Cancer Caregivers’ Prognostic and End-of-Life Communication Needs and Experiences and their Impact

ContextFamily caregivers of patients with advanced cancer are integrally involved in communications regarding prognosis and end-of-life (EOL) planning and care. Yet little research has examined caregivers’ communication experiences or the impact of these experiences on patients and caregivers at EOL.ObjectivesInvestigate cancer caregivers’ communication experiences and potential impact on patient and caregiver outcomes.MethodsSemistructured interviews with bereaved family cancer caregivers (N=19) about their communication needs and experiences as their loved one approached EOL and died. Audiotaped interviews were transcribed and thematically analyzed for communication-related themes.ResultsCaregivers described fulfilling many important communication roles including information gathering and sharing, advocating, and facilitating—often coordinating communication with multiple partners (e.g., patient, family, oncology team, hospital team). Caregivers reported that, among the many topics they communicated about, prognosis and EOL were the most consequential and challenging. These challenges arose for several reasons including caregivers’ and patients' discordant communication needs, limited opportunity for caregivers to satisfy their personal communication needs, uncertainty regarding their communication needs and responsibilities, and feeling unacknowledged by the care team. These challenges negatively impacted caregivers’ abilities to satisfy their patient-related communication responsibilities, which shaped many outcomes including end-of-life decisions, care satisfaction, and bereavement.ConclusionCaregivers often facilitate essential communication for patients with advanced cancers yet face challenges successfully fulfilling their own and patients’ communication needs, particularly surrounding prognostic and end-of-life conversations. Future research and interventions should explore strategies to help caregivers navigate uncertainty, create space to ask sensitive questions, and facilitate patient-caregiver discussions about differing informational needs.     

Family caregivers' decision process to institutionalize persons with Parkinson's disease: a grounded theory study

BackgroundParkinson's disease is a degenerative neurological disorder affecting millions. Treatment priorities focus on delaying its progression and resulting disability, and helping individuals continue to live at home as long as possible. This often requires long-term assistance by family caregivers.AimsThe purpose of the study was to understand (1) family caregivers’ experiences in caring for a relative with Parkinson's disease, and (2) factors that influenced the decision to place the relative in a long-term care facility.ParticipantsTwenty semi-structured interviews were conducted with adult family members (17 female, 3 male) acting as full-time primary caregivers for a relative with Parkinson's disease.MethodGrounded theory was used to explore the process of healthcare decision-making and to illustrate the experiences of caring for persons with Parkinson's disease. The interview questions centered on family caregiving experiences and on how these caregivers made long-term care decisions on behalf of their loved ones. Data were coded and analyzed using dimensional analysis.FindingsThe caregiving model developed from the data illustrated that heightened caregiver strain—a risk factor for institutionalization—results from increased caregiving load and increased illness severity over time. Safety concerns, falls with severe injury, managing changes in health, and depleted support also influenced the decision to institutionalize the relative with Parkinson's disease.ConclusionsImplications from this research suggest the need for enhanced communication between providers and caregivers, formalized caregiver assessments, improved care coordination and family-centered interventions to avoid premature institutionalization.     

Categorizing national caregiver recommendations to support family caregivers and address unmet needs

BackgroundRecognizing family caregivers as vital providers of long-term assistance to loved ones with chronic illness, several national organizations developed recommendations to improve support for family caregivers.PurposeThis article categorizes these recommendations to advance family-centered nursing practice, develop health policies, and advocate for family caregiver support.MethodsSix reports of caregiver recommendations published in the United States from 2016 to 2021 were analyzed using thematic analysis.FindingsThe 108 recommendations were organized into five categories: policy; caregiver assessment and support; health professional practices; public awareness; advance care planning.DiscussionEnsuring economic security, establishing a national data collection strategy, addressing caregivers’ diverse needs, improving access to health care and support services, and increasing public awareness were highlighted.ConclusionThe recommendations provide a roadmap for nurses at all levels of practice to advocate for a national agenda to develop, fund, and implement inclusive health care policies and interventions to address unmet caregiver needs and maximize support.     

Hospital–community interface: A qualitative study on patients with cancer and health care providers' experiences

BackgroundPatients with cancer must deal with complex and fragmented healthcare systems in addition to coping with the burden of their illness. To improve oncology treatment along the care continuum, the barriers and facilitators for streamlined oncologic care need to be better understood.PurposeThis study sought to gain insight into the hospital–community interface from the point of view of patients with cancer, their families, and health care providers on both sides of the interface i.e., the community and hospital settings.Methods and sampleThe sample comprised 37 cancer patients, their family members, and 40 multidisciplinary health care providers. Twelve participants were interviewed individually and 65 took part in 10 focus groups. Based on the grounded theory approach, theoretical sampling and constant comparative analyses were used.ResultsTwo major concepts emerged: “ambivalence and confusion” and “overcoming healthcare system barriers.” Ambiguity was expressed regarding the roles of health care providers in the community and in the hospital. We identified three main strategies by which these patients and their families overcame barriers within the system: patients and families became their own case managers; patients and health care providers used informal routes of communication; and nurse specialists played a significant role in managing care.ConclusionsThe heavy reliance on informal routes of communication and integration by patients and providers emphasizes the urgent need for change in order to improve coordinating mechanisms for hospital–community oncologic care.     

Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers’ Spiritual Suffering,Grief/Loss and Coping Strategies

ContextHuntington's disease (HD), an incurable, multi-generational, autosomal dominant disorder, creating unique challenges and a myriad of spiritually-related stressors in those affected and their familial caregivers. Spiritual suffering, experiences of grief/loss, and coping strategies have not been systematically studied in HD caregivers.ObjectivesTo comprehensively define spiritual suffering, grief/loss, and coping strategies used by HD caregivers.MethodsA PRISMA-ScR scoping literature review was conducted. Data from included research articles were organized thematically using induction and open coding. A grounded, deductive approach was used to delineate a demarcated taxonomy of themes, which encompasses all three over-arching domains. Four reviewers, employing a modified Delphi approach, ascertained which themes were demonstrated by research participants in each study.Results36 of 583 articles met the review criteria; none were published in the palliative care literature. Investigations primarily focused on intrapersonal (self-image) distress and existential angst; only rarely looking deeper into divine/transpersonal suffering, disrupted religious relationships, or meaning distress. HD caregivers experience profound grief/loss, expressed as disenfranchised grief that is associated with the ambiguous loss of their loved one, loss of family structure, social connectedness, and personal losses. Half of the studies reported maladaptive HD caregiver coping strategies—characterized by dysfunctional escape schemes; in contrast, transcendent/creative strategies were often unexplored.ConclusionHD caregivers experience prolonged grief and other forms of spiritual suffering as they progressively lose their loved ones and disruption to their own lives. With an improved assessment tool, teams with spiritual and palliative care experts will better be able to support HD family caregivers.     

Lebanese parents’ experiences with a child with cancer

BackgroundThe impact of childhood cancer on the family has been studied in different cultures and continues to be an object of study and concern, In Lebanon, a country of 4 million people 282 new pediatric cases of cancer age <20 years diagnosed in 2004 were reported in 2008.ObjectivesThe purpose of this study was to explore the experiences of Lebanese families living with a child with cancer.MethodThe study followed purposeful sampling in which 12 parents (mother or father) of a child with cancer were interviewed. Data were analyzed following the hermeneutical process as described by Diekelmann and Ironsides (1998).ResultsA constitutive pattern “It is a continuous battle” and five themes emerged from the data analysis. Living with the shock of the diagnosis; Alterations in the quality of the family’s life; Living with added burdens; Disease impact on the family and sibling dynamics; Living with uncertainty represent the major themes that emerged from the participants’ experiences while living with a child with cancer.ConclusionThe study contributes to the knowledge that would help health care professionals understand the experiences and challenges that are faced by Lebanese families living with a child with cancer. This awareness would serve as a basis for health care professionals in general and nurses in particular to understand parents’ experiences, and offer support, elicit communication of feelings, and examine possibilities for forming a partnership during the challenging course of the child’s illness. Supported parents are more likely to provide more effective care to their child with cancer.     

Integrating palliative care into self-management of breast cancer: Protocol for a pilot randomized controlled trial

BackgroundDespite evidence that palliative care increases quality and length of life, many patients and families remain uninformed about its nature and benefits. The purpose of this study is to test a psycho-educational intervention, Managing Cancer Care: A Personal Guide (MCC), intended to improve breast cancer patients' knowledge of palliative care and to facilitate its timely integration into cancer self-management.MethodsAims are to: 1) evaluate the effects of MCC on patients' knowledge of palliative care; 2) examine preliminary effects of MCC on patients' behaviors (role in self-management, engagement in goals of care conversations, medical communication, management of transitions, health care utilization), and feelings (self-efficacy, anxiety, depression, uncertainty); and 3) evaluate protocol feasibility and acceptability. An exploratory aim is to investigate how demographic and clinical factors may moderate intervention effects, with emphasis on differences in use and outcomes among minority participants. We plan to enroll 60 patients and their family caregivers with 50% minority participation. The intervention group receives MCC; the attention-control group receives a Symptom Management Toolkit. We collect data at baseline, one, and three months.DiscussionThis study will inform a large scale trial of MCC. It is challenging for patients with breast cancer, their family caregivers, and providers to make choices that include palliation alone or in combination with potentially curative treatment. MCC may help address this challenge by giving patients the information, skills, and confidence to better self-manage breast cancer. Results may help to establish palliative care as a mainstay of self-management interventions targeting serious illness.Trial registrationClinicalTrials.gov Identifier NCT02148575 (date registered: 5.21.14; datefirst patient enrolled: 7.15.14)     

Contending With Advanced Illness: Patient and Caregiver Perspectives

ContextDespite improvements in end-of-life care, some unrelieved suffering persists for patients with advanced illness and their family members. Hospice and palliative care services can reduce suffering, but these services remain under-used.ObjectivesTo investigate how patients with advanced illness and their primary caregivers experienced and responded to health care needs and decision making and how some dyads moved toward comfort-focused care.MethodsThis was a qualitative study using the grounded theory method for sample selection, data collection, and analysis. Dyadic semi-structured interviews were audio-recorded and transcribed for analysis. Twenty-two participants, 12 patients and 10 family surrogates, provided 16 interviews for this study.ResultsParticipants engaged in a process of contending with advanced illness. The major phases comprising this process were suffering, struggling, and settling. Struggling included enduring the experience and fighting the illness. During the phase of settling, the focus shifted away from curative efforts and toward supportive care. Conditions that facilitated the movement into this phase included receiving clear and consistent information about the patient's health status, trusting health care providers, having attended to advance care planning in some form, and being aware of and able to acknowledge the terminal nature of the illness.ConclusionFindings from this pilot study offer a preliminary theoretical model to enhance the understanding of patient and family caregiver needs during advanced illness. Awareness of their perspective can inform the timing and content of clinicians' communication and interventions.     

Primary caregivers experience of anti-psychotic medication: A qualitative study

BackgroundManagement of schizophrenia is now shifted to the community setting and family caregivers are the primary caregivers. Managing medications is a complex responsibility of family caregivers caring for patients with mental illness. Medication compliance contributes to improve health outcomes and reduced hospitalization for the care service users; however, little is known about attitudes and perception of family caregivers.Aims and objectivesTo explore family caregivers experience towards antipsychotic medications.MethodsA purposeful sampling of 21 family caregivers was included in the study. Semi-structured interview was employed to collect data from the participants between May and October 2015. Thematic analysis approach was used to identify the common pattern in the data.ResultsFour main themes emerged from the study: insight into illness (poor understanding of illness), treatment factor (thinking about medication, poor guidance for medication compliance), resources and support (availability of medication and cost of medication), health care provider factors (communication gap and poor assessment with follow-up, social dysfunction (social isolation, disruption in life routine) of the primary caregivers.ConclusionsResponsibility for providing care for patients with mental illness are taken place in the community setting and cared by family caregivers. More information resources are required for this role, which requires specific medication management skills and knowledge.     

Supporting People and Their Caregivers Living with Advanced Cancer: From Individual Experience to a National Interdisciplinary Program

ObjectivesTo discuss the unmet needs of patients living with advanced cancer and their caregivers and to review strategies, including collaborating with community and non-profit organizations, to help improve the experience of living with, and beyond, advanced cancer.Data SourcesPublished articles, first person experience (SB), community organization input, and survey data (Canadian Cancer Society).ConclusionPeople living with advanced cancer face significant challenges, including persistent physical symptoms and psychosocial concerns, difficulties with coordination of care, and possible lack of available resources and supports if the person is no longer being followed by cancer health care professionals. More research is required to better understand the needs of patients and their caregivers living with advanced cancer. Existing resources and supports may be inadequate for this population, and delineation of the unique needs of this population may lead to tailored care plans and, ultimately, an improved experience for patients and caregivers alike.Implications for Nursing PracticeOncology nurses are ideally suited to care for this population to help elucidate their unique unmet needs and collaborate with patients and other clinicians to develop interventions to address such unmet needs. Oncology nurses can liaise with community organizations to identify sources of support and resources for patients and their loved ones and advocate for improved care for patients affected by advanced cancer.     

Improving Patients' Experiences Communicating With Nurses and Providers in the Emergency Department

IntroductionAs health care becomes increasingly patient centered, organizations strive to improve patients’ ratings of satisfaction with care. Communication with nurses and providers drives overall satisfaction, yet little evidence exists to guide them in ensuring effective communication in the emergency department.MethodsA semistructured interview guide based on the Hospital Consumer Assessment of Healthcare Providers survey was used to elicit qualitative data from 30 patients seen in the emergency department and fast track regarding communication with nurses and providers. Data were analyzed using content analysis methodology.ResultsTwo types of overarching themes emerged. Foundational themes include behaviors that convey courtesy and respect and are required for participants to view their interactions with nurses and providers as positive. Interactive themes describe humanistic ways in which nurses and providers conveyed courtesy and respect, reassurance through careful listening, attentiveness, and explaining things in an understandable way.DiscussionThe findings underscore existing evidence regarding patients’ perceptions of being treated with courtesy and respect via nurses’ and providers’ use of positive verbal phrasing and nonverbal body language. They reveal new insights into the importance of specific communication behaviors used by nurses and providers during interactions. Treating patients as individuals amidst a fast-paced care environment, proactively recognizing and responding to patients’ fears and concerns, and explaining information clearly to ensure understanding were critical.     

Would people with Parkinson's disease benefit from palliative care?

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.     

Oncology nurses' experiences with prognosis-related communication with patients who have advanced cancer

BackgroundOncology nurses have opportunities to engage in prognosis-related communication with patients who have advanced cancer but encounter barriers that impede the patient's understanding of prognosis, delay transitions to end-of-life care, and contribute to nonbeneficial treatments.PurposeTo describe nurses' experiences with prognosis-related communication with patients who have advanced cancer.MethodThematic analysis of audio-recorded interviews with oncology nurses (n = 27). After data coding, themes were identified, and a thematic map was developed. Methods to ensure trustworthiness of the findings were used.ResultsSix themes were identified: being in the middle, assessing the situation, barriers to prognosis communication, nurse actions, benefits of prognosis understanding, and negative outcomes. Nurses managed barriers through facilitation, collaboration, or independent actions to help patients with prognosis understanding.ConclusionsShortcomings in prognosis-related communication with patients who have advanced cancer may contribute to negative outcomes for patients and nurses. Interventions that empower nurses to engage in prognosis communications are needed. Interprofessional communication skills education also may be beneficial.     

Cancer patient and caregiver experiences: communication and pain management issues

This study examined facilitators and barriers to effective patient and caregiver communication with providers with emphasis on communication related to cancer pain management. Focus groups and personal interviews were conducted with cancer patients and family caregivers of patients. Communication experiences of subjects as well as suggestions for ways to improve the communication process were elicited. Twenty-two cancer patients and 16 family caregivers participated in the study. Seven themes emerged suggesting improvements that are needed in the communication process. These include: 1) improving the process of information exchange, 2) increasing active participation of patient and caregiver in the care process, 3) improving provider relationship-building skills, 4) overcoming time barriers, 5) addressing fears regarding use of pain management medications, 6) fostering appropriate involvement of family and caregivers in the communication process, and 7) improving coordination of care among providers. Specific suggestions and their practice implications for health care providers are highlighted.     

Supporting Hope and Prognostic Information: Nurses' Perspectives on Their Role When Patients Have Life-Limiting Prognoses

ContextClinicians often feel challenged by the need to deliver difficult prognostic information to patients with a life-limiting illness while, at the same time, support their hopes. Few studies have examined nurses' perspectives on their roles in meeting these patient and family needs.ObjectivesOur objectives were to 1) describe nurses' perspectives on meeting patients' needs for hope and illness information and 2) offer insights for interventions designed to improve communication about end-of-life care for patients and their families.MethodsUsing experienced interviewers, we conducted one-on-one, semistructured interviews with 22 nurses caring for patients with advanced chronic obstructive pulmonary disease or cancer. Interviews were analyzed using a limited application of grounded theory.ResultsThree themes emerged: 1) Nurses support patients' hopes by understanding individual aspects of these hopes, focusing on patient's quality of life, and building trust with patients; 2) Nurses provide prognostic information by assessing what the patient knows and following their lead. Nurses report doing these two activities independently; and 3) Nurses identify activities associated with the provision of prognostic information that required collaboration with physicians. Important barriers that complicate effective discussion of prognosis with patients and families were identified.ConclusionsNurses describe behaviors that are useful when meeting patients' and families' needs for hope and which they are comfortable implementing in practice, without collaboration with other clinicians. By contrast, most behaviors related to meeting patients' and families' needs regarding prognostic information are completed collaboratively with physicians. These findings provide insight for the development of interdisciplinary interventions targeting communication around end-of-life care.