Being there: parenting the child with acute lymphoblastic leukaemia

International Journal of Nursing

Aims: To describe the experiences of the parents of children with oncoh ematological diseases related to the continuity of treatment in the home environment. Methods: This is a case study report with a qualitative approach. The participant was a father of a child with leukemia. Findings: After diagnosis, the parents increased their child-related care. Accepting a cancer diagnosis is not easy, especially when it comes to childhood. The diagnosis of cancer caused a lot of pain to the father, who could not accept for a long time the fact that the son has a disease that carries with it an imminent threat of death. To take the child home was a terrifying situation. The physicians and social workers of the hospital passed a significant part of the information to the parents, and the nursing team did not have contact with the parents related to these orientations. Conclusions: The health team should be better prepared to assist families with children with oncohematological diseases. They should be able to answer the questions of the families at any time, and the nursing team, especially the nurse should be more involved in this process.

Journal of Psychosomatic Research, 1974

Cancer Nursing, 2009

Acute lymphocytic leukemia Children Coping strategies Hong Kong Chinese fathers Qualitative research Using a qualitative approach, this article aims to describe the experiences of Hong Kong Chinese fathers whose children were diagnosed with acute lymphocytic leukemia. The experiences and coping strategies used were viewed from the gender perspective. Two in-depth interviews scheduled to coincide with the disease trajectory of acute lymphocytic leukemia were conducted with 9 fathers, and data were analyzed using the matrix system described by Miles and Huberman. Four categories were identified, including fathers' initial reactions to the child's confirmed diagnosis, the decision to disclose the child's diagnosis to others, social support of the fathers, and their effective coping mechanisms. Previous research has shown that men are expected to be emotionally strong to support their spouse. Findings from this study indicate that Hong Kong Chinese fathers need emotional support especially at the onset of the child's diagnosis. Implications for healthcare professionals include the need for ongoing psychosocial support and education over the course of the child's illness. Thus, assessment of the different coping strategies used by the fathers plays a vital role in providing quality care to these fathers. Limitations of the study and recommendations for future research are also included.

2018

Introduction. Acute Limfoblastic Leukemia (ALL) is a malignant disease which mostly found in children. The main treatment of ALL is chemotherapy for a long time, so it affects their mother life as the primary caretaker. This research aimed to explore, understand, and give the meaning of mother’s fi rst experience in assisting children with ALL that was undergoing chemotherapy: the induction phase. Method. This research was a qualitative research by using phenomenological. Six participants were taken by using purposive sampling that participated in interview. In-depthinterviews and fi eld note were used to collect data. The result of the interview was transcribed verbatimly and analyzed by Collaizi method. Results. There was six main themes that found in this research including:1) undergoing emotional response, 2) undergoing physical impaired, 3) seeking information, 4) undergoing a spiritual experience, 5) undergoing an economic burden, and 6) the importance of support. Discussion. ...

Pediatric Blood & Cancer, 2021

Few studies have examined parent and family adaptation in the early period following the end of childhood cancer treatment. We examined parent adjustment at the end of their child's treatment for acute lymphoblastic leukemia (ALL). Parents of childhood cancer survivors (CCS), who were 3-months post-ALL treatment, and parents of typically-developing children completed measures of psychological and family functioning. Parents of CCS also completed distress and posttraumatic stress symptom (PTSS) questionnaires related to their child's cancer experience. 129 parents were recruited: 77 parents of CCS and 52 comparison parents. Overall mean psychological symptoms of depression, anxiety and stress and family functioning were within normal limits for both groups. Parents of CCS endorsed higher scores for stress, depression and family problems, however, mean scores for emotional distress were low for both groups, in particular the comparison group. Parents of CCS endorsed low rates of PTSS. 51% of parents of CCS scored above the distress thermometer (DT-P) clinical cut off (>4), with items elevated across all 6 DT-P domains. However, most parents did not indicate a wish to speak to a health professional about their symptoms. Specialist psychosocial intervention may be indicated for only a subset of parents at the end of treatment. As per psychosocial standards of care, effective screening at this timepoint is warranted. Further examination of appropriate timing of psychosocial information and supports services that are tailored to parents' circumstances is needed. Ehealth approaches may be appropriate.

Pacific Rim International Journal of Nursing Research

Childhood cancer presents as a significant and life-threatening illness thatprofoundly impacts the well-being of the entire family of the affected child throughoutthe trajectory of the disease. This qualitative descriptive study explored strategies to improvefamily quality of life according to the perspective of families of preschool children withacute lymphoblastic leukemia undergoing chemotherapy. Data were collected fromMarch to June 2019 through in-depth individual interviews with 32 family membersaged 20-50 years from the outpatient hematology department and pediatric ward.Content analysis was used for data analysis which revealed three themes:1) Modification of family function: they needed adjustment of family roles, preparingfamily caregivers for cancer care, and maintaining family interactions; 2) Effectiveness offamily communication: there were contents, methods, and information sharing; and 3) Socialsupport for family caregiving, including external and spiritual support.Fi...

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.

Hemato

Caring for a child with an acute/life threatening disease exposes parents to multiple stressors and challenges, resulting in a physical and psychological burden. Parents experience many health-related issues and worries that often remain underestimated. The aims of the study were: (a) to explore the associations between needs/disease-related issues and burden in parents of children with leukemia or Hodgkin’s disease; (b) to estimate predictors of parents’ burden using a stepwise linear regression analysis. Children (N = 33) followed an active therapy protocol (48.5%), or they were off therapy (51.5%). Forty-four parents completed surveys on caregiver burden levels and needs to cope with the child’s illness. Parental factors impacting burden (personal resources, loss of control, depression) and child’s quality of life (QoL) were also assessed. Among the needs, information about the illness/resources were the most urgently expressed by parents, followed by reassurance against fears fo...

Supportive Care in Cancer, 2005

Conversational strategies with parents of newly diagnosed leukaemic children: An analysis of 4880 conversational turns Abstract Goals of work: Communication with parents of children newly diagnosed with cancer poses a number of problems, mostly due to the psychological effects of parental trauma. This study was designed to answer the following questions: How can we sustain the flow of communication with parents of children newly diagnosed with leukaemia so that it may become easier and more effective? What should we say to gather more reliable information from parents? How can we help empower their coping strategies? Patients and methods: We analysed 4880 conversational turns in individual conversations carried out between psychologists and 21 parents of children with leukaemia. The conversations were aimed at gathering information of the families' daily routines. Dialogues were audiotaped and fully transcribed. The type and frequency of speech acts present in each turn were coded along 18 categories by two independent judges (inter-rater agreement, Cohen Kappa =0.73). Main results: The parental speech acts expressing emotion in various ways go up to 58% of the total number of their speech acts. The lagsequential analysis showed that such expressions are not associated with any of the interviewer's speech act. The same analysis showed that, by contrast, the interviewer's style has an effect upon the cognitive aspects of parents' conversation. Support of hope favoured parental ability to identify their coping strategies. Explicit requests, confirmations such as "sure" and key words summarizing parents' viewpoints are followed by parental factual and objective narratives. Conclusions: Based on these results, a few practical recommendations for health care professionals are given in order to better communicate with parents of children newly diagnosed with cancer.

The life of a mother undergoes a dramatic change after a child is diagnosed with cancer. The present study aimed to determine effects on the everyday life process and health status of mothers with children suffering from leukemia. This qualitative study was based on a grounded theory approach with sixteen mothers. The results indicate that after onset of disease in their children, they marginalized their own health and tied their identities to taking care of the child and keeping the child healthy by ignoring themselves, becoming imprisoned in a taking-care-of-the-child position, and trying very hard for seek balance and stability Enduring physical pressures on the one hand, and constantly attempting to achieve balance and stability in family processes on the other hand, gradually cause exhaustion. It seems that health care providers and nurses should pay much more attention to the health status of this group of mothers.