Journal of Psychosocial Nursing and Mental Health Services

Original Article 

Parents' Experiences of Caring for Their Only Child With Mental Illness in China: A Qualitative Study

Qingqing Sheng, RN; Xi Zhang, RN; Chunfeng Cai, RN; Yan Shi, RN

Abstract

The current study explored Chinese parents' experiences of caring for their only child with mental illness. Face-to-face interviews with semi-structured questions were conducted to learn about the care experiences of parents whose only child had mental illness. Purposeful sampling was used to recruit parents (n = 14) and thematic analysis was used. Five themes were identified: (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. Parents who cared for their only child with mental illness experienced considerable emotional and physical challenges. Professionals and health care providers should recognize and understand the experiences of these parents to identity their needs and provide adequate support. Targeted support services and appropriate professional information should be developed and provided for parents to relieve them of negative caregiving experiences and improve their psychological and physical well-being. [Journal of Psychosocial Nursing and Mental Health Services, 59(1), 29–37.]

Abstract

The current study explored Chinese parents' experiences of caring for their only child with mental illness. Face-to-face interviews with semi-structured questions were conducted to learn about the care experiences of parents whose only child had mental illness. Purposeful sampling was used to recruit parents (n = 14) and thematic analysis was used. Five themes were identified: (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. Parents who cared for their only child with mental illness experienced considerable emotional and physical challenges. Professionals and health care providers should recognize and understand the experiences of these parents to identity their needs and provide adequate support. Targeted support services and appropriate professional information should be developed and provided for parents to relieve them of negative caregiving experiences and improve their psychological and physical well-being. [Journal of Psychosocial Nursing and Mental Health Services, 59(1), 29–37.]

The prevalence of mental health problems in children has continued to increase over the past 30 years (Coughlin & Sethares, 2017). It is estimated that approximately 13.6% of children and adolescents experience a diagnosable mental illness in a 12-month period (Lawrence et al., 2015). Studies have shown higher prevalence rates of mental illness in children and adolescents who live in developing countries compared to their peers from developed countries (Kieling et al., 2011). China is the most populous developing country, with 197 million schoolchildren (ages 6 to 18 years) as of 2011 (Xiaoli et al., 2014). In China, approximately 30 million children and adolescents age <17 years, most of whom are a family's only child, are troubled with various emotional or behavioral problems (Falbo & Hooper, 2015).

Frequent hospital stays and episodes of mental illness are traumatic events not only for children but also their parents (Crowe et al., 2011). Parents may feel distressed, helpless, and anxious as the primary caregivers (Brown, 2018; Clarke & Winsor, 2010; Crouch et al., 2019). Compared to children with physical disabilities, the severity of behavior problems exhibited by children with mental illness is worse, resulting in more challenges for parents and all aspects of family life (Johansson et al., 2019). For example, one study reported that children with behavioral problems require constant surveillance, control, and exertion from caregivers (Oruche et al., 2012). In addition, caregivers need to provide effective support to ensure that their children receive better treatment and care, while trying to maintain a harmonious family relationship (Ferrey et al., 2016; Oruche et al., 2012).

Apart from coping with the physical and emotional challenges of providing care, parents may experience support difficulties, including unmet service needs (Dellve et al., 2006; Taylor & Seltzer, 2011) and low levels of perceived family and social support (Pelentsov et al., 2015). Stigma and stereotypes of mental illness are obstacles for caregivers in gaining broad support (Kaushik et al., 2016). In addition, parents feel guilty and blame themselves for their child's illness, thinking it is a sign of poor parenting or genetic weakness when realizing the damage of illness to their loved one (Crowe et al., 2011; Ward & Gwinner, 2014). Participating in daily care of children may mean giving up paid work or reducing hours worked because of complex caregiving demands. Coupled with the considerable costs of treatment, parents are vulnerable to financial hardship (Zhou et al., 2016). Moreover, parents often worry about their child's studies, occupation, marriage, and social function in the future (Crowe et al., 2011; Darmi et al., 2017).

Since the 1970s, China has implemented a one-child policy and family planning program (Hua et al., 2014). Confucian philosophy stresses that the child is the continuation of a vertical lineage of the family and assumes the sole sustenance of lives and spirits of family (Lu & Lin, 1998). As a result, the only child, often described as the “only hope,” has become more precious to parents than ever (Jing, 2000; Zheng & Lawson, 2014). For example, parents in China continuously support their only child until college and/or marriage as well as into their adult lives (Yin et al., 2018). When their only child is sick, parents do not hesitate to put aside their jobs, family roles, or physical and physiological needs (Lam et al., 2006). However, unclear answers about the etiology and impossible radical cure of mental illness mean that caregiving can be ongoing (Johansson et al., 2019; Oruche et al., 2012). Therefore, parents become immersed in a maelstrom of emotions as the hope of their “perfect only child” diminishes. Feelings of helplessness and loss of control are common (Brown, 2018; Crouch et al., 2019). Many studies have shown that parents' reactions to their child's mental illness are based on the premise of providing support, which directly affects disease progression, treatment, and rehabilitation (Liu et al., 2006; Oruche et al., 2012). Thus, it is important for health care providers to understand the unique caregiving experiences of parents whose only child has mental illness.

The current study aims to describe parents' experiences of caring for their only child with mental illness from an inside perspective. A qualitative methodology was adopted to focus on the subjective experiences of caregivers, which is a valuable approach for helping shed light on how parents are able to sustain their caregiving role.

Method

Design

A qualitative descriptive approach (Braun & Clarke, 2006) was used to explore parents' experiences of caring for their only child with mental illness. Semi-structured face-to-face interviews were conducted in a psychiatric hospital to facilitate the exploration of challenges faced by parents.

Sample

A purposive sampling approach was used to recruit participants from a psychiatric hospital in Wuhan province, China. Influenced by Chinese child-centered social cultural context, most parents chose to accompany their child during hospitalization. The length of time parents stayed in the hospital depended on their child's recovery, which mostly ranged from 3 to 5 weeks, but could be as long as 3 months due recurrent episodes of illness. During hospitalization, children were provided treatment services, including medication management and group, physical, and family therapy according to their illness. Parents who stay with their children can meet their children's emotional needs and help them cooperate with treatment.

Inclusion criteria for parents were: (a) having an only child in the psychiatric hospital for >48 hours; (b) spending more time with their child than other family members; (c) able to communicate in Chinese; and (d) willing to be interviewed and share their experiences of caring for their child. Sample size was unknown before data collection and was determined once theoretical saturation was reached.

Date Collection

Semi-structured, audio-recorded, face-to-face interviews were the major means of data collection. The interview guide was developed after an extensive review of relevant literature on the experiences of parents who provide caregiving for their children with mental illness. Specialists in pediatric mental illness and experienced qualitative researchers with an interest in our study were asked to comment on the appropriateness, completeness, and applicability of questions in the interview guide. A pilot test was conducted during the first two interviews and several questions were revised. Because these interviews were considered high quality, provided valuable information, and the revisions were minor, they were included in the data analysis. A final interview guide was developed and confirmed by the research group (Table 1).

Semi-Structured Interview Guide

Table 1:

Semi-Structured Interview Guide

Interviews took place in an unoccupied room in the hospital or near the child's bedside. Interviews conducted at the bedside were to satisfy parents' requests because they did not want to leave their child alone. Interviews lasted from 25 to 35 minutes and researchers summarized the content to ensure that participants' perspectives were correctly noted and comprehended at the end of each key section of interviews. Interview data were collected from September to December 2019.

Data Analysis

A total of 14 interviews were included in the analysis. Thematic analysis was used to scrutinize the data. Braun and Clarke (2006) stated that thematic analysis can be used to identify, analyze, and find patterns in qualitative data and comprises six phases: (a) familiarization with the data, (b) generating initial codes, (c) searching for themes, (d) reviewing themes, (e) defining and naming themes, and (f) producing the report. The audio-taped interviews were transcribed verbatim by two researchers (S.Q., C.C.) who were fluent in Chinese and English. Transcripts of the interviews were read multiple times by all researchers to be familiar with the data and understand the content deeply. The first researcher (S.Q.) and second researcher (Z.X.) read the transcripts line-by-line to identify significant statements and extracted data in line with the aim of the study independently. Thereafter, researchers continued the data analysis by independently generating initial codes and transforming codes into themes. Several meetings were held among the researchers to discuss and review the themes until agreement was reached. Finally, the main five themes reflecting the content of the interviews were developed.

Rigor

Rigor of the qualitative study was assured using the following four criteria: credibility, dependability, confirmability, and transferability (Polit & Beck, 2012). To achieve credibility, the interviews were guided by interview questions that were based on a comprehensive literature review, and researchers had previous knowledge of performing qualitative interviews. Furthermore, specialists with clinical experience in pediatric mental illness were recruited to gain multiple perspectives. To enhance the dependability and confirm-ability, interviewers had no previous contact with participants and conducted all interviews, and two researchers independently analyzed and coded verbal and non-verbal data. Frequent discussions about findings among the researchers were conducted to achieve consensus through group meetings. In addition, quotations from the interviews were presented for each theme to prove the fairness and accuracy of the performed analysis. A detailed and clear description of the research design, participants, data collection, and analysis process was provided to establish transferability.

Ethical Considerations

Ethical approval was obtained from the Medical Research Ethics Committee of the authors' university. The hospital at which the study was conducted granted approval for this research. Each prospective participant was given a written information sheet explaining the purpose of the study in detail. In addition, participants were asked to read and sign an informed consent before the interview. Participants were also reminded that their participation was voluntary and they could decline or withdraw from the study at any time if the interview affected them negatively. Only the interviewers knew participants' identities, whereas the other researchers worked with anonymous data transcripts.

Results

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.

Participant Characteristics

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. (P2, mother)

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. (P6, mother)

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. (P14, mother)

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. (P7, 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. (P5, mother)

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. (P10, father)

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. (P8, mother)

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. (P11, mother)

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. (P12, mother)

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. (P10, father)

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. (P4, father)

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. (P8, mother)

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? (P5, mother)

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? (P4, father)

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? (P9, mother)

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. (P9, mother)

Discussion

In this exploratory study, we identified the experiences of parents who took care of their only child with mental illness in China. One important finding was that no matter the child's mental condition, parents believed it was their responsibility to accompany and take care of them during hospitalization. This result corresponded with a study by Lam et al. (2006). Chinese culture emphasizes family responsibility and obligation, in which parents take care of their young children and when these children become adults they take care of their aging parents (Yin et al., 2018). Thus, caring for family members is generally regarded as an expected, unconditional part of life in China. Furthermore, we also found that parents described nurses in the hospital as “busy” and they did not expect nurses to provide flexible and individualized care for their child. There is a serious shortage of nurses in China and each nurse is overworked to meet the growing caring demands of patients (Lu et al., 2015). Given that situation, parents worried that their child had difficulties fitting into the hospital environment and routine without quality care provided by nurses. In the current study, parents adjusted their time to provide flexible and individualized care for their child rather than require the hospital to change the medical environment. The process of adjusting oneself to avoid conflict and maintain harmony is an important cultural characteristic of Taoism, which has influenced the Chinese way of living and thinking to some extent (Falbo & Hooper, 2015).

There is a special cultural appropriateness in Chinese society, which is characterized by “expecting children to have a bright future” (Li et al., 2020). As a result, an only child, viewed as the “only hope” of the family, is often overprotected and overindulged by their two parents and four grandparents (Falbo & Hooper, 2015), which creates a generation of “Little Emperors,” who are vulnerable to the challenges in life (McLoughlin, 2005; Wang & Fong, 2009). In addition, influenced by the traditional Eastern culture that the body is the container of the psyche, Chinese parents pay more attention to their children's physical needs than emotional needs (Ren et al., 2018). These poor parenting styles of neglect and overprotection made the feelings of guilt and self-blame predominant in parents' accounts when accepting the diagnosis of mental illness of their child (McCann et al., 2011). Parents assumed a hero role and sacrificed their entire life to care for their child to restore their image as “good parents.” Self-sacrifice even involved putting other family roles, such as child, wife, or husband, aside. Meanwhile, filial piety is an important value in Chinese culture and emphasizes that children must support their aging parents (Cheng & Chan, 2006). Thus, parents in this study felt guilty for not having time to take care of their older parents.

The responsibility of being a care-giver and lack of support resulted in the experiences of loneliness and being drained by caregiving. The only-child policy has turned the traditional Chinese big-family structure to a small-family, with a “4-2-1” family structure, in which one adult couple raises one child and supports four older parents. Such change means that every family member has more caregiving responsibilities (Liu, 2006; Yeung et al., 2015). This small-family structure may explain why parents in the current study stated that getting support from extended family members and society was difficult or even impossible. Furthermore, parents' coping response to the fear of stigma, such as secrecy or denial, may also lead to a delay in seeking help and deepening feelings of loneliness (Kaushik et al., 2016). Many studies indicated that formal and informal support play a crucial role in reducing the feeling of uncertainty, providing emotional assistance, and alleviating care burden (Chen et al., 2016; Coyne et al., 2015; Skubby et al., 2015). Some parents expressed that they received good support and help from family members, health care professionals, and other parents of children with mental illness. However, many used the word “lonely” to describe their experience of caregiving. One possible explanation may be that when parents are overburdened they do not experience the meaningful and positive aspects of caregiving (Lippi, 2016).

Previous research has shown that parents of children with mental illness shoulder greater responsibility and burden, which often negatively affected their quality of life and psychological and physical well-being compared to parents of children with developmental disabilities (Darmi et al., 2017; Oeseburg et al., 2010). Due to the long-run one-child policy, parents have become child-centered and put all expectations in their only child, and consequently the mental illness of their only child has more negative impact on them than that of parents of mulitple children (Wei et al., 2016). One study indicated that if parents' negative experiences are not relieved in time, they may have a cumulative effect leading to parents' mental disorders (Xu, 2016). Therefore, it is suggested to explore the impact of caring for children with mental illness on parents to help alleviate negative experiences.

The theme of worrying about their child's future was similar to findings reported by Crowe et al. (2011), who found that caregivers had considerable concerns in relation to their child's social relationships and the ability to work, study, and live life as an adult. However, it is difficult to offer clear answers about the radical cure and prognosis of mental illness, therefore children with mental illness may require continuous treatment (Darmi et al., 2017; Oruche et al., 2012). In addition, mental illness occurred in a crucial period of growth and development, thus some parents considered that the illness had a considerable impact on their child and described their caregiving experiences as hopeless (Crowe et al., 2011). McCann et al. (2011) stated that parents can be easily influenced by their current situation, believing that their present circumstance reflects the future. However, some parents conveyed a willingness to be hopeful for the future when seeing the steady improvement of their child and other children's successful recovery. One study revealed that high levels of hope tended to promote individuals to generate new life goals, strengthen their own resilience, and focus positively on the future (Fite et al., 2014). It is therefore recommended that services based on parents' needs and preferences be adopted to foster hope.

Inconsistent with previous studies (Hadry et al., 2011; Zhai et al., 2013), parents did not put much emphasis on financial cost of treatment in the current study. It is possible that families of only children comprise the social norm in urban China, where parents generally have high education levels and incomes (Falbo & Hooper, 2015). However, it is noteworthy that even parents with low incomes or those who gave up paid work did not express fi-nancial hardship in the current study. This omission may be related to the emphasis on maintenance of “face” in Chinese culture, in which individuals do not casually mention their financial concerns in front of non-family members (McCann et al., 2011). Therefore, health professionals should take the initiative to pay attention to parents' financial burden and provide information about public financial assistance.

Limitations

The current study has several limitations. First, the sample composition was uneven, with nine mothers and four fathers. Although this may reflect the fact that most primary caregivers in China are females, it limits the findings to only one gender, as males may have different care experiences than females. Second, participants all came from one hospital in central China, which may not be representative of other hospitals. Therefore, the results cannot be generalized. However, generalizability is not a primary consideration in qualitative research (Sandelowski, 1993) and many findings in the current study should be useful to parents whose only child has mental illness. Another limitation is that some meanings inherent in participants' responses may have been inaccurate or distorted, even though rigorous language translation was performed.

Implications for Practice

The current study shows that psychiatric nurses should focus not only on the mental illness of children but also on their parents' psychosocial needs, especially parents whose only child is diagnosed with mental illness. Professional information about mental illness should be transmitted to instruct parents how to take better care of their child. Regular education lectures about where to find accurate information are essential. Furthermore, authoritative institutes or websites should be established to provide reliable knowledge and information about mental illness to help parents resolve problems in caregiving experiences.

Providing education on self-care, such as stress management and participation in a self-help group, is necessary for caregivers to self-regulate and manage their negative experiences. Stress management has been proven to be associated with reduction of depression and anxiety symptoms (Hasanvandi et al., 2013). In addition, parents should be encouraged to join support spaces (e.g., Wechat) and/or groups, where they can feel safe sharing intimate thoughts and feelings, thus helping them alleviate loneliness, guilt, stress, and stigma issues. Furthermore, parents whose children have recovered from mental illness can be invited to the space to share their caregiving experience to encourage parents to be hopeful about the future. Development of a support space can give caregivers more confidence to meet challenges and seek support when faced with stress (Ferrey et al., 2016). In addition, nurse managers should use effective strategies to ensure adequate nurse manpower in psychiatric wards to provide quality care.

Conclusion

The current study is the first to explore parents' experiences of caring for their only child with mental illness in China. It provided a comprehensive basis for better understanding parents' caregiving experiences and facilitating clinical practices among health care providers. Parents who care for their child with mental illness are faced with considerable challenges of meeting complex care needs and negative physical and emotional experiences, including responsibility for caregiving, loneliness, guilt, exhaustion, and concern about the future. Professionals and health care providers should recognize and understand the experiences of parents who care for their child with mental illness to identify their needs and provide adequate support. Targeted services that focus on improving psychological and physical well-being of parents should be developed during children's hospitalization and appropriate and reliable professional information on mental illness should be provided.

References

  • Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101 doi:10.1191/1478088706qp063oa [CrossRef]
  • Brown, J. (2018). Parents' experiences of their adolescent's mental health treatment: Helplessness or agency-based hope. Clinical Child Psychology and Psychiatry, 23(4), 644–662 doi:10.1177/1359104518778330 [CrossRef] PMID:29895179
  • Chen, F. P., Gearing, R. E., DeVylder, J. E. & Oh, H. Y. (2016). Pathway model of parental help seeking for adolescents experiencing first-episode psychosis. Early Intervention in Psychiatry, 10(2), 122–128 doi:10.1111/eip.12159 [CrossRef] PMID:
  • Cheng, S. T. & Chan, A. C. (2006). Filial piety and psychological well-being in well older Chinese. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 61(5), 262–269 doi:10.1093/geronb/61.5.P262 [CrossRef] PMID:
  • Clarke, D. & Winsor, J. (2010). Perceptions and needs of parents during a young adult's first psychiatric hospitalization: “We're all on this little island and we're going to drown real soon.”Issues in Mental Health Nursing, 31(4), 242–247 doi:10.3109/01612840903383992 [CrossRef] PMID:20218767
  • Coughlin, M. B. & Sethares, K. A. (2017). Chronic sorrow in parents of children with a chronic illness or disability: An integrative literature review. Journal of Pediatric Nursing, 37, 108–116 doi:10.1016/j.pedn.2017.06.011 [CrossRef] PMID:28751135
  • Coyne, I., McNamara, N., Healy, M., Gower, C., Sarkar, M. & McNicholas, F. (2015). Adolescents' and parents' views of Child and Adolescent Mental Health Services (CAMHS) in Ireland. Journal of Psychiatric and Mental Health Nursing, 22(8), 561–569 doi:10.1111/jpm.12215 [CrossRef] PMID:25977175
  • Crouch, L., Reardon, T., Farrington, A., Glover, F. & Creswell, C. (2019). “Just keep pushing”: Parents' experiences of accessing child and adolescent mental health services for child anxiety problems. Child: Care, Health and Development, 45(4), 491–499 doi:10.1111/cch.12672 [CrossRef] PMID:30990911
  • Crowe, M., Inder, M., Joyce, P., Luty, S., Moor, S. & Carter, J. (2011). Was it something I did wrong? A qualitative analysis of parental perspectives of their child's bipolar disorder. Journal of Psychiatric and Mental Health Nursing, 18(4), 342–348 doi:10.1111/j.1365-2850.2010.01673.x [CrossRef] PMID:21418434
  • Darmi, E., Bellali, T., Papazoglou, I., Karamitri, I. & Papadatou, D. (2017). Caring for an intimate stranger: Parenting a child with psychosis. Journal of Psychiatric and Mental Health Nursing, 24(4), 194–202 doi:10.1111/jpm.12367 [CrossRef] PMID:
  • Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A. & Hallberg, L. R. (2006). Stress and well-being among parents of children with rare diseases: A prospective intervention study. Journal of Advanced Nursing, 53(4), 392–402 doi:10.1111/j.1365-2648.2006.03736.x [CrossRef] PMID:16448482
  • Falbo, T. & Hooper, S. Y. (2015). China's only children and psychopathology: A quantitative synthesis. The American Journal of Orthopsychiatry, 85(3), 259–274 doi:10.1037/ort0000058 [CrossRef] PMID:25894306
  • Ferrey, A. E., Hughes, N. D., Simkin, S., Locock, L., Stewart, A., Kapur, N., Gun-nell, D. & Hawton, K. (2016). The impact of self-harm by young people on parents and families: A qualitative study. BMJ Open, 6(1), e009631 doi:10.1136/bmjopen-2015-009631 [CrossRef] PMID:26739734
  • Fite, P. J., Gabrielli, J., Cooley, J. L., Haas, S., Frazer, A., Rubens, S. L. & Johnson-Motoyama, M. (2014). Hope as a moderator of the associations between common risk factors and frequency of substance use among Latino adolescents. Journal of Psychopathology and Behavioral Assessment, 36(4), 653–662 doi:10.1007/s10862-014-9426-1 [CrossRef] PMID:
  • Hadry, T., Adamowski, T. & Kiejna, A. (2011). Mental disorder in Polish families: Is diagnosis a predictor of caregiver's burden?Social Psychiatry and Psychiatric Epidemiology, 46(5), 363–372 doi:10.1007/s00127-010-0200-8 [CrossRef] PMID:
  • Hasanvandi, S., Valizade, M., Honarmand, M. M. & Mohammadesmaeel, F. (2013). Effectiveness of stress management on mental health of divorced women. Procedia: Social and Behavioral Sciences, 84, 1559–1564 doi:10.1016/j.sbspro.2013.06.788 [CrossRef]
  • Hua, J., Jin, H., Gu, G., Liu, M., Zhang, L. & Wu, Z. (2014). The influence of Chinese one-child family status on developmental coordination disorder status. Research in Developmental Disabilities, 35(11), 3089–3095 doi:10.1016/j.ridd.2014.07.044 [CrossRef] PMID:25137180
  • Jing, J. (2000). Feeding China's little emperors: Food, children, and social change [book in Chinese]. Stanford University Press.
  • Johansson, A., Anderzén-Carlsson, A. & Ewertzon, M. (2019). Parents of adult children with long-term mental disorder: Their experiences of the mental health professionals' approach and feelings of alienation–A cross sectional study. Archives of Psychiatric Nursing, 33(6), 129–137 doi:10.1016/j.apnu.2019.10.002 [CrossRef] PMID:31753218
  • Kaushik, A., Kostaki, E. & Kyriakopoulos, M. (2016). The stigma of mental illness in children and adolescents: A systematic review. Psychiatry Research, 243, 469–494 doi:10.1016/j.psychres.2016.04.042 [CrossRef] PMID:27517643
  • Kieling, C., Baker-Henningham, H., Belfer, M., Conti, G., Ertem, I., Omigbodun, O., Rohde, L. A., Srinath, S., Ulkuer, N. & Rahman, A. (2011). Child and adolescent mental health worldwide: Evidence for action. Lancet, 378(9801), 1515–1525 doi:10.1016/S0140-6736(11)60827-1 [CrossRef] PMID:22008427
  • Lam, L. W., Chang, A. M. & Morrissey, J. (2006). Parents' experiences of participation in the care of hospitalised children: A qualitative study. International Journal of Nursing Studies, 43(5), 535–545 doi:10.1016/j.ijnurstu.2005.07.009 [CrossRef] PMID:
  • Lawrence, L., Johnson, S. & Hafekost, J. (2015). The mental health of children and adolescents. Department of Health.
  • Li, L., Shi, J., Wu, D. & Li, H. (2020). Only child, parental educational expectation, self-expectation and science literacy in Zhuang adolescents in China: A serial mediation model. Children and Youth Services Review, 115, 105084 doi:10.1016/j.childyouth.2020.105084 [CrossRef]
  • Lippi, G. (2016). Schizophrenia in a member of the family: Burden, expressed emotion and addressing the needs of the whole family. The South African Journal of Psychiatry, 22(1), 922 doi:10.4102/sajpsychiatry.v22i1.922 [CrossRef] PMID:30263163
  • Liu, W. (2006). Analysis of the four-two-one family structure resulting from the only-one-child policy. Shenyang Nongye Daxue Xuebao, 8, 462–464.
  • Liu, W., Du, C. & Wang, L. (2006). Investigation results and analysis of psychosocial problems of 100 relatives of schizophrenic patients. Harbin Medicine, 6(26), 41–42.
  • Liu, W., Liu, D. & Zhang, Z. (2013). The characteristics of internal working model of attachment for children and its relationship with temeperament and parenting. China Journal of Health Psychology21(3), 426–428 doi:10.13342/j.cnki.cjhp.2013.03.019 [CrossRef]
  • Lu, L. & Lin, Y. Y. (1998). Family roles and happiness in adulthood. Personality and Individual Differences, 25(2), 195–207 doi:10.1016/S0191-8869(98)00009-9 [CrossRef]
  • Lu, M., Ruan, H., Xing, W. & Hu, Y. (2015). Nurse burnout in China: A questionnaire survey on staffing, job satisfaction, and quality of care. Journal of Nursing Management, 23(4), 440–447 doi:10.1111/jonm.12150 [CrossRef] PMID:
  • McCann, T. V., Lubman, D. I. & Clark, E. (2011). First-time primary caregivers' experience of caring for young adults with first-episode psychosis. Schizophrenia Bulletin, 37(2), 381–388 doi:10.1093/schbul/sbp085 [CrossRef] PMID:
  • McLoughlin, C. S. (2005). The coming-of-age of China's single-child policy. Psychology in the Schools, 42(3), 305–313 doi:10.1002/pits.20081 [CrossRef]
  • Oeseburg, B., Jansen, D. E. M. C., Groothoff, J. W., Dijkstra, G. J. & Reijneveld, S. A. (2010). Emotional and behavioural problems in adolescents with intellectual disability with and without chronic diseases. Journal of Intellectual Disability Research, 54(1), 81–89 doi:10.1111/j.1365-2788.2009.01231.x [CrossRef] PMID:20122098
  • Oruche, U. M., Gerkensmeyer, J., Stephan, L., Wheeler, C. A. & Hanna, K. M. (2012). The described experience of primary caregivers of children with mental health needs. Archives of Psychiatric Nursing, 26(5), 382–391 doi:10.1016/j.apnu.2011.12.006 [CrossRef] PMID:22999034
  • Pelentsov, L. J., Laws, T. A. & Esterman, A. J. (2015). The supportive care needs of parents caring for a child with a rare disease: A scoping review. Disability and Health Journal, 8(4), 475–491 doi:10.1016/j.dhjo.2015.03.009 [CrossRef] PMID:25959710
  • Polit, D. F. & Beck, C. T. (2012). Nursing research: Generating and assessment evidence for nursing practice. Wolter Kluwer Health/Lippincott Williams & Wilkins.
  • Ren, Z., Zhang, P., Wang, H. & Wang, H. (2018). Qualitative research investigating the mental health care service gap in Chinese burn injury patients. BMC Health Services Research, 18(1), 902 doi:10.1186/s12913-018-3724-3 [CrossRef] PMID:30486854
  • Sandelowski, M. (1993). Rigor or rigor mortis: The problem of rigor in qualitative research revisited. Advances in Nursing Science, 16(2), 1–8 doi:10.1097/00012272-199312000-00002 [CrossRef] PMID:8311428
  • Skubby, D., Bonfine, N., Tracy, H., Knepp, K. & Munetz, M. R. (2015). The help-seeking experiences of parents of children with a first-episode of psychosis. Community Mental Health Journal, 51(8), 888–896 doi:10.1007/s10597-015-9877-1 [CrossRef] PMID:25876766
  • Tang, W., Wang, G., Hu, T., Dai, Q., Xu, J., Yang, Y. & Xu, J. (2018). Mental health and psychosocial problems among Chinese left-behind children: A cross-sectional comparative study. Journal of Affective Disorders, 241, 133–141 doi:10.1016/j.jad.2018.08.017 [CrossRef]30121025
  • Taylor, J. L. & Seltzer, M. M. (2011). Changes in the mother-child relationship during the transition to adulthood for youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 41(10), 1397–1410 doi:10.1007/s10803-010-1166-9 [CrossRef] PMID:
  • Wang, Y. & Fong, V. L. (2009). Little emperors and the 4:2:1 generation: China's singletons. Journal of the American Academy of Child and Adolescent Psychiatry, 48(12), 1137–1139. doi:10.1097/CHI.0b013e3181bc72f8 [CrossRef] PMID:
  • Ward, L. & Gwinner, K. (2014). Understanding parents' lived experiences of their child's admission to an acute mental health care facility. Journal of Psychosocial Nursing and Mental Health Services, 52(7), 24–2924694246
  • Wei, Y., Jiang, Q. & Gietel-Basten, S. (2016). The well-being of bereaved parents in an only-child society. Death Studies, 40(1), 22–31 doi:10.1080/07481187.2015.1056563 [CrossRef] PMID:
  • Xiaoli, Y., Chao, J., Wen, P., Wenming, X., Fang, L., Ning, L., Huijuan, M., Jun, N., Ming, L., Xiaoxia, A., Chuanyou, Y., Zenguo, F., Lili, L., Lianzheng, Y., Lijuan, T. & Guowei, P. (2014). Prevalence of psychiatric disorders among children and adolescents in northeast China. PLoS One, 9(10), e111223 doi:10.1371/journal.pone.0111223 [CrossRef] PMID:25360718
  • Xu, B. Q. (2016). Adversity and adjustment: Family resilience in one-child-died families–Based on the families in YS District [Master's thesis]. Central China Normal University.
  • Yeung, E. H., Szeto, A., Richardson, D., Lai, S. H., Lim, E. & Cameron, J. I. (2015). The experiences and needs of Chinese-Canadian stroke survivors and family caregivers as they re-integrate into the community. Health & Social Care in the Community, 23(5), 523–531 doi:10.1111/hsc.12164 [CrossRef] PMID:
  • Yin, Q., Shang, Z., Zhou, N., Wu, L., Liu, G., Yu, X., Zhang, H., Xue, H. & Liu, W. (2018). An investigation of physical and mental health consequences among Chinese parents who lost their only child. BMC Psychiatry, 18(1), 45 doi:10.1186/s12888-018-1621-2 [CrossRef] PMID:29433470
  • Zhai, J., Guo, X., Chen, M., Zhao, J. & Su, Z. (2013). An investigation of economic costs of schizophrenia in two areas of China. International Journal of Mental Health Systems, 7(1), 26 doi:10.1186/1752-4458-7-26 [CrossRef] PMID:24237846
  • Zheng, Y. & Lawson, T. R. (2015). Identity reconstruction as Shiduers: Narratives from Chinese older adults who lost their only child. International Journal of Social Welfare, 24(4), 399–406 doi:10.1111/ijsw.12139 [CrossRef]
  • Zhou, Y., Rosenheck, R., Mohamed, S., Ou, Y., Ning, Y. & He, H. (2016). Comparison of burden among family members of patients diagnosed with schizophrenia and bipolar disorder in a large acute psychiatric hospital in China. BMC Psychiatry, 16, 283 doi:10.1186/s12888-016-0962-y [CrossRef] PMID:27515535

Semi-Structured Interview Guide

No. Question
1 What was it like when your child was admitted to the psychiatric hospital?
2 What were your experiences during your child's stay in the psychiatric hospital?
3 What were your challenges and difficulties in caring for your child?
4 What aspects could be improved about the care you received?
5 Has your life been affected? How did you cope? Who or what helped you during these periods?
6 What are your expectations for your child's future?

Participant Characteristics

Participant No. Parents Children
Parental Role Age (Years) Educational Level Marital Status Age (Years) Gender Diagnosis
P1 Father 33 High school Married 12 Male Depression
P2 Mother 42 High school Married 17 Male Bipolar disorder
P3 Mother 40 Bachelor's degree Married 18 Female Bipolar disorder
P4 Father 37 High school Single 12 Male Schizophrenia
P5 Mother 34 Junior high school Married 14 Female Depression
P6 Mother 36 High school Married 14 Female Bipolar disorder
P7 Father 45 Bachelor's degree Married 16 Female Bipolar disorder
P8 Mother 36 Bachelor's degree Married 13 Female Depression
P9 Mother 38 Junior high school Married 12 Male Bipolar disorder
P10 Father 49 High school Single 18 Female Depression
P11 Mother 45 Bachelor's degree Single 17 Female Schizophrenia
P12 Mother 48 High school Married 18 Male Schizophrenia
P13 Father 45 Bachelor's degree Married 16 Female Depression
P14 Mother 39 High school Married 14 Male Depression
Authors

Ms. Sheng is Graduate Student, Ms. Zhang is Graduate Student, and Ms. Cai is Associate Professor of Nursing, School of Health Sciences, Wuhan University, and Ms. Shi is Head Nurse, Wuhan Mental Health Center, Wuhan, Hubei, China.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Chunfeng Cai, RN, Associate Professor of Nursing, School of Health Sciences, Wuhan University, No.115 Donghu Road, Wuchang District, Wuhan City, Hubei Province, 430072, China; email: 1660433132@qq.com.

Received: May 04, 2020
Accepted: July 28, 2020
Posted Online: October 23, 2020

10.3928/02793695-20201001-02

Sign up to receive

Journal E-contents