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Family caregivers' perspectives on communication with cancer care providers.

ABSTRACT: Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N?=?63). Participants: Participants were family caregivers of adult patients with cancer. Most were patients' spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment. Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers' experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers. Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals' experiences beyond their prescribed roles of "cancer patient" and "caregiver." Implications for Psychosocial Oncology Practice: Psychosocial oncology providers' strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers' potentially different communication preferences.

SUBMITTER: Washington KT

PROVIDER: S-EPMC7350905 | biostudies-literature | 2019 Nov-Dec

REPOSITORIES: biostudies-literature

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Family caregivers' perspectives on communication with cancer care providers.

Washington Karla T KT Craig Kevin W KW Parker Oliver Debra D Ruggeri Jeffrey S JS Brunk Samantha R SR Goldstein Andrea K AK Demiris George G

Journal of psychosocial oncology 20190616 6

<b>Purpose/Objectives:</b> Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. <b>Design and Methods:</b> Researchers conducted a secondary inductive thematic analysis of qualitative interviews origin ...[more]

PMID: 31204604

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Project description:BackgroundEffective cooperation between a pediatric palliative care team (PPCT), primary treating specialists, patients and families is crucial for high quality care of children with complex life-limiting conditions. Several barriers among patients, families and treating specialists have been identified in the context of initializing pediatric palliative care. The aim of the study was to assess the experience with initial pediatric palliative care consultations from perspectives of family caregivers and treating physicians with a special focus on two innovative approaches: attendance of the treating specialist and the opportunity for parents to give feedback on the written report from the consultation.MethodsThis was a qualitative study using semi-structured interviews with family caregivers of children with malignant and non-malignant disease and their treating specialists. Framework analysis was used to guide the data collection and data analysis.ResultsIn total, 12 family caregivers and 17 treating specialists were interviewed. Four main thematic categories were identified: (1) expectations, (2) content and evaluation, (3) respect and support from the team and (4) consultation outcomes. Parents viewed the consultation as a unique opportunity to discuss difficult topics. They perceived the attendance of the treating specialist at the initial consultation as very important for facilitating communication. Treating specialists valued the possibility to learn more about psychosocial issues of the child and the family while attending the initial palliative care consultation. All participants perceived the written report from the consultation as useful for further medical decisions. Family members appreciated the chance to give feedback on the consultation report.ConclusionsOur study identified several clinically relevant issues that can help initialize pediatric palliative care and establish effective collaboration between families and PPCT and treating specialists. Supporting treating specialists in their ability to explain the role of palliative care is important in order to reduce the risk of misunderstanding or unrealistic expectations. Developing more specific expectations seems to be one of the ways to further increase the effectiveness of initial consultations. The results of the study can be especially helpful for the initial phase of implementing pediatric palliative care and initializing the process of setting up a collaborative relationship with palliative care teams in the hospital.

Project description:Family caregivers and care providers are increasingly becoming more distressed and reaching a breaking point within current systems of care. First Nations family caregivers and the health and community providers employed in First Nations communities have to cope with colonial, discriminatory practices that have caused intergenerational trauma and a myriad of siloed, disconnected, and difficult-to-navigate federal-, provincial/territorial-, and community-level policies and programs. Indigenous participants in Alberta's Health Advisory Councils described Indigenous family caregivers as having more difficulty accessing support than other Alberta caregivers. In this article, we report on family caregivers', providers', and leaders' recommendations to support First Nations family caregivers and the health and community providers employed in First Nations. We used participatory action research methods in which we drew on Etuaptmumk (the understanding that being in the world is the gift of multiple perspectives) and that Indigenous and non-Indigenous views are complementary. Participants were from two First Nation communities in Alberta and included family caregivers (n = 6), health and community providers (n = 14), and healthcare and community leaders (n = 6). Participants advised that family caregivers needed four types of support: (1) recognize the family caregivers' role and work; (2) enhance navigation and timely access to services, (3) improve home care support and respite, and (4) provide culturally safe care. Participants had four recommendations to support providers: (1) support community providers' health and wellbeing; (2) recruit and retain health and community providers; (3) improve orientation for new providers; and (4) offer providers a comprehensive grounding in cultural awareness. While creating a program or department for family caregivers may be tempting to address caregivers' immediate needs, improving the health of First Nations family caregivers requires a population-based public health approach that focuses on meaningful holistic system change to support family caregivers.

Project description:Purpose: Effective communication between young adult (YA; aged 18-39 years) cancer survivors and their health care providers is critical for managing post-treatment symptoms. Yet, little is known about YAs' and providers' preferences for and barriers to symptom communication, variables important for developing interventions to improve and optimize YA-provider communication. Methods: YA survivors (N = 21) and oncology providers (N = 11) rank ordered their preferred methods for symptom communication and top communication barriers. Interviews were conducted to obtain qualitative data (i.e., preferred methods for, barriers, and suggestions to improve symptom communication). Interviews were transcribed, and thematic qualitative analysis was used. Results: Sixty-two percent of YAs preferred communicating using the electronic messaging system affiliated with the medical record (MyChart), whereas providers (100%) preferred communicating during in-person clinic visits. Qualitative data from YAs pointed to benefits of MyChart, including ease of use and rapid responses. Providers acknowledged that, although efficient, high message volumes and expectations for rapid responses were barriers to MyChart. Providers described benefits of in-person visits, including visually assessing patients' concerns, providing immediate support, and more safely managing symptoms. Lack of time (48%) was YAs' top communication barrier, whereas providers endorsed patients not bringing up symptoms (64%). Qualitative data reflected patient-level (e.g., embarrassment/discomfort, lack of skills) and provider-level (e.g., forgetting to ask about a symptom) barriers. YAs and providers offered strategies to improve communication. Conclusion: Survivor- and provider-level communication interventions that account for YAs' and providers' differing communication preferences and directly address communication barriers unique to survivors' developmental stage may be necessary to improve symptom communication.

Project description:BackgroundMost women with breast cancer in Ethiopia are diagnosed at an advanced stage of the disease, but the reasons for this have not been systematically investigated. This study, therefore, aimed to explore the main reasons for diagnosis of advanced stage breast cancer from the perspective of patients, family members, and health care providers.MethodsA qualitative study with in-depth interviews was conducted with 23 selected participants at Tikur Anbessa Specialized Hospital, Oncology Clinic using a semi-structured interview guide. These participants were 13 breast cancer patients, 5 family members, and 5 health care providers. Data were transcribed into English, coded and analyzed using thematic analysis.ResultsAwareness about the causes, risk, initial symptoms, early detection methods, and treatment of breast cancer were uncommon, and misconceptions about the disease prevailed among breast cancer patients and family members. There was a sense of hopelessness and uncertainty about the effectiveness of conventional medicine amongst patients and family members. Consequently, performing spiritual acts (using holy water) or seeking care from traditional healers recurred amongst the interviewees. Not taking initial symptoms of breast cancer seriously by the patients, reliance on traditional medicines, competing priorities, financial hardship, older age, fear of diagnosis of cancer, and weak health systems (e.g., delay in referral and long waiting period for consultation) were noted as the main contributors to late diagnosis. In contrast, persuasion by family members and friends, higher educational attainment, and prior experience of neighboring women with breast cancer were mentioned to be facilitators of early diagnosis of breast cancer.ConclusionsThe causes of late diagnosis of breast cancer in Ethiopia are multi-factorial and include individual, cultural, and health system factors. Interventions targeting these factors could alleviate the misconceptions and knowledge gap about breast cancer in the community, and shorten waiting time between symptom recognition and diagnosis of breast cancer.

Project description:Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care.A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis.From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work.The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.

Project description:ObjectivesTo understand dementia care providers' perspectives on high-quality care for persons living with dementia (PLWD) in long-term care (LTC).DesignA qualitative study using a directed content analysis approach.Setting and participantsNine national LTC dementia care providers.MethodsWe facilitated 5 listening sessions centered around dementia care philosophies, models, and practices. Two researchers first mapped qualitative data to the Holistic Approach to Transformational Change (HATCh) model for dementia care using a directed content analysis approach. They then identified themes and subthemes emerging from the data using a conventional analysis approach. They coded data iteratively and solicited input from 3 additional researchers to reach consensus where needed. Member checks were performed to ensure the trustworthiness of the data during 2 follow-up listening sessions.ResultsThe 9 participants described the importance of understanding the experiences of PLWDs in order to provide high-quality dementia care and to deliver such care with the residents and their preferences as the focus. They emphasized experiential education as essential for families and all staff, regardless of role. They noted the need to balance safety with resident choice, as well as the corresponding need for facility leadership and regulators to support such choices. The listening sessions revealed areas to foster person-centered care for PLWD, but also highlighted barriers to implementing this philosophy in LTC settings.Conclusions and implicationsEmergent themes included care practices that center on resident preferences and are supported by staff with the experiential education and communication skills necessary to relate to and support PLWD. These findings provide contextual information for researchers seeking to identify and test interventions that reflect LTC providers' priorities for PLWD and emphasize the need to align research priorities with provider priorities.

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Family caregivers' perspectives on communication with cancer care providers.

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Family caregivers' perspectives on communication with cancer care providers.

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