Authors

1. Mu, Pei-Fan RN, PhD
2. Sheng, Ching-Ching RN, MSN
3. Tung, Pei-Chi RN, BN
4. Lo, Pao-Chen RN
5. Huang, Ling-Ya RN
6. Lee, Mei-Yin RN, PhD
7. Chen, Yi-Wei MD

Abstract

Review question/objective: This study intends to understand the experiences of family members when learning that a child or adolescent in their family has been diagnosed with cancer. This study integrated the research findings of relevant existing studies to provide empirical evidence-based suggestions on clinical care.

The review question is: What are the experiences of family members when learning that a child or adolescent in their family has been diagnosed with cancer?

Background: When a family is informed that their child has been diagnosed with cancer, such information is undoubtedly a shock to them. During the initial stages of cancer, children and their families experience the most chaotic moment of their lives. On the one hand, parents have to face their overwhelming emotions. On the other hand, they have to wipe away their tears to continuously face many potential challenges and the impact that the cancer will have on their child. After learning of the fact that their child is suffering from cancer, parents must rapidly make medical decisions because their children have to immediately undergo a series of tests, receive a series of treatments and they are pushed by the urgency of treatment during the initial stage.1 In addition, children with cancer usually receive treatment under the condition that they have no knowledge about their disease and have not prepared for it.2 Children with cancer are not the only people experiencing physical and psychological fatigue. During the treatment course, their families also suffer from stress and a sense of loss at various levels. Faced with the disease treatment process, children will have certain physical and psychological responses, a sense of uncertainty for prognosis3 and experience changes in family role,4 family function and lifestyle.5 Therefore, children with cancer desire to obtain relevant information and suggestions and assistance about how to respond to it. As a result, families of a child diagnosed with cancer have to face tremendous and complicated pressure in the initial stages of cancer.

A family is a living system. The initial stage of cancer is the beginning of the upheaval of the overall family life. Relevant studies point out that the intensive course of treatment has a strong physical and psychological impact on children and may make them experience a sense of uncertainty and feel panic.3, 6 A study also shows that the shorter the time of diagnosis and the less relevant the knowledge is, the higher is the sense of uncertainty in children with cancer. In addition, the sense of uncertainty is also significantly correlated with psychological stress.7 Moreover, other members in a family, such as parents and healthy siblings, also experience stress.

The role of the parent involves a complicated process. According to scholars' definitions of the 'parenting role', the properties of the parenting role include: taking care of children, regulating children's behavior, providing an environment beneficial to their development and establishing the emotional bond between parents and children.8 The characteristics and importance of the role of parents can particularly be reflected when a family experiences a specific stressful event. In the beginning, parents' responses to the diagnosis of cancer in their child may include astonishment, worry, pain and despair. Such experiences include the sense of loss and despair for life.9, 10 Moreover, parents also experience a sense of uncertainty of the condition, medical treatment and prognosis of their child with cancer.3, 6 In addition to crying or expressing their sorrow verbally, the stress that parents may also manifest through physical symptoms. For example, parents may experience sleep disorders, fatigue and psychological emotions due to the changes in the disease condition of their child. They are worried about a possible relapse and the prognosis of the disease. They may even experience symptoms of anxiety and depression. To provide children with cancer with better medical treatment, many family members will take care of the child in hospital, leading to separation from family, changes in life and work, rise of economic burden, decreased interaction with the external world, failure to take care of the family, neglect of healthy siblings and even the development of social isolation and changes in social role.5, 11

In the initial stages of cancer, parents facing such a stress will require different adjustment strategies to respond to the stress of their child suffering from cancer. Such strategies include assessment-oriented coping strategies, emotion-oriented coping strategies and problem-oriented coping strategies. Some studies indicated that emotion-oriented coping strategies used by most of the parents include hiding emotions and escaping from questions to avoid experiencing too many emotions.12-14 Information concerning the disease and care will help parents decrease their sense of chaos and provide them with feelings of control. The provision of appropriate information at an adequate time enables parents to feel secure even under uncertain conditions and enables families to have the opportunity to prepare for and jointly participate in the care of their child with cancer. Moreover, some studies also suggested that medical personnel should provide information on the disease and diagnosis in a frank and open manner, have respect for the privacy of parents and children, enable parents to have time to express their emotions and to answer their questions, as this will be beneficial to parents' coping strategies.5, 14, 15

Life-threatening diseases and treatments have a psychological impact on the children suffering from them.7, 16 In the initial stage of cancer, the less knowledge the family has about cancer, the higher the anxiety of the parents and the higher the uncertainty of the child.7 The stress responses of children with cancer may include sorrow, anxiety, concern about death, concern about academic performance, loss of sense of control and sense of uncertainty.3, 7 The sudden confirmation of the diagnosis of cancer astonishes patients and nearly all affected children express sorrow and worry at various levels. The stress sources from physical aspects include pain caused by the examinations and treatment of relevant diagnoses (e.g. intravenous injections, blood tests, bone marrow aspiration and spinal puncture) and discomforts such as lack of appetite, nausea, vomiting and fatigue after the chemotherapy.2, 3 The stress sources from the psychosocial aspects include restrictions on activities, sense of alienation and change in appearance.2, 3 Most children diagnosed with cancer cannot go home or go to school because the chemotherapy restricts their activities. They may therefore experience a sense of alienation because they cannot see their friends and family. Moreover, the change in appearance (e.g. hair loss) in older children with cancer is the main factor affecting their sense of happiness in terms of the psychosocial aspect.2, 15

There are many studies that focus on children faced with the initial stages of cancer. The coping strategies can be categorized into positive and negative coping frameworks. The positive coping strategies include perception adjustment, relaxation, practical strategies, seeking social support and emotional expression. The negative coping strategy is distraction.3 Moreover, the strategies used by children with cancer are mainly correlated with their age and are irrelevant with their gender and diagnosis. Compared with adolescents (aged 12-16), school-aged children (aged 9-12) use emotion-oriented coping strategies more frequently. Emotion-oriented coping strategies include escape, alienation, self-control, positive assessment and acceptance of responsibility. Problem-oriented coping strategies include seeking social support, planned problem-solving and pacification.17

Children with cancer are certainly the focus of family attention and care during the diagnosis of the disease. When the focus of family life is put on a child with cancer, financial and emotional support from the family may both be provided for the child with cancer. Therefore, the siblings of children with cancer will generally experience changes in life, nervous feelings and needs that cannot be satisfied.18 Changes in life are the most common phenomena, including the changes in their family relationship, family dynamics and life regulations. The frequent hospitalization, clinic visits and treatments will hinder the life order of the family. Parents do not have time to accompany healthy siblings and they are often taken care of by grandparents or neighbors. Because mothers usually take care of children with cancer in hospitals, the familiar family dynamics and roles may be shattered. Fathers or older siblings must adapt themselves to the role of the mother. Siblings must also handle the extra family affairs and undertake additional responsibilities. In addition, there are also studies that suggest that families with children with cancer have closer relationships and are more united. Handling family affairs and undertaking responsibilities may enable siblings to become more independent and mature.18-20

To the siblings, the cancer experience brings about complicated and contradictory feelings and emotions such as sorrow, loneliness, refusal, anxiety, anger, jealousy and guilt.18-20 Sorrowful emotions include the concern over the therapeutic effect for the child with cancer, concern over the possibility of death and missing their parents and past life.19 Some siblings may develop adjustment strategies or behavioral problems. In general, the shorter the time of diagnosis, the more pain siblings experience. They may even experience academic problems within two years after the cancer diagnosis.20 Therefore, understanding siblings' experiences can help them respond to stress. To provide siblings with open and honest communication channels, to properly provide them with the information on cancer, to enable them to jointly take care of children with cancer and to support and maintain their interests and activities can reduce their maladaptation.18

Wong and Chen describe the coping experiences of Chinese parents with children diagnosed as having cancer during the treatment stage.10 A phenomenological approach was used. Four themes emerged describing parents' coping experiences: shock and denial, establishing the meaning or the situation, confronting reality, and establishing a new perspective.10 Chen and Chen conducted a phenomenological study to investigate the lived experience of a family with a child diagnosed with cancer.5 Three main themes were identified: families' emotional experience when encountering the disease, changes to the family during the child's hospitalization, the endeavor to live and for future life.5 Chui and Lo describe changes in the experiences of preschool and school-aged siblings of children with cancer.21 The findings indicate that there are three different changes in experience: changes in psychological status, changes in family interaction, and changes in social relationships. Based on the above, during the initial onset period of cancer, the children with cancer, as well as their parents and siblings, experience physical and mental sufferings and frustration due to the sudden discovery of cancer, thereby affecting their original interpersonal relationships.21

In general, the unexpected occurrence of cancer has numerous effects on family members in various aspects. Many studies focus on investigation of the experiences of parents (or primary caregivers), or on children and adolescents with cancer or their siblings. There is a lack of studies investigating cancer-related experiences from the perspective of the family. To date, no meta-synthesis of qualitative findings has been published on this topic. Therefore, it is hoped that this systemic qualitative review on studies with relevant themes can help explore the experiences of the family of children with cancer in the initial stages. Moreover, this review intends to further probe into such a phenomenon, which may help medical and nursing personnel to perform a comprehensive assessment from a family-centered perspective to assess family condition or discover potential family programs and provide families with assistance in a timely manner.