Experiences of families of children with cancer regarding resilience, post-traumatic growth and disease process

The aim of this study was to examine the family experiences of the childhood cancer disease in the context of the System Approach. For this purpose, the sample of the study consisted of 12 families including 24 parents and 6 sisters and 6 brothers in the age range of 7- 18 years from 8 families. This study was based on a phenomenal approach of qualitative research designs. Qualitative data were obtained from semi-structured interview form approach based on face-to-face interview method. The obtained data were analysed by using inductive and content analysis approach. According to the results of the analysis, family members exhibited various behavioural and emotional reactions to the diagnosis and some families evaluated the health institution and searched for a new institution. They re-organized their lives in the process of diagnosing the disease and the next phase. In this context, family members began to organised their life for sick children and have new responsibilities and / or increased existing responsibilities. In addition, while family members had to hide their painful feelings, they had to support their family members emotionally, to isolate their lives, to implement domestic preventive measures, to leave the work and to move another city. In addition to the changes they made in their lives, they faced with the stresses and stressors arisen from different sources. The first of these, family members continued to exhibit behavioural and emotional reactions in the process; the second was related to parent and child (sibling) relationships and the difficulties in partner relationships. The third was regarding the attitude, behaviour and emotion of sick child and his/her loss of normal life. Fourth was the difficulty caused by secondary effects of disease and treatment, such as treatment side effects, losses and painful practices. The fifth was related to financial and business issues in the form of treatment costs, deterioration in work life and financial losses. The sixth consisted of community-based challenges, such as labelling the sick child, giving advice parents and telling negative results of disease, asking questions about the case, and people getting away from the family members, feeling lonely in the long run. Finally, dreadful process of treatment, dead of some sick children, and the need for economic funding for special treatment has been associated with stressors in the process. In addition, both parents and siblings expressed the need for financial issues and ensuring family integrity. In addition, parents expressed the need for social emotional support and hopeful experiences, and siblings wanted the sick become better and their parents share their feelings. Family members tried to cope with the challenges they faced and recover from the difficulties of illness by the help of support sources they had and the protective processes and factors they created. The first group of the support resources was family based such as family affinity, family flexibility, family meanings and effective communication. Second, social and emotional support provided by the wider family members namely support for other children, participation to the treatment process, providing food and helping cleaning, money support, providing transportation and clothes. The third composed of the attentive-respectful attitude of the health service team, inoculation of hope, guidance and information provided by the team. The fourth consisted of information, guidance and solidarity provided by parents with cancer-affected children. Fifth, social-emotional support, financial aid, home care and tooling provided by the parent's / family's social environment; social-emotional support provided by friends and teachers for the siblings, and social support in the form of the interest of the statutory persons. The sixth consisted of the work flexibility provided by the workplace and the sending of advance money support and aid. Lastly, financial aid and assistance provided by the state institutions and some non-governmental institutions and other institutions providing schools, clothing, food and financial help for the sick child also mentioned by the families. In addition to the sources and support they had family members showed a variety of behaviours that can be grouped under three headings namely an evaluation-focused, problem-focused and emotion-focused to cope with this process. Both parents and siblings used problem-focused coping in the least of their ways. Parents were more likely to used emotional-focused coping behaviours in the form of religious rituals and religious-oriented coping behaviours, while siblings were more likely to use emotional support, socialization and emotion-focused coping behaviours. Despite the difficulties they faced, family members reported positive changes in interpersonal relationships, personal perceptions, values of life, and spirituality in terms of post-traumatic growth. As a result, this study supported the findings of studies regarding family experiences with cancer reported in the literature. However, while the results provided detailed information about the difficulties faced by family members, they also demonstrated the sources and responsibilities that families and family members had in response to these difficulties, as well as the positive changes in family members in such a challenging life situation.