These data originate from a study on chronic sorrow in parents conducted between 2020-2023 in the Netherlands. Chronic sorrow refers to ongoing feelings of grief and loss experienced by parents in relation to their child’s disability or chronic illness. The purpose of the research was to examine the lived experiences of parents and subsequently explore their implications for how healthcare- and social work professionals can support parents.

As an overarching design, Participatory Action Research (PAR) was used. PAR involves collective learning on a shared problem and the collaborative production of knowledge within a community.

The study consisted of two parts. The first part was an Interpretative Phenomenological Analysis (IPA) study on the lived experiences of six parents with severely disabled children. The second part of the study involved engaging in two three-hour sessions in homogeneous groups consisting of parents of a disabled child and professionals, followed by three three-hour sessions of mixed groups. It involved discussing the impact of chronic sorrow on the participants’ lives and work and explored how chronic sorrow in parents impacts daily communication between parents and professionals in caregiving contexts.

This dataset contains the interview questions and instructions, as well as the topic list used during the interviews with parents of children with severe disabilities.

Furthermore, (partial) datasets will be uploaded to this dataset in the future. All data is currently being evaluated for suitability to upload. Depending on the success of the pseudonymization process, the dataset may consist of highly pseudonymized transcripts of the interviews and/or highly pseudonymized dataset(s) containing the coding process and code collection. Additionally, when the dataset(s) are uploaded, blank versions of the informed consent forms will be included as well, in addition to any other necessary data documentation to aid interpretation of this data.