Symptom and Illness Experience for English and Spanish-Speaking Children with Advanced Cancer: Child and Parent Perspective (original) (raw)
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Journal of Comprehensive Pediatrics
Background: Diagnostician of cancer in children can influence their parents' life due to the fact that the disease may threaten the patient's life. It can also put a great burden of care on their parents. Objectives: In this study, we tried to clear the feelings of parents who experience the phenomenon of caring a child with cancer. Methods: The present study has been conducted as a qualitative research with phenomenological approach. Participants were selected with purposeful sampling among 13 parents with an average age of 33.2 and we continued sampling until data saturation. Information was collected by in-depth interviews. The process of interviews was valid and acceptable. Finally, data were categorized as content frameworks (themes) and analyzed with the Colizzi method. Results: The extracted content is consisted of eight main subheadings that include the parents anxiety of the death of their children, parents inability to respond to the questions of their children, parents inability to have an appropriate behavior while confronting the children angry, parents suffering of treatment side effects in their children, the pressure of economic, social, and psychological burden on family, lack of time, experienced the impact of spiritual support, and influence on the relationship between parents and 18 subthemes. Conclusions: Taking care of a child with cancer may have an influence on the parents' life in different aspects and on their quality of life. Regarding the severity of this experiment on the life of parents and due to the sensitivity of this issue, it seems necessary that the results of this study be considered by the country's health policy makers.
Listening to Parents of Children With Cancer-Between Life and its end
Journal of Patient Experience, 2022
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Parental experience of childhood cancer using Interpretative Phenomenological Analysis
Psychology & Health, 2011
Whilst survival rates for childhood cancer have improved dramatically over the past three decades, it is still a devastating diagnosis for family members and an illness which severely disrupts the lifestyle of the family unit. Developing an understanding of the impact of the illness on the family is crucial to better support families' deal with the demands of the illness. In this study 9 families in which a child was diagnosed with cancer were interviewed twice over a 12 month period, approximately 6 months apart. Using Interpretative Phenomenological Analysis (IPA), a semi-structured interview was used to explicate parent's experience of childhood cancer. The results revealed 5 super ordinate themes; (1) a pivotal moment in time, (2) the experience of adaptation in relation to having a sick child, (3) the nature of support, (4) re-evaluation of values during a critical life experience and (5) the experience of optimism and altruism. Findings indicate that parents express both negative and positive experiences as they reevaluate the meaning and purpose of life, seek to redefine themselves, often in terms of priorities, relationships, sense of community, and achieve degrees of optimism and altruism. Implications for addressing the needs of parents and for further research are discussed.
2021
This study aimed to explore the lived experiences of family carers in the care of children with cancer. Method: A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Results: Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. Conclusions: This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations.
Reactions of family members of children diagnosed with cancer: a descriptive study
Online Brazilian Journal of Nursing, 2014
Aims: to identify the reactions of relatives after a diagnosis of pediatric cancer; to describe the work of the nursing team based on these reactions; to analyze the expectation of the family regarding nursing care based on the diagnosis of pediatric cancer. Method: this is a qualitative, descriptive research performed in an onco-hematologic ward located in the state of Rio de Janeiro, Brazil. For data collection, semi-structured interviews were used. Results: this study generated some thematic units: the reactions of relatives based on the diagnosis of pediatric cancer; the work of the nursing team based on the reactions of the family of the child with the diagnosis of cancer; expectation of the relatives regarding the work of the nursing team on the relatives of the child with cancer. Discussion: relatives have feelings such as despair, fear of death, guilt, revolt and denial, making it necessary to include the relatives in nursing care procedures. Conclusion: to provide for the necessities of the relatives, caring must provide comfort, support, and a clear communication about the illness, in order to minimize their suffering. Descriptors: Oncologic Nursing; Family; Child. 283 Carvalho AS, Depianti JRB, Silva LF, Aguiar RCB, Monteiro ACM. Reactions of family members of children diagnosed with cancer: a descriptive study. Online braz j nurs [internet] 2014 Sep [cited year month day]; 13 (3):282-91. Available from:
Frontiers in Psychology, 2022
The emotional experience and the type of communication about cancer within the family are important factors for successful coping with pediatric oncology. The main purpose is to study mother's and children's emotional experiences concerning cancer, whether they communicate openly about the disease, and relationships between the type of communication and the different emotions expressed by the children. Fifty-two cancer patients aged 6-14 years and their mothers were interviewed in separate sessions about the two central themes of the study: emotional experiences and type of communication. Analyses of response categories were performed to subsequently compare the age-groups and the mother-child responses. According to the results, mothers expressed emotions such as fear, sadness, or anxiety, while children report sadness, pain, but also happiness. Significant positive correlations were observed between mothers' sadness and older children's sadness, mothers' anxiety and children's fear, and mothers' anxiety and children's happiness. Regarding communication type, mothers tend to hide information about the disease from younger children and to provide direct information to the older children. Children usually prefer to communicate their concerns to parents; however, children whose mothers convey anxiety are more likely to prefer to communicate with others. These results support the idea that parents should talk honestly with their children, explaining their illness in an age-appropriate way, and encouraging them to share their emotional experiences. Further studies are needed from a developmental perspective to understand the disease management of children and families.
Clinics in Mother and Child Health
Objective: This article describes a multidisciplinary intervention dedicated to patients with cancer and with underage children. It is well known that children of severely ill parents can develop emotional and behavioral problems. Different studies underline the efficacy of an open communication with children about the parent's illness to reduce distress but also the difficulties of parents to explain it to their children. The intervention, realized at San Gerardo Hospital, aims to inform or improve the children's knowledge of their parent's cancer, and to open communication about cancer inside the family. Methods: This intervention is characterized by the integration of a psychologist and a pediatric hematooncologist and by the direct involvement of children. After the fact-finding parents sessions, the pediatric hematooncologist and the psychologist meet children in specific settings, without parents present, to describe, with the support of images and metaphors, the parent's cancer and to understand children's needs or fears. In particular the pediatric hemato-oncologyst uses the flowered garden metaphor to explain to children the parent's illness and the treatments. Then the clinicians share the content of the previous sessions with parents. Counseling sessions to parents are also organized to increase the parental competence and the sharing of cancer-related concerns in the family. In addition, a specific questionnaire has been realized to evaluate children's psychological conditions after the intervention, family atmosphere and parents' satisfaction. Results: 36 families and 53 children have participated in the project up to now. The results of the questionnaires have underlined the absence of psychopathological symptoms in children, the presence of more collaboration in the families and more possibilities in the family to have an open communication about the cancer. In addition, most of the parents reported a considerable satisfaction with the intervention. Conclusion: Support for open communication in the family about cancer should be acknowledged as an important aspect of oncology care to reduce family stress.
Parents’ experience of pediatric cancer: A qualitative study
2018
BACKGROUND: Suffering from life-threatening diseases such as cancer, due to its impact on the patients and their next of kin causes myriads of changes in the structure and function of the family. The objective of this study was to clarify parents' experiences of childhood cancer. METHODS: This qualitative study was conducted through purposive sampling method. Semi-structured interviews were conducted with 20 parents whose children were diagnosed with cancer in the oncology department of Besat Hospital in Sanandaj City, Iran. Interviews were transcribed and analyzed through Benner’s thematic analysis. RESULTS: During data analysis, 4 main themes emerged including destroyer and terminator of life, horror and hope, disturbance of normal life, and gaining valuable experience. CONCLUSION: Parental roles, routine care of a child with cancer, and facing multiple treatments and childcare problems threatened parents' compliance with the condition of the disease or treatment, and thus...
Clinical Child Psychology and Psychiatry, 2008
The purpose of this qualitative study of families where a parent has cancer was to explore ways of informing the child of the parent's illness, how the child perceives the parent's emotional state, how the child copes with the parent's illness, and how this coping relates to the parent's coping and concerns for the child. Twenty-one children from 15 families and their parents were interviewed. In 13 families the mother was ill, in two the father. Children were aware of the facts of the illness, but there was limited emotional communication between the generations. The children were very observant of both the ill and the healthy parent's emotional condition. The children's observations and expressions led us to identify five coping strategies the younger generation used: Helping others, parentification, distraction, keeping it in the head, and wishful thinking. Both adaptive and destructive examples of parentification were found. Communication patterns and par...
Journal of Pediatric Oncology Nursing, 2020
When parents are confronted with something as fundamental as a cancer diagnosis for their child, it is generally assumed that sharing the emotional impact of it, in the form of talking about it with the partner, is helpful and necessary to cope as an individual and a couple. However, couple communication in the context of childhood oncology is often challenging. In this qualitative research, we aimed for a better understanding of how partners experience their couple communication during treatment of their child. Thematic coding was done on in-depth interviews with 16 parents (7 couples interviewed together and 2 mothers). We found that the circumstances of the treatment period affected couple communication. In the interviews, parents provided three main meanings to their limited talking: (a) because of the hospital and treatment context; (b) for self-care/self-protection related to the value of blocking emotions; and (c) because of each other. These findings invite us to rethink emo...