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Journal of Psychiatric and Mental Health Nursing, 2011, 18, 342348

Was it something I did wrong? A qualitative analysis of parental perspectives of their childs bipolar disorder
M. CROWE1 rn phd, M. INDER2 dipsocwk phd, P. J O Y C E 3 d s c m b c h b p h d m d f r a n z c p f r s n z , S. LUTY1 bm phd (otago) franzcp, S. MOOR4 mb chb mrcpsych & J. CARTER5 dipclinpsych phd Associate Professor, 2Research Fellow, 3Professor, 4Senior Lecturer, Department of Psychological Medicine, University of Otago, and 5Senior Lecturer, Department of Psychology, University of Canterbury, Christchurch, New Zealand
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Keywords: aetiology, bipolar disorder, depression, mania, parenting, qualitative Correspondence: M. Crowe Department of Psychological Medicine University of Otago PO Box 4345 Christchurch New Zealand E-mail: marie.crowe@otago.ac.nz Accepted for publication: 26 November 2010 doi: 10.1111/j.1365-2850.2010.01673.x

Accessible summary

The onset of bipolar disorder during adolescence has a serious impact on social and occupational functioning. Parents attributed the onset of bipolar disorder in their child to childhood adversity, parenting or substance misuse. Parents often blame themselves for the development of bipolar disorder in their child.

Abstract The aims of this study were to examine parental views on the onset of symptoms, impact on functioning and meanings attributed to their childs bipolar disorder. Early onset bipolar disorder impacts on development and functioning across multiple domains. Psychosocial disability uctuates in parallel with changes in affective symptoms and may signicantly affect family members. This study utilized descriptive statistical data and qualitative data from parental self-reports of 85 participants in a trial of psychotherapy for young people (1534 years) with bipolar disorder. A content analysis was conducted on the written self-reports. Most parents identied the onset of depressive symptoms in their child by early adolescence, but it was not until late adolescence, or later, that parents noted symptoms of mania. The onset of symptoms during a crucial period of development had a considerable impact on social and occupational functioning. Without prompting, the parents took the opportunity to attempt to make sense of the diagnosis by attributing its onset to childhood adversity, parenting or substance misuse. Parents often blame themselves for the development of bipolar disorder in their child. Nursing care for clients with bipolar disorder could include interventions for the family to help them understand and manage the disorder. Such interventions could include: psycho-education, communication enhancement and problem-solving skills training.

Introduction
Bipolar disorder is characterized by chronic and recurrent marked mood instability. Its course is typically hectic and variable with extreme highs and lows intermingled with
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mixed states and subsyndromal symptom urries that create hybrid symptom states that defy easy labels (Frank et al. 2000). In the Global Burden of Disease, bipolar disorder is ranked as the sixth leading cause of disability (World Health Organization 2001). The disorder typically
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follows a chronic and/or recurring course and has equal prevalence rates for both genders (Oakley Browne et al. 2006). Studies have identied that the longitudinal course of both bipolar I and bipolar II disorders is chronic and primarily depressive (Judd et al. 2002). It has also been found that psychosocial disability uctuates in parallel with changes in affective symptoms, and that these symptoms are equal to or more disabling than corresponding levels of manic or hypomanic symptoms. Thus subsyndromal depressive symptoms are associated with signicant impairment (Judd et al. 2005). Few clients with bipolar disorder experience a simple trajectory of clear-cut episodes, with recovery typically occurring slowly over time independent of the bipolarity phase (Elgie & Morselli 2007, Huxley & Baldessarini 2007). Contrary to the notion that patients return to their premorbid level of functioning, this is not the norm for the majority of patients who experience residual symptoms and a lack of sustained recovery (MacQueen et al. 2001, Elgie & Morselli 2007). The pervasive impact of the emergence of bipolar symptoms on psychosocial functioning has been highlighted (Leboyer et al. 2005). Miklowitz (2008) has noted that the behavioural and emotional experiences of the person with bipolar disorder affect everyone the patients parents, spouses, siblings and children, and episodes of bipolar disorder are major life events not only for the patient but for those that care for her/him.

Upon entry to the trial, participants were asked to identify parents or signicant others who knew them growing up, who were then approached by the research nurse to complete a written self-report of their perceptions of the impact of bipolar disorder on the participants development that included quantitative and qualitative measures. These were posted out to identied parents with a stamped return envelope. For this study we examined the qualitative data in the parental self-reports.

Design
This study was a qualitative content analysis using written responses. This research sought to understand how parents perceived the impact of their childs bipolar disorder on her/his functioning and anything else they wanted to tell us. This was done to capture their perceptions in their own words rather than any predetermined categories.

Participants
Inclusion criteria Participants were invited to participate in the study if they had been identied by a patient in the study as having known her/him while growing up. Parents were free to choose to respond or not. Participants were recruited and responded between 2003 and 2009.

Method
The aims of this study were to identify: parents awareness of the age of onset of bipolar disorder symptoms in their child; parents perceptions of the impact of bipolar disorder on their childs development; the way parents made sense of their childs development of bipolar disorder.

Data collection
The parents (or signicant others) were asked to write a response to the following prompts: When did you rst notice depressive symptoms in your child? When did you rst notice mania symptoms in your child? To what extent do you think the development of bipolar disorder has interfered with your sons/ daughters personal and social development? (Please expand.) To what extent do you think the development of bipolar disorder has interfered with your sons/ daughters educational development? (Please expand.) Is there anything else you wish to tell us?

Context
The study was conducted as part of a New Zealand Health Research Council-funded study of psychotherapy for young people with bipolar disorder aged 1534 years. The objectives of this study were to undertake a randomized controlled clinical trial of interpersonal social rhythms therapy in young people with bipolar affective disorder. Participants were recruited by referral and screened to conrm a diagnosis of bipolar I disorder, bipolar II disorder or bipolar disorder not otherwise specied. The study required 18-month participation in either interpersonal social rhythm psychotherapy or a control psychotherapy specialist supportive care.
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Ethical considerations
Ethical approval was obtained from a New Zealand Ministry of Health Regional Ethics Committee before recruitment of participants. Prospective participants were given a
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written information sheet explaining the study in detail and were required to provide written informed consent prior to participation. The returned responses were handled by a data manager according to the requirements for condentiality and storage. All identifying information was removed by the data manager prior to storage and analysis.

Table 1 Parent-reported age of onset of depression in child Age range <10 years 1012 years 1316 years 1719 years >19 years n 3 12 36 11 11 % 3.6 14.3 42.9 13.1 13.1 Cumulative % 3.6 17.9 60.7 73.8 86.9

Data analysis
The questionnaires were all analysed and discussed by two investigators who conducted a content analysis on the responses to explore key categories. Qualitative content analysis has been described by Graneheim & Lundman (2004) as a process that involves examining texts for manifest and latent content. It involves an in-depth exploration of the text for meaning units within a specic content area, in this case perception of the impact of bipolar disorder. Content analysis was used as it is designed to identify manifest content within written material. It allows the researcher to identify what was said and does not incorporate an interpretative process because it is concerned with what is manifest in the transcript. The content analysis process focused on what participants wrote about their perceptions of the impact of bipolar disorder. This approach was chosen as the analytical framework because it enabled a description of the participants understandings and perceptions.
Table 2 Parent-reported age of onset of mania in child Age range <10 years 1012 years 1316 years 1719 years >19 years n 1 3 20 16 21 % 1.3 3.8 25.0 20.0 26.3 Cumulative % 1.3 5.0 30.0 50.0 76.3

Rigour
The presentation of a qualitative study should provide sufcient detail about procedures to enable the reader to establish an audit trail to assess the rigour (Denzin & Lincoln 2005, p. 205) of the ndings. The content analysis in this study was conducted by two investigators working independently initially, who then met to discuss the congruity of their ndings. These sessions involved discussions of each investigators ndings to agree upon the categories that best tted the data. Sufcient raw data have been presented in this study to enable readers to judge the procedure and the ndings and assess its applicability to other settings.

Findings
Of the 100 clients participating in the psychotherapy study, 76% were female and 24% male. The mean age at entry to the study was 26.5 years (range: 1534 years). Self-reports were sent to 100 parents or persons nominated by patient and 85% were completed and returned. Seventy-ve of these were completed by mothers, one from a father, ve by
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both parents and four by others (two aunts, one foster father, one family friend). The participants replied to the structured questions and then most took the opportunity to respond to Is there anything else you want to tell us? by describing what they thought had contributed to their childs bipolar disorder. In response to the question regarding when parents noticed the onset of symptoms in their child, 61% of parents had identied the emergence of depressive symptoms in their child by 16 years (see Table 1). The onset of symptoms of mania in their child was most commonly reported by parents as occurring after 19 years of age. Furthermore, only 5% had identied mania symptoms in their child prior to age 12 and only 30% by age 16 (see Table 2). Most parents (87%) had identied the emergence of depressive symptoms by 19 years. Only 30% of parents had noted mania symptoms. It was not until at least late adolescence that half the parents identied mania symptoms and the total percentage of parents who were able to identify their emergence was 76%. The participants also provided information on their perceptions of the impact of these symptoms on their childs: (1) social relationships; (2) educational/occupational functioning; and (3) contributors or precipitants to the development of bipolar disorder.

Social relationships
Most participants identied that bipolar disorder had a signicant impact on their childs social relationships. This was described primarily as (1) a lack of condence and (2) a sense of alienation from peers.
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Parental perspectives on bipolar disorder

Lack of condence
Her teenage years were interrupted by BP [bipolar disorder]; she has lost condence to interact with her peers. She is unaware of social norms and has a heightened sense of humiliation/shame and embarrassment. She is paralysed by her perceived inadequacies and feels very isolated.

has closed down her life to a disappointing extent. She doesnt appear to have contentment.

These parents identied that a consequence of the onset of bipolar disorder was an inability to function at school and an inability to full their potential.

Most parents identied that bipolar disorder had affected their childs condence, and for some this led to self-consciousness and embarrassment related to a sense of not being as good as others. Alienation
BP [bipolar disorder] has affected her sense of self she feels different not tting in with friends. Socially my daughter has always felt different from others was slightly more outspoken, intrusive and overreacted.

Contributors/precipitants to the development of bipolar disorder


This category emerged unprompted by the questionnaire. It appeared that when parents were asked Is there anything else you want to tell us?, they used the opportunity to describe what they thought had occurred to contribute to or precipitate the onset of bipolar disorder. This seemed to be a way in which the parents had attempted to attribute meaning to their childs experiences. These meanings were categorized under the following headings: (1) childhood adversity; (2) parenting; and (3) substance misuse. Childhood adversity Many of the parents took the opportunity to describe abuse, marital separation, deaths or traumatic events in the childs life that may have contributed to the development of the disorder:
Around 910 years her step-father was abusive and had no interest in whatever she did and criticized her. I am sure this had a huge impact on her security and it took its toll. Due to his past I put a lot of blame on his past abuse and negative input from his mother as well as being moved from home to home. From age 12 when her father and I separated, she became difcult and quite rebellious. She used to retreat a lot to her room and was often angry. His dad left us when he was 6 years. He always liked to be near me and slept with me until he was 5 or 6. I became very ill when he was 12 years. I always thought in his sad or quiet times that he was broken-hearted from not seeing his dad. We had a difcult time when she was growing up. I had to face up to the fact that her father was an alcoholic. We had to eventually separate. She had a loss of self-esteem following a rape at 13. Apparent personality change . . . she changed from the extroverted mischievous child; she had been to a sullen moody and manipulative teenager . . . Before the rape she was a happy slightly rebellious normal child. She went atting at 16 to get away from her overprotective mother. My son had a major traumatic incident at age 15 . . . it has been something we have never discussed. 345

The participants identied that bipolar disorder had a signicant social impact on their child by undermining her/his condence and alienating her/him from others who were unable to understand her/his behaviour.

Occupational/educational functioning
Most parents identied that mood episodes had interfered with their childs (1) progress at school and (2) achievement of potential: Progress at school
This has severely impacted on her educational development. When depressed she is unable to concentrate and cannot understand things. When she is rapid cycling she can have patches of clarity. She usually nds 2-hour subject periods too long for her to keep focused. She has been adamant that she wont return to school to complete Year 13 because it is socially too difcult/too stressful. [She] applied too much pressure on herself at school, pushed herself too far (mental breakdown), had difculty conforming to requirements, difculty with concentration and focus and attention-seeking in class.

The symptoms of bipolar disorder impaired some childrens abilities to concentrate at school and for others it led to feeling driven to succeed. Achievement of potential
I know that she considers the inhibiting and often crippling effects of being bipolar as preventing her from achieving her potential educationally. The BP has had a huge impact. It has limited her potential as a happy fully functional woman. In fact it
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On his visits home from that time my son was very derogatory and abusive to me. I felt that he was punishing me for what happened. When she was 6 years old she received a big blow to the head from a stick being thrown and I always wondered if she suffered a head injury. Also she says she suffered sexual abuse around 57 years. His fathers death was very hard on him. His mother said it had been a very abusive relationship. When her husband was drinking and when he didnt come home [mother] would threaten suicide. As a mother I was grieving for my baby son when she was aged 2. I am not sure if that had impact. Her father died suddenly the year after. We think our daughter has never come to terms with the loss of her only brother.

The farm, housework and six children kept me tremendously busy. I feel guilty I didnt do enough for the children.

These parents perceptions of inadequacies in their parenting because of their own mood disorder, or actions they had taken reect considerable self-blame for their childs bipolar disorder. Substance misuse A few parents also attributed the onset of bipolar disorder to their childs misuse of alcohol and drugs, particularly marijuana.
He has been a heavy user of marijuana since age 14. He was a high achiever at school and at University he started to abuse alcohol and drugs and these appear to have been triggers to his condition. At 14 he started listening to heavy metal music and smoking marijuana which may have had a lot to do with his BP. At rst we blamed alcohol and drugs for her irresponsible erratic and irtatious behaviour.

These parents identied abuse either directed at the child or themselves, marital separation, trauma and grief as possibly contributing to the onset of bipolar disorder. Parenting The parents, mostly mothers, expressed a sense of selfblame that they have been inadequate as parents or had done something wrong as a parent.
I found I never seemed to bond with her or understand her. She was a survivor really. A lot of what she truly felt was demonstrated in her behaviour. I have told him that I may not have been the best of mothers but I know I was the best I knew how to be. As a parent you reect on yourself and ask the question what did I do wrong?. When she was 10 years we immigrated to New Zealand. He was always a sad child as a result of being in our family. He often would not go to school and had headaches in the morning and found it hard to go to sleep. He was unable to tell me what was wrong. After my marriage broke up I was emotionally empty/ numb for large chunks of time. I hate that my son was surrounded by that environment. I think he felt everyone let him down and that would be fair in the circumstances. I was depressed during the early years of parenting her and was working through my own abusive childhood. I was probably quite an overbearing and controlling mother and quite protective and enmeshed. I worry about how this bipolar disorder came about. Was it something I did wrong? Is it my fault? How can I help her? I am a recovering alcoholic and have bouts of depression I am sure when I was unwell it affected the whole family. 346

It appeared that the parents had been searching for answers as to what had led to their childs bipolar disorder as they provided this without prompting. There was a strong sense that the parents had been reecting on this for some time and many of the comments suggested self-blame either for their parenting or for marital situation. In concluding these results it is important to note how frequently parents took the unprompted opportunity to express their love for their child:
She has faced some terric challenges and has come through them all. Im sure there will be more hurdles on her journey but I am really condent she is strong enough to face them. She is a very loving daughter, a bright and caring young woman and a very special person. I love her deeply and feel very privileged to be part of her journey. We really respect and admire the way she has handled and coped with her disorder. We appreciate that everyday is a struggle for her. We will always be there for her in any way at all. She is a really valued member of our family. She has all the qualities in a person that we admire.

Discussion
This study was limited to parents whose off-spring was participating in a psychotherapy for young people with bipolar disorder trial and for this reason it may not be representative of a wider group of parents. It also only includes responses from parents still engaged with their child and it has been noted that many young people can
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Parental perspectives on bipolar disorder

become estranged from family. Another limitation relates to the use of written responses rather than interviews. The use of written responses does not provide as full an account as could be obtained from interviews and is also limited to parents literacy levels. Most parents had identied the onset of depressive symptoms in their child by early adolescence, but it was not until late adolescence, or later, that parents noted symptoms of mania. Because of the onset of symptoms during a crucial period of development, it was unsurprising that this was perceived by parents to have a considerable impact on social and occupational functioning. They reported that bipolar disorder had signicantly affected their childs ability to form and maintain social relationships, had alienated them from their peers, was responsible for a decline in educational or occupational functioning and had contributed to under- and over-achievement. Similar ndings were reported by Reinares et al. (2006), who also found that caregivers were most worried in relation to the patients work or study and social relationships. Most parents had noted the onset of symptoms by age 16 years, which is slightly lower than the age found by Perlis et al. (2004) in the Systematic Treatment Enhancement Program for Bipolar Disorder. That study found a mean age at onset of 17.37 years (SD 8.67), and identied 27.7% with an onset less than 13 years, and 37.6% between the ages of 13 and 18 years. Approximately 60% of that cohort had onset prior to 18 years. The research indicates that the onset of bipolar disorder occurs primarily over the adolescent years with the mean age at onset of bipolar disorder ranging from 17.4 years to 23.3 years (Kupfer et al. 2002, Grant et al. 2005, Goodwin & Jamison 2007, pp. 155220). This is the case across studies that have included bipolar I disorder only, bipolar I and bipolar II disorders, and those with bipolar spectrum disorders. Peak age at onset identied is in the 1519 years age group with 5360% of those with bipolar disorder having onset prior to 19 years. Given its onset during a crucial period of personal and social development, Inder et al. (2008) have noted its effect on identity development because of difculties in establishing continuity in their sense of self. The parents in our study identied depressive symptoms before mania symptoms, and it has been noted by Carlson & Meyer (2006) that there is considerable difculty associated with differentiating mania from comorbid symptoms, rages, sequelae of maltreatment and typical developmental phenomena. They noted that if the rst episode is depressive in nature, it often takes a number of years before mania declares itself. Emotion regulation is an issue during normal adolescent development, which complicates the process of distinguishing the symptoms of
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bipolar disorder, particularly symptoms of mania. Thase (2006) has noted that depressive episodes are more numerous and last longer than manias and are frequently misdiagnosed, and the correct diagnosis is often not made until there has been a treatment-emergent affective switch. It is of interest that without prompting 28% of the participants identied loss of a father through divorce primarily, and also death, as a possible contributor to the development of bipolar disorder. Childhood adversity was identied by Post & Leverich (2006) as a risk factor for vulnerability to early onset illness, and an array of stressors may be relevant to the onset, recurrence and progression of affective episodes. The reporting of childhood adversity has been supported by Rucklidge (2006), who found more traumatic events and negative life experiences reported by young people with a diagnosis of bipolar disorder with over 50% of the sample indicating a history of trauma compared with 10% of the controls. There is also supporting evidence for increased rates of early parental loss through divorce or death among clients with bipolar disorder (Kessler et al. 1997, Agid et al. 1999, Tyrka et al. 2008). Lu et al. (2008) have noted that adverse childhood experiences (including physical abuse, sexual abuse, parental mental illness, loss of parent, parental separation or divorce, witnessing domestic violence, and placement in foster or kinship care) contribute to worse mental and physical health and functional outcomes among adults with severe mood disorders. Similar to the parents in our study, Dore & Romans (2001) found that caregivers of clients with bipolar disorder appeared emotionally committed to the clients and showed considerable tolerance of problem behaviours. However, a number of studies have identied the burden associated with the caregiving role. van der Voort et al. (2007) found that the degree of burden experienced was inuenced by illness beliefs and that high burden was associated with greater severity of symptoms, difculties in the relationship with patient, lack of support and stigma. Perlick et al. (2007) found that the burdens experienced by family caregivers of people with bipolar disorder are associated with problems in health, mental health and cost, and they suggest that psychosocial interventions targeting the strains of caregiving for a patient with bipolar disorder are needed. Maskill et al. (2010) have identied that the support role was a source of both burden and benet for caregivers.

Conclusion
This study suggests that parents identify the impact on development of the onset of symptoms, and many nd this distressing and seek to nd explanations in signicant events in the childs life and the way in which they
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parented. Parents often blame themselves for the development of bipolar disorder in their child. Nursing care for clients with bipolar disorder could include interventions for the family to help them understand and manage the disorder. Such interventions could include: psycho-education based on a stress vulnerability model of aetiology to assist the parent to reduce the blame on herself/himself, communication enhancement training to enable both parent and child to communicate their needs and provide support for each other, and problem-solving skills training focusing on the identication of specic family problems and solutions. Such interventions could be based on what Goodwin & Jamison (2007) have proposed as an interplay between

biological and psychosocial factors that interact to create probable pathways to relapse: (1) stressful life events; (2) disruptions in social rhythms; and (3) medication nonadherence. The approach needs to elicit the meanings and feelings attached to the disorder by the parents and provide information regarding clinical evidence, not to discount the parents responses but to engage in a dialogue that enables less blaming meanings to emerge.

Acknowledgments
This study was funded by a New Zealand Health Research Grant.

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