End‐of‐life experiences of family caregivers of deceased patients with cancer: A nation‐wide survey

Abstract

Objectives: The purpose of this study was (a) to describe the end-of-life experience of family caregivers of cancer patients, (b) to describe talking about death and dying of the patient to minor children, and (c) to examine the association of family caregivers 0 experiences by their characteristics and talking about death and dying of the patient. Methods:A cross-sectional nationwide survey of bereaved family caregivers was conducted.In total, 968 questionnaires were sent to bereaved family caregivers, and 711 were completed and returned. Fifty-three responses indicating patients had minor children were analyzed.Univariate analysis and principal component analysis were performed. Results: Family caregivers0 experiences were divided into 3 domains by principal component analysis: protect children from the patient 0 s imminent death, little regard for the children, and worry and concern about the children 0 s emotional reaction. Family caregivers 0 common experiences were as follows: "I wanted to know how the children felt," "I wanted to avoid making the children confused," and "I did not have much time to talk with and/or play with the children."About 30% of family caregivers reported that they "did not talk" about death and dying of patients to minor children. Spouses of patients and family caregivers who did not talk about death tended to experience distress and worry.Conclusions: Most family caregivers experienced worry and fear regarding minor children 0 s emotional reaction; therefore, clinicians need to explain children 0 s emotional and psychological reactions to family caregivers when a patient is at the end-of-life.

Parenting Experiences of Cancer Patients with Minor Children and Their Conversations About the Possibility of Death: A Cross-Sectional Web-Based Survey for an Online Cancer Community

“…[17] In addition, bereaved families who did not disclosure their terminal status to their children were more likely to feel distressed. [10] These previous studies suggest that parents with cancer and their family caregivers may nd it di cult to tell their children about the possibility of death, and it is even more di cult for parents who did not disclose their cancer to their children. However, young adult children of terminal patients desired open and honest communication about cancer diagnosis, treatment, prognosis, and end-of-life care.…”

“…An online questionnaire form was developed, which was based on previous literature. [10][11][12] The questionnaire was completely anonymous, and it included age, sex, primary cancer site, cancer stage, number of children, age of rst child, disclosure of their own cancer to their children, feelings toward their children, and conversations about the possibility of death with their children. Feelings toward their children were evaluated using a 4-point Likert scale (1, strongly disagree; 2, disagree; 3, agree; 4, strongly agree).…”

Ajudando as crianças a enfrentarem o luto pela perda de pessoas significativas por COVID-19

“…Ao facilitar a expressão das manifestações e dos sentimentos da criança, o adulto dá a ela a possibilidade de manejar seus medos e fantasias sobre a morte e, consequentemente, passa a representar um apoio, para a criança, no processo de elaboração do seu luto. (15,17) Estudiosos e especialistas em luto enfatizam a importância de se conversar com a criança sobre a morte de maneira honesta e informativa, retratando-a como parte do ciclo de vida. (12) Sendo algo natural, a morte pode estar presente nas histórias e brincadeiras, no trabalho da escola, nas discussões durante o jantar, nos questionamentos que fazemos para aqueles em quem acreditamos e confiamos.…”

Exploring the Score Equivalence of the English and Chinese Versions of the Brief Assessment Scale for Caregivers

“…The caregiving experience measured by the BASC is important as family caregivers of patients with cancer often face multiple challenges in their informal caregiving and may even have higher levels of unmet needs compared to patients ( 11 – 17 ). The simultaneous trends of longer survival, greater morbidity, and shorter hospital inpatient stays mean that many patients are primarily cared for in the community and that family members play a vital caregiving role ( 18 , 19 ).…”