Online support for children of parents suffering from mental illness: A case study

Background

Method

In the case presented here, we have named the visitor Ann. She was the first user of Survivalkid to reach the 24^th birthday, and she discontinued her visits in 2009. A year later, she visited Survivalkid again to formally say Goodbye. By then, we had decided to ask departing members some questions during an exit interview, which was conducted on secure pages at the Survivalkid website. Accordingly, we asked Ann to participate in the interview.

The structured email interview was set up according to guidelines that Hunt and McHale (2007) suggested and it covers key factors mentioned in Hosman et al.’s (2009) developmental model, such as self-esteem, family context and the availability of sources of support, particularly support from the Survivalkid website. At weekly intervals, three predetermined questions were asked, namely (1) Can you say something about yourself? (2) Can you tell something about your family situation? (3) How did you find Survivalkid; was it useful to you? Prompts were used to enable the interviewer to obtain more detailed answers. The first author of the present study completed all of the interviews; at that time she was not familiar with the information that visitors had posted on the website. When the interviews were completed, the participants were provided with the results and asked for their consent. In her correspondence, Ann made it clear that to improve our understanding of COPMI, she would be happy to share all the confidential information that she had contributed during her visits to the website. We were impressed by her ability to put her thoughts into words, so we asked for and received her permission to analyse her user data, notes on the message board, chat conversations with other visitors and email messages that she had exchanged with the counsellor. We adopted an ‘ethics as process’ approach (Ramcharan & Cutcliffe, 2001) by making it clear that at any point in the process Ann could withdraw for any reason. The institutional review board granted ethical approval for the study to be conducted. Ann sent her written consent for the report that we then prepared to be submitted for publication.

We first attempted to become familiar with Ann’s personal experiences by gathering relevant facts from the exit interview. All available user data were then collected in order to get an impression of when and how she used the website. Posts on the message board, emails to a counsellor and chat participation were studied to find out when and how she used the interactive possibilities. The comments that Ann made in the chat room were given most spontaneously; a counsellor neither prompted them nor commented on them. To gain more insight into what she wished to share with her peers who were in comparable circumstances, we analysed her interactions with her peers in the chat room by using grounded theory (Charmaz, 2006). During the coding-process phase (the phase of initial coding), the first author read and reread the text as a whole, dividing it into meaningful units and adhering closely to the data while she coded them. Next, the most significant codes were used to synthesize and explain larger segments of the written material (focused coding). The first author along with three other professionals (two psychologists and a social worker) each independently conducted this phase of the research. The categories and subcategories that were formed in this manner were grouped together into meaningful other categories by the team of three professionals. They then coded the transcripts with the first author serving as auditor.

Results

Themes arising from the chat sessions

Five themes emerged from the analysis of Ann’s chat sessions: life at home, being with other people, awareness of not leading a normal life, resigning herself to her circumstances, finding a way out. The themes are summarized in Table 1.

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Table 1.

Textual analysis of Ann’s chat sessions.

Theme	Content of chat contributions
Life at home	Unpredictability. Trying to avert aggression. Trying to get control. Trying to be perfect. Guilt. Mother stages the play.
Being with other people	They can trust me. I will help them. I do not wish to bother anyone.
An awareness of not leading a normal life	I feel different. I do not dare to think for myself. Still, I have got talents. I suppose something must be done.
Resignation	Nothing can change my mother’s behaviour.
Finding a way out	Careful acceptance of help.

Life at home

Once Ann began talking about herself in the chat room, her home life became a major subject of the sessions. She characterized it as being unreliable. Repeatedly, Ann made it clear how hard it was to predict when and why her mother would be nice or would become cross. She described how she and her brothers “were always on the alert” and how they did not dare to question their mother’s actions for fear of making things worse. She explained that her mother could not function as a parent, so that she herself had assumed adult responsibilities, such as caring for the youngest sibling and taking care of all of the household chores. In case she did not perform these tasks perfectly, she reported how she was made to feel guilty and anxious. “I am terrified of my mother when she gets angry”. She made it clear, however, that she would prefer to suffer herself than to know that other people were suffering. She stated, “I am the one who knows how to cope”. She explained that her guilty feelings proved to her that she was to blame; there would be no point in disagreeing with her mother’s assessment of the situation. Regarding feeling guilty, she later commented that it was difficult for her to keep her own point of view instead of looking at events from her mother’s perspective. She reported to recognize, nevertheless, that her mother’s view resulted from the illness and to be determined to understand this, even though her mother did not.

Being with other people

Ann told her peers that when she was away from her family, she perceived her home life to be normal and she would manage not to think about her problems at home. She called herself a ‘perfectionist’ and explained that she had to be one because she wanted to avoid having unforeseen disagreements with other people. She stated that she did not want to bother anyone by talking about her own difficulties. Consequently, she reported that no one knew about her situation, “but playing the happy girl takes lots of energy”. She disclosed that she made an effort to be a trustworthy friend, whatever the circumstances. An example is when she learned about the difficulties of a fellow COPMI; “Things can be difficult when you read that someone else is having problems and you can’t do much about it”.

An awareness of not leading a normal life

Ann let her mates in the chat sessions know that she felt grown-up in comparison to her friends whose parents were healthy. Yet, often she became silent or left the chat room when the other people in the chat session suggested that she should leave home. She reported that such remarks made her feel uneasy (e.g. “It would mean letting my family down”) and that she felt lonely afterwards. She said that, with the purpose of seeking positive energy, she resorted to painting, sometimes even at night. She admitted that she did have talent (“I do not think much of it, but once one of my paintings was exhibited in the museum”). She could, nevertheless, not think of leading her own life, because “there is a difference between what I should do and what I can decide to do”.

Resignation

More and more, Ann reflected on the thought that as long as her mother would not acknowledge that she was mentally ill nothing could be done (“Nothing can change my mother’s behaviour.”). Ann indicated that she thought the reality of the situation was awful; nevertheless, it was inescapable. She reported feeling defeated and thought that she would have to give up fighting.

Finding a way out

Eventually, Ann revealed that she had no energy left to continue playing her role as ‘keeper of the home’ and that “something had to be done”. Using her own situation as an example, she explained to her peers that, when in trouble, seeking assistance was the right thing to do. Choosing a helper was important, she added. To illustrate this, she explained that her father, her older brother, nor her therapist had been able to support her, because none of these people really seemed to understand her situation, but that her colleague and team leader had been a great help. Being part of the Survivalkid online community had helped her as well; she reported that it gave her the opportunity to reflect on her situation and to realize what was really going on (“Always someone who listens, always response”).

Discussion

This present case report highlights the complexity that can be associated with living with parents who are mentally ill. The following discussion considers Ann’s use of the website and the most prominent themes from the analysis of her chat sessions and places them in the context of related studies in the literature.

Ann’s mother could not fulfil her parental role and Ann was forced to care for the family. This included meeting the needs of her siblings and dealing with her fear of her mother’s tantrums. Under the pressure of her mother’s unpredictability, Ann became very empathic, acquiring the ability to view circumstances from her mother’s perspective without thinking about her own opinion. This gave her a sense of control. However, apparently being afraid of her parents’ reactions, she dared not assume an adult role and start making her own decisions.

It looks as if Ann lived in two separate worlds. One involved struggling with a hectic home situation and the other was that of a young adult girl mixing with friends and colleagues. In the latter role, she seemed not to have the opportunity to freely exchange thoughts with others, for she always had to be careful not to make the details of her home situation known. Instead, her role was that of an empathic listener and helper, and this allowed her to avoid expressing the differences of opinion that she was afraid of. She reported that even when she saw her therapist, she could not fully disclose what bothered her. It came out to be too difficult for her to give up her defences.

Ann was 21 years old when she was introduced to the website. It seemed to fulfil a need and she started using it extensively. Taking advantage of the opportunity to anonymously associate with peers and a counsellor, she spent the next 3 years gradually writing down the details of her situation. This appeared to help her to reflect on her situation and eventually to give up the idea that she could influence her parents in becoming like other parents. Only when she acquired this insight did she consider herself able to leave home and begin to develop a life of her own. She was then 24 years old.

At the time of her site visits, Ann was an emerging adult (Arnett, 2000). She had to accomplish the developmental tasks of (a) seeing herself as a competent person with a future of her own choosing and (b) forming meaningful relationships with her peers (Roisman, Masten, Coatsworth, & Tellegen, 2004; Seiffge-Krenke, 2009). Ann, however, as a COPMI had to overcome factors that placed her at risk for having her healthy development thwarted, such as (a) having to cope with a parent who did not want to discuss her inappropriate behaviour, (b) having to keep her feelings of anxiety, anger and guilt concealed and (c) having to assume an adult role of care-giver that was inappropriate for someone her age (Royal College of Psychiatrists, 2005).

At first, Ann seemed to be a resilient COPMI in the sense that despite adverse circumstances, she had successfully adapted (Masten, Best, & Garmezy, 1990). That is, in addition to having finished her education and finding a job, she was able to look after her family.

In the interview, Ann let it be known that she was all right and was having a good time with her peers, adding that she had her “ups and downs”. Various authors (Fjone, Ytterhus, & Almvik, 2009; Riebschleger, 2004; Thomas et al., 2003) have made it clear that, in order to avoid further stigmatization and chaos in their lives, it is essential for young people living with a parent suffering from a mental illness to be viewed by other people as being well and functioning normally. Cooklin (2008) argued that many COPMI actively avoid “placing themselves in a similar category to their ill parent” (p. 18). Although she had already disclosed her life’s difficulties on the website, Ann concealed them in the interview, and this might reflect an attitude she had been building up for years.

Ann had not been able to profit from the preventive, face-to-face support that is offered through the Dutch national programme. Clinicians are supposed to inform their patients who are parents about the types of support offered to COPMI, but Ann’s parents were not in treatment; additionally, because reportedly they did not want to think of themselves as ill, it was unlikely that they would have allowed her to participate. Ann revealed that the family’s general practitioner did not recognize her particular situation. His treatment focused only on the patient and not on her children. Karp (2001) describes not being noticed by their family member’s therapist as a common complaint among care takers.

Because of the parents’ decision not to reveal to outsiders any of the family’s malfunctioning, the only person in her family whom Ann said she could share her thoughts with was her older brother. Reportedly, he and Ann joined together in an effort to protect their younger sibling from their mother’s aggression. According to Gass, Jenkins, and Dunn (2007), positive sibling relationships can be an important source of support for children who experience stressful events. Bryant (1992), however, states that sibling caretaking cannot be a substitute for parental caretaking, because it lacks the richness and complexity of adult caretaking in terms of the coping strategies provided. Brothers and sisters can differ widely in their coping strategies, consistent with the gender divide that Eschenbeck, Kohlmann, and Lohaus (2007) identified when they found that girls were higher in social support-seeking and problem-solving, whereas boys were higher in avoidant coping. Hoefnagels, Meesters, and Simenon (2007) reported that perceived lack of social support appeared to directly affect the level of self-reported psychopathology among adolescents, regardless of the level of stress that they actually experienced.

Trying to live up to her parents’ expectations and also to protect her younger sibling, Ann apparently took responsibility for the housekeeping. In contrast to Östman’s (2008) findings, she did not seem to have obtained more self-esteem by doing this. This could be related to (a) the fact that she got no recognition for her caretaking (Aldridge, 2006) and (b) her inclination to take the perspective of any other person she happened to meet, which undoubtedly was inspired by her understandable need to avert any unpredicted aggression. Following 120 young women in their transition from high school to military service, Mayseless and Scharf (2009) found that the young women who reported higher levels of separation anxiety and lower levels of conflictual independence came mainly from families that could be characterized as having inadequate boundaries. These women were preoccupied with conflicts with their parents, but at the same time they were unable to free themselves from their families because of anxiety and a fear of separation. Moral obligation has been documented as a primary theme in families with members who are mentally ill (Karp, 2001). The fear of being disloyal to the parent, especially when this might lead to serious consequences, seems to hinder adolescent children and young adults from exercising their own free will (Abraham & Stein, 2010).

Ann started visiting the Survivalkid website by studying the informational pages on psychiatric illnesses and psychoeducation. Thereafter, she quickly became a participant in the chat sessions. A number of the themes from the chat analysis are consistent with current understanding of a COPMI’s situation, such as experiencing fear and loneliness, blaming oneself and taking responsibility for the family (Royal College of Psychiatrists, 2005). The second half of Ann’s story includes the report of her personal experiences, which, according to Scherer, Melloh, Buyck, Anderson, and Foster (1996), are important factors that determine a child’s adjustment. Anonymously chatting with peers or communicating with a counsellor while not under her mother’s control, Ann seemed to find empathy and acceptance of her situation. However, sometimes her peers offered advice that she apparently did not want to hear. Since virtual social networks are characteristically easy to enter and leave (Andrews, 2002), she could then simply go away and return to the following chat session without losing face.

At her own pace, she learned to put into words her true circumstances. She was even able to offer advice to others in the same position, which helped her realize that her own way of coping might be to no avail. Her writing in the email messages resembled keeping a diary, which can be beneficial in itself (Pennebaker, 1997). These outcomes support Crutzen and de Nooijer’ s (2011) view that healthcare organisations’ use of online contact might be an appropriate way to reach adolescents by offering them a trustworthy introduction to more formal services.

The Survivalkid website is intended to be an online source of preventative support which is always available for a specific target group. If needed, it can also serve as a trustworthy introduction to more formal services for members of this group. Survival coaches give advice rather than provide therapy. The site is accessible for all COPMI. If, for example, in a chat session or to a counsellor, participants disclose a problem, they will be encouraged to seek further help. It is noteworthy, however, that disclosing a problem might take considerable time. For instance, even though she had urged a fellow COPMI to seek support, it took Ann a long time to do so herself.

We are aware of the limitations on conclusions that can be drawn from a case study. For instance, Ann’s unique experiences may not reflect those of other COPMI. Others might live in less chaotic circumstances or might have more resources for support, such as a healthy parent or adequate treatment. Additionally, Ann might have been handling her problems in a very special but atypical way. Nevertheless, it became quite clear that Ann, an apparently resilient COPMI, might need far more support than she was seeking and that she experienced the anonymity and safety of the accessible online support as beneficial. Although this study is based on the experiences of one particular COPMI, the observations made might lead to further insight into the unique situation of children living with a mentally ill parent. In future, additional analyses should be undertaken to determine how online communication between young people and prevention professionals might influence consultation processes and alter healthcare outcomes (Harvey et al., 2008).

Conclusions

Albeit tentative, the data regarding Ann’s website visits offer insight on issues regarding COPMI. Even if many COPMI adjust well (Gladstone et al., 2006), having a mentally ill parent is strongly associated with difficulties in their children. One implication of these outcomes is that clinicians should be attentive to the risk that apparent resilience can be misleading, particularly if there are reasons why children might want to hide their difficulties. It may take too long for a COPMI to feel safe enough to dare disclose any problems. Another implication is that if parents with a mental illness remain unseen by healthcare providers, their children may be unable to profit from the preventive face-to-face interventions that have been developed. Online support that is specifically designed for COPMI and is anonymously accessible at all hours has distinct advantages. It makes it possible for site visitors to emerge from their hiding and to find information and use support at their own pace. In short, it can be highly empowering.