Objective: The majority of parents with a disabled child experience chronic sorrow, characterized by recurrent feelings of grief and loss related to their child’s disability. There is a significant lack of research on parents’ lived experiences of chronic sorrow, which limits our ability to understand parents’ needs and provide proper support. Design: Interpretative Phenomenological Analysis (IPA) was conducted based on in-depth interviews with six parents of severely disabled children. Results: In the literature on chronic sorrow, an important aspect has been consistently overlooked: the particular position of being a parent, experiencing an awareness of being ultimately responsible for their children. The analysis revealed how this awareness, experienced as a deeply felt ethical commitment, unconditional, largely in isolation, and without a limit in time, shaped the experience of chronic sorrow. Because of this awareness, the parents experienced themselves facing a Herculean task of navigating their intricate motions while struggling to maintain their ability to function. Conclusions: By revealing the importance of considering the unique parental position, the study enriches the concept of chronic sorrow, simultaneously offering insights into what it means to be a parent of a disabled child. These insights can improve care professionals’ responsiveness to parental needs.
With these results at hand we developed a new program and evaluated it . In this presentation we will reflect on the merits of this program but also share with you the insight gained from other studies that we did to in the context of the program. First a study on the prevalence to give us an indication of how many people with SMI have responsibilities as a parent. Working through these figures we have been wondering about the international differeecs in this aspect. Maybe you as an international crowd can help us to gain more insight in this subject. Second I will describe the intervention that was developed based on the imput of clients and building on the vision and methods of the Boston approach to rehabilition. At this moment more then 100 counselors are trained in this approach. To evaluate the intervention offered and establish some figures on its effectiveness, a quasi experimental study was done and I will present some of the results in the ample time we have. When developing the program and making an effort in implementing it in mental helath care, we became aware that there was still a lot to learn from both parents and mental health workers. During the experimental study, we learned that not many parents actually ask for support and that workers were enthousiastic about the training but did not find ways to implenent the program at full course. In this line of reasoning it became important to speak with different parents with SMI about the meaning of parenthood, how they succesfully dealt with the demands of parenting, waht it meant for their recovery and what kind of resources they used.
• The combination of coping with mental health problems and caring for children makes parents vulnerable.• Family-centred practice can help to maintain and strengthen important family relationships, and to identify and enhance the strengths of parents with a mental illness, thus contributing to their recovery.• Parents with mental illness find strength for parenting in several ways. They feel responsible, and this helps them to stay alert while parenting; parenthood also offers a basis for social participation.• Dedication to the parental role provides a focus; parents develop strengths and skills as they find a balance between attending to their own lives and caring for their children, and parenting prompts them to find adequate sources of support and leads to a valued identity.• Practitioners can support parents with mental health problems to set and address parenting related goals.
