University of Nebraska Press
ABSTRACT

Swedish health care legislation passed in 2010 obliges professionals to pay attention to the children of parents with mental illness. Our aim was to explore professionals' perceptions of the benefits and difficulties of integrating a child perspective at psychiatric outpatient clinics for patients with psychosis. We were also interested in experiences of implementing two family interventions, Beardslee's Preventive Family Intervention and Let's Talk About the Children. Eleven semistructured interviews were conducted with professionals trained in both interventions. Both authors applied thematic analysis to the interview material. Although participants expressed commitment to reaching these children and supporting their parents, the narratives were characterized by difficulties in reaching this goal. Difficulties included incompatible laws and regulations, lack of organizational support, and professionals' loyalty to their patients, leading them to overlook inadequate parenting. Other obstacles to reaching children involved parental fear caused by paranoia. The results indicate a need for guidelines for the psychiatric service's provision of age-appropriate information and support to their patients' children. Organizational changes are needed to prevent alliances with their patients from interfering with professionals' abilities to help both ill parents and their children.

KEYWORDS

adult psychosis service, child support, family interventions, parenting, qualitative study

SIGNIFICANT OUTCOMES

  • • Children's rights to support and to information about the parent's illness were often hindered by the parent's symptoms of paranoia. It could be questioned whether a parent with severe delusions is capable of making decisions with the child's best interest in mind.

  • • Psychiatric outpatient clinics could benefit from having a group of professionals responsible for updating knowledge about resources and ensuring that the well-being of all patients' children is attended to. Such a group could also prevent professionals from allowing their alliance with patients not to detect some parents' incapacity to meet their children's needs. [End Page 57]

  • • Routinely asking questions about parenting capacity and the child's well-being, initially as well as regularly during treatment, could prevent parents from feeling judged to be "bad parents" and help professionals overcome their hesitation to ask about the child and provide information about support. Such a routine could shorten the months or years a child in need often waits for the situation to be detected and amended.

LIMITATIONS

  • • All information about the parents and children presented here is based on the professionals' perceptions and should not be assumed to accurately describe any actual family situations.

  • • Some of the laws and guidelines presented here are specific to Sweden and may not be applicable in other countries.

Introduction

Being a parent with psychosis can involve challenges such as experiencing delusions, hallucinations, and negative symptoms while caring for a child. Many parents also encounter unemployment, poverty, isolation, and stigmatization (Campbell et al., 2012; Park, Solomon, & Mandell, 2006). An Australian national survey identified 50% of fathers and 36% of mothers as having severe impairments in parenting (Campbell et al., 2012).

Children who grow up with at least one parent with psychosis often describe an insecure family environment characterized by disputes and arguments (Kahl & Jungbauer, 2014), and many adult children recall their childhood as "chaotic," "unpredictable," and "scary" (Duncan & Browning, 2009). Because of environmental risks and heredity, having one parent with schizophrenia results in a 7% lifetime risk of the child developing schizophrenia (Gottesman, Laursen, Bertelsen, & Mortensen, 2010) and a 55% risk of any psychiatric condition (Rasic, Hajek, Alda, & Uher, 2014).

Since many parents with psychosis have difficulty meeting their children's needs and lack adequate parenting support, some researchers have recommended that psychiatry integrate a child's perspective into care (Campbell et al., 2012; Donatelli, Seidman, Goldstein, Tsuang, & Buka, 2010). In theory, a child perspective lets the best interests of the children permeate all decisions with direct or indirect consequences for their well-being. In practice, it commonly includes interventions intended to improve [End Page 58] and support parenting skills, though interventions can also include the child.

In previous studies of attitudes toward supporting parents with psychosis and their children (e.g., Dolman, Jones, & Howard, 2013), professionals have tended to experience anxiety and additional responsibility. Perceived difficulties include lack of time, budgetary constraints, and confusion about who is responsible for the children's needs. Many professionals express the need for more specialized training and parenting education for themselves as professionals and for the patients as parents (Dolman et al., 2013). Education and manual-based methods have been recommended to increase professionals' confidence in supporting parents and detecting children's needs (Campbell et al., 2012; Donatelli et al., 2010; Kahl & Jungbauer, 2014). However, research into professionals' perspectives on supporting parents with psychosis and their children is scarce, and more knowledge is needed (Dolman et al., 2013).

In Sweden, two sets of legislation regulate the rights of children of parents with mental illness. One, formulated by the Department of Health (SFS, 2001), obliges all health care professionals to pay attention to the child's situation and to report promptly if the child's well-being is at risk. The other (SFS, 2010) requires all staff working in health care also to pay special attention to children's needs for information, advice, and support when a parent or other adult in the home has a mental illness. After the 2010 health care legislation was formulated, two family interventions—Beardslee's Preventive Family Intervention (FI; Beardslee et al., 1992) and Let's Talk About the Children (LTC; Solantus, 2006)—were implemented to meet children's rights to information and support. The main aims of these two interventions are to facilitate family communication about the parents' illness, reduce the child's feelings of guilt, and support the child's relationships within and outside the family (Beardslee et al., 1992; Solantus, 2006). FI and LTC are the first structured interventions designed to ensure that a child perspective permeates adult psychosis care in Sweden.

Aims of the Study

The aims of this study were to explore professionals' perceptions of the benefits and difficulties of integrating a child perspective into adult psychosis care, and to conduct interventions targeting children's needs for information and support. [End Page 59]

Material and Methods

The aims of this study were to explore professionals' perceptions of the benefits and difficulties of integrating a child perspective into adult psychosis care, and to conduct interventions targeting children's needs for information and support. This study is part of a larger research project called Evaluating Parent-Based Interventions Targeting Children of Parents With Psychosis that is intended to investigate the possible effects of Beardslee's FI on parental capacity, child's well-being, and family climate and communication. One part of the research project also concerns mental health professionals' experiences of supporting parenthood and integrating a child's perspective in adult psychiatric care. The design of the research project was approved by the Regional Ethical Review Board, University of Gothenburg (ref. no. 599–15).

Setting

The study was carried out at eight psychiatric outpatient clinics for patients with psychosis in one of Sweden's larger cities and one such clinic in a medium-sized city in southern Sweden. The units were in diverse areas representing low to high socioeconomic statuses. All units were organized in multidisciplinary teams including nurses, occupational therapists, physiotherapists, psychologists, psychiatrists, secretaries, and social workers. Approximately two FI-educated professionals per unit had delivered that intervention for about two to three years, and approximately five professionals per unit educated in LTC had delivered that intervention for three to four years.

Participants

Eleven women, aged 32 to 57 years, participated in the study. All worked at psychiatric outpatient clinics specializing in patients with psychosis. Of the nine units included in the research project, eight were represented in this study. Participants' work experience ranged from 3 to 26 years (M = 13.09). Six participants worked as social workers, four as mental health workers, and one as a nurse.

Procedure

An invitation containing information about the study was sent by email to all professionals (N = 20) with training in both FI and LTC who worked [End Page 60] at the units included in the research project. Information covered the aim of the study, the voluntary nature of participation, and the guarantee of anonymity. Seven professionals initially agreed to participate. A reminder email sent 1 month later to nonresponders prompted another three professionals to accept, and a last reminder sent after another month recruited one more participant.

An appointment for the interview was made within two weeks of the professional's agreement to participate. One interview was conducted at the Department of Psychology, University Gothenburg; all others were carried out at the professionals' respective psychiatric units.

Interview

The interview guide was semistructured and covered three areas: the families' needs and resources, experiences of supporting families with parental psychosis, and experiences of working with FI and LTC. The analysis in this study is based on questions about the parents' and children's needs for support; the adequacy of current support; experiences of offering family interventions; and any difficulties in offering parental and child support. All questions were open ended to invite the professionals' own thoughts and experiences. Participants were asked to speak partly out of their general understanding and partly in relation to specific families they had met. The number of follow-up questions used to clarify participants' experiences and thoughts varied between interviews, depending on how talkative and detailed the participant was.

The interviews each lasted approximately one hour. The first author conducted six interviews and the second author five. All interviews were audio-recorded and transcribed verbatim. To become familiar with all interviews, each author transcribed the other's interviews.

Analysis

The transcripts were subjected to inductive thematic analysis (Braun & Clarke, 2009). The transcripts were first read by both authors, with the aim of extracting all data relevant to the research question. The data were then coded separately by both authors, who made no attempt to fit data into a preexisting framework. Ideas for structuring the data were noted. All codes and ideas were then discussed by the authors and new ideas were used in recoding. With a focus on professionals' understanding of necessities [End Page 61] and obstacles in integrating a child perspective into adult psychosis service, the codes were first organized according to content with a focus on positive or negative experiences. Thereafter, the coded data extracts were reorganized to investigate whether the themes captured the respondents' thoughts about benefits and difficulties for patients, children, and professionals. The codes were then reorganized under two main themes, found to capture the material: "Alliance as a benefit and an obstacle" and "Care as a help and a hindrance." Subthemes were created to structure the material. All data extracts were reviewed to find quotations that best captured the essence of each main theme and subtheme.

Results

Alliance as a Benefit and an Obstacle

Participants discussed parenting as a sensitive topic, characterized by the patient's fear of losing custody of the child. They stressed that a good therapeutic alliance was their only way to gain access to the family and to information about the child's situation and well-being. However, their alliance and loyalty to the patient sometimes seemed to prevent them from taking the child's perspective and acting in accordance with laws and guidelines, and at times from even raising the topic of parenthood.

Allowing access to the family

All participants described a good alliance as a prerequisite to asking about the patient's parenting and the child's situation. Many said that their relationship with the patient was their only link to knowledge about the family in general and about the children in particular. Without such an alliance, access to the family was described as impossible; the absence of a trustful relationship could undermine any chance to gain insight into the child's situation. As one participant said, "The relationship with the patient is the most important thing of all. . . . It's the only thing that gives insight into the child's situation!"

The participants often defined their role as that of "a link" between the family and institutions such as the social services or child psychiatry. However, a good alliance was a prerequisite to offering information not only about family support services, but also about family psychiatric interventions: "Everything is about the relationship. It can take weeks or so [End Page 62] to win the patient's trust. But without an alliance, it's not even possible to inform [patients] about different kinds of parenting support."

All participants said that the main obstacle to offering family support was their perception of the parent's fear of losing custody and having the child taken into care by the social services. Creating a strong alliance was described as a useful strategy in helping parents to overcome their fears and offer information about a child's situation. Finding topics not directly linked to parenting skills, but rather to the family's social situation, also seemed an effective way to offer and receive information about a child's situation:

Talking about the economy is a good way in—asking if they can afford leisure activities for their children, if they can afford Christmas presents. Sometimes, I help them to apply for financial support, which makes them so happy. A while ago, we helped one father to get money for a summer camp for his son. In such situations, it's not difficult to talk about the children.

An obstacle to taking action

All participants agreed that a good alliance was a condition for working with a child perspective in psychosis care. However, several interviewees indicated that the alliance could also act as a barrier against raising the topic of the children's well-being and the patient's parenting. Several participants said that some colleagues, for fear of damaging the relationships, hesitated to ask about children. Issues of parenting were described as sensitive and full of taboos. Some described colleagues who were afraid to ask, and others compared parenthood to sexuality to highlight its sensitivity. Another obstacle was that some professionals prevented other colleagues' involvement in "their" families in an atmosphere characterized by "solitary work" and taking exclusive responsibility for certain patients: "No, some staff members won't let others in—they want the patients for themselves. I think that's so wrong, but unfortunately that's how it is."

When an alliance was difficult or impossible to establish, participants still described avoiding asking about parenting and the child out of respect for the alliance they hoped to build. The quality of the alliance and whether or not they liked and cared for the patient also influenced the way they talked about parenting and children. One informant reflected on the [End Page 63] risk of the alliance making her "blind" to possible shortcomings in her patients' parenthood: "The quality of the alliance affects me as a care provider. It affects how considerate I am, and sometimes I may see [good] things in them that don't exist."

The most prominent aspect of the alliance as an obstacle to taking action was the necessity to maintain "dual roles," balancing the need to win the patients' trust against the responsibility to collaborate with social services. When required to make reports, some participants felt they had betrayed the patient and destroyed the alliance they had created. The difficulty of balancing the alliance against the child's well-being also became particularly clear when concern for a child was so great that a report to social services was considered:

And then, you have to take the alliance into consideration, but at the same time . . . it's always there, as an aspect. That's very difficult. It's a feeling that you can't put into words. And I know I'm supposed to report it to the social service, of course, but sometimes it's difficult.

The feeling of performing dual roles also arose concerning asking about children while having responsibility for the patient's medications. Several participants described their roles as "blurry" and "unclear" compared with those of social services staff. Some spoke of the alliance as necessary to the patient's taking prescribed medications and feared that questions about the child would make the treatment fail:

It is very difficult because we need an alliance with our patients. We depend on them to take their medications, for example, but at the same time we are obliged to report if we're concerned about a child's well-being. On one hand, we always have to think "How worried am I?" and on the other hand "What if we lose this family, who will then help them?" That's very difficult and it's our major hindrance.

Some participants lacked confidence in the authorities and talked of reports that had led not to action, but to ruined relationships and lost contact with patients and families. Such experiences made them even more hesitant to take action:

Reporting doesn't always lead to action. It just cuts the relationship off rather than. . . . Perhaps, my relationship with the parent is the only [End Page 64] relationship that exists, and who will then have insight into the family and see how it works and how it doesn't work [if I'm not there]?

Prolonging time to interventions

A prominent theme in the interviews was how long it could take to provide information to children and sufficient support to families. Some attributed the delays to the importance of building an alliance before bringing up children's well-being and parenting, while others cited patients' illness, lack of motivation, and lack of insight. Whatever the reasons, it was clear that the alliance and the participants' wish not to oppose their patients contributed to the years it could take before they learned about the children's well-being. The long periods of care described as "characteristic of patients with psychosis" also seemed to contribute to the loss of a child perspective and of the appreciation of how long a year of waiting could be for a child:

We work and motivate [the patients]. Meanwhile, we have the advantage of having our patients here for a long time, for many, many years. Sometimes until they're dead, I was about to say, but that's the way it is. That means that we've got time to justify family interventions.

The treatment goals varied from meeting the patient's children, convincing the family to accept help from social services, to providing information about parental support offered by the psychiatric unit. Regardless, participants stressed that nothing could be done until they had won the patient's confidence:

That's not something you can do in the first meeting. I'm sure there are exceptions, but when there is resistance you can't give information at the first meeting. That's something you offer after a year, when the alliance is there. Or you can offer [it], but nothing will happen until after a year.

It was also common, even when both parents had agreed to participate in a psychiatric intervention, that it could take months to start. The main reason was the care providers' wish to be careful and not to push a patient perceived as "fragile": "Sometimes it takes a lot of motivational work. I think I motivated the last family for half a year although the ex-husband [End Page 65] really wanted it, and then another six months to get started. I don't want to push it."

Care as a Help and a Hindrance

Although the parents', professionals', and organization's compassion for children was emphasized, participants also discussed several obstacles to working within the laws and guidelines regarding children's well-being. They described parents whose concern for the child hindered them from gaining information and support, and an organization that, despite good intentions, had failed in implementing family work. Resistance from patients and heavy workloads led to frustrated care providers who felt obliged to prioritize their patients over children and other relatives.

Good will is difficult to implement

Participants expressed disappointment in a venture that began with good intentions but had neither been sufficiently implemented nor prioritized the child. However, many agreed that awareness of the significance and importance of paying attention to the patients' children did permeate the organization:

There is no one anywhere, no matter what their title or role in the organization, that doesn't support the notion that families should be supported and that the child's perspective is very important: there is no one who opposes that.

Many participants described having heavy workloads, with an increase in the number of patients over 10 years not matched by sufficient new recruits. They felt forced to prioritize what they perceived as their actual work—namely, reducing the patient's symptoms. They also said that they felt lonely bearing sole responsibility for issues that concerned the patients' children. They lacked supervision and someone with whom to discuss issues such as whether and when a report to social services should be made. They also revealed that the two employees responsible for instilling the child perspective and for educating staff in family interventions had resigned without being replaced. This was perceived to signal that the children were not a priority issue. Many also missed the emotional support and practical guidance that the child perspective developers had offered: [End Page 66]

It was easier when the child's perspective developers were here and you could receive guidance and raise questions, it was a natural source of help. Although I'm not completely alone now, there's no one to seek guidance from, no one to lean on in difficult decisions.

Some participants were more self-critical, stating that the organization had made a great effort to train staff about child issues and family interventions, but that the resistance lay within themselves. One emphasized that education and guidelines do not necessarily mean that more children receive support: "I think that, psychologically, we think we are working with the child's perspective here, because we are trained, but the reality does not look like that. It's simple math—I mean how many children do we really meet?"

To maintain a child perspective, one unit had formed a group of staff who became involved as soon as a person with a child became a patient. However, the group took time and some work had to be done after ordinary working hours. One member of the group speculated about the ideal situation:

The ideal would be to have a group that only worked with children. Now we're working with the child's perspective in addition to our real job, and it just becomes an extra task like everything else, like taking care of the drug supply. And [the child support group] requires a lot of time, but unfortunately we cannot get involved as much as we want to. The ideal would be to work full-time with the group.

Parents' care and fear prevent transparency

Participants generally described parents with psychosis as caring, anxious, well meaning, and concerned about their children's best interests. However, the parents' care, coupled with fear of losing custody, emerged as a major obstacle to care providers' obtaining information about the children and meeting them:

There are also parents who say, "If you meet my children, what questions will you ask? Are you going to burden my children?" They are afraid that we will worry or hurt the children in some way, because that is something that all parents have . . . here [i.e., pointing to the forehead], [End Page 67] to protect their children, to ensure that they will not be harmed in any way.

Another aspect of the parents' concern was their desire to protect their children by not talking about the illness and by trying to hide their symptoms. Parents' unwillingness to talk about the illness was often related to the severity and type of symptoms. In periods of severe symptoms, some children were isolated by their parents' fear and preoccupation with symptoms such as hallucinations; other parents were convinced that their children did not notice their illness and that symptoms such as hallucinations and delusions could be hidden. Some parents were also said to excuse their avoidance of talking to their children about their illness by claiming to have symptoms only at night, or that the children had never been present during their delusions or hallucinations. Other parents attempted to protect their children from the fear and stigmatization of psychosis by saying that they were tired or depressed:

I have one father who thinks that his teenage daughter doesn't notice anything, so he just says he's depressed sometimes. But he hears a lot of voices, so it would surprise me if she didn't [notice]. And in case she notices it, it would be much better for her if they could talk about it, if she could talk to us. But I haven't been allowed to see her; he wants to protect her by not letting her know that he's ill.

An additional obstacle for professionals trying to support the children was the parents' shame at having exposed their children to fearful and incomprehensible situations, such as hiding together in the forest during a period of symptoms. Such behaviors were described as so shameful and worrying for parents that it hindered them from accepting family interventions and attempting to explain what had happened. As one participant noted, "When you start talking about parenting they become defensive, afraid. And they feel threatened, fearful of guilt, and that they are bad parents; afraid that we will undertake interventions against their will."

Despite difficulties reaching the children, only a few participants saw coercion as a possible means to provide support. Rather, many emphasized interventions that did not involve the children as a better alternative; for example, "It is easier to implement interventions that do not involve children; after all it is a new step to talk openly to the children about the illness, and to let an outsider into the family." [End Page 68]

Complying with legislation is difficult

Participants offered several reasons why the Swedish health care legislation was difficult or impossible to comply with. All participants mentioned parents' resistance to talking with authorities about their children. Some parents had accepted interventions that involved parental support, but not direct support to the child. Although participants talked about this in a positive way, many said it could be problematic to let parents decide whether and how the child should learn about the parent's illness. Another hindrance to implementing interventions targeting children's needs for information and support was the requirement for both parents to agree to them. This rule could be particularly challenging when the parents were divorced or were both ill: "I have this family. The mother wants interventions and support for their child, but the father is an alcoholic and says no to everything. And then there's nothing we can do."

Many participants described a relationship between the parents' illness and their willingness to accept support for themselves as parents and for their children. Generally, parents with more severe symptoms were more negative toward support, making the legislation even more difficult to comply with:

Those who are most ill are the hardest to reach. I can think of a mother who is very ill. She has a hard time getting here, understanding the information, and as long as she says no, I can't force them to undergo intervention. Those who need it most are those who are the hardest to reach.

Some said that it was particularly difficult to offer support to children of parents with paranoia, since paranoia by definition involves mistrust of people and institutions. Some parents had started an intervention but decided not to complete it when they became too paranoid. One woman was described as having become so paranoid talking about her son that she ended her contact with the unit:

We did LTC with this mother because there had been reports from her son's kindergarten, but after two years she became more ill and she became really paranoid because we'd talked about her son, so she refuses to come here now. [End Page 69]

A tiring commitment

All respondents expressed commitment to and concern for the children of parents with psychosis and argued that no other work task was as high a priority as a child suspected of being exposed to neglect or abuse. However, the informants' commitment combined with concern for the children's well-being emerged as a burden, and many described having felt "sad," "angry," and "devastated." The most commonly used word when discussing family work was "frustrating," and some informants cried when describing specific experiences:

It's so hard and frustrating. I had a mother of five children where I made home visits so I met the kids because they were also at home. One day I had to be there when the police took her and her newborn baby because she was totally insane, so terrible . . . I just went home and cried for days. [cries]

A sense of loneliness and powerlessness characterized many of the interviews. The loneliness related to having few or no people with whom to share concerns about the children, and the powerlessness commonly related to frustration at not having enough time to focus on family work. Many described having a workload that made it impossible to help as much as they thought they should. For some, feelings of insufficiency led to feelings of guilt:

I'm the only social worker on my team, and we have 250 patients, and half of my work time is spent on case managing, and half the time I am a social worker, and the child perspective is just one of many other tasks. I don't have the time, I constantly feel guilty because I don't have the time for it, and yes it feels terrible.

Informants described frustration over an organization that did not take the child perspective seriously by offering enough time for them to prioritize the children or provide the support they deemed necessary. Many also expressed frustration with the current system, which did not take account of the time spent working with the child perspective (i.e., not giving points for meetings only with children or other relatives). Several informants also described a lack of support associated with the loneliness and emotional distress that the child perspective involved: [End Page 70]

It's hard to be alone with all the anxiety—the needs are enormous. [deep sigh] I don't want the next generation to come and ask "Why didn't anyone ask how I was doing?" I don't want that, but I think that will happen anyway and it's so frustrating. That's a heavy responsibility!

Some participants said that the problem with the child perspective was not lack of organizational support, but rather individual care providers' priorities. Others blamed themselves, citing a lack of energy, wishing they had done more interventions, but also describing a workload too heavy to carry. Whether they described it as an organizational or an individual problem, many described the support for children as insufficient. There were also those whose commitment had made them put in extra effort and move outside organizational frameworks to provide support in times of crisis:

Recently, we had a patient with two children, and she committed suicide. Then we offered support [to the children] even though they had contact with another unit at that time. And although the mother's former care provider had retired, she worked extra to meet the children, because they had previously had a relationship.

Discussion

Despite the informants' commitment and their desire to support both parents and children, descriptions under the two major themes, "Alliance as a benefit and an obstacle" and "Care as a help and a hindrance," were characterized by feelings of insufficiency and obstacles in the way of reaching the child and supporting the parents. We discuss these difficulties from the perspective of the children, parents, and professionals. Thereafter, the difficulties in implementing and maintaining a child perspective in adult psychosis care will be discussed from the perspective of two competing acts of legislation. Last, strategies that can facilitate the child perspective will be outlined.

Descriptions of Being a Child of a Parent With Psychosis

The most prominent aspect of the results was the child's vulnerability and dependence. The child was described as dependent on a parent who has periods of difficulty distinguishing internal thoughts, experiences, and [End Page 71] fears from reality. One symptom with the most severe implications was paranoia, or distrust grounded in previous negative experiences of authorities, causing the parent, and automatically also the child, to withdraw from parenting support and from interventions intended to provide the child with information. The child also appeared to depend indirectly on the alliance between the parent and the professional; without that trustful alliance, the child would have no access to support and information. The participants' desire to build an alliance before mentioning parenthood and the child's well-being seemed to contribute to long delays before children's situations were attended to. A year of waiting for an alliance to be established and for the care provider to find the right moment to discuss the situation can have severe consequences for the well-being of a child in need of support. The images of vulnerable and lonely children that emerged in this study are supported by interviews with adults raised by parents with schizophrenia, who described the lack of effective social services and neglect from the ill parent and from adults and society in general (Duncan & Browning, 2009).

Descriptions of Being a Parent With Psychosis

Parents with psychosis often seem to fear discussing parental failures with a care provider who is obliged to report promptly to social services if a child's well-being is at risk. Fear of custody loss has been reported as a concern in many studies (e.g., Dolman et al., 2013), as has its effect on patient communication with professionals (Montgomery, Tompkins, Forchuk, & French, 2006), and the resulting reluctance to seek help (Khalifeh, Murgatroyd, Freeman, Johnson, & Killaspy, 2009) is well known. The patients were described as caring and anxious about their children's well-being, although incapable of looking after them in periods of severe symptoms. The combination of parenting and psychosis seems to entail shame and guilt over exposing the child to frightening behavior, and fear about how symptoms of the illness have affected the child's well-being.

Being a Professional Working in Adult Psychosis Care

The results conveyed an image of professionals whose commitment to the child perspective was hindered by a heavy workload and by an organization that, despite good intentions, had failed to provide scheduled time for [End Page 72] family work. The care providers emerged as frustrated by the overwhelming need and limited opportunities to reach children in need of support and information. The care providers also seemed lonely; they lacked organized support for discussing their concerns and possible actions, and felt guilty because they recognized needs that they had left unmet. However, there were other care providers whose commitment and compassion for the patient made them unable to recognize the patient's possible shortcomings as a parent and therefore also reluctant to report concern over a child's well-being. Experiences of having dual roles in dealing with patients' children have previously been recognized, and informants explicitly stressed avoiding parenting issues in order to stay impartial and loyal to their patients (Maddocks, Johnson, Wright, & Stickley, 2010).

Consequences of Legislation and Guidelines

The child perspective, highlighted in Swedish health care legislation, is restricted by the Parental Code, which confirms that a child younger than 18 years is under the care of one or both parents unless the court has entrusted custody to specially appointed guardians (SFS, 1949). In practice, this means that parents in custody, regardless of mental status, have the right to decide whether or not the child is in need of care and support. Combining the Parental Code with Swedish health care legislation can be especially problematic in a group of patients with symptoms characterized by periods of delusions. However, it is important to stress that despite describing several difficulties in working within the health care legislation, only a few participants perceived coercion as a possible way to support the child.

Around the world, family interventions are recommended psychological interventions for addressing psychotic disorders. For example, the United Kingdom's National Institute for Care and Clinical Excellence guidelines (2014), the Royal Australian and New Zealand College of Psychiatrists (Galletly et al., 2016), and the Swedish National Board of Health and Welfare (2011) recommend family interventions and support. However, these guidelines make little or no mention of the role that psychiatric services have in providing age-appropriate information or support to patients' children. This absence of recommendations to meet needs for parental and child support indicate that vulnerable children of parents with mental illness have little or no right to individual support if they have not themselves been in contact with child psychiatry. Furthermore, [End Page 73] the absence of a child perspective in national guidelines could mean that patients' children are unrecognized by professionals in psychosis service. Such a failure can have severe consequences by leaving children with unmet needs and little or no knowledge about their parent's illness. There-fore, we propose that special attention should be paid to the important role of adult psychosis service in attending and supporting children of parents with psychosis. Guidelines should also stress the responsibility adult psychosis service has in gathering information about whether a patient is a parent. Such information is important for making sure that children are not left alone when parents are in care or, alternatively, sent home to care for their children.

Strategies to Facilitate a Child Perspective

Implementing a child perspective in adult psychosis care while working within health care directives seems to require more than compassion, goodwill, and education from a health care organization.

Children of parents with psychosis are a vulnerable group exposed to environmental and genetic risk factors (Kahl & Jungbauer, 2014). A child growing up with a parent with schizophrenia has a 55% risk of developing a psychiatric condition later in life (Rasic et al., 2014), and society and health care have important roles in finding strategies to facilitate resilience and health in these children. One way to meet these children's needs is to make adult psychosis service take responsibility by educating staff in the child perspective, and about the laws and guidelines concerning children's rights to information and support. It is also important to educate professionals in psychosis service in interventions to provide age-appropriate knowledge about a parent's illness. Educating all staff could also be an effective way to prevent the child perspective from becoming the special responsibility of a few professionals, as reported here and in other studies (McConachie & Whitford, 2009; Slack & Webber, 2007). However, educating staff in family interventions is one of many steps toward attending to the child perspective in outpatient psychosis service. The professionals interviewed for this study were all trained in both FI and LTC but did not conduct, mainly because of heavy workloads, more than one to two family interventions per year. This suggests that taking the child perspective seriously also requires that the organization provide scheduled time for staff [End Page 74] to actually conduct the interventions they are trained in. As professionals in psychosis service might be the first, and sometimes the only, parties with knowledge about a parent's illness, it is important that they also have current knowledge about organizations and institutions that deliver parenting and child support.

It could be beneficial for units to have a group of professionals responsible for updating knowledge about resources and ensuring that the well-being of all patients' children is monitored. Such a responsible group could also help prevent some professionals from allowing their alliance with, and compassion for, vulnerable patients to blind them to some parents' incapacity to meet their children's needs. Another advantage of such a group is that it can help professionals maintain their alliance with their patients by allowing specially trained personnel to address matters relating to parenting and children. Some clinicians may endeavor to avoid such oversight by other professionals in order to maintain their alliance with their patients. This potential hindrance needs to be addressed by ensuring, at an early stage of treatment, that all patients receive information about the group responsible for the child's well-being. Management also needs to conduct regular follow-ups with staff to ensure that the child perspective permeates the organization, not only in theory but also in practice.

In this study, as in others (Khalifeh et al., 2009; Montgomery et al., 2006), parents' fear of losing custody of their children was a major obstacle impeding care providers from reaching out with information and support. This fear could be managed by providing parents with oral and written information about laws and legislation. Asking routine questions about their parenting capacity and their children's well-being initially and regularly during treatment could also prevent parents from feeling judged to be "bad parents" while helping professionals overcome any hesitation to ask for and provide information about children and the law. Such a routine could also shorten the months or years a child in need often waits for a negative situation to be detected and amended.

Last, because parents with psychosis are sometimes described as incapable of keeping their children's best interests in mind, routine questioning may prevent further stigma from arising in an already vulnerable group. Leaving an ill parent responsible for a child will likely cause nothing but harm to the child and shame and guilt for the parent. [End Page 75]

Limitations

This study has limitations that are important to address. Some of the laws and guidelines presented here are specific to Sweden and may not be applicable in other countries. It should also be noted that the professionals who participated in this study were educated in the child perspective and in family interventions, and therefore may not be representative of all professionals in psychiatry. It is reasonable to assume that knowledge and commitment to the child perspective was higher in this group than in the general population of health care professionals. It is also important to keep in mind that all information presented about the parents and children is based on the professionals' perceptions and should not be assumed to accurately describe any actual family situations. [End Page 76]

Jennifer Strand
jennifer strand, PhD, Department of Psychology, University of Gothenburg, Box 500, 405 30 Gothenburg, Sweden. Telephone: +46 31 786 42 81; email: jennifer.strand@psy.gu.se
Lisa Rudolfsson
lisa rudolfsson, PhD, Department of Psychology, University of Gothenburg, Box 500, 405 30 Gothenburg, Sweden. Telephone: +46 31 786 16 87; email: lisa.rudolfsson@lir.gu.se

acknowledgment

This research was funded by the Swedish Research Council for Health, Working Life, and Welfare.

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