| Sažetak (engleski) | In recent years, there has been a growing interest in the scientific community in researching the family quality of life, defined as the dynamic sense of family well-being collectively and subjectively defined by family members. This involves an interaction between individual and family-level needs, which can change as a result of various significant family events, including the birth of a child with developmental difficulties. Specifically, a child's developmental difficulty, besides its comprehensive impact on the child's life, also has a significant influence on the life of the entire family. Some researchers report increased parental stress and decreased quality of life in these families. Families with a child with developmental difficulties face various negative consequences affecting all aspects of their lives - often experiencing financial problems, strained emotional relationships among members, higher occurrences of depression, changes in employment and leisure activities, and limitations in social life. They also deal with increased caregiving needs, more complex care requirements, modifications in communication strategies with the child, collaboration with various professionals, and making difficult medical and educational decisions for their child. When examining changes in stress levels over time, results show that stress decreases over time, and the quality of life improves. Although the previously mentioned negative consequences are numerous, comprehensive, and far-reaching, according to some authors, having a child with developmental difficulties in the family can, in itself, have positive consequences, including even post-traumatic growth. In investigating parental stress related to caring for a child with developmental difficulties, it is important to consider the specific type of developmental difficulty and its clinical presentation. Key factors to consider include difficulties in providing care, time invested in caring for the child, and the presence of demanding child behaviors. Developmental difficulties that involve a high level of dependence on family members, require demanding care, or hinder communication with other family members generally negatively affect the overall family quality of life. Examples of developmental difficulties significantly impacting family life include atypical dermatitis, congenital heart defects, leukemia, bronchial asthma, recurrent middle ear infections, cerebral palsy, autism spectrum disorder, and hearing impairment. Hearing impairment is the inability or reduced ability to receive, conduct, and register auditory stimuli due to congenital or acquired damage, underdevelopment, or impaired functionality of the auditory organ, auditory nerve, or auditory centers in the brain. Hearing impairment is the most common anomaly at birth and the most common sensory disorder. It affects four essential aspects of a child's functioning: cognitive development, language acquisition and speech, and, consequently, communication with the environment, socio-emotional development and education, as well as future employment opportunities. The realization of hearing loss in their child is highly emotionally intense, stressful, and challenging for hearing parents. The reaction of hearing parents upon learning about their child's hearing impairment is similar to the reaction experienced in significant loss, and they go through typical stages of mourning. In addition to coping with intense emotions related to their child's hearing impairment and going through the adaptation process, parents need to learn and understand a significant amount of information about hearing impairment and its implications. Furthermore, these parents are required to make various significant decisions related to hearing aids, communication methods, interventions and treatments, and educational interventions for their child. They constantly face prejudices from their environment and must continuously advocate for their child's rights. Various events often remind them of the difference between their expectations and developmental expectations and their child's achievements. All of this contributes to constant emotional stress. Literature reviews indicate reports of a potentially widespread and significant impact of a child's hearing loss on various aspects of family quality of life, including emotional well-being, family interactions, parenting styles, physical well-being and support for special needs. Several studies report elevated levels of stress and reduced quality of life among parents of children with hearing impairment. Based on the above, it can be concluded that parents of children with hearing impairment experience chronic emotional and social stress due to their child's hearing impairment. In addition to life events, sources of stress can also be social environmental conditions that cause social stress. Individuals belonging to minority groups, subcultures, or countercultures are particularly exposed to the negative consequences of social stress since prejudice, discrimination, and isolation by the majority group are part of their daily lives. From the theory of social stress comes the concept of minority stress, defined by Meyer as the chronic and increased level of stress experienced by members of stigmatized minority groups, resulting from prejudice, discrimination, lack of social support, and other factors specific to belonging to a minority group. This stress is associated with socially ascribed subordinate status, leading to more stressful events, resulting in reduced self-confidence and feelings of insecurity, as well as physiological and psychological stress experiences. This stress adds to the usual daily stresses that individuals typically experience, leading to various negative consequences, including weakened mental and physical health. While the minority stress model has been developed and mostly applied to the LGBT population, over time, it has been extended to other populations that can be considered minorities, and stigmatizing stressors have been confirmed for race, nationality, religion, and chronic illnesses. The author of the minority model emphasizes that this model should be used as a conceptual framework for understanding stress experiences only in populations that have been shown to have significantly elevated stress levels, which parents of children with developmental difficulties and hearing impairment certainly are. Until now, the minority stress model has not been applied as a conceptual framework for understanding stress in parents of children with hearing impairment. Justifying the use of this approach is the concept of "associative stigma," according to which stigmatization affects not only those who possess the stigmatized condition but also those connected to that individual, such as family members, friends, and caregivers. Research has found that parents of children with hearing impairment report that the stigma associated with hearing impairment significantly influences how they identify themselves, how they are perceived by the community, and the decisions they make. The aim of the conducted research was to validate Meyer's minority stress model as a conceptual framework for understanding the experience of stress in hearing parents of children with cochlear implants and the consequences of this stress on the subjective quality of life within the assumptions of Cummins' homeostatic model of subjective quality of life. The research used an embedded mixed-methods design, meaning that the research is based on a quantitative approach within which a qualitative approach is embedded. This type of design was used because integrating findings from qualitative and quantitative research allows for a more comprehensive description, better understanding, and more accurate interpretation of the complex processes of stress and the quality of life of parents of children with cochlear implants. For the purpose of better research planning and justification of using the minority stress model as a conceptual framework, a qualitative pre-research was conducted to establish the conceptual framework settings that would be used in the quantitative study and to quantify variables related to research questions. Subsequently, a quantitative study was conducted with the participation of 75 participants, using various objective measuring instruments. Finally, a qualitative study was carried out, involving in-depth interviews and focus groups to deepen and connect the data obtained from the quantitative research and to explain the findings and processes that occur. The results of the conducted research show that the experience of parents of children with cochlear implants is complex, as are the relationships between various related variables, including constructs of proximal and distal stressors, stress experiences, risk and protective factors, and quality of life and health. According to the results, the subjective assessment of the quality of life in parents of children with cochlear implants is significantly lower than the assumed theoretical value according to Cummins' homeostatic model of subjective quality of life. Qualitative research provided insight into the underlying processes of this result - parents of children with cochlear implants identify themselves as members of a minority group due to their child's hearing impairment. Consequently, they experience all the negative aspects of minority status, including discrimination and social isolation. Although participants in the qualitative research suggest that environmental discrimination is less of an issue, and ignorance is more prevalent, quantitative results indicate that group discrimination significantly contributes to increased stress levels. The sources of stress for these parents can be divided into proximal and distal stressors. Proximal stressors are directly related to the child's hearing impairment and the specific needs arising from it. These stressors include difficulties in caring for a child, medical procedures, rehabilitation, applying appropriate interventions, and making decisions about hearing aids, communication methods, and cochlear implantations. Distal stressors are indirectly related to the child's hearing impairment and include prejudice, discrimination, lack of information, lack of social support, and financial problems. The obtained results indicate a significant relationship between stressors related to hearing impairment and stress experiences, confirming the influence of these stressors on the perceived quality of life. Furthermore, the results indicate a significant relationship between stress experiences and subjective quality of life. Sources of stress for these parents are indeed numerous. Research results show that various distal and proximal stressors are responsible for elevated stress levels in parents of children with cochlear implants. In the quantitative study, significant predictors included the child's demanding nature, the child's non-adaptability, unmet expectations of the child, insufficient emotional support from family and friends, perception of group discrimination, and dissatisfaction with the material situation. Risk factors confirmed in both the quantitative and qualitative parts of the study include impaired child functioning and communication difficulties with the child, which were also confirmed as sources of stress. In this aspect, the importance of parental perception of the child's functioning and consequent concern for their future is clearly emphasized. Protective factors confirmed include social support and religiosity. Qualitative research found that social support primarily comes from other parents of children with cochlear implants and parents of children with other developmental difficulties whom the participants orient themselves towards, simultaneously isolating themselves. Parents confirm the importance of social support for coping with stress. This finding underscores the importance of social support and highlights the importance of its institutional organization. Previous research has pointed to negative consequences on the mental health of these parents, and the few studies addressing physical health suggest that it is also compromised. Both the quantitative and qualitative research conducted confirm physical health problems caused by stress. Furthermore, qualitative research reveals that participants have accepted mental health issues as part of the overall situation, neglecting physical health, which is certainly a cause for concern and calls for health promotion, prevention, and timely treatment of health problems. Contrary to the assumptions of Cummins' homeostatic model of subjective quality of life, participants in this study did not return to their previous, normal level of subjective quality of life. Although it was assumed that, despite chronic minority stress posited by Meyer's minority stress model, the quality of life would significantly improve over time and return to a normal level, the results of the quantitative study indicate otherwise. Based on findings from the literature, it is possible that this is at least partially because aspects causing stress change over time, as do family resources for coping with stress. The importance of this research lies in expanding our understanding of the specific needs and stress experiences of parents of children with hearing impairment and cochlear implants, as well as the factors that contribute to their subjective quality of life. The obtained results contribute to the scientific community's awareness of the challenges faced by these families, emphasizing the importance of providing appropriate support and interventions. In conclusion, parents of children with hearing impairment, specifically those with cochlear implants, experience elevated stress levels related to their child's condition, which significantly influences their subjective quality of life. Meyer's minority stress model provides a valuable conceptual framework for understanding the experiences of these parents, considering the unique challenges they face due to their child's hearing impairment. Recognizing and addressing the stressors associated with minority status in this context is crucial for developing effective support systems and interventions to enhance the well-being of both parents and children. |
