"Some things are even worse than telling a child he is going to die": Pediatric oncology healthcare professionals perspectives on communicating with children about cancer and end of life.

INTRODUCTION: This study explored pediatric oncology healthcare professionals' (HCPs) perspectives on direct communication with children with advanced disease about their disease, palliative care, and end-of-life (EOL) communication. METHODS: Forty-six pediatric oncologists, nurses, psychosocial team members, and other HCPs from six hospital centers in Israel participated in semi-structured interviews. The Grounded Theory method was used. Data were analyzed line-by-line with codes and categories developed inductively from participants' narratives. RESULTS: HCPs viewed communication about disease progression and EOL as vital because children were often aware of their prognosis, because lack of communication could lead to emotional distress, and because communication is a prerequisite for shared decision-making. HCPs identified several barriers for communication including HCP barriers (such as emotional strains, lack of training), parental barriers, guardianship law, and language and culture. HCPs also described strategies to promote EOL communication. Direct strategies include tailoring communication, allowing for silence, echoing children's questions, giving information gradually, and answering direct questions honestly. Indirect strategies included encouraging parents to talk to their children and teamwork with colleagues. CONCLUSIONS: Open communication with children who have cancer is essential. Nevertheless, multiple barriers persist. The rising accessibility of online information calls for urgent training of HCPs in communication so that children will not turn to unmediated and potentially misleading information online in the absence of HCP communication. Evidence-based effective communication training modules and emotional support should be offered to HCPs. Knowledge about children's development, age-appropriate communication, and cultural sensitivity should be included in this training.

Factors That Influence Intraoperative Decision-Making among Pediatric Neurosurgeons: A Grounded Theory Study.

INTRODUCTION: Pediatric neurosurgery is a subspecialty of medicine that is responsible for diagnosing, managing, and treating neurological disease in children with the use of surgery. Good intraoperative decision-making is critical to ensuring patient safety, yet almost nothing is known about what factors play a role in intraoperative decisions. As such, the purpose of this paper was to explore the factors that influence intraoperative decisions when pediatric neurosurgeons encounter something unexpected or uncertain during surgery. METHODS: The study utilized the grounded theory method of data collection and analysis. Twenty-six pediatric neurosurgeons from 12 countries around the world were interviewed between June and October 2020 about the factors that go into making intraoperative decisions. Data were analyzed line by line and constant comparison was used to examine relationships within and across codes and categories. RESULTS: Pediatric neurosurgeons reflected on 6 factors while operating in order to come to a decision about how to proceed when they encountered an uncertainty or complication. The study findings resulted in a conceptual model that describes how concrete data including biological and technological factors and contextual data including emotional/relational factors, surgeon factors, and cultural factors influence risk assessment when making an intraoperative decision during surgery. CONCLUSIONS: The findings from this research can be used for training and educating surgeons about intraoperative decision-making processes. Pedagogical modules can be developed that include training sessions on factors that may implicitly and explicitly influence thinking processes during an operation. Surgeons may also benefit from having open discussions with surgical colleagues about the rich, emotional, intellectual scope of the work that they do with all the challenges that these relationships can bring into decision-making in the operating room.

'Every patient is like my child': pediatric neurosurgeons' relational and emotional bonds with their patients and families.

PURPOSE: To explore the relational and emotional components of the surgeon-patient relationship from the perspective of practicing pediatric neurosurgeons in the field. MATERIALS AND METHODS: The study utilized the Grounded Theory Method of data collection and analysis. 26 pediatric neurosurgeons from 12 countries were interviewed using video-conferencing technology. RESULTS: Pediatric neurosurgeons find meaning, joy and pleasure in the relationships they form with their patients and their families, while also experiencing difficult and painful emotions when these patients do not do well. Four themes emerged from the analysis that include having a relational attachment to patients, forming bonds with the parents/caregivers of these patients, dealing with patient suffering, death and complications, and communicating bad news to parents. CONCLUSIONS: Pediatric neurosurgeons develop deep and enduring bonds with their patients and their families. These relationships are an integral part of what brings meaning and joy to their work, and simultaneously, are one of the most significant emotional challenges of their careers. . Training neurosurgical fellows should include pedagogical modules about the relational and emotional dimensions of their work, with a specific and dedicated focus on communicating bad news.

Oncologist conceptualizations of pediatric palliative care: challenges and definitions.

PURPOSE: Pediatric palliative care (PC) is an evolving field and involves a comprehensive approach to care of children with cancer. The goal of this paper was to explore how pediatric oncologists define, interpret, and practice pediatric palliative care in their clinical settings. METHODS: The study used the grounded theory approach to data collection and analysis. Twenty-one pediatric oncologists from six pediatric cancer centers across Israel were interviewed. Data was analyzed using line-by-line coding. RESULTS: The analysis resulted in a four-tiered conceptual model. This model included the following categories: (1) ill-defined concept; (2) philosophies of palliative care; (3) trajectory of palliative care; and (4) palliative care treatment goals. CONCLUSION: The findings illustrate the current conceptualizations of pediatric palliative care among the pediatric oncology community in Israel. The conceptual model documents their understanding of pediatric palliative care as a philosophical approach and the challenges they face in differentiating between palliative care and standard pediatric oncology care. Pediatric palliative care is a highly needed and valued sub-specialty. The findings from this study highlight the importance for its continued development in Israel, as it can reduce the suffering of children and their families. Concurrently, pediatric oncologists need to have more resources and access to explicit knowledge of the conceptual and practical aspects of both primary and specialized pediatric palliative care.

Organizational and individual barriers and facilitators to the integration of pediatric palliative care for children: A grounded theory study.

BACKGROUND: Pediatric palliative care has established benefits for children with cancer and their families. Overcoming organizational and healthcare provider barriers have been demonstrated as central for the provision of palliative care in pediatric oncology. A deeper understanding is needed of the influence of these barriers and the interactions between them, specifically in primary palliative care in hospital settings. AIM: To identify the organizational and healthcare provider barriers to the provision of primary pediatric palliative care. DESIGN: This study utilized the grounded theory method. Semi-structured interviews were conducted and analyzed line by line, using NVivo software. SETTING/PARTICIPANTS: Forty-six pediatric oncologists, nurses, psychosocial team members, and other healthcare providers from six academic hospital centers participated in the research. RESULTS: Organizational and healthcare provider factors were identified, each of which acted as both a barrier and facilitator to the provision of pediatric palliative care. Organizational barriers included lack of resources and management. Facilitators included external resources, resource management, and a palliative care center within the hospital. Individual barriers included attitudes toward palliative care among pediatric oncologists, pediatric oncologists' personalities, and the emotional burden of providing palliative care. Facilitators include dedication and commitment, initiative, and sense of meaning. Provider facilitators for palliative care had a buffering effect on organizational barriers. CONCLUSION: Organizational and healthcare provider factors influence the quality and quantity of palliative care given to children and their families. This finding has implications on interventions structured to promote primary palliative care for children, especially in healthcare systems and situations where resources are limited.

"We are a transit station here": The role of Israeli oncology social workers in responding to mental health distress and suicidality in patients with cancer.

Social workers have a prominent role in responding to cancer patients' mental health needs. Given the risk of mental health distress in cancer patients, and given that social workers are responsible for responding to these needs, the purpose of this study was to explore how social workers describe their role in responding to mental health distress and suicidality in people with cancer. The Grounded Theory method of data collection and analysis was used. Eighteen social workers were recruited and interviewed. Social workers saw themselves and acted as an interprofessional hub for their patients. This approach was based on the values of holistic care, multiple treatment modalities, interpersonal consultation, and continuity of care. From this standpoint, social workers offered their patients (and at times, their families) comprehensive services providing emotional, behavioral and practical support within the hospital setting, but also outside of it in the patient's communities. Consideration should be paid to promote systemic changes to acknowledge and compensate oncology socials workers' invisible labor that includes both emotional carryover and continuous engagement in their role as liaison and intermediaries for their patients.

Factors affecting the will to live among elderly jews living in israel.

Objectives: The aim of this qualitative study was to explore factors that influence older persons' will to live (WTL).Methods: Twenty-five Israeli elders were interviewed about what weakens and/or strengthens their WTL. Elements of the grounded theory method guided the data collection and analysis.Results: Our analysis revealed that the elements that pertain to WTL could potentially both increase and decrease the WTL in elders. These factors included social networks, financial security, religious faith, working and volunteering, and honor versus ageism.Conclusions: Five factors represent different aspects of older persons' lives that influence the WTL. The first four themes including Social Networks, Religious Faith, Honor versus Ageism, and Working and Volunteering are consistent with the findings of the study of Blue Zones. Blue Zones are areas characterized by high life expectancy. Israel shares cultural characteristics with the Blue Zones, being a society with traditional collective characteristics stemming from the Jewish tradition. The last theme of financial security is related to the characteristics of Israel as a society in which the social gaps are large and many elderly are pushed to the social margins, and lack financial security. This study points to the unique cultural characteristics of Israel that affect the WTL among elderly Jews and proposes a hypothesis linking Israeli culture to the high life expectancy in Israel.

The Role of Culture/Ethnicity in Communicating with Cancer Patients About Mental Health Distress and Suicidality.

To explore the role of culture in communicating with cancer patients about mental health distress and suicidality. The Grounded Theory method of data collection and analysis was used. Healthcare professionals (HCPs) reported that language competency was a facilitator while being unable to speak the language or understand the nuances of their patient's communication could be a barrier. HCPs noted that being culturally matched with their patients helped them communicate effectively. HCPs also spoke about religious taboos on suicide as being a barrier to having conversations, either because patients did not feel comfortable discussing these issues, or because they perceived that this was not a topic they could bring up. Some HCPs reported that the culture/ethnicity of their patients had no effect on their ability to communicate effectively with them about mental health distress or suicidality. Advancing effective cross-cultural communication is a challenge faced by HCPs. Raising awareness about communication styles is an important step in addressing communication gaps about mental health and suicide with cancer patients. Training should facilitate skill development to engage in a culturally humble approach to cross-cultural communication including diversity training which encourages asking and actively listening to patients' needs and preferences.

Oncologists, oncology nurses and oncology social workers experiences with suicide: impact on patient care.

OBJECTIVE: To explore how oncology healthcare workers' (HCPs) personal experiences with suicide impacts their practice with cancer patients. DESIGN: The study was designed using Grounded Theory strategies in data collection and analysis. PARTICIPANTS: Eighteen social workers, 23 oncologists, and 20 nurses, participated in the research. METHODS: Themes emerged from systematic line-by-line coding of the interview transcripts. FINDINGS: HCPs reported that personal experiences with suicide: impacted the way they communicated with patients about suicide; made them vigilant about signs of suicidality; and made them aware of specific indicators of this distress. CONCLUSIONS: HCPs drew a direct line between their experiences with suicide to the ways in which they care for their patients. IMPLICATIONS: Increasing HCP awareness of these issues alongside training using evidence-based guidelines for identifying and responding to suicide risk in patients will ensure providing the best quality of care for patients.

Does Assessment Method Matter in Detecting Mental Health Distress among Ashkenazi and Mizrahi Israeli Women with Breast Cancer?

Authors examined differences in assessment method (structured diagnostic interview versus self-report questionnaire) between ethnic groups in the prevalence of mood and anxiety disorders among women with breast cancer. A convenience sample of 88 Mizrahi (Jews of Middle Eastern/North African descent, n = 42) and Ashkenazi (Jews of European/American descent, n = 46) women with breast cancer from oncology units in three health centers across Israel participated in the study. Participants were within eight months of diagnosis. Participants completed the Hospital Anxiety and Depression Scale (HADS) and a structured diagnostic interview, the Mini-International Neuropsychiatric Interview (MINI). Approximately one-third (31.8 percent, n = 28) of participants were diagnosed with at least one mood or anxiety disorder based on the MINI. Significantly more Mizrahi participants (42.9 percent) were diagnosed with at least one mood or anxiety disorder, compared with their Ashkenazi counterparts (21.7 percent). Mean score on HADS was below the optimal cutoff score (≥13) among all participants, with no significant difference in mean score for emotional distress based on HADS between the two ethnic groups. The findings highlight the role of measurement variance in assessing mental health distress among women with breast cancer in general and among ethnic and racial minorities in particular.

Oncology health care professionals' perspectives on the causes of mental health distress in cancer patients.

OBJECTIVE: To explore oncologists, social workers, and nurses' perceptions about the causes of their cancer patient's mental health distress. METHODS: The grounded theory (GT) method of data collection and analysis was used. Sixty-one oncology health care professionals were interviewed about what they perceived to be the causes of mental health distress in their patients. Analysis involved line-by-line coding and was inductive, with codes and categories emerging from participants' narratives. RESULTS: Oncology health care professionals were sensitive in their perceptions of their patients' distress. The findings were organized into three categories, namely, disease-related factors, social factors, and existential factors. Disease-related themes included side effects of the disease and treatment, loss of bodily functions, and body image concerns as causing patient's mental health distress. Social-related themes included socio-economic stress, loneliness/lack of social support, and family-related distress. Existential themes included dependence/fear of being a burden, death anxiety, and grief and loss. CONCLUSIONS: Oncology health care professionals were able to name a wide range of causes of mental health distress in their patients. These findings highlight the need to have explicit conversations with patients about their mental status and to explore their understanding of their suffering. A patient-centered approach that values the patient's conceptualization of their problem and their narrative to understanding their illness can improve the patient-provider relationship and facilitate discussions about patient-centered treatments.

Oncology healthcare professionals' perceptions, explanatory models, and moral views on suicidality.

PURPOSE: To explore how oncologists, oncology nurses, and oncology social workers perceive suicidality (suicidal ideation, suicidal acts, and completed suicides) in patients with cancer that they are in contact with. METHODS: The grounded theory method of data collection and analysis was used. Sixty-one oncology healthcare professionals from two university-affiliated cancer centers in Israel were interviewed. RESULTS: The findings resulted in three main categories that included perceptions of suicidality, explanatory models of suicidality, and moral views on suicide. Healthcare professionals considered suicidality in their patients to be a cry for help, a sign of distress, or an attempt at attention seeking. Participants explained suicidality as stemming from a biological disease, from mental illness, as an aberration, or as an impulsive, irrational act. Moral views on suicidality were split among those who were mostly accepting of these patients' actions versus those who rejected it outright. A third group of healthcare professionals expressed ambivalence about suicidality in their patients. CONCLUSIONS: Healthcare professionals vary greatly in their perceptions on suicide. Some view the act as part of a patient's choice and autonomy while others view it negatively. Healthcare providers should receive support in handling patient's suicidality.

Oncologists', nurses', and social workers' strategies and barriers to identifying suicide risk in cancer patients.

OBJECTIVE: To identify oncologists', nurses', and social workers' strategies and barriers in identifying suicide risk in cancer patients. METHODS: Sixty-one oncology healthcare professionals (HCPs) at 2 cancer centers were interviewed. We used the grounded theory method (GT) of data collection and analysis. Analysis involved line-by-line coding, and was inductive, with codes and categories emerging from participants' narratives. RESULTS: The majority of oncologists and nurses reported that they had encountered at least 1 patient who had committed suicide during their careers (56% and 55%, respectively) and/or had suicidal ideation (65% and 75%, respectively). Social workers reported having fewer suicides in their practices (22%), but similar rates of suicidal ideation among patients (66%). Strategies to identifying suicide risk included paying attention to patients' verbal indicators, explicit actions, and mental health distress. In addition HCPs reported that mental health disorders and other patient characteristics increased their likelihood to assess suicidality among patients. Reported barriers to identification included patient factors such as patients giving no warning, patients concealing suicidality, and patients failing to come in. HCP barriers to identification included lack of training and awareness, difficulty in differentiating suicidality from mental health distress, lack of time with patients, fear of asking about suicidality, and lack of coping resources to deal with suicidal patients. CONCLUSIONS: HCPs reports of their lack of training and awareness on identifying suicide risk is alarming given the higher risk of suicide among cancer patients. Training programs should incorporate the successful strategies used by HCPs and overcome barriers to identifying suicide risk.

Oncologists' Treatment Responses to Mental Health Distress in Their Cancer Patients.

The objectives of this study were to identify how oncologists respond to mental health distress in their patients, what specific strategies they use in treating this distress, and what barriers they report responding to their patients' emotional distress. Twenty-three oncologists at two cancer centers were interviewed. The grounded theory method of data collection and analysis was used. Oncologists varied in their response to patients' emotional distress. Strategies used in responding to patients' distress included creating supportive relationships and prescribing medications, while barriers included patient reluctance, a lack of protocol on how to respond to patients, limited psychosocial resources, and a lack of time. Developing and adopting clear guidelines to addressing mental health distress among cancer patients is critical in assuring quality care for the whole patient and reduce the risk for poor quality of life and potential disease-related morbidity and mortality.

Oncologists' communication about end of life: the relationship among secondary traumatic stress, compassion satisfaction, and approach and avoidance communication.

BACKGROUND: Oncologists must communicate effectively with patients and their families about end of life (EOL). Despite the importance of communicating on this topic, many oncologists avoid these conversations. The objective of this study was to examine the associations between secondary traumatic stress and compassion satisfaction and approach and avoidant communication about EOL with cancer patients. METHODS: A convenience sample of 79 oncologists (n = 27 men, n = 52 women) participated in the study. Oncologists completed a survey that included a sociodemographic and clinical information questionnaire, the Professional Quality of Life Scale, and Communication about End of Life Survey. To examine the effect of secondary traumatic stress and compassion satisfaction on approach and avoidant communication, while controlling for gender and age, 2 hierarchical linear regression analyses were computed. RESULTS: Oncologists reported high levels of secondary traumatic stress and high compassion satisfaction. Scores on the approach and avoidant communication scales were in the mid-range of the scale. Lower reports of secondary traumatic stress and higher compassion satisfaction were associated with higher approach communication strategies: however, only higher secondary traumatic stress was associated with higher avoidant communication strategies. CONCLUSIONS: Our findings indicate that there is an association between emotional factors and approach communication. The findings have clinical implications in designing effective communication skills training. Further research and training should take secondary traumatic stress and compassion satisfaction into consideration to be able to ensure that terminal patients and their families receive the best quality EOL care.

Grief symptoms and difficult patient loss for oncologists in response to patient death.

OBJECTIVE: The study aimed to explore oncologist's grief symptoms over patient death and to identify why and which losses are particularly challenging when patients die. METHODS: The grounded theory method was used to collect and analyze the data. Twenty-two oncologists were interviewed between March 2013 and June 2014 from three adult oncology centers in the north, center, and south of Israel. Oncologists were at different stages of their careers and varied in their sub-specialties, gender, and personal and professional backgrounds. RESULTS: Grief begun when the patient died, in anticipation of the patient's death, many days after the death, or when the patient received a poor prognosis. The phenomenological experience of grief for oncologists included behavioral, cognitive, physical, and emotional symptoms in response to patient death. Behavioral symptoms included crying and difficulties sleeping. Cognitive symptoms included self-doubt and rumination about the patient and the care the patient had received before death. Physical symptoms included chest pain, fatigue, and general physical discomfort. Emotional symptoms included sadness, anxiety, helplessness, guilt, relief, irritability, and loss. Difficult patient loss was caused by patient-related factors, family-related factors, and disease-related factors. CONCLUSIONS: Patient deaths result in behavioral, cognitive, physical, and emotional symptoms of grief in oncologists. These symptoms become particularly intense in the context of patient, family, and disease-related factors. Educational and supportive interventions for managing grief related to patient death are needed in order to support oncologists in their emotionally and mentally taxing work. Copyright © 2016 John Wiley & Sons, Ltd.

From will to live to will to die: oncologists, nurses, and social workers identification of suicidality in cancer patients.

PURPOSE: The purpose of this research was to examine how oncologists, nurses, and social workers identify suicidality in cancer patients. METHODS: Sixty-one healthcare professionals (23 oncologists, 18 social workers, and 20 nurses) at two academic cancer centers were interviewed using an in-depth interview guide. This was a qualitative study based on grounded theory methodology. Analysis involved line-by-line coding, with categories and themes emerging from participants' narratives. RESULTS: Suicidality in cancer patients exists on a wide spectrum that ranges from an active will to live to an active will to die. Four phases were identified that included: (A) a strong will to live expressed in themes of active treatments, seeking second opinions, overtreatment, and alternative treatments; (B) a decreasing will to live indicated in themes of mental health distress and physical pain and suffering; (C) a readiness to die expressed in themes of mental health distress, previous mental health diagnoses, physical pain, avoiding more suffering, preserving quality of life in old age, nearing end of life, lack of social support, and maintaining a sense of control; and (D) a will to die indicated in themes of euthanasia and active suicidality. CONCLUSIONS: Suicidality in cancer patients exists on a continuum. Cancer patients fluctuate on this spectrum depending on circumstances such as degree of suffering, their personalities and life circumstances, and whether they are nearing the end of life. Results of the study emphasize the need to collect more context specific data on suicidality among cancer patients and the importance of early integration of psychosocial and palliative care in the cancer treatment trajectory.

Oncologists' negative attitudes towards expressing emotion over patient death and burnout.

PURPOSE: The aims of this study were to examine the relationship between negative attitudes towards expressing emotion following patient death and burnout in oncologists and to explore oncologists' preferences for institutional interventions to deal with patient death. METHODS: The participants included a convenience sample of 177 oncologists from Israel and Canada. Oncologists completed a questionnaire package that included a sociodemographic survey, a burnout measure, a survey assessing negative attitudes towards expressing emotion, and a survey assessing desired interventions to cope with patient death. To examine the association between burnout and negative attitudes while controlling for the effect of sociodemographic variables, a hierarchical linear regression was computed. RESULTS: Higher burnout scores were related to higher negative attitudes towards perceived expressed emotion (partial r = .25, p < .01) of those who viewed this affect as a weakness and as a sign of unprofessionalism. Approximately half of the oncologists found each of the five categories of institutional interventions (pedagogical strategies, emotional support, group/peer support, taking time off, and research and training) helpful in coping with patient death. CONCLUSIONS: Our findings suggest that high burnout scores are associated with negative attitudes towards expressing emotion and that there is a wide variation in oncologist preferences in coping with patient death. Institutions should promote interventions that are varied and that focus on the needs of oncologists in order to reduce burnout. Interventions that legitimize expression of emotion about patient death may be useful. Another way to reduce stigma would be to require oncologists to "opt out" rather than "opt in" to accessing a selection of social and/or individual interventions.

The Impact of Militarism, Patriarchy, and Culture on Israeli Women's Reproductive Health and Well-Being.

PURPOSE: In this paper, we situate and frame Israeli women's reproductive health within the social, historical, political, cultural, and geographical context of Israeli women's lives. METHODS: We used a theoretical review in this paper. RESULTS: Militarism, patriarchy, and cultural values heavily shape and influence Jewish and Arab women's access to and experience of reproductive health when it comes to the imperative to have children, pregnancy, birth, access to contraception and abortion, and other reproductive healthcare services. We discuss five main factors pertaining to Israeli women's reproductive health including (1) fertility and emphasis on reproduction; (2) infertility; (3) pregnancy, birth, and miscarriage; (4) reproductive rights including contraception and abortion; and (5) maternity leave and accessible childcare. CONCLUSIONS: Israel is a pro-natalist country, in which both Jewish and Arab women share many of the consequences of the social imperative to have children. Though Arab women, as part of their double minority status, are exposed to more mental health risks pre- and postpartum, the personal and public reproductive health decisions and reproductive healthcare services are largely shaped by similar social forces. These include the patriarchal and religious culture that dictates a value system that highly cherishes motherhood, and within the military political context of the on-going Israeli-Palestinian conflict and past social and political traumas. We address four major gaps that need to be addressed in order to improve Israeli women's reproductive health and well-being that include the neoliberal gap, the information gap, the reproductive health services gap, and the leadership and policy gap.

Parental spirituality in life-threatening pediatric cancer.

This study addressed parental spirituality in the context of pediatric cancer with a poor prognosis. Drawing upon previous research implementing a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents' daily lives. Spirituality included religious beliefs and practices, notions of a higher force or cosmos, relationship with a divine being, as well as elements emerging from meaning-making and relationships. Parental expectations of spirituality remained relatively constant across data collection time points (3-9 months postdiagnosis), although limited variation occurred relative to shifting circumstance (e.g., deterioration of the child's condition). Spirituality appeared to offer: greater acceptance of parents' inability to protect their child from harm related to her/his life-threatening illness, guidance and emotion decompression, and support from one's faith community. Recommendations for integrating spiritual assessment in clinical care practice are offered.