Children as next of kin's experiences, practices, and voice in everyday life: a systematic review of studies with Norwegian data (2010-2022).

Aims: This systematic review aims to identify and describe how children of parents with mental illness, substance dependence, or severe physical illness/injury, experience and practise their everyday life. Methods: The review followed the four stepwise recommendations of Harden and colleagues when including quantitative and qualitative studies on peoples' experiences and views. In all, 23 studies with data from Norway (2010-2022) have been included. Brown and Clark's thematic analysis was applied. Results: Three themes were constructed from the reviewed articles: (a) Children practice their relational agency by actively doing practical tasks, occasionally jobs to maintain family economy, and organising fun activities with the ill parent. (b) Emotional ambivalence when their own needs were set aside in favour of the parents. They loved their parents but also felt guilt, anger, disappointment, shame, fear of inheriting the illness and longed for a 'normal' everyday life. (c) Supportive contextual factors were, for example, at least one significant adult recognising them, participating in leisure activities, socialising with friends, and talking with other peers who shared similar experiences as next of kin. Obstructive factors were lack of information and recognition as well as silence and lack of dialogue within the family and/or health professional. Conclusions: There is a strong need for more knowledge and competence on the situation and needs of these children when it comes to professionals, parents and the public. Public health initiatives are needed to honour their agency and recognise their contributions in present time to prevent psychosocial problems later in life.

Norwegian health personnel's contacts and referrals for children of ill parents: an exploratory cross-sectional multi-centre study.

BACKGROUND: In 2010, changes were made to the Norwegian Health Personnel Act. This led to all health personnel being obliged to support the patients' children and families. The aims of this study were to investigate whether health personnel contacted or referred the patients' children to family/friends or public services. We also investigated if there were factors in the family or the services that increased or decreased the degree of contacts and referrals. In addition the patients were asked whether the law had been a help or even a burden. This study was part of a larger multi-site study of children of ill parents conducted in five health trusts in Norway. METHOD: We used cross-sectional data from 518 patients and 278 health personnel. The informants completed a questionnaire addressing the law. Data were analyzed by factor analysis and logistic regression. RESULTS: The health personnel contacted/referred children to different services, but not to the degree desired by their parents. Only a few contacted family/friends, or the school and/or the public health nurse, those representing the helpers who live closest to the child, and thus well situated to participate in help and preventive efforts. The service most often referred to was the child welfare service. CONCLUSION: The results indicate a change in contacts/referrals for children from their parents' health personnel but also reveal remaining needs for support/help for these children. Health personnel should strive to write more referrals and take more contacts than the current study suggests, to secure adequate support for children of ill parents in Norway, as intended in The Health Personnel Act.

Norwegian health personnel's compliance with new legislation on children of ill parents: an exploratory cross-sectional multicentre study.

BACKGROUND: In 2010 the Norwegian Parliament introduced amendments to the Health Personnel Act requiring all health personnel to inform and offer help to their patients' children and families. We evaluated whether health personnel adhered to their obligations outlined in the Act and investigated whether family and health services characteristics were associated with the degree of compliance with the legislation. Our study was part of a larger Norwegian multi-site study conducted in five health trusts across Norway, assessing the situation for families living with parental illness. METHOD: A cross-sectional study using quantitative data obtained from 518 patients 246 children and 278 health personnel was performed. All informants completed a questionnaire, including an instrument corresponding to the obligations in the legislation. Descriptive analyses, factor analysis and logistic regression analysis were used. RESULTS: The legislation was only partially implemented in the clinics of the health trusts. Compared to estimates prior to the introduction of the new legislation, the situation had improved somewhat, but much work remains to be done to fulfil the obligations decreed by law. The more time-consuming the obligations were, the less often they were met. The substance abuse and mental health services followed up on their obligations to a greater extent than did the physical health services. Conversely, children of physically ill parents were better informed by their families than were children of parents with mental health and substance abuse disorders. When asked the same questions, reports from health personnel were more positive compared to those of children and patients regarding the legislation's fulfillment. CONCLUSION: Data suggest that there has been a change in the support offered to children of ill parents. Additional work is required, however, for the Health Personnel Act to function as fully intended.

Factors associated with quality of life for children affected by parental illness or substance abuse.

BACKGROUND: There have been inconsistent findings from studies examining factors associated with quality of life (QoL) for children affected by parental illness. AIM: The aim of this study was to explore factors associated with self-reported QoL in children affected by parental illness or parental substance abuse. DESIGN: A cross-sectional multicentre study. METHODS: The sample included 246 families with children 8-18 years recruited via ill parents who received treatment for severe physical illness, mental illness or substance abuse in specialised health services. We performed multiple linear regression analyses to examine factors associated with the children's self-reported QoL. MAIN OUTCOME MEASURE: KIDSCREEN-27. RESULTS: The children's self-reported QoL was positively associated with the ill parent's self-reported physical health, the children's self-reported social skills, the degree to which other adults took over the ill parent's responsibilities, provision of sibling care, provision of health care for the ill parent and positive outcome of caregiving. The children's QoL was negatively associated with the children's self-reported responsibilities due to parental illness, provision of emotional care for the ill parent, negative outcomes of caregiving and external locus of control. The model explained 63% of the variance (adjusted R2 ) in children's total QoL. STUDY LIMITATIONS: Sampling bias may have occurred during recruitment. CONCLUSIONS: The findings suggest factors of importance for the children's QoL. Clinicians should assess whether an ill parent's physical health may influence negatively on their ability to perform daily responsibilities at home and care for their children, and clinicians can use children's self-reported QoL to identify children who are most negatively affected.

Children with ill parents: extent and nature of caring activities.

RATIONALE: Previous studies have shown that children may take on higher extents of caring activities if their parents are affected by severe illness or disability, especially when their parents lack access to formal and informal care. AIMS AND OBJECTIVES: This study examined the extent and nature of caring activities done by patients' children; differences in caring activities between different types of parental illness; factors associated with caring activities. DESIGN: An explorative cross-sectional multicentre study. METHODS: Parents as patients in specialised healthcare services, and their children, were recruited from five health trusts in Norway. The sample included 246 children aged 8-17 years and their 238 parents with severe physical illness (neurological disease or cancer) (n = 135), mental illness (n = 75) or substance abuse (n = 28). MAIN OUTCOME MEASURE: Multidimensional Assessment of Caring Activities (MACA-YC18). RESULTS: A large number of children with ill parents are performing various caring activities. Increased caring activities among children due to their parent's illness were confirmed by their parents, especially with regard to personal care. We found no significant differences in the extent of caring activities between illness types, but there were some differences in the nature of these activities. Factors significantly associated with the extent and nature of caring activities were as follows: better social skills and higher external locus of control among the children; and poorer physical parental health. Parent's access to home-based services was limited. STUDY LIMITATIONS: In recruitment of participants for the study, a sampling bias may have occurred. CONCLUSION: To promote coping and to prevent inappropriate or extensive caring activities among children with ill parents, there is a need for increased access to flexible home-based services adapted to the type of parental illness.