Navigating the advanced cancer experience of underserved Latinas

Objective

Previous cancer research does not adequately inform us about the experiences of managing a more serious, life-threatening cancer condition, especially for underserved Latinas. This study was designed to explore the ways in which Latinas navigate through and deal with advanced cancers.

Methods

A purposive sample of 24 underserved Latina women was selected from a randomized controlled trial. Data were analyzed using a phenomenological approach to explore navigation of the advanced cancer experience.

Results

This study outlines a conceptual framework which denotes the interconnectedness of multiple factors that influence the cancer experience for Latina women. Experiences with advanced cancer were embedded within a social, cultural, and systemic framework described as 1) intrapersonal experiences; 2) interpersonal experiences; 3) provider interactions; and 4) medical system factors.

Conclusions

This study indicates that underserved Latinas face complex circumstances that interfere with the diagnosis and treatment of cancer. However, women expressed positive attitudes and held beliefs about survival which helped them through their experience with cancer. The implication of these findings is that Latinas have protective attitudes and beliefs that help them to overcome “tragic” circumstances. Providers need to become aware of the complexity of these issues in order to achieve competent, effective, and efficient practice in medical settings with Latinas.     

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.     

The Essential Role of Occupational Therapy to Address Functional Needs of Individuals Living with Advanced Chronic Cancers

ObjectiveMedical progress in cancer care has led to increased life expectancy outcomes across all stages of cancer, including in advanced cancers. People now living with advanced chronic cancers have unique, ongoing functional and quality-of-life needs. This article explores the functional considerations of individuals living with advanced chronic cancers in terms of managing chronic palliative care needs, assessing and intervening for functional issues, and consistently using occupational therapy in shared service provision together with medical and nursing teams. The unique and changing functional needs of these individuals may be effectively addressed through consideration of chronic palliative approaches to care; earlier access to occupational therapy services to facilitate continued engagement in everyday activities; and shared service provision with nursing to address both medical wellness and functional status.Data SourcesThese include key databases (Pubmed, CINAHL), international guidelines, and professional guidance documents.ConclusionIndividuals living with advanced chronic cancer have ongoing and fluctuating functional needs that should be addressed in palliative care service provision. The inclusion of occupational therapy as part of inter- and multidisciplinary teams can facilitate maximization of function for individuals living with advanced chronic cancer.Implications for Nursing PracticeTimely early referrals to occupational therapy can address functional issues as they arise, and can prepare individuals for future functional considerations.     

Information-seeking behaviours and decision-making process of parents of children with cancer

PurposeThis study aimed to explore the information-seeking behaviours, perceptions and decision-making experiences of parents of children with cancer by employing semi-structured interviews.Methods and sampleA qualitative research design was used to assess the information-seeking behaviours, perceptions and decision-making processes used by parents in Turkey whose children have cancer. Interviews were conducted with 15 parents of children with cancer using a semi-structured interview schedule. The interviews were recorded and transcribed verbatim.ResultsSix main issues emerged. Issues were related to parents' information needs, the sources of information, difficulties that the parents encountered when seeking information, the decision-making process, the factors affecting decision-making, and expectations from the health team. Information resources for parents included medical doctors and nurses, the internet, friends and the parents of other children who were staying in the hospital. The parents mostly sought information about their child's illness, prognoses, treatment, side-effects and care giving issues. The parents expressed that they were directed primarily by health care providers during their decision-making process.ConclusionsAdequate and systematic information pertaining to illness, treatment, prognosis and child care must be provided by health care professionals throughout the illness process. In addition, individual guidance and spare time are key components to helping parents make decisions about their children with cancer.     

The Impact of Specialty Palliative Care in Pediatric Oncology: A Systematic Review

ContextChildren with cancer and their families have complex needs related to symptoms, decision-making, care planning, and psychosocial impact extending across the illness trajectory, which for some includes end of life. Whether specialty pediatric palliative care (SPPC) is associated with improved outcomes for children with cancer and their families is unknown.ObjectiveWe conducted a systematic review following PRISMA guidelines to investigate outcomes associated with SPPC in pediatric oncology with a focus on intervention delivery, collaboration, and alignment with National Quality Forum domains.MethodsWe searched PubMed, Embase, Scopus, Web of Science, and CINAHL databases from inception until April 2020 and reviewed references manually. Eligible articles were published in English, involved pediatric patients aged 0-18 years with cancer, and contained original data regarding patient and family illness and end-of-life experiences, including symptom management, communication, decision-making, quality of life, satisfaction, and healthcare utilization.ResultsWe screened 6682 article abstracts and 82 full-text articles; 32 studies met inclusion criteria, representing 15,635 unique children with cancer and 342 parents. Generally, children with cancer who received SPPC had improved symptom burden, pain control, and quality of life with decreased intensive procedures, increased completion of advance care planning and resuscitation status documentation, and fewer end-of-life intensive care stays with higher likelihood of dying at home. Family impact included satisfaction with SPPC and perception of improved communication.ConclusionSPPC may improve illness experiences for children with cancer and their families. Multisite studies utilizing comparative effectiveness approaches and validated metrics may support further advancement of the field.     

Culture and the understanding of advanced heart failure: A mixed-methods systematic review

BackgroundCultural values and beliefs influence understanding of health and illness, but we do not know their impact on patients’ understanding of advanced heart failure.AimsWe explore how culture influences the understanding of advanced heart failure for patients and their family members, and how culture influences the adoption of healthy behaviours.Method/Data SourcesIn this mixed-methods systematic review, we systematically searched MEDLINE, EMBASE, CINAHL, Scopus, Web of Science, PsycINFO, and Cochrane CENTRAL with no time limits using relevant MESH terms and keywords. Papers were themed, synthesised, and grouped into domains. The theoretical framewok PEN-3 was used to underpin the findings.FindingsWe screened the full-text of 194 studies and found 13 articles eligible; of which six were qualitative studies, five quantitative and two were mixed-method studies. In these studies, patients’ understanding of, and response to, symptoms were strongly linked to cultural beliefs. Patients from Eastern and Middle Eastern countries somatised symptoms more than those from Western cultures. Patients from Western cultures reported higher symptom distress scores. Peoples’ cultural beliefs about health and disease inform lay knowledge of heart failure diagnosis, causes, treatment and self-management and influence their healthcare decisions and behaviours.ConclusionWe found that health care practice and research in heart failure has not previously been influenced by culture. People with heart failure and their family members could be helped better by health care practitioners if their cultural values and beliefs were integrated into health care practice and policy. We argue that this is essential for the successful development of culturally competent care interventions for all people with advanced heart failure.     

Maintaining integrity in the face of death: a grounded theory to explain the perspectives of people affected by lung cancer about the expression of wishes for end of life care

BackgroundAn emphasis on patient choice in health and social care underpins a growing interest in advance care planning. Few studies have explored the views and experiences of people with advanced lung cancer about discussing their wishes or preferences for end of life care. Evidence suggests that some people may want nurses and other health professionals to initiate discussions about the future. However, there is a lack of evidence about what priority patients facing death give to their preferences and wishes, and how these shape their views about end of life.ObjectivesTo explore the views and experiences of people affected by lung cancer about discussing preferences and wishes for end of life care and treatment.DesignA qualitative study using semi-structured interviews and constant comparative method of analysis to develop a grounded theory.SettingsOne multi-cultural city and one post-industrial town in northern England, UK. Data were collected between 2006 and 2008.ParticipantsInterviews took place with 25 patients with lung cancer and 19 family members.MethodQualitative constructivist grounded theory study.ResultsThe study found that preferences and wishes for future care and treatment were not the main concern of people with cancer; rather, any concerns for the future were about the social aspects of death. A theory ‘maintaining integrity in the face of death’ is proposed. This theory purports that patients with advanced lung cancer and their families focus on acting and talking as ‘normal’ to help them balance living in the present whilst facing death. Participants talked about their experiences of facing death whilst striving to live in the present. Planning for one's own dying and eventual death was not something that people with lung cancer reported having discussed, except when, out of concern for their families, practical arrangements needed to be made following death.ConclusionThe study suggests that people facing the end of their life primarily focus on living in the present. The findings suggest that nurses need to develop ways of helping people prepare for the ‘social’ rather than just the physical or ‘medicalised’ aspects of death.     

Self care and end of life care in advanced cancer: Literature review

BackgroundSelf care is a key feature of health care policy in the UK. It has been suggested that self care by patients with cancer improves quality of life, symptom management, and patient satisfaction. However, little is known about self care and end of life care.ObjectivesThis review sets out to find out what is known about how people experiencing end of life care manage their illness themselves, in the advanced stages of their disease.MethodsA systematic review was conducted; searching key databases; extracting relevant literature, using RefMan, NVIVO; grading, analysing, and appraising the literature.ResultsEighteen articles were included in the review. Themes identified were; interventions for end of life care; self care behaviours used by patients; factors that prevent patients to self care.ConclusionThe nurses’ role in supporting self care for people with advanced cancer is important. The review identifies various ways nurses can empower patients to self care related to oncology.     

Patient views on smoking,lung cancer,and stigma: A focus group perspective

PurposePatients with lung cancer, the leading cause of cancer death, are shown to have high levels of psychological distress and poorer quality of life as compared to patients with other cancer types. The purpose of this paper is to describe patient focus group discussions about the lung cancer experience in relation to perceived stigmatization, smoking behaviors, and illness causes; and to discuss implications of these findings relative to the role of the nurse as a patient advocate.Methods and sampleEleven adult lung cancer patients participated in audio taped focus group sessions. Discussion questions probed patient perceptions of lung cancer challenges and adaptation issues.ResultsSix primary themes from the qualitative analysis included: 1) societal attitudes; 2) institutional practices and experiences; 3) negative thoughts and emotions such as guilt, self-blame and self-deprecation, regret, and anger; 4) actual stigmatization experiences; 5) smoking cessation: personal choices versus addiction; and 6) causal attributions.ConclusionsPatients with lung cancer uniquely experience an added burden from developing an illness that the public recognizes is directly associated with smoking behaviors. Stigmatization and smoking related concerns are of high importance. Oncology nurses must be at the forefront in ensuring that patients with lung cancer do not experience additional burden from perceptions that they somehow deserve and need to defend why they have the illness that they are facing.     

Bone Health Issues in the Pediatric Oncology Patient

ObjectiveThis article reviews how childhood cancers and related treatments affect bone integrity. Interventions related to exercise, hormone replacement, vitamin D and calcium supplementation, and bisphosphonate use are addressed.Data SourcesLiterature was reviewed related to childhood cancers, treatment and side effects, assessment, and management to optimize bone health.ConclusionsCure rates of childhood cancer have dramatically improved due to new therapeutic advances allowing children diagnosed with cancer to live longer. Unfortunately, the cost of cure can be the increased development of chronic health issues. Since many children receive their treatment, including antineoplastic agents, radiation, surgery, and corticosteroid therapy, during time of active skeletal maturation and growth, their bone health may be negatively impacted. The development of bone mass can be impaired, bone density may be decreased, fractures may occur, growth may be restricted, and there may be poor bone repair. Review of the data indicates that more research is needed to understand what is necessary for optimal bone health in the pediatric population in general, specifically for the child affected by cancer.Implications for Nursing PracticeNurses are integral to the development of comprehensive understanding of the bone health needs of the pediatric oncology patient population and educating the patient and family about the importance of bone health. Children and young adult survivors would benefit from collaborative care between all their health care providers. Steps to improve bone health before diagnosis, on treatment, and through to survivorship remain to be addressed by future research.     

My Wife Has Breast Cancer: The Lived Experience of Arab Men

ObjectivesBreast cancer is a leading cause of mortality and morbidity among women in Middle Eastern countries. In Bahrain, breast cancer is the second-leading cause of death and first among women. Prior research has shown that Middle Eastern women will often delay seeking treatment for breast cancer and subsequently hide the diagnosis from friends and family. As a result, women rely heavily on their spouses for support and care. There is limited research on spouses’ experience of breast cancer, especially in the Middle East. This study explored the lived experience of Arab men following their wives’ diagnosis and treatment for breast cancer in Bahrain.Data SourcesData from semi-structured interviews with Arab men (n = 6) were analyzed using the interpretative phenomenological approach (IPA). Participants’ wives had completed their treatment 3 to 6 months prior to the interviews.ConclusionThree main themes emerged: Perceptions of breast cancer diagnosis and treatment, coping strategies, and impact on quality of life. Findings revealed that Arab men in Bahrain relied on family and friends for support and drew on religious beliefs to give them hope so they could better support their wives. Findings also highlighted the unique culturally related coping strategies used by Arab men. This study highlights the specific needs of Arab men following their wives’ diagnosis and treatment for breast cancer. Faith and beliefs were overwhelmingly a foundation for coping and support. Therefore, this must be considered within the health care service to improve support strategies for Arab patients and their spouses in treatment and care plans encompassing a holistic interprofessional, multidisciplinary, and communicative approaches including the need for culturally sensitive care pathways that are cognizant of the care needs through help-seeking and information-sharing throughout the illness. Nurses should provide the education and encourage open communication among the couple and their family.Implications for Nursing PracticeFindings can be used by nurses and other health care professionals to provide better support and holistic care to Arab women with breast cancer and their spouses.     

The process of striving for an ordinary,everyday life,in young children living with cancer,at six months and one year post diagnosis

PurposeHealth care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis.MethodsInterviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out.ResultsThe process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described.ConclusionNurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.     

The nature and timing of family-provider communication in late-stage cancer: a qualitative study of caregivers' experiences

ContextFamily members of people with advanced cancer can experience intensified distress and uncertainty during the final stages of their loved one’s illness. Enhanced comprehension about disease progression, symptom management, and options for care can help families adapt, cope, and plan for the future.ObjectivesGuided by concepts from the Sense of Coherence Theory, which illuminates factors that contribute to adaptation in stressful situations, the objective of this study was to explore and describe family caregivers’ accounts of the nature and timing of communication they had with a loved one’s health care provider(s) during the advanced stages of cancer and before hospice enrollment.MethodsRetrospective in-depth interviews were conducted with caregivers of 46 people who died of cancer. Interviews were audiotaped, transcribed, and submitted to an iterative process of qualitative data analysis that included 1) systematic coding, 2) the use of data matrices to display summarized results and collapse the codes into themes, 3) and axial coding to characterize the nature of the themes.ResultsOverall, communication with providers was found to be either 1) satisfactory or 2) unsatisfactory. Satisfactory communication was 1) compassionate, 2) responsive, and/or 3) dedicated. Unsatisfactory communication was described as 1) sparse, 2) conflicted, 3) contradictory, and/or 4) brink of death.ConclusionCommunication with health care providers is critical for helping family caregivers understand and manage the changes that accompany a life-limiting illness. Timely communication with information and meaningful discussion about disease progression can help families prepare for the advanced stages of an illness and approaching death.     

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.     

Fe en Accion/Faith in Action: Design and implementation of a church-based randomized trial to promote physical activity and cancer screening among churchgoing Latinas

ObjectivesTo describe both conditions of a two-group randomized trial, one that promotes physical activity and one that promotes cancer screening, among churchgoing Latinas. The trial involves promotoras (community health workers) targeting multiple levels of the Ecological Model. This trial builds on formative and pilot research findings.DesignSixteen churches were randomly assigned to either the physical activity intervention or cancer screening comparison condition (approximately 27 women per church). In both conditions, promotoras from each church intervened at the individual- (e.g., beliefs), interpersonal- (e.g., social support), and environmental- (e.g., park features and access to health care) levels to affect change on target behaviors.MeasurementsThe study’s primary outcome is min/wk of moderate-to-vigorous physical activity (MVPA) at baseline and 12 and 24 months following implementation of intervention activities. We enrolled 436 Latinas (aged 18–65 years) who engaged in less than 250 min/wk of MVPA at baseline as assessed by accelerometer, attended church at least four times per month, lived near their church, and did not have a health condition that could prevent them from participating in physical activity. Participants were asked to complete measures assessing physical activity and cancer screening as well as their correlates at 12- and 24-months.SummaryFindings from the current study will address gaps in research by showing the long term effectiveness of multi-level faith-based interventions promoting physical activity and cancer screening among Latino communities.     

Radiation Therapy Students′ Knowledge,Attitudes, and Beliefs about Palliative and End-of-Life Care for Cancer Patients

Background and PurposeAlthough radiation therapy students are highly interested in providing palliative and end-of-life care (PEOLC), students often lack understanding of what palliative care is and express a lack of confidence when interacting with palliative patients. This study examined radiation therapy students' existing knowledge, attitudes, and beliefs toward PEOLC for cancer patients and how professional and personal experiences influenced those factors.MethodsThis study used a cross-sectional online questionnaire. After informed consent, data were collected from a sample of students in an undergraduate radiation therapy program in Canada. Questions were both quantitative and qualitative in nature. Responses were comprised of Likert scales and true or false responses, a case study–based vignette and several short open-ended questions.ResultsSixty-one students completed the questionnaire; the response rate was 42%. Responses indicate students had an incomplete understanding of PEOLC principles despite reporting positive views and interest in the topic. Professional and personal experiences improved students' knowledge regarding the role of PEOLC and attitudes and beliefs became more positive with increased real-life experiences.ConclusionsExperiential learning influences students' knowledge, attitudes, and beliefs about PEOLC. To better prepare students for their future professional roles, it is necessary for radiation therapy undergraduate programs to include PEOLC educational initiatives in its curricula. These initiatives should emphasize holistic care to prepare students to be competent radiation therapists who can address patients' complex PEOLC needs.