Replication Data for: Chronic Sorrow

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. <br>
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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. <br>
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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.