Gaps in pediatric oncologic end of life care as recounted by the bereaved parents in Isarel.

PURPOSE: This study investigated parents' perception of their needs and those of their children with cancer at the end-of-life period, including unmet needs and their expectations regarding providers. DESIGN AND METHODS: This cross-sectional study involved 26 parents recruited from three pediatric hematology-oncology wards in Israel who completed demographic and medical questionnaires of the child, and a parental needs questionnaire based on The Needs Assessment of Family Caregivers-Cancer questionnaire, following the death of their child. FINDINGS: Parents expressed needs related to medical care, including pain management, decision-making, and finding optimal treatment options for their children. The most prominent unmet needs were financial and psychological factors, of which, paying for medical expenses and helping their child adjust to the end of their life received the highest mean scores. There were notable gaps between desired and actual support from service providers, particularly in relation to emotional aspects. While over half of the parents believed the psychosocial team should assist with their child's emotional distress, this need was not adequately fulfilled. Some parents also expressed a desire for better emotional support during the end-of-life period. CONCLUSIONS: The study emphasizes the importance of understanding parents' needs and perspectives during this challenging time. The identified gaps in support can be attributed to parental roles, the struggle with losing hope, communication barriers between care teams and parents, among others. PRACTICE IMPLICATIONS: By gaining insight into these needs and perceptions, care teams can enhance the provision of palliative care and optimize the distribution of responsibilities within the team.

Perceptions of children with cancer and their parents regarding illness: A qualitative study.

PURPOSE: The current study aims to understand inter-generational differences and similarities in the perception of illness and the available resources employed by children with cancer and their parents. METHODS: A qualitative descriptive research design was utilized, including face-to-face interviews with 108 parent-child dyads where the children had been diagnosed with cancer, by means of a semi-structured questionnaire. The participants were recruited from two pediatric hematology-oncology wards in two different hospitals in Israel. The data were analyzed using conventional qualitative content analysis. Debriefing and inter-rater reliability methods were utilized. FINDINGS: Similarities were found between the coping of children and parents with the illness. Children with cancer and their parents can find bright sides and support for coping, such as different perspectives on life, faith, positive thoughts, and family assistance. Most of the differences between the perceptions of children and parents relate to the difficulties encountered. While parents are mainly concerned about the long-term impact, children contend with ordeals involving the here-and-now. CONCLUSIONS: Parents and children demonstrate a dual process in their challenging journey. Positive and facilitating factors are intertwined with the aggravating aspects, which exist side by side. PRACTICE IMPLICATIONS: Nursing staff should advise children and their parents to attain and use external and internal sources of support found in this study to help them deal with cancer.

Adolescents With Cancer Need Trustworthy Information and Prefer to Receive It From a Human Source Rather Than From the Internet: A Qualitative Study.

Background: In pediatric cancer, the legal obligation to provide information is usually toward the parents who are the authorized signatories of the informed consent form. It is now known that aside from providing information to the parents, it is also very important to provide information to the children and adolescents themselves. The question is how the adolescents relate to this. What information do they already possess and what would they like to know? Would they wish to hear the truth in all situations and at what stage? What are their preferred sources of information? Method: A qualitative study that included in-depth interviews with 19 adolescents with cancer, aged 8.5-18, who were receiving active treatments and had been diagnosed at least 1 month previously. The interviews were guided by 15 open-ended questions. Findings: The analysis of the interviews indicated that adolescents know quite a lot about the course of their disease and the information they lack is mainly etiological. The participants reported a lack of knowledge concerning sexuality and a sense of discomfort talking about it, leaving them with open questions. They all claimed that it is important to tell the truth: "Even if the truth is difficult, it is important to tell it." The participants reported that information can be scary, so it must be structured and adapted to the age and emotional readiness of the individual. Most of the participants prefer not to use the internet as an information resource due to the profusion of stressful and non-adapted information. Conclusion: Adolescents with cancer need trustworthy information and prefer to receive it from a human source rather than from the internet. Not telling the truth can lead them to feel fear and loneliness. The medical staff must operate in sensitive and creative ways to provide adolescents with access to information on various subjects, including sexuality, which they are ashamed to talk about, leaving them with a sense of shame and a lack of knowledge in this area.

Nursing care for adolescents and young adults with cancer: literature review.

Cancer patients belonging to the adolescent and young adult (AYA) age group have unique and very specific needs, which require special attention from the caring staff. The difficulty in maintaining the personal and professional development at this age is both natural and normal. Adding to this, coping with a life-threatening disease turns this stage in life into a period with many dilemmas and challenges of quite a complex nature. AYA patients have to deal with issues above and beyond the disease itself, which create a very complex coping picture. On top of that, prognosis for this age group has not improved in recent years, unlike the situation in other age groups like children and adults. The literature on this subject is extensive and comprehensive. However, most of the papers on this subject are very specific and narrow in their approach, each dealing with a specific topic. In this article, we bring together many different papers which make a wide and comprehensive picture of the subject of AYAs coping with cancer, coupled with recommendations for the caring staff. In this review we focus on the various aspects of the disease and treatments in AYAs, based on the conceptual model of quality of life proposed by Ferrell and colleagues [Cancer Nurs 1992;15:153-160; Cancer Nurs 1992;15:247-253], including physical, social, emotional and spiritual aspects. From the psychological standpoint, most of the papers discuss the negative aspects; however, in this article we try to include some articles from the positive psychology school of thought. From our findings it is apparent that there is an opportunity and need to further explore research in this regard. It is apparent that taking a unique approach to AYA cancer patients is needed in order to deal with the unique needs of this age group. This article aims at putting a framework around this issue, with actionable recommendations for the caring staff.