Ethical dimensions in encounters with families with a disabled child.

Parents of a disabled child experience complex situations with varied and sometimes contradictory needs, interests, and emotions, and with ambiguities related to the possibilities for both child and family in the context of contemporary normative ableist thinking. In this review, we propose ethics based on 'flourishing' and 'thisness'; with the goal to encourage people to see encounters with parents and families as emergent experimental spaces in which we remain open and interested in developments rather than in fixed ideas. Working with parents with lived experiences of raising a disabled child, we explore the collaboration processes among families, their support networks, and (medical) professionals. These encounters require an ethical perspective, with emergent listening as central to the process. A story is used to highlight the importance of listening as part of an assemblage, recognizing what is already there and affirming the potential for change. Engaging in ethical encounters with families with a disabled child asks for epistemic humility and the willingness to be unsure. Rather than offering step-by-step strategies, we open up for the encounter with the 'incalculable other'.

Relational ethics, informed consent, and informed assent in participatory research with children with complex communication needs.

There is a need for qualitative participatory research involving children with intellectual disability and complex communication needs (CCNs), but procedural ethics cannot always adequately respond to the associated realities. To tackle this challenge, procedural ethics can be expanded with relational ethics to engage with consent and assent practices in participatory research projects. By drawing on several key incidents of participatory research with children with CCNs, we explore the complex moral spaces and times of ambivalent and iterative (dis)engagements within research processes. We reconceptualize the consent/assent terrain as a relationally constituted process, more aligned with the overall epistemological frameworks of participatory research and ensuring (disabled) children's ongoing and meaningful involvement in research. WHAT THIS PAPER ADDS: Reconfiguring informed consent and assent is an ongoing and unfinished process. Both relational and procedural ethics are needed. Informed consent and assent represent an ongoing process, not a one-time event. Respect for research participants demands that they be included in the analysis of the data and writing of the results.

"I Grew Up Amidst Alcohol and Drugs:" a Qualitative Study on the Lived Experiences of Parental Substance Use Among Adults Who Developed Substance Use Disorders Themselves.

Experiencing parental substance use (PSU) has been associated with a heightened risk of developing substance use disorders (SUDs) in offspring. The primary goal of this study was to explore perspectives of adult children with lived experience of PSU who also developed SUDs themselves through first-hand experience. This study was conducted in Flanders (Belgium). A qualitative exploratory research design was applied. Seventeen semi-structured interviews were conducted with adult children of parents with SUDs (range: 29-48 years) who themselves had developed SUDs. All interviews were audio-taped and transcribed verbatim. Three overarching themes emerged through thematic analysis: 1) loneliness and neglect in childhood; 2) stigma and the self; and 3) the role of social connection in substance use and recovery. The narratives highlighted the central role of feelings of loneliness, isolation and belonging among children of parents with SUDs in childhood and adulthood. Increasing public awareness on the impact of PSU on children and accessible support is needed to overcome stigma and remove barriers to social inclusion for children of parents with SUDs. Findings may prove valuable in informing policy, program and treatment development aimed at breaking maladaptive intergenerational cycles.

Resistance and resilience in a life full of professionals and labels: narrative snapshots of Chris.

In this article, the authors relate the life of Chris through narrative snapshots. Chris asked the authors to tell her story. They decided that it could be used to provide an insight into the different ways people with labels are confronted with professional practices and rituals. Although Chris lived a "tough life," her story is full of resilience and resistance. Chris will be kept in the authors' memory as a strong woman, a teacher, and a friend.