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1.
Support Care Cancer ; 32(6): 348, 2024 May 14.
Article in English | MEDLINE | ID: mdl-38743085

ABSTRACT

PURPOSE: Describe spirituality's role in a sample of Hispanic adolescent and young adult (AYA) cancer survivors. METHODS: This phenomenology-informed convergent parallel mixed-methods study aimed to explore participants' lived experiences with hope during cancer treatments and cancer survivorship. A purposive sample of Hispanic AYAs who completed cancer treatments 2-5 years ago were virtually recruited for participation. Participants completed virtual semi-structured interviews about their experiences with hope during cancer treatments and cancer survivorship and prepared narratives about their experiences. Thematic analyses were iteratively performed across the data set to identify final themes. RESULTS: Ten Hispanic AYA cancer survivors (mean age 30.2, SD = 4.5) years participated in this pilot study. Seven participants (70%) were female, and three participants (30%) were male. Six participants (60%) experienced non-hematologic malignancies, and four participants (40%) experienced hematologic malignancies. Eight (80%) participants' language preference was Spanish, while two (20%) participants' language preference was English. The theme spirituality and subthemes living by faith, god as a resource, and spiritual gratitude were identified as concepts participants linked to their conceptualization of hope during cancer treatment and survivorship. CONCLUSIONS: Hope and spirituality may be conceptually linked to coping behaviors among Hispanic AYA cancer survivors. Hope through faith may be a learned spiritual value in Hispanic AYAs and might play a role in their spiritual and cognitive development. Further research is needed to explore the potentially protective value of hope and spirituality for the Hispanic AYA population.


Subject(s)
Cancer Survivors , Hispanic or Latino , Spirituality , Humans , Female , Cancer Survivors/psychology , Male , Hispanic or Latino/psychology , Adult , Adolescent , Young Adult , Pilot Projects , Hope , Neoplasms/psychology , Neoplasms/therapy , Qualitative Research , Adaptation, Psychological
2.
Support Care Cancer ; 32(1): 48, 2023 Dec 22.
Article in English | MEDLINE | ID: mdl-38129602

ABSTRACT

PURPOSE: Clinical practice guidelines recommend altering neurotoxic chemotherapy treatment in patients experiencing intolerable chemotherapy-induced peripheral neuropathy (CIPN). The primary objective of this survey was to understand patient's perspectives on altering neurotoxic chemotherapy treatment, including their perceptions of the benefits of preventing irreversible CIPN and the risks of reducing treatment efficacy. METHODS: A cross-sectional online survey was distributed via social networks to patients who were currently receiving or had previously received neurotoxic chemotherapy for cancer. Survey results were analyzed using descriptive statistics and qualitative analysis. RESULTS: Following data cleaning, 447 participants were included in the analysis. The median age was 57 years, 93% were white, and most were from the UK (53%) or USA (38%). Most participants who were currently or recently treated expected some CIPN symptom resolution (86%), but 45% of those who had completed treatment more than a year ago reported experiencing no symptom resolution. Participants reported that they would discontinue chemotherapy treatment for less severe CIPN if they knew their symptoms would be permanent than if symptoms would disappear after treatment. Most patients stated that the decision to alter chemotherapy or not was usually made collaboratively between the patient and their treating clinician (61%). The most common reason participants were reluctant to talk with their clinician about CIPN was fear that treatment would be altered. Participants noted a need for improved understanding of CIPN symptoms and their permanence, better patient education relating to CIPN prior to and after treatment, and greater clinician understanding and empathy around CIPN. CONCLUSIONS: This survey highlights the importance of shared decision-making, including a consideration of both the long-term benefits and risks of altering neurotoxic chemotherapy treatment due to CIPN. Additional work is needed to develop decision aids and other communication tools that can be used to improve shared decision making and help patients with cancer achieve their treatment goals.


Subject(s)
Antineoplastic Agents , Neoplasms , Peripheral Nervous System Diseases , Humans , Middle Aged , Antineoplastic Agents/therapeutic use , Cross-Sectional Studies , Peripheral Nervous System Diseases/diagnosis , Neoplasms/drug therapy , Treatment Outcome , Quality of Life
3.
J Cancer Surviv ; 2023 Oct 16.
Article in English | MEDLINE | ID: mdl-37843659

ABSTRACT

PURPOSE: The purpose of this phenomenological study was to gain an understanding of the intersection of continued treatment and quality of life in women living with metastatic breast cancer (MBC). METHODS: This was a qualitative study in which women with MBC were interviewed about their perceptions how MBC affected their physical, emotional, and role functioning. RESULTS: Participants (n = 16) were mostly Caucasian (86.7%) and non-Hispanic (93.3%). The mean age was 55.62 years. Most women were on their third or greater line of treatment (68.5%). Themes identified from analysis of the transcripts revealed the following: (1) shock and devastation of the initial diagnosis; (2) feeling as if the sharks are circling; (3) cancer is a rollercoaster with never-ending treatments; (4) individual definitions of quality of life; and (5) you are not the person you once were. CONCLUSIONS: Symptoms, ongoing treatments, treatment changes, and disease progression negatively influence physical, emotional, and role function. Women with MBC define quality of life in different ways, and while symptoms and functional limitations are present, the cancer experience causes some to reevaluate their lives and focus on their individual priorities and values. IMPLICATIONS FOR CANCER SURVIVORS: Although newly developed treatments increase survival among women with MBC, the symptoms, concerns, and issues surrounding QOL remain unresolved. The relatively high price of continuous treatment and disease exacerbation is indicative of the need for multi-pronged intervention strategies that address physical, mental, and emotional aspects of living with MBC.

4.
Oncol Nurs Forum ; 50(4): 461-473, 2023 06 15.
Article in English | MEDLINE | ID: mdl-37677748

ABSTRACT

OBJECTIVES: To evaluate differences in the severity of global, cancer-specific, and cumulative life stress, resilience, and common neuropsychological symptoms among four subgroups of patients with distinct chemotherapy-induced nausea (CIN) profiles. SAMPLE & SETTING: Adult patients with cancer (N = 1,343) receiving chemotherapy. METHODS & VARIABLES: Patients completed stress, resilience, and neuropsychological symptom severity measures. The Memorial Symptom Assessment Scale was used to assess CIN occurrence six times over two cycles of chemotherapy. Parametric and nonparametric statistics were used to evaluate differences among subgroups of patients with distinct CIN profiles. RESULTS: The high class had significantly higher levels of global, cancer-specific, and cumulative life stress; significantly higher levels of depression, anxiety, sleep disturbance, morning and evening fatigue, and pain; and lower levels of morning and evening energy and cognitive dysfunction. IMPLICATIONS FOR NURSING: Clinicians need to evaluate CIN occurrence across each cycle of chemotherapy and assess patients for various types of stress and common neuropsychological symptoms.


Subject(s)
Cognitive Dysfunction , Neoplasms , Adult , Humans , Anxiety/chemically induced , Cognitive Dysfunction/chemically induced , Fatigue/chemically induced , Nausea/chemically induced , Pain , Neoplasms/drug therapy
5.
Comput Inform Nurs ; 41(10): 746-751, 2023 10 01.
Article in English | MEDLINE | ID: mdl-36719756

ABSTRACT

Peripheral neuropathy is a debilitating neurological disorder affecting 13% to 14% of the US population. Estimates for co-occurring mood disorders in individuals with neuropathy range from 30% to 47%, but sparse evidence exists regarding depression treatment for adults with neuropathy. A cognitive-behavioral treatment, Acceptance and commitment therapy, is known to reduce depression in people with chronic pain, but little is known about its effectiveness in adults with neuropathy, particularly when the treatment is provided via videoconference. Acceptability and usability of this therapeutic treatment provided via videoconference was assessed in participants with peripheral neuropathy and symptoms of depression. Participants completed pre- and post-self-report outcome measures: the nine-item depression scale of the Patient Health Questionnaire and the 36-item Short-Form Health Survey. They also completed the Acceptability e-Scale and Post-Study System Usability Questionnaire after treatment. Depression decreased significantly, with scores declining from an average of 9.2 to 5.1 on the Patient Health Questionnaire ( P < .05). The Short-Form Health Survey indicated significant improvement post-treatment on the "Energy/Fatigue" and "Emotional Well Being" subscales. The intervention was rated by participants as acceptable and demonstrated high usability. This initial therapeutic treatment via videoconference offers promise to treat depression in older adults with neuropathy.

6.
Cancer Nurs ; 46(2): 92-102, 2023.
Article in English | MEDLINE | ID: mdl-35671438

ABSTRACT

BACKGROUND: Unrelieved chemotherapy-induced nausea (CIN) occurs 48% of patients undergoing chemotherapy and is one of the most debilitating symptoms that patients report. OBJECTIVE: The aims of this study were to identify subgroups of patients with distinct CIN profiles and determine how these subgroups differed on demographic and clinical characteristics; severity, frequency, and distress of CIN; and the co-occurrence of common gastrointestinal symptoms. METHODS: Patients (n = 1343) completed demographic questionnaire and Memorial Symptom Assessment Scale 6 times over 2 cycles of chemotherapy. Latent class analysis was used to identify subgroups of patients with distinct CIN profiles. Differences among these subgroups were evaluated using parametric and nonparametric statistics. RESULTS: Four distinct CIN profiles were identified: none (40.8%), increasing-decreasing (21.5%), decreasing (8.9%), and high (28.8%). Compared with the none class, patients in the high class were younger, had a lower annual household income, had child care responsibilities, had a lower Karnofsky Performance Status score and a higher Self-administered Comorbidity Questionnaire score, and were more likely to have received chemotherapy on a 14-day cycle and a highly emetogenic chemotherapy regimen. In addition, patients in the high class reported high occurrence rates for dry mouth, feeling bloated, diarrhea, lack of appetite, abdominal cramps, difficulty swallowing, mouth sores, weight loss, and change in the way food tastes. CONCLUSIONS: That 60% of the patients reported moderate to high CIN occurrence rates confirms that this unrelieved symptom is a significant clinical problem. IMPLICATIONS FOR PRACTICE: Nurses need to evaluate patients' level of adherence to their antiemetic regimen and make appropriate referrals for physical therapy, psychological services, and dietary counseling.


Subject(s)
Antiemetics , Antineoplastic Agents , Neoplasms , Humans , Neoplasms/complications , Neoplasms/drug therapy , Neoplasms/diagnosis , Nausea/chemically induced , Nausea/drug therapy , Antiemetics/therapeutic use , Patients , Surveys and Questionnaires , Antineoplastic Agents/adverse effects
7.
J Palliat Med ; 25(10): 1563-1570, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35960820

ABSTRACT

Background: Thirty-six states, including Florida, have legalized marijuana for medical and/or recreational use, yet how it is used and perceived by persons with cancer is not well understood. Objectives: The purpose of this study was to identify patterns of use, perceived benefits, and side effects of medical marijuana (MMJ) among cancer patients in Florida. Methods: For this descriptive, cross-sectional study, anyone residing within the state of Florida who was diagnosed or treated for a malignancy within the last five years and had used MMJ was eligible. An online survey containing questions about dosing, side effects, perceived benefits, and barriers to use was used. Descriptive statistics including frequencies, percentages, means, and standard deviations were used to analyze quantitative data. Responses to open-ended questions were coded and categorized. Results: Sleep (n = 112), pain (n = 96), and anxiety (n = 82) were the most common symptoms participants used MMJ to relieve and overall felt it was highly effective. MMJ was well tolerated with a minority (10.3%) reporting any adverse effects. Cost was the most frequent barrier reported by participants (42.8%). A variety of legal, bureaucratic, and system-related barriers were described. Conclusion: Participants perceived MMJ to be helpful in alleviating cancer symptoms. They held negative perceptions of the way MMJ is implemented and integrated into their oncology treatment plan. Enhanced communication and patient/provider education on MMJ are needed to inform patient decision making.


Subject(s)
Medical Marijuana , Neoplasms , Anxiety , Cross-Sectional Studies , Humans , Medical Marijuana/therapeutic use , Neoplasms/drug therapy , Surveys and Questionnaires
8.
J Gerontol Nurs ; 48(5): 19-26, 2022 May.
Article in English | MEDLINE | ID: mdl-35511060

ABSTRACT

The current mixed methods study investigated what changes in quality of life (QOL) mean to older adults with complicated grief treated with Accelerated Resolution Therapy (ART) post-hospice services. An informational matrix, which included select patient characteristics (e.g., number of comorbidities, single versus multiple deaths, relationship role), four identified qualitative themes, end of study QOL scores measured by the Centers for Disease Control and Prevention Health-Related QOL Healthy Days Module, and changes in scores from baseline to end of study, was created to analyze the data. Results showed that although a history of multiple deaths may contribute to greater improvements in QOL with therapy, having at least one comorbidity resulted in a richer description and endorsement of QOL in response to treatment. This is the first longitudinal, randomized controlled trial using a mixed methods approach to examine QOL of hospice family caregivers with complicated grief who are receiving ART. This study identifies potential links of QOL and caregiver characteristics, providing nurses with foundational knowledge for assessment, care, and further research on the experiences of complicated grief. [Journal of Gerontological Nursing, 48(5), 19-26.].


Subject(s)
Hospice Care , Quality of Life , Aged , Caregivers , Comorbidity , Grief , Humans
9.
Support Care Cancer ; 30(8): 6807-6815, 2022 Aug.
Article in English | MEDLINE | ID: mdl-35527287

ABSTRACT

BACKGROUND/SIGNIFICANCE: Over 168,000 women are living with metastatic breast cancer (MBC) in the USA. More efficacious treatments have lengthened overall survival, but these treatments often result in a myriad of symptoms and financial burden that may negatively impact perceptions of cancer treatment and medication-taking behavior. PURPOSE: To explore cancer treatment-specific medication beliefs among women undergoing cancer treatment for MBC. METHODS: A qualitative study was conducted using semi-structured interviews that were audio recorded and transcribed verbatim. A thematic analysis was conducted using ATLAS.ti 8.0 software. Inter-rater reliability was set at a threshold of 0.80. Participants were recruited from a National Cancer Institute-designated comprehensive care center. Eligibility included ≥18 years old, English speaking, confirmed MBC diagnosis, and able/willing to complete interviews via telephone or Zoom. RESULTS: Participants (n = 16) were largely Caucasian (86.7%) and non-Hispanic (93.3%). Mean age was 55.62 years. Three major themes were revealed, with corresponding subthemes: (1) positive cancer treatment-specific medication beliefs highlighting the benefit of treatment (relief of cancer-related symptoms and medication efficacy: delayed disease progression/extended survival); (2) negative cancer treatment-specific medication beliefs that caused concern for cancer treatment (medication symptoms, side effects and drug-drug interactions, financial toxicity, lack of guarantee medication would work); and (3) dialectical cancer treatment-specific medication beliefs indicating the benefits of cancer treatment outweigh the risks. CONCLUSION: Overall, participants noted that the benefits of cancer treatment outweighed the risks in the context of metastatic disease. Participants understood their prognosis and that they depended on their cancer treatment for survival. Oncology providers should continue to assess and address medication beliefs over the treatment trajectory and assist MBC patients with the decisional balance between the risk and benefit of continued cancer treatment.


Subject(s)
Breast Neoplasms , Adolescent , Breast Neoplasms/drug therapy , Female , Humans , Middle Aged , Qualitative Research , Reproducibility of Results
10.
Health Soc Care Community ; 30(6): e4191-e4198, 2022 11.
Article in English | MEDLINE | ID: mdl-35396879

ABSTRACT

Accelerated resolution therapy (ART) is a psychotherapy for the treatment of prolonged grief disorder (PGD) defined as severe, enduring longing for the lost person. Currently, ART lacks examination of intrapersonal processes, like expectancy, as behavioural mechanisms for action. Therefore, the purpose of this paper was to present the findings on participants' treatment expectations of ART for PGD and then discuss potential hypotheses for future testing. This study was a primary qualitative descriptive analysis of prospectively collected interview data (collected 2017-2019) accrued as part of a randomised, wait-list controlled clinical trial in bereaved hospice family caregivers in the United States. The sample included 29 former informal caregivers who were at least 1-year post death of their care recipient. They were primarily female, older (67.4 ± 7.1 years), and a little over half (n = 18) had been married to their care recipient. Thematic analysis resulted in three distinct themes with six sub-themes: The role of knowledge in expectations (sub-themes uncertainty, prior knowledge); The role of personality in expectations (sub-themes openness, positive affect); and Expecting a process (sub-themes cognitive processes, affective processes) which described the interaction of person and process in shaping expectations of our intervention. An across theme analysis of the specificity of the participants' expectations uncovered that knowledge and personality inform expectations of ART and that individuals who verbalise a process for recovery tend to be very specific in their expectations. Three hypotheses for testing are put forward and implications for practice, research and policy discussed.


Subject(s)
Grief , Hospice Care , Humans , Female , Aged , Prolonged Grief Disorder , Caregivers/psychology , Hospice Care/methods , Psychotherapy/methods
11.
J Clin Med ; 11(2)2022 Jan 12.
Article in English | MEDLINE | ID: mdl-35054049

ABSTRACT

Chemotherapy induced peripheral neuropathy (CIPN) is a dose-limiting side effect of chemotherapy for which no prevention or cure exists. Cancer and cancer treatments can adversely affect nutritional status. Nutrition may play a role in development of CIPN, yet the relationship between nutrition and CIPN is not well understood. Common laboratory values measuring various aspects of nutrition (hemoglobin/hematocrit, vitamin B12, calcium, and magnesium) may be associated with CIPN. The aim of this systematic review is to evaluate the empirical evidence surrounding the relationship between laboratory measures of nutrition and CIPN among persons with cancer who received neurotoxic chemotherapy drugs. We conducted an extensive review of the literature to identify articles that evaluated relationships between laboratory measures of nutrition and CIPN. A total of eleven articles satisfied the inclusion/exclusion criteria. Participants in the studies had breast or colorectal cancer, lymphoma or multiple myeloma and were receiving a variety of neurotoxic drugs. Hemoglobin/hematocrit, vitamin D, albumin, and magnesium were associated with CIPN. The quality of the studies ranges from fair to good. Evidence suggests that low levels of the above-mentioned tests could be associated with CIPN but additional research is needed.

12.
Omega (Westport) ; 85(2): 455-464, 2022 Jun.
Article in English | MEDLINE | ID: mdl-32757692

ABSTRACT

Complicated grief is a significant health concern for older adults, resulting in significant psychological and physical morbidity. Elements of post traumatic stress disorder (PTSD) are often present in individuals with complicated grief. Accelerated Resolution Therapy (ART) is a brief form of psychotherapy that utilizes the techniques of imaginal exposure, rescripting of events, and lateral eye movements that may be useful in complicated grief with PTSD symptoms. Two cases where ART was used for complicated grief with PTSD are presented. Both individuals had attempted to come to terms with their loss through traditional grief therapy with an inadequate response and substantial residual grief symptoms. These cases illustrate how ART can be used to address CG and PTSD and describe situations where it may be appropriate. Clinical and research implications are also discussed.


Subject(s)
Stress Disorders, Post-Traumatic , Aged , Grief , Humans , Stress Disorders, Post-Traumatic/psychology , Stress Disorders, Post-Traumatic/therapy
13.
J Natl Cancer Inst ; 114(3): 458-466, 2022 03 08.
Article in English | MEDLINE | ID: mdl-34508602

ABSTRACT

BACKGROUND: The symptom burden associated with cancer and its treatment can negatively affect patients' quality of life and survival. Symptom-focused collaborative care model (CCM) interventions can improve outcomes, but only if patients engage with them. We assessed the receptivity of severely symptomatic oncology patients to a remote nurse-led CCM intervention. METHODS: In a pragmatic, cluster-randomized, stepped-wedge trial conducted as part of the National Cancer Institute IMPACT Consortium (E2C2, NCT03892967), patients receiving cancer care were asked to rate their sleep disturbance, pain, anxiety, emotional distress, fatigue, and limitations in physical function. Patients reporting at least 1 severe symptom (≥7/10) were offered phone consultation with a nurse symptom care manager (RN SCM). Initially, patients had to "opt-in" to receive a call, but the protocol was later modified so they had to "opt-out" if they did not want a call. We assessed the impact of opt-in vs opt-out framing and patient characteristics on receptiveness to RN SCM calls. All statistical tests were 2-sided. RESULTS: Of the 1204 symptom assessments (from 864 patients) on which at least 1 severe symptom was documented, 469 (39.0%) indicated receptivity to an RN SCM phone call. The opt-out period (odds ratio [OR] = 1.61, 95% confidence interval [CI] = 1.12 to 2.32, P = .01), receiving care at a tertiary care center (OR = 3.59, 95% CI = 2.18 to 5.91, P < .001), and having severe pain (OR = 1.80, 95% CI = 1.24 to 2.62, P = .002) were associated with statistically significantly greater willingness to receive a call. CONCLUSIONS: Many severely symptomatic patients were not receptive to an RN SCM phone call. Better understanding of reasons for refusal and strategies for improving patient receptivity are needed.


Subject(s)
Neoplasms , Quality of Life , Anxiety , Humans , Neoplasms/complications , Neoplasms/psychology , Neoplasms/therapy , Nurse's Role , Palliative Care/methods
14.
J Palliat Med ; 25(1): 119-123, 2022 01.
Article in English | MEDLINE | ID: mdl-34551271

ABSTRACT

Objective: To examine the effect of Accelerated Resolution Therapy (ART) on the quality of life (QOL) of older adults with complicated grief (CG) over time. Design: Subanalysis of a randomized controlled trial. Setting/Subject: Older adult, former caregivers were recruited from a large hospice in the southeastern United States to be treated with ART for CG. Measurement: The CDC Health-Related Quality of Life (HRQOL) Healthy Days Module was administered pre-, post-, and eight weeks after therapy. Results: The subsample consisted of 27 older adults. A multilevel model indicated a statistically significant, negative difference of 8.21 (improvement) in QOL scores for each period of data collection (ß = -8.21, t = 4.02, p < 0.001). Both the intervention (11%, p = 0.013) and time (7.8%, growth curve p = 0.014) contributed significantly. Conclusion: There was a significant large effect of ART on CG. This study supports concurrent improved patient-related outcome-QOL.


Subject(s)
Grief , Quality of Life , Aged , Caregivers , Humans , Southeastern United States
15.
J Clin Nurs ; 31(3-4): 445-453, 2022 Feb.
Article in English | MEDLINE | ID: mdl-33991142

ABSTRACT

AIMS AND OBJECTIVES: The purpose of this paper is to describe a model to guide nursing science in a clinical practice-based setting. Exemplars are provided to highlight the application of this nursing research model, which can be applied to other clinical settings that aim to fill evidence gaps in the literature. BACKGROUND: Nurse scientists are well positioned to develop new knowledge aimed at identifying global health solutions to multiple disparities. The generation and application of this knowledge are essential to inform and guide professional nursing practice. While a number of evidence-based practice models exist to guide the integration of literature findings and other sources of evidence into practice, there is a need for additional models that serve as a guide and focus for the conduct of research in distinct scientific areas in practice-based settings. DESIGN: Model development and description. METHODS: Mayo Clinic is a large, comprehensive healthcare system with a mission to address unmet patient needs through practice, research and education. PhD-prepared nurse scientists engage in practice-based research as an integral component of Mayo Clinic's mission. A practice-based nursing research model was developed with the intent to advance nursing research in a clinical setting. RESULTS: The components of the Mayo Clinic Nursing Research model include symptom science, self-management science and caregiving science. The generation of nursing science is focused on addressing needs of patients with complex health conditions, inclusive of caregivers. CONCLUSIONS: While clinical settings provide rich opportunities for the conduct of research, priorities need to be established in which to focus scientific endeavours. The Mayo Clinic Nursing Research model may be applicable to nurses around the globe who are engaged in the generation of knowledge to guide practice. RELEVANCE TO CLINICAL PRACTICE: The Mayo Clinic Nursing Research model can be used by nurse scientists embedded in healthcare settings to address clinically relevant questions, advance the generation of new nursing knowledge and ultimately improve the health and well-being of patients and caregivers.


Subject(s)
Caregivers , Nursing Research , Delivery of Health Care , Educational Status , Evidence-Based Practice , Humans
16.
West J Nurs Res ; 44(2): 133-140, 2022 02.
Article in English | MEDLINE | ID: mdl-33514300

ABSTRACT

Little is known about the experience of family caregivers when their care partner dies and their dyadic relationship comes to an end. This study qualitatively examined and characterized the loss of the dyadic experience for the caregiver after the death of their care partner. Data was accrued as part of a randomized clinical trial in 29 older hospice caregivers. Iterative thematic analysis focused on dyadic processes before, during and post death. Using two relational parameters from Relational Turbulence Theory resulted in a preliminary characterization of a new concept-dyadic dissolution as a cognitive and affective process whereby a remaining member of a dyad experiences relational uncertainty and partner interference while adapting (or not) to the death of their care partner. Findings suggest that asking several open-ended questions about the dyadic relationship will enable assessment for any continuing impact of relational uncertainty and partner interference on bereaved caregivers.


Subject(s)
Caregivers , Hospice Care , Caregivers/psychology , Humans , Palliative Care
17.
Death Stud ; 46(6): 1424-1432, 2022.
Article in English | MEDLINE | ID: mdl-34818982

ABSTRACT

Approximately 15% of the general population has complicated grief (CG). Understanding how older adults with CG describe their quality of life (QOL) is crucial to healthcare workers especially in hospice and mental health settings. Four themes for QOL emerged from the thematic analysis of semi-structured interviews. From highest to lowest endorsement, they were Mental Function (sub-themes: mental health, joy, and happiness), Self-management (sub-themes: self-efficacy and self-agency), Social Support, and Physical Function. This study provides new information related to the relationships between CG and QOL among older adults. Multidimensional aspects of QOL can provide insight into delivering individualized patient- and family-centered care.


Subject(s)
Hospice Care , Quality of Life , Aged , Grief , Humans , Mental Health , Social Support
18.
Contemp Clin Trials Commun ; 24: 100868, 2021 Dec.
Article in English | MEDLINE | ID: mdl-34869939

ABSTRACT

Fidelity monitoring is the degree to which a clinical trial intervention is implemented as intended by a research protocol. Consistent implementation of research protocols supported with extant fidelity monitoring plans contribute rigor and validity of study results. Fidelity monitoring plans should be comprehensive yet practical to accommodate the realities of conducting research, particularly a pragmatic clinical trial, in dynamic settings with heterogeneous patient populations. The purposes of this paper are to describe the (1) iterative development and implementation of protocols for intervention fidelity monitoring, (2) pilot testing of the fidelity monitoring plan, (3) the identification of interventionist training deficiencies, and (4) opportunities to enhance protocol rigor for a cancer symptom management intervention delivered through the electronic health record patient portal and telephone as part of a complex, multi-component pragmatic clinical trial to uncover training deficits and bolster protocol integrity. The intervention focuses on prominent symptoms reported among medical oncology patients including sleep disturbance, pain, anxiety, depression, low energy (fatigue) and physical function. In this pragmatic trial, the role of interventionist is a registered nurse symptom care manager (RN SCM). A three-part fidelity monitoring plan with checklists audit: Part-1 RN SCM role training activities in research components, clinical training components, and protocol simulation training; Part-2 RN SCM adherence to the intervention core components delivered over the telephone; and Part-3 maintenance of adherence to core intervention components. The goal is ≥ 80% adherence to components of each of the three checklists. An initial pilot test of the fidelity monitoring plan was conducted to evaluate the checklists and the RN SCM adherence to core protocol components. RN SCM skills and training deficits were identified during the pilot phase, as were opportunities to improve protocol integrity. Overall, approximately 50% of the audited RN SCM telephone calls had ≥80% fidelity to the core components. There remains on-going need for RN SCM training and skill building in action planning. The content presented in this paper is intended to begin to fill the gap of fidelity monitoring plans for complex interventions tested in pragmatic clinical trials and delivered remotely in an effort to strengthen protocol integrity.

19.
Clin J Oncol Nurs ; 25(4): 413-421, 2021 Aug 01.
Article in English | MEDLINE | ID: mdl-34269343

ABSTRACT

BACKGROUND: A high prevalence of depression exists among individuals with cancer, which negatively affects their health outcomes, quality of life, and adherence to cancer treatment. OBJECTIVES: This article provides an overview and synthesis of depression screening, assessment, and nonpharmacologic treatments to help oncology nurses in their practices. METHODS: Key insights are presented from a synthesized literature review regarding patients with cancer with depression. Resources for patient treatment and nurse training are also provided. FINDINGS: To improve patient outcomes, nurses need to understand and follow a process that addresses the screening, assessment, and nonpharmacologic treatment of depression in patients with cancer.


Subject(s)
Neoplasms , Oncology Nursing , Depression/diagnosis , Humans , Mass Screening , Neoplasms/diagnosis , Quality of Life
20.
J Ambul Care Manage ; 44(2): 101-115, 2021.
Article in English | MEDLINE | ID: mdl-33492882

ABSTRACT

The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system. Between 20% and 25% of participants had difficulty obtaining health care information and/or felt overwhelmed with managing their condition. Coping, managing symptoms, and making treatment decisions were areas of need in both patients and caregivers. Preferences for receiving information were diverse. Existing methods of communication including secure Web sites where patients can access their medical records posed significant challenges.


Subject(s)
Adaptation, Psychological , Caregivers , Adult , Chronic Disease , Communication , Cross-Sectional Studies , Humans
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