Perceptions of families with adolescents utilizing augmentative and alternative communication technology: A qualitative approach.

PURPOSE: Although family involvement is critical to successful augmentative and alternative communication (AAC) device utilization, little is known about how families adapt to technology. The aim of this qualitative study was to explore parent-reported factors contributing to family adaptation among families with adolescents diagnosed with autism and/or Down syndrome (DS) utilizing AAC technology. This study describes families' experiences related to several interacting variables of the Resiliency Model, including demand, type, appraisal, resources, and problem-solving/coping, that helped shape the outcome of adaptation to AAC technology. Nurses are well-positioned in a variety of practice settings to assess vulnerable families and assist with identifying resources and navigating complex service systems. DESIGN AND METHODS: Semi-structured interviews were conducted with eight parents of adolescents with autism and/or DS (aged 13-18) recruited through online research registries, support organizations, and a social networking site. Recorded interviews were transcribed, and two independent reviewers coded and analyzed the data. Comparisons across all families' thematic summaries were examined for patterns. RESULTS: Five themes described aspects of family adaptation: Contextual Strains and Influences, Continuum of Person-First Approach, Opening Doors, Facilitators of Support, and Planning Is Key. CONCLUSIONS: Findings highlighted the challenges and demands associated with raising an adolescent using an AAC device, as well as the attributes, resources, perceptions, and strategies that either contributed or hindered family adaptation. PRACTICE IMPLICATIONS: AAC technology is readily available for adolescents with developmental disabilities. It is essential that nurses assess key adaptation components to support families in integrating and using the technology.

Family caregivers of those with cancer: quality of life outcomes from a sequential multiple assignment randomized trial.

PURPOSE: To conduct a secondary analysis focused on health-related quality of life (HRQOL) among caregivers engaged in a 12-week complementary therapy sequential multiple assignment randomized trial (SMART) of reflexology and/or meditative practices (MP), to manage cancer patients' symptoms. METHODS: In this SMART, patient-caregiver dyads were initially randomized to 4 weeks of caregiver-delivered reflexology for the patient (N = 150), MP with the patient (N = 150), or control (N = 47). After 4 weeks, dyads with patients not improving on fatigue (non-responders, n = 69 to reflexology and n = 57 to MP) were re-randomized to continue the same therapy or add the other therapy for an additional 4 weeks. Week-12 caregiver HRQOL was measured using the Patient Reported Outcomes Measurement Information System (PROMIS) Profile-29 and the Caregiver Reaction Assessment Tool (CRAT) for caregiver burden; scores were analyzed using general linear models. RESULTS: In the comparison of 4 adaptive intervention sequences: reflexology for 8 weeks, reflexology for 4 weeks followed by MP for 4 weeks if no response to reflexology, MP for 8 weeks, and MP for 4 weeks followed by reflexology for 4 weeks if no response to MP, there were no differences in PROMIS-29 scores. However, CRAT domains of impact on schedule, family support, and finances worsened when adding reflexology after the first 4 weeks of MP. The CRAT domain of health worsened by adding either intervention compared to continuing the same one. CONCLUSIONS: Clinicians should be aware that caregiver engagement in more than one complementary therapy may increase caregiver burden in some domains but not affect other HRQOL domains. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02759146.

Reflexology and meditative practices for symptom management among people with cancer: Results from a sequential multiple assignment randomized trial.

Optimal sequencing of complementary therapies can help improve symptom management through nonpharmacological approaches. A 12-week sequential multiple assignment randomized trial comparing home-based reflexology and meditative practices on severity of fatigue and other symptoms was conducted among patients with cancer and their informal caregivers. Dyads were initially randomized to reflexology (N = 150), meditative practices (N = 150), or control (N = 47). If patient's fatigue did not improve (nonresponse) after 4 weeks of reflexology or meditative practices, the dyad was rerandomized to either add the other therapy or continue with the original therapy for weeks 5-8. Four decision rules (DRs) were compared: (1) Initiating reflexology, and if nonresponse on fatigue after 4 weeks, continue with reflexology for another 4 weeks, thus providing a higher dose; (2) Initiating reflexology, and if nonresponse on fatigue after 4 weeks, add meditative practices for the next 4 weeks; (3) Initiating meditative practices, and if nonresponse on fatigue after 4 weeks, continue meditative practices for another 4 weeks, thus providing a higher dose; and (4) Initiating meditative practices, and if nonresponse on fatigue after 4 weeks, add reflexology for the next 4 weeks. Symptoms were evaluated weekly using the M.D. Anderson Symptom Inventory (MDASI). Clinically, nurses can recommend either therapy since no differences were found among the 4 DRs, with the exception of lower severity for summed MDASI symptoms at week 8 for the use of reflexology only (DR-1) versus DR-2 (sequencing reflexology to meditative practices). Adding the other therapy for nonresponders after 4 weeks may not be warranted.

Symptom response analysis of a randomized controlled trial of reflexology for symptom management among women with advanced breast cancer.

PURPOSE: To examine symptom responses resulting from a home-based reflexology intervention delivered by a friend/family caregivers to women with advanced breast cancer undergoing chemotherapy, targeted, and/or hormonal therapy. METHODS: Patient-caregiver dyads (N = 256) were randomized to 4 weekly reflexology sessions or attention control. Caregivers in the intervention group were trained by a reflexology practitioner in a 30-min protocol. During the 4 weeks, both groups completed telephone symptom assessments using the M. D. Anderson Symptom Inventory. Those who completed at least one weekly call were included in this secondary analysis (N = 209). Each symptom was categorized as mild, moderate, or severe using established interference-based cut-points. Symptom response meant an improvement by at least one category or remaining mild. Symptom responses were treated as multiple events within patients and analyzed using generalized estimating equations technique. RESULTS: Reflexology was more successful than attention control in producing responses for pain (OR = 1.84, 95% CI (1.05, 3.23), p = 0.03), with no significant differences for other symptoms. In the reflexology group, greater probability of response across all symptoms was associated with lower number of comorbid condition and lower depressive symptomatology at baseline. Compared to odds of responses on pain (chosen as a referent symptom), greater odds of symptom response were found for disturbed sleep and difficulty remembering with older aged participants. CONCLUSIONS: Home-based caregiver-delivered reflexology was helpful in decreasing patient-reported pain. Age, comorbid conditions, and depression are potentially important tailoring factors for future research and can be used to identify patients who may benefit from reflexology. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01582971.

Symptoms among emerging adults with inflammatory bowel disease: a descriptive study.

Individuals with inflammatory bowel disease (IBD) are commonly diagnosed when they are between the ages of 18-29, a developmental period known as emerging adulthood. Typically, emerging adults are subsumed into the category of adults even though emerging adults have unique developmental needs. In this descriptive study of IBD in emerging adults, the aims were to (a) determine the prevalence of symptoms; (b) describe the severity of symptoms and their interference with daily activities; and (c) examine the association between individual symptom severity and presence of fatigue. Emerging adults with IBD were recruited using web-based convenience sampling. Sixty-one individuals met the inclusion criteria. They had a mean age of 24.7 and a disease duration of 6.4 years. The most prevalent symptoms reported were: fatigue (n = 44, 72.1%), abdominal cramps (n = 39, 63.9%), abdominal pain (n = 39, 63.9%), and diarrhea (n = 38, 62.3%). The symptom with the greatest severity and interference with daily activities was fatigue. Abdominal cramps, abdominal pain, diarrhea, passing gas, and abdominal tenderness were associated with fatigue when controlling for age, emerging adulthood, gender, time since diagnosis, and current steroid use. Among emerging adults with IBD, fatigue is the most prevalent symptom and is the symptom with the greatest severity and interference with daily activities. These results suggest a need for interventions aimed at reducing both fatigue and gastrointestinal symptoms among emerging adults with IBD.

Factors Influencing Received Social Support Among Emerging Adults With Inflammatory Bowel Disease: A Cross-Sectional Study.

The majority of research among individuals with inflammatory bowel disease (IBD) focuses on perceived social support. A gap exists regarding the role of received social support in self-management enhancement. The purpose of this study was to examine specific contextual factors (individual, condition-specific, and emerging adulthood factors) that influence received social support (total, informational, emotional, and tangible) among emerging adults (ages 18-29 years) with IBD. A convenience sample of 61 emerging adults with a diagnosis of IBD was obtained. An association was found between high total received social support and several individual factors such as being closer to the younger end of the age range (ages 18-29 years), married, and fully employed. When controlling for time since diagnosis and symptom interference, high tangible received social support was associated with the use of immunomodulator and biological medications. Emerging adulthood factors were not associated with total or any types of received social support. Future research could examine differences between types of social support and self-management behaviors. These findings contribute a new direction for intervention development with a focus on individual and condition-specific factors to enhance received social support and ultimately health outcomes for individuals with IBD.

Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application.

Families with children who have developmental disabilities and complex communication needs (CCNs) face challenging demands affecting family adaptation. Many children with CCNs use augmentative and alternative communication (AAC) devices to support communication, yet little is known about family adaptation to such technology. To fill this gap, an integrative review, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation was conducted to assess conceptual foundations and the state of the science of family adaptation among children utilizing AAC. Web-based searches were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis and the Mixed Methods Appraisal Tool. Thirty-three studies met eligibility. Findings demonstrated that to enhance the science underpinning family adaptation to AAC use, future research should be grounded conceptually and address important components of the Resiliency Model. Work in this emerging area will identify and facilitate nursing efforts to assist families as they adapt to communication technology.

Healthcare service utilization and work-related productivity in reflexology intervention for advanced breast cancer women.

PURPOSE: This project's purpose was to determine the effects of a home-based reflexology intervention on symptom-related use of health services and work-related productivity during the 11-week study. METHODS: A total of 256 patients were randomized to four weekly reflexology sessions (each lasting 30 min, delivered by lay caregivers who received two training sessions by a professional reflexologist) or attention control. The Conventional Health Service and Productivity Costs Form was used to collect information on health service utilization and out-of-pocket expenditure of symptom management. The Health and Work Performance Questionnaire was used to measure workplace performance for patients during the study period. We used weighted and unweighted logistic and linear regression analyses. RESULTS: Patients in the reflexology group were less likely to have hospital visits compared to the control group in the weighted unadjusted (odds ratio [OR] = 0.49; 95% confidence interval [CI] = [0.25, 0.97]), unweighted adjusted (OR = 0.35; 95% CI = [0.16, 0.75]), and weighted adjusted (OR = 0.30, 95% CI = [0.13, 0.66]) logistic regressions. Compared to attention control, patients in the reflexology group had lower relative absenteeism in the unweighted adjusted (- 0.32; 95% CI = [- 0.60, - 0.03]) linear regressions and less absolute presenteeism (15.42, 95% CI = [0.87, 29.98]) in the weighted unadjusted analysis. CONCLUSION: The reflexology intervention delivered by lay caregivers reduced hospital visits and increased workplace productivity in a short-term period, which has potential for cost saving for health care systems and employers. TRIAL REGISTRATION: NCT01582971.

Self-Management Through Social Support Among Emerging Adults With Inflammatory Bowel Disease.

BACKGROUND: Emerging adulthood is a unique developmental stage, which may affect individuals' self-management behaviors, social support, and the relationship between these two constructs. Among older adults, social support has been shown to improve self-management behaviors for individuals with chronic conditions; however, this relationship has not been examined with emerging adults (age 18-29 years) who have inflammatory bowel disease (IBD). OBJECTIVES: The aim of the study was to examine the relationship between two conceptualizations of social support (received and perceived availability of social support) and IBD-related self-management behaviors among emerging adults with IBD. METHODS: A convenience sample of emerging adult IBD individuals (currently prescribed medication to manage IBD) were recruited through ResearchMatch, Facebook, and word of mouth. The study was guided by key elements of the individual and family self-management theory. Participants responded to demographic and condition-specific questionnaires: the Inventory of Dimensions of Emerging Adulthood, the Inventory of Socially Supportive Behaviors, the Medical Outcomes: Social Support Survey, the Medication Adherence Report Scale, and the Dietary Screener Questionnaire. RESULTS: Emerging adults with high received informational support reported greater medication adherence compared to those with low received informational support when controlling for biological medications, time since diagnosis, symptom frequency, and feeling in-between adolescence and adulthood. Neither type of social support was associated with diet modification. DISCUSSION: Received informational social support, medication type, time since diagnosis, symptoms, and emerging adulthood factors have the potential to influence medication adherence. Received informational social support interventions, such as patient-to-patient or group-based mentoring, may serve to improve medication adherence among emerging adults with IBD.

Systematic Review of Social Support on Psychological Symptoms and Self-Management Behaviors Among Adults With Inflammatory Bowel Disease.

PURPOSE: The purpose was to determine the relationship between social support, psychological symptoms and self-management behaviors among adults with inflammatory bowel disease (IBD) and examine the influence of types of social support and patient age. DESIGN: This was a systematic review. PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Communication and Mass Media Complete, and Communication Abstracts were searched. Publication dates were limited to January 2000 to August 2018. METHODS: The systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement, and quality was appraised based on the Critical Appraisal Skills Programme for cohort studies tool. The data were synthesized using narrative synthesis techniques. FINDINGS: The literature review yielded 458 results. Eight articles met inclusion criteria. Articles utilized a variety of conceptualizations of both social support and self-management behaviors, making comparisons difficult. Findings demonstrated an inverse relationship between social support and psychological symptoms, and in one study only when social support buffered high stress. Studies with significant relationships between age and self-management behaviors indicated that a lower age was associated with decreased self-management behaviors. CONCLUSIONS: Social support has the potential to influence psychological symptoms among patients with IBD. Future research should examine types of social support (i.e., emotional, informational, and tangible support) and measure levels of received social support. CLINICAL RELEVANCE: Social support may serve as a modifiable factor to improve psychological symptoms among adults with IBD. Younger adults (age <40 years) may benefit from specialized interventions to address self-management behaviors.

Spiritual Perspectives on Pain in Advanced Breast Cancer: A Scoping Review.

OBJECTIVES: The aim of the present review was to characterize how pain and spirituality have been conceptualized, assessed, and addressed and how these concepts may be related among women with advanced breast cancer. DESIGN: A scoping review was conducted including publications of various methodologies. DATA SOURCES: Searches were conducted in PubMed, CINAHL, PsycINFO, Cochrane Library, OpenGrey, OAIster, and a large university library database (published 2006-2018). REVIEW/ANALYSIS METHODS: Research questions and criteria were formulated at the outset, followed by identification of publications, charting data, and collating results. RESULTS: Forty-two publications met the inclusion criteria. Most (n = 33) focused exclusively on pain, five pain and spirituality, and four exclusively spirituality. Conceptual definitions were not explicitly provided but were implied. Most assessments used the 0-10 Numeric Rating Scale (pain) and qualitative methods (spirituality). Pain management primarily focused on radiotherapy and pharmaceuticals, and two publications identified spiritual interventions. No publications directly examined the impact of spirituality on pain. Findings of qualitative studies including both concepts suggest the potential value of spirituality as a mechanism to cope with pain. CONCLUSIONS: This review identified significant unmanaged pain in women with advanced breast cancer. Women identified dimensions of spirituality as important for coping with their disease. A gap in understanding spirituality and its potential influence on pain in this population was identified.

PROMIS and legacy measures compared in a supportive care intervention for breast cancer patients and caregivers: Experience from a randomized trial.

OBJECTIVE: Accurate and efficient measurement of patient-reported outcomes is key in cancer symptom management trials. The newer Patient Reported Outcomes Measurement Information System (PROMIS) and previously developed measures of similar conceptual content (legacy) are available to measure symptoms and functioning. This report compares the performance of two sets of measures, PROMIS and legacy, in a recently completed trial of a supportive care intervention that enrolled breast cancer patients and their friend or family caregivers. METHODS: Patient-caregiver dyads (N = 256) were randomized to either reflexology delivered by caregivers or usual care control. Post-intervention, PROMIS and legacy measures of symptoms and functioning were analyzed in relation to trial arm, while adjusting for baseline values. Responsiveness of the two sets of measures was assessed using effect sizes and P-values for the effect of trial arm on patients' and caregivers' symptom and functioning outcomes. RESULTS: Similar conclusions about intervention effects were found using PROMIS and legacy measures for pain, fatigue, sleep, anxiety, physical, and social functioning. Different conclusions were obtained for patient and caregiver depression: legacy measures indicated the efficacy of reflexology, while PROMIS depression measure did not. CONCLUSION: Evidence of similar responsiveness supports the use of either set of measures for symptoms and functioning in clinical and general populations. Differences between PROMIS and legacy measures of depression need to be considered when choosing instruments for use in trials of supportive care interventions and in clinical practice.

Using cognitive interviewing to improve questionnaires: An exemplar study focusing on individual and condition-specific factors.

Questionnaires are a standard component of quantitative research, but seldom do researchers consider the importance of item clarity and participant comprehension. This is particularly true among the often overlooked individual and condition-specific items which characterize the patient and disease process. Cognitive interviewing is one approach to assess item clarity and identify how participants understand and respond to questions. The purpose of this paper is to describe the process of cognitive interviewing used to identify questions that are unclear or challenging to answer for a unique population, emerging adults (age 18-29) with inflammatory bowel disease (IBD). Through cognitive interviewing four areas were identified as needing improvement among individual and condition-specific items: 1) clarity - describing terms and adding details to item directions; 2) cognitive recall burden - rewording questions to avoid the need for mental math, 3) timeframe - adding phrases like 'in the past 2 weeks,' and 4) question relevance - including items on disease remission. Analysis of these four areas may guide other researchers working with IBD patients to obtain high quality data, as well as stimulate questionnaire adaption using cognitive interviewing with other populations. Cognitive interviewing can be useful when drafting a new questionnaire or when adapting an established questionnaire; in either case, it can enhance item clarity and participant comprehension.

Fidelity scorecard: evaluation of a caregiver-delivered symptom management intervention.

AIM: To evaluate and quantify the intervention fidelity of a symptom management protocol through implementation of a scorecard, using an exemplar study of caregiver-delivered reflexology for people with breast cancer. BACKGROUND: Studies on caregiver-delivered symptom management interventions seldom include adequate information on protocol fidelity, contributing to potentially suboptimal provision of the therapeutic intervention, hindering reproducibility and generalizability of the results. DESIGN: Fidelity assessment of a 4-week intervention protocol in a randomized controlled trial (RCT) with data collection between 2012 - 2016. METHODS: The National Institutes of Health Behaviour Change Consortium (NIH-BCC) conceptual model for intervention fidelity guided the study. The five NIH-BCC fidelity elements are: (1) dose; (2) provider training; (3) intervention delivery; (4) intervention receipt; and (5) enactment. To illustrate the elements, an intervention protocol was deconstructed and each element quantified using a newly developed fidelity scorecard. RESULTS: Mean scores and frequency distributions were derived for the scorecard elements. For dose, the mean number of sessions was 4·4, 96% used the correct intervention duration and 29% had 4 weeks with at least one session. Provider training was achieved at 80% of the maximum score, intervention delivery was 96%, intervention receipt was 99% and enactment indicated moderate adoption at 3·8 sessions per patient. The sample mean score was 15·4 out of 16, indicating the high overall fidelity. CONCLUSION: Research findings that include description of how fidelity is both addressed and evaluated are necessary for clinical translation. Clinicians can confidently recommend symptom management strategies to patients and caregivers when fidelity standards are explicitly reported and measured.

Using SMART design to improve symptom management among cancer patients: A study protocol.

In this in-progress sequential multiple assignment randomized trial (SMART), dyads of solid tumor cancer patients and their caregivers are initially randomized to 4 weeks of reflexology or meditative (mindfulness) practices provided by/with their caregiver in the patient's home or to a control group. After 4 weeks, intervention group dyads in which patients do not show improvement in fatigue (non-responders) are re-randomized to either receive additional time with the same therapy during weeks 5-8 or to add the other therapy. The aims are (1) to compare reflexology and meditative practices groups during weeks 1-4 on patients' fatigue severity, summed symptom inventory score, depressive symptoms, and anxiety, so as to determine the relative effectiveness of these therapies and the characteristics of responders and non-responders to each therapy. (2) Among reflexology non-responders based on fatigue score at week 4, to determine patient symptom outcomes when meditative practices are added during weeks 5-8, versus continuing with reflexology alone. (3) Among meditative practices non-responders based on fatigue score at week 4, to determine patient symptom outcomes when reflexology is added during weeks 5-8, versus continuing with meditative practices alone. (4) To compare improvements in patient symptom outcomes among the three groups created by the first randomization. (5) To explore which dyadic characteristics are associated with optimal patient symptom outcomes, to determine tailoring variables for decision rules of future interventions. The trial has a target of 331 dyads post-attrition and has 150 dyads enrolled. We are overcoming challenges with dyadic recruitment and retention while maintaining fidelity.

Xerostomia health-related quality of life: NRG oncology RTOG 0537.

PURPOSE: The purpose of this secondary analysis was to determine change in overall health-related quality of life (HRQOL) based on patient data obtained from NRG Oncology RTOG 0537 as measured by the RTOG-modified University of Washington Head and Neck Symptom Score (RM-UWHNSS). METHODS: A multi-site prospective randomized clinical trial design stratified 137 patients with post-radiation therapy xerostomia according to prior pilocarpine (PC) treatment and time after radiation therapy and/or chemotherapy and randomized patients into two groups. Patients were assigned to acupuncture or PC. Twenty-four sessions of acupuncture-like transcutaneous electrical nerve stimulation (ALTENS) were administered over 12 weeks, or oral PC (5 mg) three times daily over the same 12 weeks. The RM-UWHNSS was administered at baseline and at 4, 6, 9, and 15 months after the date of randomization. RESULTS: There were no between-arm differences in change scores on the RM-UWHNSS in the individual items, total score, or factor scores. For statistical modeling, race and time were significant for all outcomes (total and factor scores), while treatment arm was not significant. The ALTENS arm showed greater yet nonsignificant improvement in outcomes compared to the PC arm. CONCLUSION: Although no significant treatment differences were seen in this trial, patients receiving ALTENS consistently had lower scores, indicating better function, as compared to those receiving PC. Radiation-induced xerostomia improved over time for all patients.

Dyadic recruitment in complementary therapy studies: experience from a clinical trial of caregiver-delivered reflexology.

PURPOSE: As home-based care continues to be a growing trend in health care, involvement of friend and family caregivers in the management of illness becomes essential. However, before nurses can prepare caregivers to engage in various types of care, an evidence base needs to be established via randomized controlled trials (RCTs). Research suggests that recruiting cancer patients and their friend or family caregivers into RCTs presents challenges. The purpose of this paper is to illustrate the barriers to recruitment of patient-caregiver dyads into a RCT of caregiver-delivered reflexology and to recommend strategies to address such barriers. METHODS: This paper reports on a nurse-directed RCT that involved recruitment efforts unique to a caregiver-delivered reflexology protocol for advanced-stage breast cancer patients. Ineligibility due to caregiver-related reasons, consent among eligible patients (out of 551 approached patients), and reasons for refusal were analyzed. RESULTS: Almost one-third of patients were found to be ineligible due to the lack of a caregiver to participate with them and provide this form of social support. Among eligible patients, the consent rate for this dyadic study is much lower than that of previous RCTs of reflexologist-delivered reflexology that enrolled just patients, not dyads. CONCLUSION: Implications for nursing practice and research include addressing the need for greater social support for patients and strategies for problem-solving refusal reasons during study enrollment.

Chemotherapy interruptions in relation to symptom severity in advanced breast cancer.

PURPOSE: Interruptions in medical treatment such as dose delays, reductions, or stoppages can lead to suboptimal treatment of cancer. Knowing how and for whom symptom severity and symptom interference with activities of daily living (ADL) are associated with treatment interruptions can guide behavioral interventions for supportive care. The purpose of this analysis is to inform research and clinical practice by bringing attention to specific patient symptoms that may hinder dose completion. METHODS: A secondary analysis of data collected in a randomized clinical trial (RCT) of reflexology for symptom management was performed. The trial enrolled women with advanced breast cancer undergoing treatment (N = 385). Outcome data were collected at baseline, weeks 5 and 11 using valid and reliable measures. Medical records provided data on treatment interruptions and metastasis. The association between alterations in medical treatment during the study period with symptom severity, symptom interference with ADLs, and metastatic status were tested using generalized estimating equation (GEE) models. RESULTS: The relationship between dose delays and dose reductions and symptom severity was differential according to metastatic status, with the higher strength of association among women with distant metastasis compared to those with loco-regional disease (p = 0.02). The interaction of symptom interference and metastatic status was also significantly related to dose delays and reductions (p = 0.04). Severity of pain was a stronger predictor of dose delays or reductions among patients with distant metastasis compared to those with loco-regional disease (p < 0.01). CONCLUSION: The analysis highlights the importance of understanding symptom outcomes that impact research, practice, and treatment decisions.

Self-administered Acupressure for Persistent Cancer-related Fatigue: Fidelity Considerations.

CONTEXT: Complementary therapies are frequently used by breast cancer patients for symptom management; however, documentation of the components of intervention fidelity for studies is not widely available. OBJECTIVE: This report examines the components of intervention fidelity, as put forth by the Treatment Fidelity Workgroup of the Behavior Change Consortium at the National Institutes for Health (NIH-BCC Workgroup), within an ongoing acupressure study of breast cancer survivors with persistent cancer-related fatigue (PCRF). DESIGN: For the acupressure study, the research team designed a randomized, controlled trial (RCT) with 3 parallel groups: (1) stimulating acupressure (intervention group); (2) relaxing acupressure (intervention group); and (3) standard care (control group). SETTING: At baseline and at wk 3 and wk 6 of the study, women in the acupressure study attended sessions for training and data collection at clinics in the counties of Michigan where they lived. The self-administration of acupressure occurred in participants' homes. PARTICIPANTS: Targeted enrollment for the acupressure study is 300 breast cancer survivors who had experienced moderate-to-severe PCRF lasting longer than 1 y beyond treatment. The women are being recruited from 5 counties in Michigan, using the Michigan Tumor Registry to identify potential participants. The subsample report includes 183 participants who have completed all 10 wk of the acupressure study. Most participants in the acupressure study are Caucasian, are married, and have some college education. INTERVENTION: The acupressure study's educators teach participants in the intervention groups to self-administer either relaxing or stimulating acupressure for a 30-min period on a daily basis for 6 wk. All 3 groups receive the usual care for breast cancer survivors. OUTCOME MEASURES: For the acupressure study, the participants log the frequency of the self-administered acupressure sessions and their fatigue levels. Symptom assessments are made for all groups by telephone in the acupressure study at wk 2 through wk 5 to assess fatigue. A competency checklist is used at each session of training and retraining of both acupressure educators and participants. For this report, the 5 recommended fidelity components for interventions are (1) dose, (2) training, (3) intervention delivery, (4) intervention receipt, and (5) enactment of the intervention. RESULTS: The ongoing RCT incorporated all 5 components of fidelity and can serve as a model for future work in this area. CONCLUSIONS: Research protocols that address intervention fidelity can provide results that support internal and external validity. Clinicians should consider recommending complementary interventions that have incorporated fidelity components into their efficacy testing.

Palliative and End-of-Life Family Caregiving in Rural Areas: A Scoping Review of Social Determinants of Health and Emotional Well-Being.

Introduction: Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. Objective: To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. Methods: A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. Findings: In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. Conclusions: FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.