Community-based support for children who are next-of-kin for a parent experiencing illness or disability – a scoping review

Abstract

Introduction Children who are next-of-kin, for a parent who experience illness or disability, need support. In Norway, guidelines, routines and structured approaches in the community health services are lacking regarding involving children in the care of a parent and for services when supporting children as next-of-kin. Additionally, no existing international review has focused on support from community health and social services for children who are next-of-kin to a parent regardless of the specific illness or disability. Aims This scoping review examined the current knowledge regarding the types of community health and social services support to children 0 to 17 years old living with a parent experiencing illness or disability. The review also identified children’s support preferences and needs. Methods The scoping review involved five stages; identifying research question; identifying relevant articles; selecting articles; charting the data and finally, collating, summarizing and reporting the results. Results Articles which included community health and social services interventions and children’s preferences or needs for support were included. The foci of interventions included preventive education, peer support, psychosocial support, and interventions focusing on family communication and recovery planning. Articles focusing on children’s preferences or need for support described their wish to be recognized as a next-of-kin, having someone to talk to and professional and peer support. Conclusion The review highlighted the importance of children receiving support according to their preferences. It is important to elicit children’s voices, to ensure community health and social services are developed for and tailored to this population.

Living an ordinary life – yet not: the everyday life of children and adolescents living with a parent with deafblindness

“…It is necessary to provide support to children as next of kin with regard to their situation or preferences (Steffenak et al, 2021 ). For this specific group of children, with a parent with deafblindness, it might be necessary to offer education in sign language for them to be able to better communicate with their parents, as the findings identified that this could be a problem at times.…”

Public health nurses’ experiences working with children who are next of kin: a qualitative study

“…However, previous research does suggest that communicating with children about their parent’s illness is important [ 24 ]. Studies indicate that children who are next of kin need someone to talk to about their feelings, problems and parent’s diagnosis; moreover, this person needs to be able to listen and understand, and to be encouraging and reassuring [ 34 ]. It has been found that children view the communication with the school nurse as an opportunity to discuss their own health and situation [ 35 ], which provides further evidence in support of the PHNs’ use of communication as a tool.…”

“…One study identified that, by participating in groups and sharing their experiences, children feel a genuine sense of connection; they also gain information from their peers about how others have tackled the situation [ 39 ]. Support groups does not necessarily need to be run by nurses, rather, according to a recent scoping review such groups in the municipality setting was seldom run by nurses [ 34 ]. Nevertheless, depending on how the health care is organized in different settings, it is reasonable that PHN could run support groups, perhaps in collaboration with other professionals or with representatives from nongovernmental organizations.…”