Lack of guidelines and routines among public health nurses working with children who are next of kin
The analysis pointed to a lack of systematics around working with children who are next of kin. The PHNs in both the child health clinics and the school health service reported that it was purely incidental as to whether they identified a child as being next of kin. This varied, according to the PHNs’ prior experiences with children who are next of kin, the care context and how the PHNs perceived their role. The PHNs in the child health clinics had less experience with children who are next of kin than the PHNs in the school health service. All the PHNs reported being dependent on others to identify children as next of kin. In addition, it differed as to how the PHNs in the child health clinics and the school health service perceived their work related to children who are next of kin. In the child health clinics, the PHNs more often worked indirectly with the children and expressed more uncertainty about their role. This role was a bit clearer in the school health service, where the PHNs worked more directly with the children.
In both settings, the PHNs felt that they needed to be observant to identify children who are next of kin. It was regarded as being up to each PHN as to how to identify the children and what actions to take, and this varied from case to case. Moreover, most of the PHNs regarded communication as an important tool to support children who are next of kin, but there were no clear guidelines. These actions should be performed, which was interpreted as a lack of systematics. Finally, there were no clear guidelines or routines for how children who are next of kin should be followed up over time, or what constitutes their best interest.
Identifying children who are next of kin is incidental
As noted above, the PHNs in both the child health clinics and in the school health service described it as incidental as to whether and how children who are next of kin were identified. The PHNs mainly identified these children at regular consultations or through parents and were seldom contacted by the specialist health service. The PHNs expressed certainty that many children who are next of kin are currently unidentified. As one said,
“To find them, you have to be a detective.” (Int. 4).
The PHNs in the child health clinics and the school health service explained that they typically learned that a child was next of kin through being informed about a parent’s illness. Typically, one of the parents would tell the PHN about the illness—although this was more common when the parent suffered from a physical illness, like cancer, as compared to mental illness. With regards to the latter, the PHNs experienced that the threshold for parental contact was higher. However, one PHN recalled an instance in which a mother contacted her because she needed help—or rather, she believed her child needed support because of the child’s father’s drug addiction:
“One mother asked for help. She was uncertain what she should do. Otherwise, it’s difficult to detect. You can’t detect this without someone is telling you.” (Int. 9).
The PHNs in the school health service described how many children visit PHNs for other reasons, and it was during such a visit that it could emerge that the child was next of kin. One explained:
“Often the child contacts me because they are struggling with something. We always talk about their home situation when they visit me. Then, it becomes clear that everything isn’t okay at home.” (Int. 6).
The PHNs described it as important to identify children who are next of kin. They regarded themselves as dependent on others in this context and stated that they wanted to be contacted by other professionals regarding children who are next of kin: without this collaboration, they might not be able to identify the children. In the school health service, the teacher was described as one such professional, as they are able to observe changes in children and could report this to the PHN. Nevertheless, it varied from school to school or between teachers as to whether they involved the PHN in this matter. One PHN experienced a good dialog with the teachers at her school and had been contacted several times when children had parents who were ill. Others reported the opposite experience:
“The teacher often knows that one of the parents is ill. But they seldom contact me, even if it’s in the best interest of the children.” (Int. 3).
Consequently, in the interviews, the PHNs requested more collaboration with teachers to identify children who are next of kin.
One PHN who worked in a child health clinic described that she had identified a child as next of kin only by chance—this was in a regular meeting with the kindergarten, which had a more general focus. In this meeting, the staff from the kindergarten mentioned a child who had multiple absences because the mother had cancer. Others noted that it was a GP who had contacted them regarding further follow up for certain children. They wondered whether this lack of contact from other professionals was that those professionals believed that the PHNs already knew about the parental illness.
“There are several parents who are ill, and nobody knows about it. Everybody thinks that others know about the ill parents. But the fact is that no one knows.” (Int. 9).
The specialist health service also did not regularly contact the PHNs to inform them that a child was next of kin. One PHN recalled having only one such call, in her 10 years of practice:
“I think I had one phone call from the hospital. That was [for] a recent cancer diagnosis, and they alerted me. The child wanted someone to talk to.” (Int. 4).
Public health nurses must be observant and willing to act
All the participants in this study expressed the opinion that they should have an important role regarding children who are next of kin, although this was not always the case. Thus, they felt PHNs must be observant to cues and be willing to act, with regards to identifying a child who is next of kin.
The PHNs believed they could contribute to the children’s wellbeing simply by being an adult with whom the children could talk and from whom they could receive support. They described being able to help normalize the children’s thoughts and feelings during a difficult time. As one PHN explained:
“Children who are next of kin have a different experience than other children. They really do. It’s important that they can get help to put it into words. It’s important to support them and try to get them to understand why they feel the way they do.” (Int. 2).
As parents did not always explicitly tell PHNs about their illness, the PHNs reported that they tried to be observant towards what the parents did tell them. The PHNs also described that they needed to be patient and observant in their consultations with children, to help the children open up. While it was not always evident at the outset that a child was next of kin, this information could emerge towards the end of a consultation. Often children needed time before they opened up, and the PHNs reported needing to work hard to earn the children’s trust. One PHN referred to a consultation with a 10-year-old girl:
“I had one girl who struggled for half a year before I understood the reason. The girl had a mother with mental health problems, and she had a lot of responsibility at home. She had hardly eaten in the last half a year. She had been getting to school on her own. One day it was too much for her, so she opened up about her situation.” (Int. 2).
Although all the PHNs were willing to take action once they had identified a child who is next of kin, the best course of supportive action was not always clear. One PHN in a child health clinic experienced that it was difficult to support the youngest children directly. She found it easier to help the parents or professionals in the children’s network find the best ways to support the children themselves. She explained that it was more natural for young children to receive support in their normal environment, from people they know:
“I usually support the parents and maybe the kindergarten in how they should support the child. That is a safe place for the children.” (Int. 5).
In some cases, the PHNs found it necessary to refer a child to another professional or involve others, but they noted that it could be difficult to know when to do so. Thus, the PHNs stayed observant even after they had identified and established contact with a child who is next of kin—to be alert to changes in the child, to know when it might be necessary to involve other professionals (e.g., a teacher). One PHN recalled having involved a teacher to adapt the learning situation for a child:
“Sometimes we have to make some changes in school. If the child is always thinking about his ill mother or father, some changes or adjustment will be good for him. At that point, it’s natural to involve the teacher and reduce the demands from school.” (Int. 10).
Although the PHNs in this study regarded it as part of their role to support children who are next of kin, one PHN in a child health clinic pointed to other alternatives for responsible authorities. Besides the PHN, the responsibility for children who are next of kin could also be under the remit of the children and family team, who have other and additional competences.
Communication is an important tool
The PHNs in this study primarily had individual consultations with children who are next of kin. They experienced that communication was the tool they most often used to support these children. However, there were no guidelines regarding the content of these communications—instead, they were based on what the PHNs believed was in line with the individual child’s needs at that time.
PHNs in the child health clinics mentioned that, until the age of five or six, the consultations were often with parents instead of the children; here, their primary role in relation to the child was to check their wellbeing in terms of healthy development.
“One mother was depressed. So, I thought that the child might be affected. The child wasn’t able to say something so my task was to refer the mother to other professionals and to support and guide the father. I couldn’t speak directly to the child, so I just have to see if the child develops in a good way.” (Int. 7).
The PHNs in the school health service reported that children who are next of kin want to have consultations with the PHNs, to talk about things that were difficult to talk about when the parents were present. One PHN said:
“I think that it’s difficult for the child who is next of kin to communicate difficult feelings and thoughts to Mom and Dad if one of them is sick. So, I’m sort of an adult person they can have this talk with.” (Int. 1).
PHNs used drawing as a tool to help the children communicate their feelings—this was largely used in the child health clinics and in the primary school setting. One way they used drawing was to encourage the child to colour pictures illustrating the body, identifying places where they had pain. Another way the PHNs supported children in showing their feelings was to give the feelings different colours, which helped the PHN understand the child’s feelings and initiate communication about them. Certain games were also used to get the youngest schoolchildren to talk about their feelings. One PHN referred to the ‘Hello Game’:
“It’s about what makes you angry, and about what makes you happy. Then, we might move naturally into difficult things.” (Int. 8).
Sometimes it was necessary to involve other people than the parents in the consultations—for example, teachers or GPs. One PHN talked about inviting a child’s GP to a consultation so that the GP could give information to the child about the parent’s illness and prognosis. The PHN’s noted that, when they involved others, it was necessary to obtain consent from the child, but this was never a problem.
Follow up over time is not always provided
The PHNs emphasized the importance of ensuring follow up of children who are next of kin. Nevertheless, it varied as how this was done. Some PHNs had several consultations with a child, while others had only one. It was also mentioned that the PHNs needed to evaluate the follow up to avoid consultations without a plan, as they lacked clear guidelines and routines regarding follow up. However, when the children were visiting the PHN, a follow-up appointment was often made. The PHNs experienced that some children wanted to continue their consultations over time, while others thought it was enough to consult the PHN once and did not want any further follow up.
It also varied as to whether the PHNs followed up with just the child or with the whole family. One PHN described an instance in which she followed up with multiple members of the family, following a parent’s death:
“So, I followed up with both the girl and her brother. I also followed up with the mother. I had a lot of follow-up meetings with them after the father died. I think it was tough but special.” (Int. 3).
This PHN highlighted that, for this family, it was important to follow up with the whole family, but that this was not always the case.
To provide quality follow up, PHNs underlined the importance of knowing each child’s story. They argued that the follow up must be based on each child’s needs. They also mentioned that, at times, a child would deny help. The PHN described it as difficult when being aware of a child who was struggling but did not want help. In such cases, the PHNs would try to motivate the child to come see them by describing their competences and the help they could offer, but this did not always work. One PHN described experiencing a dilemma when a father wanted his 15-year-old son to be followed up by the PHN as he was struggling after his mother’s death, but the son did not want this:
“A 15-year-old boy who doesn’t want to talk is difficult. The father had to almost force him to come to me. We had a long, good talk and my goal was to be able to get him to come back. Unfortunately, I didn’t succeed, no matter how hard I tried.” (Int. 6).
It was reported as beneficial to have group consultations with children. The PHNs had positive experiences with group consultations with children of divorced parents—a clinical experience they tried to transfer to children who are next of kin. One PHN had a positive experience following up with next-of-kin siblings in a group setting. Although the PHNs called for more follow up in groups, they did note that it could be difficult to schedule the group meetings.