were two maternal deaths. Of the 51 potentially eligible mothers, 24 participated in the quantitative phase and 12 shared their experiences in interviews. Regarding social support, scores across the five dimensions ranged from 54.17 (tangible support) to 84 (emotional support), with scores below 80 in four out of five dimensions, indicating that mothers perceived a lower frequency of available support in most areas, except for emotional support. In the qualitative data, mothers reported both experiences of partnership and support in various dimensions, as well as experiences of abandonment, misunderstanding, and feelings of loneliness due to limited interaction with family and friends. Despite the challenges, they remained resilient and committed to caring for their children. When comparing socioeconomic conditions over the ten-year period, no statistically significant differences were found in household income; however, there was a decrease in the number of families with homeownership and private health insurance. Formal employment challenges, income supplementation strategies, and high rental costs were frequently mentioned in the interviews, corroborating the quantitative findings. Conclusion: Social support was evaluated as insufficient in most dimensions, aligning with the qualitative experiences in some cases, but diverging in others. While family income remained stable over time, access to assets and services such as homeownership and private health insurance declined. The interview data reinforced the quantitative findings, especially in illustrating challenges related to formal employment, strategies to supplement income, and the high cost of rent.