Helping parents live with the hole in their heart: The role of health care providers and institutions in the bereaved parents' grief journeys.

BACKGROUND: Bereaved parents experience significant psychosocial and health sequelae, suggesting that this population may benefit from the ongoing extension of support and resources throughout the grief journey. The interaction of hospital staff with patients and families at the end of a child's life and after death profoundly affects parental grief, offering a unique opportunity for the medical community to positively impact the bereavement experience. The current study was conducted to explore the role of the health care team and medical institutions in the grief journeys of parents whose child died a cancer-related death. METHODS: Eleven bereaved parents participated in 2 focus groups. Responses to each of the 3 main prompts were coded and analyzed independently using semantic content analysis techniques. RESULTS: Four main concepts were identified within the parental narratives, including the importance of strong and ongoing relationships between providers and bereaved families, the importance of high-quality communication, the effect of negative experiences between providers and families on parental grief, and the importance of the institution's role in the grief journeys of bereaved parents. CONCLUSIONS: Bereaved parents consistently identified the critical role played by medical staff and medical institutions throughout the grief journey. Key components of bereavement support identified by parents should serve to guide the actions of providers as well as provide a template for the development of a comprehensive bereavement program within an institution. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2757-2765. © 2016 American Cancer Society.

"Being a good patient" during times of illness as defined by adolescent patients with cancer.

BACKGROUND: Adolescents with cancer cite the opinions of others and expected impact on others as formative for their care preferences and decisions. The current study first explores how the concepts of being a good child and being a good patient may exist for adolescents with cancer and determines how adolescents describe and apply these concepts. The study then investigates parental actions and clinician behaviors perceived by adolescents with cancer as supportive in helping them to achieve their defined good child and good patient roles. METHODS: In a prospective study conducted at 2 cancer treatment centers over the course of 10 months, 40 adolescents with cancer responded to 10 open-ended questions. Semantic content analysis was used. An adolescent focus group validated the findings. RESULTS: Of the 40 participants in the current study, 39 confirmed 1 or both concepts; the good patient responses yielded 112 codes and 5 themes: cooperation, adherence, communication, self-care, and care for others. The good child responses revealed 88 codes and 7 themes: cooperation and respect, positivity, lightening others' burdens, taking treatment seriously, recognizing mutual impact, communication, and acknowledging mortality. Of 589 interview phrases, 184 (31%) depicted themes of care for others and 58 (10%) spoke of tolerating treatment in the hope of a better future for one's self or others. The benefits and challenges of living up to these definitions were discussed. CONCLUSIONS: Clinicians may consider asking adolescents about their "good child" and "good patient" descriptions to learn more about the perceived roles carried by adolescents with cancer and how these roles may impact their decision making, medication adherence, and social interactions. Cancer 2016;122:2224-33. © 2016 American Cancer Society.

Adolescents' preferences for treatment decisional involvement during their cancer.

BACKGROUND: This qualitative study investigated the medical decision-making preferences of adolescent oncology patients and the parental and clinician behaviors that adolescents report to be supportive of their preferred level of decision-making involvement. METHODS: Interviews were conducted with 40 adolescents between the ages of 12 and 18 years who were undergoing cancer treatment in Memphis, Tenn or Washington, DC. Role preferences were converted into a predetermined Likert scale decisional preference score. A semantic content analysis was used to analyze patient reports of parental behaviors, attitudes, knowledge levels, and relational interactions that facilitated their preferred level of involvement in decision making. Clinician behaviors described as supportive of decisional processes were also categorized thematically. A teen advisory council validated study findings. Data reporting followed strict adherence to Consolidated Criteria for Reporting Qualitative Research guidelines. RESULTS: Adolescents indicated a spectrum of preferred decisional roles, with the most common being an actively involved role (26 of 40 or 65%), although a shared decision-making approach was still valued. There was no statistically significant difference in the preferred decisional role with respect to demographic or medical characteristics, including the relapse status, although adolescents who preferred autonomous interview settings were more likely to prefer active decisional roles (P < .001). Adolescents recognized that situational and social contexts might shift their preferred level of involvement in medical decisions. Although adolescents wanted to be involved in decisions, they also expressed an appreciation of family insight, parental presence, and clinician guidance. CONCLUSIONS: Adolescents with cancer are able to retrospectively identify their preferences for inclusion in medical decision making, and even when preferring involvement, they value the input of trusted others.

Research Priorities in Pediatric Palliative Care.

OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.

The bereavement experience of adolescents and early young adults with cancer: Peer and parental loss due to death is associated with increased risk of adverse psychological outcomes.

BACKGROUND: Adolescents commonly experience loss due to death, and perceived closeness to the deceased can often increase the intensity of bereavement. Adolescents and early young adult (AeYA) oncology patients may recall previous losses or experience new losses, possibly of other children with cancer, while coping with their own increased risk of mortality. The bereavement experiences of AeYA patients are not well described in the literature. METHODS AND FINDINGS: This analysis of bereavement sought to describe the prevalence and types of losses, the support following a death, and the impact of loss on AeYAs aged 13-21 years with malignant disease (or a hematologic disorder requiring allogeneic transplant). Participants were receiving active oncologic therapy or had completed therapy within the past 3 years. Participants completed a bereavement questionnaire and inventories on depression, anxiety, and somatization. The cross-sectional study enrolled 153 AeYAs (95% participation), most (88%) of whom had experienced a loss due to death. The most commonly reported losses were of a grandparent (58%) or friend (37%). Peer deaths were predominantly cancer related (66%). Many participants (39%) self-identified a loss as "very significant." As loss significance increased, AeYAs were more likely to report that it had changed their life "a lot/enormously" (P<0.0001), that they were grieving "slowly or never got over it" (P<0.0001), and that they felt a need for more professional help (P = 0.026). Peer loss was associated with increased risk of adverse psychological outcomes (P = 0.029), as was parental loss (P = 0.018). CONCLUSIONS: Most AeYAs with serious illness experience the grief process as slow or ongoing. Peer or parental loss was associated with increased risk of negative mental health outcomes. Given the high prevalence of peer loss, screening for bereavement problems is warranted in AeYAs with cancer, and further research on grief and bereavement is needed in AeYAs with serious illness.

Parental Perspectives of Communication at the End of Life at a Pediatric Oncology Institution.

BACKGROUND: The interaction of health care providers and hospital staff with patients and families at the end of life affects the parental grief experience. Both verbal and nonverbal communication are key components of this interaction. OBJECTIVE: The study objective was to explore the communication between hospital staff members and patients and families at the time of patients' health decline near the end of life. METHODS: Twelve bereaved parents participated in a focus group. Semantic content analysis was used to analyze the transcript. RESULTS: Parents' responses to the prompt about typical ways the medical team communicated yielded 109 codes, which were grouped into 12 themes. The most common themes were "patient inclusion" and "explanation of medical plan," both used in 17% of responses. Responses to the prompt about positive and negative aspects of communication generated 208 codes, yielding 15 different themes. The most common theme about positive communication was the "strong relationship between family and staff." The theme "variations in care with a negative impact" was used most frequently in describing negative communication. CONCLUSION: This study helps to identify techniques that should be used by clinicians as they work with children with cancer and their families, particularly including patients in treatment decisions, ongoing relationship building, communicating with caring and empathy, using an interdisciplinary team for additional support, and pairing bad news with a plan of action.

Diabetic patient experiences in a Medicaid managed care system.

OBJECTIVE: When Tennessee received a federal waiver to place all Medicaid enrollees in managed care organizations (MCOs), patients with chronic conditions such as diabetes were deemed especially vulnerable. This survey assessed patients' perceptions of diabetic care, self-care procedures, and satisfaction with medical care before and after enrollment in a Medicaid MCO. METHODS: A telephone survey was designed and pilot tested before surveying 57 patients meeting inclusion criteria of continuous enrollment in Medicaid for two years before, and in the MCO for two years after, the initiation of Tennessee's Medicaid managed care system (TennCare). RESULTS: On average, patients were 56.1 +/- 8.9 years old (mean +/- SD), African American (87.7%), female (73.7%), disabled (64.8%), with 8.4 +/- 2.8 years of education and annual incomes below $10,000 (54.4%). Mean age at diagnosis was 39.5 +/- 11.5 years, and most (75.5%) were currently prescribed insulin. Over one-third (39.6%) described the quality of healthcare received under managed care as excellent or very good and 38.9% felt prior Medicaid care was worse or much worse. Compared to Medicaid, patients reported no difference in being denied a test under managed care because of lack of approval (P = .754). However, significant improvements were reported in receiving detailed information about diabetes (89.5% vs. 73.7%, P = .022), and diet (89.5% vs. 77.2%, P = .039) for the TennCare period. Patients were more likely to perform finger stick blood glucose tests under the MCO (76.8% vs. 40.7%, P = .001), but did not report that blood glucose was controlled more of the time (P = .332). CONCLUSION: Most patients were satisfied with their MCO care, and most reported that finger stick glucose monitoring increased under the MCO. However, no significant gains in controlling blood sugar were reported. From the perspective of most patients, enrollment in an MCO had positive outcomes and resulted in improved access to diabetes-related health information.

QSource quality initiative. Reversing the diabetes epidemic in Tennessee.

This paper summarizes the results of a recent report on diabetes in Tennessee. Diabetes has reached epidemic proportions in Tennessee. In 2001, an estimated 7.7% of the population was diabetic, an increase from 5.8% a decade earlier. This increase is largely due to widespread unhealthy eating habits, physical inactivity, and associated obesity. The majority of diabetes is preventable and can be effectively treated through daily exercise and a healthy diet. Diabetes prevention efforts in Tennessee schools and communities, however, are grossly inadequate. Providers and payers underemphasize prevention. Since the causes of diabetes can be traced to childhood habits, early prevention is the key to reversing the diabetes epidemic. Immediate statewide action must be taken to promote daily exercise and decrease access to high-calorie, high-fat "junk" food in our schools and communities. Physicians, health professional organizations, health plans, government, churches, schools, and employers must work together to battle the diabetes epidemic through public education, community-wide health promotion programs, and efforts to improve quality of diabetes care for all Tennesseans.