Two Weeks Post-Death Report by Parents of Siblings' Grieving Experience

Nurses who work with children and families need to be aware of the impact that the death of sibling has on children. Although many children have experienced losses, the loss of a sibling of course has a tremendous affect. Nurses must educate parents and children about death and the affect on the entire family. Siblings should be involved in the communication about the impending death and in the funeral arrangements. Open communication between the dying child, the siblings and the parents is very important. Young children will have different needs than older children because of their difficulty in understanding the finality of death. It is natural for parents to try to protect their children from unpleasant experiences such as death and dying. Research supports the dying process including the funeral. Children and their families need support through out the dying experience including follow up after the actual death. They need to be assured that their feelings and actions are common to others that have suffered a significant loss.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer care.     

Concerns of Parents With Children Receiving Home-Based Pediatric Palliative Care

ContextCaring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received.ObjectivesThe objective of this study was to explore the concerns of parents who have a child in home-based PPC.MethodsSemistructured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, M_age = 10.5 years, SD = 3.95, range = 4–18 years) had a range of diagnoses. Data were analyzed using inductive content analysis.ResultsParents' concerns clustered into four main themes: 1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; 2) uncertainty regarding their child's diagnosis, prognosis, and treatments; 3) their child's death (e.g., the process of dying and when it will occur); and 4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible.ConclusionParents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC and point to critical areas for intervention for seriously ill children and the broader family.     

Death and Dying Anxiety Among Bereaved and Nonbereaved Elderly Parents

This study examines differences in death and dying anxiety between bereaved and nonbereaved elderly Israeli parents, as well as correlates of these factors among bereaved parents. A total of 97 parents (49 bereaved, 48 nonbereaved) completed measures of death and dying anxiety and religiosity. Bereaved parents reported significantly higher dying anxiety scores than nonbereaved parents, but there were no significant differences between the 2 groups in death anxiety. Religiosity was unrelated to death and dying anxiety. Dying anxiety was higher among bereaved mothers than bereaved fathers. Death and dying anxiety were not associated with the length of time since the loss of the child or the nature of the child's death. Results are discussed in light of the difficulties that bereaved parents experience after the loss of their child. Implications for theory, for health and welfare professionals, and for policy are suggested.     

Determining the needs of chinese parents during the hospitalization of Their child diagnosed with cancer: an exploratory study.

In Hong Kong, as in other modern societies, cancer is the second cause of death among children. Studies show that childhood cancer affects all family members who frequently experience emotional and social problems resulting from managing the stress created by the disease and side effects of treatment. This subsequently results in parents experiencing a range of different needs. There is little evidence available of the needs of Chinese parents during the hospitalization of their child. An exploratory study was undertaken using in-depth semistructured interviews with 5 parents recruited from the pediatric oncology ward of a regional hospital in Hong Kong. The parents were interviewed twice during the active treatment phase to explore their changing needs during this initial period of hospitalization. All interviews were tape-recorded, transcribed, and translated into English before content analysis. The analysis of the parents' data identified 6 main categories common to both interviews: (i) the need for recognition of their reaction, (ii) the need for recognition of their fear of hospitalization, (iii) the need for support, (iv) the need for information, (v) the need for personal time, and (vi) finally the need for help in parenting skills were identified. The implications of these findings for nursing practice are presented.     

Understanding the supportive care needs of parents of children with cancer: an approach to local needs assessment.

The objective of this study was to conduct an assessment of supportive care needs from the perspective of parents of children diagnosed with cancer within an urban-rural region in Eastern Ontario, Canada. Guided by a conceptual framework for supportive care, the exploratory, mixed-method study used a standard needs survey and semistructured interviews. Fifteen parents completed (75% response rate) the survey, and 3 parents participated as key informants in the follow-up interview. Parents reported needs in all 6 of the need categories outlined within the Supportive Care Needs Framework. The proportion of parents expressing a need ranged from 23% to 39%. Dealing with the fear of their child's cancer spreading was frequently identified by parents. Emotional and informational needs were the 2 most frequently acknowledged categories of need. With further refinement, the use of the conceptual framework will provide a methodology for planning care based on the individual needs identified by parents of children with cancer.     

Status quo of palliative care in pediatric oncology-a nationwide survey in Germany

Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.     

Needs of young children with cancer during their initial hospitalization: an observational study.

The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with non-participant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy," "need for participation in care and treatment," "need for a good relationship with the staff," and "need for physical and emotional satisfaction." The results indicate that the children needed their parents and the parents' presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment.     

Sibling involvement at the end of life.

When a child is diagnosed with a life-threatening illness, such as cancer, there is much disruption to the family. It is a struggle for parents to divide their time between the hospital, home, and other healthy siblings. Nurses strive to provide family-centered care, which involves siblings in many stages of the treatment process. However, during the terminal phase of a child's disease, the dying child and the parents are often the sole focus of the health care team. Siblings are often left to stay with extended family members or friends so that they are protected from the reality of death. However, previous research has shown that even young children understand death, and some of the protective measures parents take actually hamper the siblings'bereavement process. Nurses are in a position to guide families through the emotional time of a child's death while advocating for sibling involvement at a level appropriate for their developmental stage.     

The qualitative experience of Chinese parents with children diagnosed of cancer

Aim. The present study aimed to describe the coping experiences of Chinese parents with children diagnosed as having cancer during the treatment stage. Background. Cancer is the second major cause of death among children in Hong Kong, it claims the lives of 60–70 children per year. Childhood cancer has tremendous impact on the family, especially the parents. It is, therefore, important to understand parents’ psychological functioning and coping experience. Methods. A phenomenological approach was used. Data were collected by qualitative interviews and analysed following Colaizzi's phenomenological methodology. A purposive sample of nine parents whose children were diagnosed of having childhood cancer was recruited from a regional hospital in Hong Kong. Results. Four themes emerged describing parents’ coping experiences: shock and denial, establishing the meaning or the situation, confronting the reality and establishing a new perspective. The initial reactions of the parents to the diagnosis were shock, denial and worry. However, they quickly accepted the reality and regarded their child's illness as their ‘fate’ that they had to accept. They were committed to the care of the sick child and seek informational and emotional support to cope with the situation. All of them were able to identify positive aspects from the illness experience and establish hope for the future. Chinese cultural beliefs might help the parents cope positively and avoid negative emotions. Conclusion. This study found some commonalities of coping experience in both Western and Chinese culture. It adds knowledge to the coping experience of Chinese parents at the treatment phase of their children's illness and highlighted the need for emotional and information support for parents. Relevance to clinical practice. Education programme and mutual support group would be helpful to parents. Nurses have to learn how different cultural groups and subcultural groups in the society cope to provide competent cultural care.     

The impact of the social and physical environments on parent–healthcare provider relationships when a child dies in PICU: Findings from a grounded theory study

ObjectivesThis study explores the influences of the paediatric intensive care environment on relationships between parents and healthcare providers when children are dying. It forms part of a larger study, investigating parental experiences of the death of their child in intensive care.Research methodologyConstructivist grounded theory.SettingFour Australian paediatric intensive care units.Main outcome measuresAudio-recorded, semi-structured interviews were conducted with twenty-six bereaved parents. Data were analysed using the constant comparison and memoing techniques common to grounded theory.FindingsThe physical and social environment of the intensive care unit influenced the quality of the parent–healthcare provider relationship. When a welcoming, open environment existed, parents tended to feel respected as equal and included members of their child’s care team. In contrast, environments that restricted parental presence or lacked resources for parental self-care could leave parents feeling like ‘watchers’, excluded from their child’s care.ConclusionsThe paediatric intensive care unit environment either welcomes and includes parents of dying children into the care team, or demotes them to the status of ‘watcher’. Such environments significantly influence the relationships parents form with healthcare staff, their ability to engage in elements of their parental role, and their experiences as a whole.     

The relationship between parent-sibling communication and coping of siblings with death experience

Past studies have suggested that parents who can effectively communicate about subjects such as death and dying are most likely to help their child cope with illness and death. Most studies have focused on communication with the ill child and less attention has been paid to the sibling. As part of a larger study to investigate the effects of two types of terminal care on families of a child dying of cancer, this portion of the study focused on parent-sibling communication. It was hypothesized that increased communication would increase coping as manifested by fewer behavioral problems and more social competence in siblings. The tools used included the Child Behavior Check List (CBCL) and the Parent-Sibling Communication instrument. Measurements were taken before and at 2 weeks, 4 months, and 12 months after the death of the ill child. One positive and four negative correlations were found. Parent-sibling communication was positively related to Social Competence before the ill child's death, and was inversely related to Total Behavior Problems following the death. Parent-sibling communication was also inversely related to External Behavior Problems after the ill child's death, to Internal Behavior Problems after the ill child's death, and to Internal Behavior Problems at the 4-month point after the death. The positive relationship between parent-sibling communication and Social Competence scores may reflect the sensitivity of parents to siblings' needs.     

Communicating with dying children and their siblings: A retrospective analysis

Abstract

Recognition that children over age 4 with fatal illnesses generally anticipate their death has prompted more open communication between them and the adults caring for them. We investigated factors influencing the extent and success of such communication between parents, dying children, and their siblings, using data provided by 77 mothers who are members of the Compassionate Friends organization.

We found that those mothers who talked more freely with dying children also did so with the siblings and that communication was more open with older than with younger children. This dialogue was most helpful for both the dying children and their siblings if the former were mostly at home immediately before death, if there was extensive and specific discussion about death and dying, when a parent was the major discussant, and if the family's religious faith was also a significant source of support.

Following such discussions the emotional state of the dying children and the siblings contrasted markedly, with the latter showing significantly more sadness, anger, denial, and fear. We found that most mothers had apparently recovered well from their bereavement and that this recovery correlated with having been helped by their religious faith, having been the main discussants with the children about death, and with having the child away from home the greater part of the terminal phase. Recovery from bereavement was also better among those mothers whose dying children had been better adjusted emotionally.

We recommend that health professionals use all appropriate resources to encourage early, full, and candid discussions between dying children, their siblings, and their families.