Family Caregivers' Challenges in Cancer Pain Management for Patients Receiving Palliative Care.

CONTEXT: Family caregivers (FCs) of cancer patients play a crucial role in managing their care partner's pain, but little research has examined FCs' specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care. OBJECTIVES: To determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer. METHODS: We conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis. RESULTS: The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers' receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers' fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain. CONCLUSION: Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.

Family Caregiver Challenges in Pain Management for Patients with Advanced Illnesses: A Systematic Review.

Although pain management is integral to the caregiving role, there is a paucity of evidence synthesizing specific challenges family caregivers (FCs) face when managing pain for their care partners. This review comprehensively identified and summarized such challenges in the setting of advanced illnesses. Electronic databases (PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments) were searched using index and keyword methods for all articles published before April 2021. Fifty-five studies were included in this review. Most articles were published within the last 10 years (54%) in community settings, with home hospice care comprising the majority (50%). Most studies included patients with an advanced cancer diagnosis (84%), and 16% of the studies included patients with a noncancer diagnosis. Four major categories of challenges were identified: (1) caregiver-related issues (e.g., fears, beliefs, function), (2) caregivers' limited knowledge and skills in pain management (e.g., verbal and nonverbal pain assessment skills, pharmacological knowledge, documentation, safe management of medication), (3) communication challenges with health care providers, and (4) patient-related issues (e.g., inability to report pain). Many of these challenges have not been fully addressed in prior literature. Thus, this review provides a framework for needed future research to develop interventions that target FCs' specific challenges in providing pain management. The results also highlight a significant lack of research surrounding challenges faced by caregivers of care partners having a noncancer, dementia, or multimorbidity diagnosis.

The efficacy of web or mobile-based interventions to alleviate emotional symptoms in people with advanced cancer: a systematic review and meta-analysis.

PURPOSE: This review aims to critically evaluate the efficacy of web or mobile-based (WMB) interventions impacting emotional symptoms in patients with advanced cancer. METHOD: Articles published from 1991 to 2019 were identified using PubMed, PsycINFO, CINAHL, and Scopus. Only interventions involving adults with advanced cancer using a WMB intervention to manage emotional symptoms were included. Risk of bias was assessed using ROBINS-I and ROB2 tools. Studies that reported mean symptom scores were pooled using a random-effects model, and standardized mean difference (SMD) and 95% CIs were calculated. RESULTS: Twenty-three of the 1177 screened studies met the inclusion criteria, and a total sample of 2558 patients were included. The sample was 57% female, and 33% had advanced cancer with mean age of 57.15 years. Thirteen studies evaluated anxiety, nineteen evaluated depression, and eleven evaluated distress. Intervention components included general information, tracking, communication, multimedia choice, interactive online activities, tailoring/feedback, symptom management support content, and self-monitoring. Overall pooled results showed that WMB interventions' effects on decreasing anxiety (SMD - 0.20, - 0.45 to 0.05, I2 = 72%), depression (SMD - 0.10, - 0.30 to 0.11, I2 = 73%), and distress (SMD - 0.20, - 0.47 to 0.06, I2 = 60%) were not significant for randomized controlled trials (RCTs). In contrast, WMB interventions significantly decreased symptoms of anxiety (p = .002) in a sub-group analysis of non-RCTs. CONCLUSION: This meta-analysis demonstrated that WMB interventions were not efficacious in alleviating emotional symptoms in adults with advanced cancer. Considering the diversity of interventions, the efficacy of WMB interventions and its impacts on emotional symptoms should be further explored.

Web and mobile-based symptom management interventions for physical symptoms of people with advanced cancer: A systematic review and meta-analysis.

BACKGROUND: Symptom management is a critical aspect of comprehensive palliative care for people with advanced cancer. Web and mobile-based applications are promising e-Health modalities that can facilitate timely access to symptom management interventions for this population. AIM: To evaluate the efficacy of web and mobile-based symptom management interventions in alleviating physical symptom burden in people with advanced cancer. DESIGN: A systematic review and meta-analysis was conducted. PROSPERO ID = CRD42020155295. DATA SOURCES: We searched databases including PubMed, PsycINFO, and CINAHL from 1991 until 2019. Inclusion criteria were: adults with advanced cancer, web or mobile-based interventions targeting symptom management, and report of physical symptom data. Risk of bias was assessed using the ROBINS-I and RoB2. Using RevMan, standardized mean difference (SMD) and 95% confidence intervals were calculated. Heterogeneity was assessed using the I2 statistic. An assessment of interventions was conducted by evaluating the delivery mode, duration, and evaluation of application feature and theoretical elements. RESULTS: A total of 19 studies are included in the systematic review and 18 in the meta-analysis. Majority of the studies were deemed to have high risk of bias. Most of the interventions used a web-application for delivering their education (n = 17). While the interventions varied regarding duration and content, they were mainly guided by a symptom management theory. Web and mobile-based interventions significantly improved the overall physical symptom burden (SMD = -0.18; 95% CI = -0.28 to -0.09; I2 = 0%; p = 0.0002). CONCLUSIONS: Web and mobile-based intervention are efficacious in decreasing the overall physical symptom burden in people with advanced cancer.

Psychological Impacts and Ways of Coping Reported by Spousal Caregivers of Hematopoietic Cell Transplant Recipients: A Qualitative Analysis.

Allogeneic hematopoietic cell transplantation (HCT) is a demanding treatment with well-established medical and psychosocial sequelae. Impacts on significant others are tremendous. Using an unfiltered qualitative approach, we asked spouses (n = 15) of HCT recipients to talk about their thoughts and feelings regarding the transplantation and their role as caregiver. Recordings were transcribed and independently coded to identify recurrent patterns. Caregivers mentioned both negative and positive psychological impacts of HCT, but the number of negative impacts was greater: 164 versus 34 instances. The most frequently mentioned negative psychological impacts were anxiety/worry (30 instances), fear (20 instances), feeling overloaded/overwhelmed (19 instances), and uncertainty (17 instances). Other emergent categories were roles/responsibilities (49 instances) such as parenting, work, and treatment-related tasks, and coping strategies (55 instances). The latter included both adaptive and maladaptive strategies (75% and 25%, respectively). Despite the preponderance of negatively toned thoughts and feelings, signs of adjustment emerged, with mentions of positive psychological states, such as optimism and gratitude, and adaptive coping strategies, such as active coping, use of emotional support, and self-care. Interventions intended to facilitate adaptation to the HCT experience should involve strategies to help caregivers manage symptoms of distress and promote adaptive coping.

Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits.

CONTEXT: Family caregivers (FCGs) of hospice cancer patients face significant challenges related to pain management. Addressing many of these challenges requires effective communication between FCGs and hospice nurses, yet little empirical evidence exists on the nature of communication about pain management between hospice nurses and FCGs. OBJECTIVES: We identified ways in which FCGs of hospice cancer patients communicated their pain management challenges to nurses during home visits and explored nurses' responses when pain management concerns were raised. METHODS: Using secondary data from audio recordings of hospice nurses' home visits, a deductive content analysis was conducted. We coded caregivers' pain management challenges and immediate nurses' responses to these challenges. RESULTS: From 63 hospice nurse visits, 101 statements describing caregivers' pain management challenges were identified. Thirty percent of these statements pertained to communication and teamwork issues. Twenty-seven percent concerned caregivers' medication skills and knowledge. In 52% of the cases, nurses responded to caregivers' pain management challenges with a validating statement. They provided information in 42% of the cases. Nurses did not address 14% of the statements made by caregivers reflecting pain management challenges. CONCLUSION: To optimize hospice patients' comfort and reduce caregivers' anxiety and burden related to pain management, hospice nurses need to assess and address caregivers' pain management challenges during home visits. Communication and educational tools designed to reduce caregivers' barriers to pain management would likely improve clinical practice and both patient- and caregiver-related outcomes.

Pain Management Concerns From the Hospice Family Caregivers' Perspective.

BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. DESIGN: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers' interviews from a randomized clinical trial. SETTING/PARTICIPANTS: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. RESULTS: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver's medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. CONCLUSION: The study provided an investigation on hospice family caregivers' difficulties in pain management. The results can inform health-care providers and researchers of family caregivers' challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.

Being Fully Present: Gains Patients Attribute to a Telephone-Delivered Parenting Program for Child-Rearing Mothers With Cancer.

BACKGROUND: Oncology nurses can assist patients in gaining skills and confidence in multiple areas of illness self-management, including parenting skills. Child-rearing parents with cancer are a unique population because they must self-manage their illness and also help their child manage the intrusion of cancer on everyday life. The telephone offers an inexpensive channel for nurses to assist mothers in developing competencies to parent their child. The acceptability and attributed gains from such telephone services are unknown. OBJECTIVE: The aims of this study were to (1) describe the gains child-rearing mothers attribute to participation in a nurse-delivered telephone cancer parenting program and (2) assess mothers' evaluation of the telephone as a channel for delivering the program. METHODS: Study participants were child-rearing mothers diagnosed with cancer (N = 31) who had completed a manualized telephone-delivered cancer parenting program by a nurse. Mothers were interviewed 1 month after exiting the program by a specially trained interviewer masked on the content of the program. RESULTS: Most mothers were white (74%), highly educated, and had breast cancer (93.5%). Mothers attributed gains from the program in 3 areas: (1) being fully present for my child, (2) communicating in new ways, and (3) putting away my assumptions. CONCLUSIONS: Communication skills learned from nurses can assist mothers to self-manage the impact of the cancer on their own well-being and add to their parenting skills and competencies to help their children. IMPLICATIONS FOR PRACTICE: The telephone is an effective and indeed preferred channel for delivering services to child-rearing parents impacted by cancer.

Family Caregivers' Pain Management in End-of-Life Care: A Systematic Review.

CONTEXT: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. OBJECTIVES: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. METHODS: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. RESULTS: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control; family caregivers' knowledge, skills, and self-efficacy in pain management; and family caregivers' concerns and experience of pain management. CONCLUSION: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low; it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples.

The Enhancing Connections-Telephone study: a pilot feasibility test of a cancer parenting program.

PURPOSE: The purposes of the study were to (1) test the short-term impact of a telephone-delivered cancer parenting education program, the Enhancing Connections-Telephone (EC-T) Program, on maternal anxiety, depressed mood, parenting competencies, and child behavioral-emotional adjustment and (2) compare those outcomes with outcomes achieved from an in-person delivery of the same program (EC). METHODS: Thirty-two mothers comprised the sample for the within-group design and 77 mothers for the between-group design. Mothers were eligible if they had one or more dependent children and were recently diagnosed with stages 0-III breast cancer. Mothers in both groups received five intervention sessions at 2-week intervals from a patient educator using a fully scripted intervention manual. RESULTS: Outcomes from the within-group analysis revealed significant improvements on maternal anxiety, parenting competencies, and the child's behavioral-emotional functioning. Outcomes from the between-group analysis showed the EC-T did as well or better than EC in positively affecting maternal anxiety, depressed mood, parenting competencies, and the child's behavioral-emotional adjustment. Furthermore, the EC-T had a significantly greater impact than the EC on maternal confidence in helping their family and themselves manage the cancer's impact and in staying calm during emotionally charged conversations about the breast cancer with their child. CONCLUSIONS: Regardless of the channel of delivery, the Enhancing Connections Program has the potential to positively affect parenting competencies and behavioral-emotional adjustment in mothers and dependent children in the first year of stages 0-III maternal breast cancer. Its positive impact from telephone delivery holds promise for sustainability.