Participants
A total of 14 parents (nine mothers, five fathers) were recruited. Average age of parents was 40.5 years (range = 33 to 49 years). Six children were diagnosed with depression, five children were diagnosed with bipolar disorder, and three children were diagnosed with schizophrenia. Characteristics of parents and children are presented in Table 2.
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Table 2: Participant Characteristics |
Themes
Five main themes emerged from the interviews: (1) Having Responsibility to Care for Children, (2) Feeling Guilt and Self-Blame, (3) Experiencing Loneliness and Helplessness, (4) Drained by Caregiving, and (5) Worrying About the Future. All themes are described below and quotations from the interviews are used as exemplars to support each theme and illustrate the important issues experienced by participants.
Theme 1: Having Responsibility to Care for Children. All parents expressed the responsibility to provide day-to-day care to their children and the word “participation” in this context sounded strange to them. They considered that caring for a hospitalized child was an unconditional aspect of being a parent. Parents also viewed themselves as the only person who knew their child's emotions, character, and behaviors, thus were the most suitable person for the responsibility of caring for their child.
It was my duty to take care of my child. I brought him up when he was a baby and I am the one who knows him best…. Indeed, every time he became emotionally unstable, I found out first.
At the same time, regardless of the age and severity of their child's mental illness, all parents claimed that their child was not able to take good care of themselves and had difficulties adapting to the hospital routine and environment. Parents considered that their absence would increase their child's psychological stress and make the mental illness worse and so did not want to leave their child alone.
…I cannot stand putting her in a strange environment, she may feel lonely, helpless and sad…her mental illness can be more serious.
Children with mental illness may require more individualized care, such as constant surveillance to control their behavioral problems, than children with other illnesses. However, it was impossible for children to receive adequate monitoring because of the shortage of nurses and nurses' heavy workloads. Parents took it for granted to be the protectors and advocators of their child to provide physical and emotional support. Thus, they did not hesitate to assume the responsibility of caring for their child during hospitalization.
During mealtime, the nurses only left the meal beside my child without monitoring the food intake. It was normal because there were other children waiting for food to be served…. So, it was better to take care of my child on my own.
Theme 2: Feeling Guilt and Self-Blame. Chinese parents believe that children experience no emotional disturbances as long as they are provided adequate economic security and a good educational environment (Tang et al., 2018). When seeing their child experience mental illness, many parents feel guilt and self-blame, perceiving their child's mental illness as a result of poor parenting or that they neglected their child's psychological problems.
When my child told me that she was always in a bad mood and wanted to die, I ignored her until her teacher told me that she cut herself with a knife.… I was not a qualified father.
Poor parenting also meant overindulging their child. Only children are viewed as the “only hope” to continue a vertical lineage of the family. They are often spoiled and overprotected by all family members, which possibly results in turning children into “greenhouse flowers” (i.e., just as flowers in a greenhouse cannot adapt to the outdoor environment, it is difficult for such children to solve problems independently and bear the setbacks of life) (Liu et al., 2013).
My child was not able to cope with frustrations in life because of being over-protected by family members. Therefore, it was difficult for my child to accept the failed exam, eventually resulting in mental illness.
Parents also experienced guilt regarding little time spent with other family members, especially older family members. Parents spent all their time, energy, and attention on monitoring their child's illness progression, particularly during times of emotional instability or when receiving treatment, thus neglecting older family members.
My mother was “heartbroken” and her physical condition became worse when she found that my daughter suffered from mental illness. However, I had no spare time to take care of her.
Theme 3: Experiencing Loneliness and Helplessness. Parents described different degrees of loneliness and helplessness while taking care of their child. According to the interview data, the source of loneliness and helplessness was lack of support and understanding from family, friends, and society.
No one can give you sustained help because they have their own family and life, and no one can really understand you…everyone thinks that you can take care of your child by yourself.
Lack of support also indicated lack of professional guidance on how to meet children's complex needs. Some parents often went to the internet for information about mental illness and appropriate caring. However, there was so much information on the internet that it was difficult for parents to distinguish which is reliable.
Medical staff always seemed to be busy and had no time to provide guidance for me…. I was not sure which information was correct when looking for the information by myself via the internet.
However, some parents reported that they received adequate support from their extended family, friends, and health care professionals. Peer support was also mentioned. Parents shared their experiences with other parents in a similar position and received valuable advice about caregiving, which made them face and accept this life transition positively.
We encouraged each other and shared care experiences and emotion difficulties with each other. It was good and helpful.
The stigma of mental illness also contributed to this sense of loneliness. Parents expressed that they often stayed in a closed-off interpersonal space and were unwilling to share what was happening to their child with their friends, relatives, and coworkers for fear of being judged.
I stopped socializing to avoid answering questions about my child. People would view my child as “mad” or “crazy” and judge me for not being a good father if I told someone what I was suffering.
Theme 4: Drained by Caregiving. Many children with mental illness need full, undivided attention in every aspect of life. Parents provided not only daily care to their child, but also paid close attention to their child's behavior to prevent injurious behavior toward self or others. Because of lack of adequate and effective support, parents were burdened by the challenges of caring for their child.
I had seldom cared for my child before. Now, I must learn to provide daily care to my child, keep an eye on my child's mental symptoms, and help my child cooperate with the doctor's treatment…. It was so hard and I felt stretched to the limit.
Parents lost their freedom in regard to activities and their social life, such as meeting friends, going shopping, and even spending time alone because of all the time spent taking care of their child. Parents became prisoners in their own lives with no time to relax. They experienced decreased well-being and declining health, physically and psychologically.
I had to stay at the hospital every day. I was too tired to do anything else…. I had trouble with sleeping and lost weight.
Parents who have one child hold higher expectations of bright futures for their child compared to parents who have more than one child. Thus, accepting the diagnosis of mental illness and adapting to the reality of losing the “perfect child” became a challenge for parents. Their lives were missing joy, as they were immersed in anxiety, sadness, and depression every day.
Why did my child suffer from mental illness? She should be an excellent person in the future. Was it something I did wrong? Why didn't my child grow up as healthy as other children?
Theme 5: Worrying About the Future. Parents experienced concerns about the future of their child. The majority of parents (60%) expressed that their child had been admitted to the hospital more than once. They worried about whether their child can recover and how long they need to keep caring for and supporting their child because of relapses of illness and repeated hospitalizations.
This was the second time for the child to be hospitalized. When will my son become healthy? How long would this life last?
Mental illness alienated children from their peers and influenced their educational or occupational function to a certain extent. Parents were also aware of their child's vulnerability and worried about their ability to cope in a highly competitive society as an adult.
The mental illness significantly affected my child's social relationships and learning function. How will he live on his own in the future?
Some parents were pessimistic about the future of their child and often described it in negative words. One father (P7) said, “Hope was self-deception. The more you dreamed the less you got in reality.” However, some parents had a hopeful outlook for the future when seeing the steady improvement of their child and other children's successful recovery.
Every time I got good news about gradual recovery, I always felt hopeful. Some children had successfully discharged from the hospital…. I believed my child must be back to normal life soon.
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Parents' Experiences of Caring for Their Only Child With Mental Illness in China: A Qualitative Study - Healio
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