The health personnel reported that they contacted public services on behalf of the patients and families more often than they contacted the patients’ network of friends and family members. This may indicate a potentially unused resource among the patients’ network of friends and family. Studies of meetings with friends and family members show encouraging results and could probably be used more often. Furthermore, such networks often want to contribute, but they may be uncertain about how to go about doing so. A Norwegian research team that has studied these challenges and opportunities has identified ways for these networks to help. They found that family and friends can be valuable helpers [
53‐
55].
The patients reported that health personnel had contacted friends/family and local services twice as often as the health personnel themselves reported contacting these sources. Moreover, the health personnel reported more often than did the patients that the children were mentioned in the discharge letters to the GP. This could indicate some ambiguity in the communication between patients and health personnel, i.e. that health personnel did not inform their patients properly on what they did for their patients’ children. Previous research has reported similar results [
35‐
37]. Disappointments may result when people have different expectations. This emphasizes the importance of securing a mutual understanding between patients and health personnel, indicating health personnel’s need for communication skills. Another Norwegian study reported likewise [
56]. Another reason may be the quite large differences in response rates between patients and health personnel.
Referrals of the children
Among the health personnel, 10% reported that they had referred patients’ children to other services, while 20% of the patients reported that this had been done and 40% of the patients wanted referrals for their children. Again, this may indicate communication problems between patients and their health personnel.
Our numbers indicate that a minority of the children who needed help actually received it, which is in line with other research from child and adolescence mental health [
16,
35‐
37]. A Norwegian study confirm that even when CHIP are identified, they may not be referred to appropriate services [
57]. Another cross-sectional Norwegian study, where 23,167 outpatients in mental health services participated, found that 36% of these patients’ children were referred to a service, and that 58% of them were considered not having needs for that [
58].
These findings are in accordance with a 2006 review that concluded that only a few children who were experiencing mental health problems received help [
59]. The review found that one-third of the children with mental health needs were receiving treatment, and that the parents’ assessment of their children’s needs was a key to the first step in help-seeking. Another review from primary health care identified a broad range of barriers related to identification, management and/or referrals, including lack of providers and resources, waiting lists, and financial restrictions [
60]. Likewise, Landeweer et al. in their review found that the ill parent, the professionals, the organization of care and the culture-paradigm could all be barriers to family involvement when a parent is ill [
61]. A review from the mental health field disclosed a number of barriers to securing help for the patients’ children, such as not recognizing whether the patients are parents, not having adequate policies and procedures, and lack of competence in regard to families, children and parenting [
25]. An implementation study, conducted as part of the CHIP study, pointed to organizational and professional factors and appointing of child-responsible personnel as important for the implementation of the new efforts in health services [
62].
Even if not sufficient, our findings indicate a positive change in whether health personnel refer their patients’ children and how they understand the needs of these children. This is in accordance with recommendations from several professionals in this field [
8,
25,
26,
63,
64].
The informants differed in regard to the services to which they reported having referred the children. According to the health personnel, they referred the children primarily to the child welfare service and, thereafter, to child and adolescent mental health service and the public health nurse. This is in line with another Norwegian study of adult mental health outpatients [
58] where patients reported that most of their children were referred to the child welfare service, and thereafter to the public health nurse and the school. In particular, parents’ wishes regarding referrals to the school and the public health nurse were not in agreement with the reports from the health personnel in this study. The health care system in Norway and many other countries is arranged to provide assistance at the lowest possible level. It could be suggested that for CHIP, it is most appropriate to receive support from people they are close to and at a local level, such as family members and friends, schools and community nurses. Helpers who know the children well might increase the possibility of providing tailored support and could also be responsible for further referrals. A review found that, even when parents asked for additional help for their children, only one-third of them were helped by the child and adolescent mental health service, and that schools are important pathways to additional help [
59].
In Norway there are a range of possible offers for CHIP, as economic support, for example for participating in spare time activities, time with an adult social contact, extra support from the teachers, help with homework, contact with the community nurse, time with another family during weekends or periods of time, treatment in child and adolescent mental service, and also inclusion of friends and family. Many of these offers for children are managed by the child welfare service.
The high referral rate to the child welfare services in our study could indicate that these options for prevention and help, most of them on a local level, were utilized as intended. However, parents wanted such help more than their children actually got, which could imply that the families/children’s needs are not appropriately detected. Referrals to the child welfare service in Norway are usually based on parental functioning.
Patients reported that nearly half the children were referred to the child welfare service, but only 14% of the health personnel confirmed this. This could be due to both parents and health personnel having difficulties talking about care issues, especially in the substance use services, and some parents being uncertain or fearful about referrals. Fear of talking about children’s needs can lead to children receiving less help than they need. A qualitative paper from substance use services found that health personnel had a tendency to choose either the children’s or the parents’ perspective [
65].
Two parameters correlated with contacts/referrals: the children’s degree of mental symptomatology and the type of health service their parents received.
Children who suffered the most from mental health problems, as measured by the SDQ, were the subjects of the most contacts/referrals from the health personnel. This indicates that the parents’ health personnel were able to identify those children most in need of help, even if not to the degree desired by the parents.
The mental health and substance use services contacted/referred CHIP most often. This seems appropriate, as the literature suggests that these CHIP, in general, suffer the most distress [
17‐
20]. It may also be that traditions for contacts/referrals in those services play a part here and that children whose parents are being treated in the physical health services may not be identified and helped according to their needs.
Several parameters were not associated with contacts/referrals. Studies of children of chronically ill patients have indicated that the youngest children and the oldest girls live with the most elevated risk [
6]. Age did not turn out to be a factor related to referrals in our study. There are reasons to worry about the fact that the parents’ symptomatology and duration of symptoms did not play a part in our study, as the above-mentioned study found that those factors correlated with mental health problems for the children [
6].
The helpfulness of the legislation
A minority of the patients reported that the health personnel had informed them explicitly about the legislation. However, a majority had been asked if they had children, which implies that the health personnel were aware of the legislation. In line with this, it is understandable that a minority of patients reported that the legislation had been of help since they may not have been aware of the connection between the legislation and their being asked whether or not they had (minor) children. Only a few experienced the legislation as a burden, except for those receiving health services for substance use where 29.5% reported that the legislation felt like a burden.
This is a highly significant finding that requires further attention. People with substance use disorders, especially if they are parents, are often looked down upon and stigmatized [
66‐
69]. Parents might face blame, a lack of respect and support that is shown to other patients. Creating a positive working alliance is, indeed, a special challenge for professionals in substance use services [
65]. It is, therefore, important that health personnel have good communication skills that allow them to support patients when discussing difficult issues concerning their parenting and their children [
56]. It is a challenge to keep a good working alliance with a patient with a substance use disorder, when pointing out that the patient’s child needs extra support, because of this. This may be a reason that patients with substance use perceive the legislation as a burden.
Strengths and limitations
A strength of this study is its multi-centre design, as the five health authorities cover 34% of the Norwegian population and represent hospitals of different sizes as well as different socio-demographic areas. The inclusion of all fields of health care, i.e. physical health, mental health and substance use services, further broadens the picture and has provided new knowledge about the differences between the health service domains, as has the inclusion of different informant groups. Another strength of the study was that we managed to recruit a large number of participants.
A challenge of this study is that it is based partially on a questionnaire that has not been tested over time or validated. The questions about how health personnel comply with the legislation were developed by the study group. However, this did allow us to ask specific questions closely linked to the wording of the law, which would not have been achievable with any other questionnaire. The other questionnaires used for this study are widely used and validated.
The challenges of recruiting families living with illness are well-documented [
70]. Our recruiters found it difficult to get patients and health personnel involved. We do not know the inclusion rate of families, as we did not receive reliable data on the number of patients who were informed about the study and invited to participate. Clinicians could have forgotten to inform about the study, or been reluctant to inform the patients and thus, we assume that a smaller portion agreed to participate.
Our ethical approval did not allow us to ask why patients did not want to participate. The recruiters’ impressions were that those patients struggling the most with their illness and everyday life were the most hesitant. It is possible that patients suffering from substance use were in a better state while hospitalized and interviewed for the study than they had been earlier. Moreover, many of them who had children did not have custody of them and, therefore, could not be included in the study. According to the recruiters, some health personnel did not inform their patients about the study because they considered their patients too vulnerable to be asked about their children. These factors taken together could have had a significant influence on how representative our group of informants was. It may be that the situation, in general, for families living with illness may be even more severe than our data indicate. One could ask whether we chose the most optimal recruiting procedure. The data are a bit dated but still interesting as they remain the only data broadly investigating Norwegian health personnel’s actual adherence to The Act. Therefore, the results of this study may be useful as a basis for further work on implementing new routines.