Interventions to Support Family Caregivers in Pain Management: A Systematic Review

Abstract

Context:

Family caregivers encounter many challenges when managing pain for their loved ones. There is a lack of clear recommendations on how to prepare caregivers in pain management.

Objective:

To evaluate existing interventions that support family caregivers in providing pain management to patients with all disease types.

Methods:

Four electronic databases were systematically searched (PubMed, CINAHL, PsycINFO, and Scopus) using index and keyword methods for articles published before December 2019. The Mixed Methods Appraisal Tool was used to assess the quality.

Results:

The search identified 6851 studies, and 25 studies met the inclusion criteria. Only two studies exclusively focused on non-cancer populations (8%). Three types of interventions were identified in this review: (1) educational interventions, (2) cognitive-behavioral interventions, and (3) technology-based interventions. Both educational and cognitive-behavioral interventions improved family caregiver and patient outcomes but the content and intensity of these interventions in these studies varied widely, and there was a limited number of randomized clinical trials (68%). Hence, it is unclear what strategies are most effective to prepare family caregivers in pain management. Technology-based interventions were feasible to support family caregivers in providing pain management.

Conclusion:

Providing adequate pain management training can improve patient and family caregiver outcomes. However, the most effective interventions for family caregivers are still unclear. More rigorous and replicable clinical trials are needed to examine the effects of educational interventions, cognitive-behavioral interventions, and technology-based interventions. Also, more studies are needed in patients with a non-cancer diagnosis or multimorbidity.

Introduction

An estimated 20 % of U.S. adults have chronic pain.¹ More than 50% of patients with advanced cancer, dementia, and heart diseases have pain.² In 2015, approximately 43 million family caregivers provided unpaid care to a family member, and 60% of them assisted with medical and nursing tasks at home, including pain and symptom management.³ Family caregivers, which include spouses, relatives, or friends of a patient, are tasked with managing pain at home, but pain management is a demanding and multi-variable task that involves managing medications and treatments, monitoring side effects, keeping track of pain severity and treatments, and communicating with the care team. Family caregivers encounter numerous challenges when managing pain, which leads to low adherence to prescribed pain management regimens.^4,5 Inadequate pain control of individuals with life-limiting illnesses can increase avoidable visits to hospitals^6,7 and cause further stress and burden on family caregivers.^8,9 There is an increasing recognition of family caregivers’ role in managing patients’ pain; however, there is a lack of clear methods and recommendations on how to prepare family caregivers for managing patients’ pain at home.¹⁰

Two literature reviews synthesized the challenges that family caregivers face in managing pain and the evidence of pain management interventions for caregivers.^10,11 An early review was conducted by Meeker and colleagues (2011), in which studies published between 1991 and 2007 were reviewed to understand family caregivers’ experience in managing pain for patients with cancer and effective interventions to support them.¹¹ The study concluded that family caregivers struggled with knowledge deficits, fears and misbeliefs, and ineffective communication with care teams. Family caregivers need to be educated on pain management, training in problem-solving skills, and recognition from healthcare providers about their role in pain management.¹¹ Latter et al. (2016) conducted a review to appraise the interventions that help family caregivers in managing cancer pain medications.¹⁰ The results found that face-to-face educational interventions could improve family caregivers’ knowledge and self-efficacy in managing pain medications.¹⁰ While these two reviews synthesized important findings for family caregivers’ struggle in pain management and interventions that could support them, they were limited in scope and mainly focused on cancer pain management and issues with medications. Meeker et al. (2011) focused primarily on interventions that help with family caregivers in managing pain for patients with cancer,¹¹ and the Latter review focused on interventions that support family caregivers in management of pain medications for patients with advanced cancer.¹⁰

These two prior reviews did not include patients with a non-cancer diagnosis or studies that proposed non-pharmacological interventions. An increasing number of studies have emerged that focus on training family caregivers in pain coping skills, training caregivers on non-pharmacological therapies to relieve pain, and using technology-enhanced interventions to support caregivers in pain management. Hence, the purpose of this review was to present an updated and comprehensive review of interventions that support family caregivers in providing pain management to patients with all disease diagnoses.

Methods

A systematic review was conducted to evaluate existing interventions designed to support family caregivers in managing pain for patients. Search strategies were developed with the assistance of a health sciences librarian with expertise in constructing search terms for systematic reviews at Hardin Library for the Health Sciences, the University of Iowa. Searches were developed by the first author and the librarian using an iterative process of gathering and evaluating terms. Comprehensive strategies, including both index and keyword methods, were finalized in December 29, 2019. The following electronic databases were searched: PubMed, CINAHL (Cumulative Index for Nursing Allied Health Literature, EBSCO platform), PsycINFO (APA platform), Cochrane CENTRAL (Wiley platform), and Scopus (Elsevier platform). The English language filter was used, as translation of studies was not an option. Other pre-set database filters were not used to maximize sensitivity. The PubMed search strategy, as detailed in Appendix 1, was adapted for use with the other electronic databases.

All available studies published before December 2019 were searched, with no date restrictions. The inclusion criteria are (1) study design: feasibility studies, pilot studies, evaluation studies, experimental studies, and quasi-experimental studies, (2) study focus: a study that tests an intervention, program, or training that supports family caregivers of adult patients or patient-caregiver dyads in pain management, and (3) setting: across all types of settings. The exclusion criteria were (1) language: articles not written in English, (2) study design: descriptive studies that do not test an intervention, (3) article type: dissertations, non-peer-reviewed studies, conference abstracts, editorials, and reviews, and (4) population: a study describes an intervention that focus on pediatric populations. Studies were screened and selected based on study designs and article types, not research methods.

The search and review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) review guidelines.¹² The initial search yielded 6851 articles, of which 2493 duplicates were removed. A total of 4358 articles were imported into Rayyan, a web-based systematic review application, and two authors screened the abstracts of the 4358 articles by applying the inclusion and exclusion criteria (NC, YF). Discrepancies of decisions were resolved through discussions until a consensus was reached. After screening the titles and the abstracts, an additional 4295 articles were removed, 63 full-text articles were reviewed by two authors to assess their eligibility (NC, YF). The agreement rate of the full-text review between two authors was 82%, and the differences were resolved through repeated discussions to reach consensus. A total of 25 studies met the inclusion criteria and were included into this review (Figure1).

Figure1.

Study Review and Inclusion PRISMA Flow Diagram

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(6): e1000097. doi:10.1371/journal.pmed1000097

For more information, visit www.prisma-statement.org.

Results

Twenty-five studies were included in this review. Detailed information from each article was summarized, including title, authors, published year, country, study design, settings, patient diagnosis, sample, sample size, intervention, data collection, and outcomes (Appendix 2. Characteristics of Included Studies). The first, second, and fourth authors extracted the information from articles, and the first author verified the accuracy of the information for each article. A meta-analysis was not appropriate due to the heterogeneity in types of interventions, outcome measures, and timing of data collection among the included studies.

Characteristics of Studies (Table 1)

Table 1.

A Summary of Key Characteristics of Included Studies

	Number of Studies (%)
Publication year
Before 2000	2(8%)
2000-2010	9 (36%)
2011-2018	14 (56%)
Country
United States of America (USA)	19 (76%)
United Kingdom (UK)	3 (12%)
Taiwan	1(4%)
India	1(4%)
Norway	1(4%)
Study design
Randomized controlled trials (RCT)	17 (68%)
Feasibility	7 (28%)
Quasi-experimental	1 (4%)
Sample size
<100 participants	7 (28%)
100-200 participants	9 (36%)
>200 participants	9 (36%)
Study setting (some studies were conducted in more than one type of settings)
Community-based settings (e.g., hospice care, and home care)	15(60%)
Outpatient clinics (e.g., palliative clinics, oncology clinics, and HIV clinics)	10(40%)
Inpatient settings	3 (12%)
Sample type
Included both patients and caregivers	22 (88%)
Patient Diagnosis
Cancer	17 (68%)
Non-cancer (e.g., dementia, heart disease, and HIV/AIDS)	6 (24%)
Patient mean age*
>50 years	18 (72%)
Caregiver race*
White	13 (52%)
Caregiver gender*
Female	19 (76%)
Attrition rates
>20%	13 (52%)
<20%	3 (18%)
Intervention type
Educational interventions	17 (68%)
Cognitive-behavioral interventions	4 (16%)
Technology-based interventions	4 (16%)

^*Studies counted towards this had a majority of this characteristic in their sample

Countries and published years.

Nineteen studies were conducted in the U.S. (76%). Nine studies were published between 2000 and 2010 (36%), and 14 studies were published between 2011 and 2018 (56%).

Study designs.

Seventeen studies were randomized controlled trials (RCT) (68%), seven were feasibility studies (28%), and one was quasi-experimental design (4%).

Settings.

Most studies were conducted in community-based settings. Some recruited participants from more than one type of settings, so the total number is greater than 100%. Eight studies were conducted in home hospice care setting (32%),^13–20 seven in home care settings (28%),^15,21–26 six in oncology clinics (24%),^5,27–31 three in palliative clinic (18%),^{24, 32, 33} one in an HIV clinic (4%),³² and three in inpatient settings (12%).^28,34,35

Characteristics of family caregivers and patients.

Not all studies provided detailed family caregiver and patient basic demographic data. Eleven studies focused on populations in hospice and palliative care settings (44%). One study exclusively focused on dementia caregivers,³⁶ and another focused on caregivers and patients with HIV/AIDS.³² In 17 studies (68%), most caregivers took care of patients with cancer. Among those 17 studies, 13 studies exclusively focused on cancer populations (52%) and five focused on advanced/metastatic cancer (20%).^{13, 26, 30, 31, 33}

The patients’ mean age was greater than 50 years old in 18 studies (72%). Twenty-two studies included both patients and their family caregivers (88%). In most of the studies, family caregivers were females (in 19 studies; 76%), white (in 13 studies; 52%), patients’ spouses (in 14 studies; 56%), and their mean age was greater than 50 years old (in 15 studies; 60%).

Only some studies reported detailed patients and caregivers’ demographic data such as levels of education, employment status, marital status, income, and religion. Only twenty percent of the studies reported information about patients’ types or conditions of pain ^{13, 18, 20, 32, 36} and 28% reported pain treatments received.^{5, 15, 18, 21, 22, 27, 35}

Sample sizes.

Sample sizes ranged from 9 to 862. Most studies (72%) had a sample size larger than 100 participants: nine studies had a sample size between 100 to 200 participants, one had more than 200 participants, five had more than 300 participants and three had more than 500 participants.

Attrition rates.

Sixteen studies mentioned attrition rates. Seven studies (28%) had an attrition rate higher than 30%, six studies (24%) higher than 20%, and three studies (18%) lower than 20%.

Intervention fidelity.

Eight studies (32%) addressed how to monitor intervention fidelity.^{13, 18, 26, 28, 31, 33, 34, 36} However, only two studies provided data of intervention session fidelity; one was 82%¹³ and another was 95%.¹⁸

Types of Interventions

Twenty-two studies recruited both patients and their family caregivers into the studies, and three studies involved patients, family caregivers, and nurses or other professionals from the care team.^{20, 25, 26} Three major types of interventions emerged from this review: educational interventions, cognitive-behavioral interventions, and technology-based interventions to engage family caregivers in pain management (Table 2). Each study fell into only one of these categories.

Table 2.

Comparison of Interventions across Studies

Type: Educational Interventions
Structured Pain Management Education
Lead Author, Year, County	Intervention: format, resources provided to CGs, FUP	Intervention Duration & Intensity	Intervention Content	Provider, Recipients, Site of Delivery	Major Outcomes
Ferrell/1993/United States	Pts & CGs received 3 face-to-face pain education visits during which content of education booklet & written instructions for non-drug interventions were presented & discussed. CGs were instructed & coached in their role in supporting the Pt in pharmacologic PM & participating nondrug PM. Pt & CG provided copy of instructions and 10-page booklet with illustrations, along with 2 audiocassette tapes recorded during first 2 education sessions to reinforce instruction. FUP: 2 face-to-face sessions to evaluate impact of education program	Time points of 3 education visits: NR Duration of 3 education visits and FUP at 1 week & 4 weeks post instruction: NR	3-part PM educational program: (1) Pain education: overview, assessment, basic principles of pain relief; (2) Pharmacologic PM: principles of drug addiction & tolerance, pain prevention through routine scheduling, treatment of associated symptoms; and (3) Nondrug PM: written instructions for 19 interventions across 5 areas techniques including heat, cold, massage, relaxation/distraction, and guided imagery. Instruction sheets contained information regarding the method, why it is helpful for pain, directions for use, and any precautions.	Intervention delivered by a nurse to Pt & CG together in the home environment.	Pts: • Decreased pain intensity & perception of pain intensity • Decreased anxiety • Decreased fear of addiction • Increased use of pain meds • Improved sleep • Increased pain knowledge CGs: • Improved knowledge • Reduced fear of addiction & respiratory depression • Giving adequate dose of meds • Giving pain meds around the clock rather than PRN
Ferrell/1995/United States	Pts & CGs received 3 face-to-face instructional sessions surrounding pain education. The same nurse conducted each of the 3 sessions for all participants & had 10 years of experience in oncology & 2 years of experience in cancer PM. CGs were instructed & coached in playing an active role in all drug & nondrug interventions. Teaching materials included a written Pt-education booklet & instructions for nondrug techniques. 2 audiocassette tapes were also recorded during first 2 education sessions & left with Pt & CG to reinforce instruction. FUP: 2 face-to-face sessions to evaluate impact of program	Each teaching session lasted approximately 1 hour Time points of 3 education visits: NR FUP at 1 & 3 weeks after last session: duration: NR	3-part pain-related instruction program: (1) Pain education: overview, assessment, & need to relieve pain to promote overall comfort & QOL; (2) Pharmacological PM: principles of drug addiction & tolerance, prevention of pain through routine scheduling, & treatment of associated symptoms; and (3) Nondrug PM: information on nondrug interventions as useful adjuncts to meds & encouraged combination of drug & nondrug interventions. Written instructions for 19 interventions covering 5 nondrug techniques including heat, cold, massage, relaxation/ distraction, and imagery.	The same nurse provided each of the 3 instructions to Pt & CG in the home environment.	• At 1-week post intervention, improvement in psychological & social well-being subscales & total QoL score • CGs showed more positive scores in the domain of physical well-being, such as feelings of usefulness, strength, & appetite • Pts showed more positive results in the emotional aspects of worry and a sense of control • Family Pain Questionnaire: Pts showed more positive responses than CGs on 5 of 14 items
Wells/2003/Unit ed States	Pts with cancer-related pain and their primary CGs received a brief pain education program, and then were randomized into 1 of 3 groups: pain education alone; pain education with access to a pain hot line; or pain education followed by weekly provider-initiated FUP calls for 1-month post-education (opioid prescriptions or adjustment of meds were not made during calls). Pt & CG given written informational materials to take home FUP: pretest–posttest used to assess initial effects program followed by repeated measures to determine the long-term effects of education and follow-up information on pain intensity, interference with daily life, adequacy of analgesics used, & pain relief.	Education program: 20-30 minutes; video: 15 minutes Provider-initiated weekly calls: 5-15 minutes FUP: monthly telephone calls to 6 months	Pain education program included structure & tailored components. • Structured: Video (“Taking Charge of Your Pain,” Purdue Frederick) included information about pain, methods to control pain, emphasized the importance of communicating pain to providers, & discussed low risk of addiction to opioids used to control cancer pain along with meds available to manage side effects. Information in video presented by experts (physician & nurse) & Pts. • Tailored: individualized consultation regarding video, written information about analgesics & side effects management, & discussion of Pt’s present pain regimen. Materials written at 8th grade level.	HCPs provided the pain education program in a comprehensive cancer center & a cancer clinic located in a Veterans’ Administration Medical Center to Pts & CGs; FUP calls were made by an oncology nurse specialist	From baseline to post-intervention: • Improvement in Pt beliefs about communication of pain with providers • Improvement in CG beliefs, primarily analgesics • At baseline, CG beliefs were higher than Pt communication or use of analgesic scores, indicating CGs reported more barriers to adequate PM than Pts
Lin/2006/Taiwan	Face-to-face session at which content of booklet presented & discussed. Questions elicited & answered. Participants encouraged to call if additional questions arose. Pt & CG provided copy of booklet to take home. FUP: 2 face-to-face sessions, information reiterated & questions answered	Initial session 30-40 minutes provided simultaneously to Pt & CG FUP interviews at 2 & 4 weeks after initial session	Information addressed 9 major concerns contributing to reluctance to report pain and use of analgesics: fatalism, addiction, desire to be good, fear of distracting physicians, disease progression, tolerance, side effects, religious fatalism, & PRN meds.	Intervention delivered by a researcher to Pt & CG together in a private room in the hospital outpatient clinic.	• Reduction in Pt & CG barriers to analgesics use at weeks 2 & 4 • Improved Pts’ adherence to scheduled analgesic regimen at week 2 & 4 • Lower levels of worst pain intensity & pain interference at week 4
Ward/2009/United States	Pts & SOs were randomized into 1 of 3 arms in which Pts received the education intervention in 1 session either alone (solo arm), with their SO (dyad arm), or received care-as-usual (control arm) No resources or materials provided to Pts/SOs as part of intervention FUP: 2 FUP telephone calls for evaluation & revision of coping plans	Intervention duration: 9 weeks Education session: 20-80 minutes FUP telephone calls at 2 & 4 weeks after initial session: 5-10 minutes	Key elements of intervention, Representational Intervention to Decrease Cancer Pain (RIDcancerPAIN+), delivered during education session: (1) participant(s) asked to describe their beliefs about Pt’s cancer pain in terms of cause, timeline, consequences, cure, & control while interviewer listened for mention of barriers to PM, such as fear of addiction or concerns about side effects; (2) gaps, confusions, & misconceptions about reporting pain & using analgesics were identified & discussed; (3) discussion of limitations/losses that result from such misconceptions; (4) information provided to fill gaps & replace confusions that were identified, including specific evidence-based educational messages prepared for common attitudinal barriers; (5) summary & discussion of benefits of adopting new information provided; (6) participant(s) created a plan for changing the way they managed pain	Intervention delivered by 5 nurses & 2 psychologists to Pts alone or to Pt/SO dyads, usually in the home environment *Interventionist training included a 3-day PM program, a 2-day workshop focusing on the theoretical underpinnings of the study, listening to tapes of completed intervention sessions, & role playing using the intervention manual	• Compared with control group, both dyad & solo groups showed greater decreases in barriers scores at Week 9 • Compared with solo group, higher changes in pain relief at Week 5 among Pts in dyad group • Dyad groups that dropped out prior to completing Week 5 measures included Pts with significantly higher pain relief scores at baseline compared to those who stayed in the study • Compared with control group, Pts in both dyad & solo groups reported higher scores for every study participation evaluation item • Compared with SOs in control group, SOs in dyad group reported higher scores on evaluation items concerning the way they think about cancer pain as well as PM
Capewell/2010/United Kingdom	3 face-to-face sessions with Pts & CGs involving a 6-minute DVD & booklet. Understanding checked & questions answered. Pt & CG provided copy of DVD & booklet to take home. FUP: content reviewed & feedback elicited at Visit 2; only outcomes recorded at Visit 3	Duration of initial session and FUP at 2 & 4 weeks: NR	DVD included interviews with multidisciplinary PC staff. Content focused on aspects of cancer pain & use of strong opioids, such as pain assessment, communication, PM, & fears surrounding opioid use. The booklet reinforced information given in DVD & provided space for notes as well as references for further reading.	In an outpatient clinic setting, a researcher conducted interviews with Pts & CGs and was present when participants watched DVD.	Improved PPQ & BPI scores between baseline & week 1 *Differences in PPQ scores largely due to improvements in scores on knowledge subscale *Differences in BPI scores largely due to improvements in items relating to pain interference
Hendrix/2011/United States	When hospital discharge was imminent, Pts & CGs received training on strategies for managing Pts’ cancer symptoms. Prior to training, Pt’s chart were reviewed to tailor training to ongoing concerns. Each training area began with an assessment of the dyad’s knowledge & needs so that discussion & teaching were individualized. CG training followed a structured topical outline with standard activities for each teaching area; discussions were interactive and CGs were given the opportunity to ask questions. Program was manualized, including a book for CGs with “how to” pictures FUP assessments conducted immediately after training (CGs) and Weeks 1, 2, & 4 after hospital discharge (CGs & Pts)	Number of training sessions: 1-2 Total training time: 2-3 hours Duration of data collection: NR	Training focused on the following training areas: (1) Prevention of infection: assessment of caregiver’s knowledge; prevention of infection; discussion of signs and symptoms of infection; central line care and dressing change, Foley catheter care, wound care, as applicable; (2) Pain control: pain assessment; guidelines to pain medication; nonpharmacologic interventions; (3) Maintenance of adequate nutrition: assessment of the patien’s problem with nutrition; guidelines for maintaining or increasing caloric intake; oral care; tube feeding if applicable; (4) Maintenance of adequate elimination: assessment of patien’s problem with bowel elimination; discussion of strategies that alleviate or prevent constipation or diarrhea; (5) Home care issues: assessment of home care issues that caregiver perceives to be stressful and in need of assistance	Nurses delivered training at the bedside to Pts & CGs in an in-patient hospital cancer unit	Significant: • Increased CG self-efficacy in home care & symptom management after receiving training in the treatment group; sustained at Week 4 Additional findings: • No intervention effect was seen on CG’s psychological well-being (depression, anxiety, & QoL) & Pt’s physical symptoms
Valeberg/2013/Norway	This study was carried out as part of a larger RCT that evaluated the efficacy of the Norwegian version of the PRO-SELF Pain Control Program compared with a control group to increase CGs’ knowledge of cancer PM. Intervention consisted of nursing coaching, home visits, & phone calls. Control group: Pts & CGs given a booklet about cancer PM developed by an oncologist FUP: home visits & telephone interviews	Intervention duration: 6 weeks Home visits: weeks 3, & 6 Telephone interviews: weeks 2, 4 & 5 Duration of home visits & telephone interviews: NR	Educational content focused on symptom-specific self-care strategies for reducing side effects associated with cancer treatment (nausea, vomiting, mucositis, infection, as well as recording, evaluation, & management of pain). Week 1 visit: academic detailing session that addressed identified knowledge deficits based on Pt & CG responses to items on FPQ; Weeks 2, 4 & 5: pain intensity scores & pain med intake reviewed via phone, educational content of PRO-SELF Program reinforced, Pt/CG coached on how to modify PM plan or contact physicians to improve pain outcomes; Weeks 3 & 6 visits: educational material reinforced & additional PM coaching.	Intervention was provided to CGs by specially trained oncology nurses in the home environment & via telephone	• Higher KPS scores at time of enrollment among Pts in control group • Higher mean baseline score among CGs in intervention group for individual item “cancer pain can be relieved” on FPQ • Among CGs in intervention group, higher knowledge scores on all of the single items on the FPQ except for item "cancer pain can be relieved" as well as total FPQ score
Chellappan/2014/India	CGs of cancer patients were trained on the administration of drugs for acute symptoms. Individualized teaching based on symptoms & drug regimen recommended by PC physician. Resources included acute symptom management kit, structured teaching guide, Pt record to note medications & their appropriate dosages to be given for symptoms, & pamphlet on management of acute symptoms in cancer Pts. FUP: interviews to assess usage of kit, drugs used, routes of administration, & CGs’ views about structured teaching program	CGs were interviewed at the next patient contact either in the outpatient clinic or at home On average, the time between the first and second contacts was 2 weeks Duration of interviews: NR	Symptom management kit was color-coded and had partitions for drugs specific to symptom (color coding was helpful for CGs who were illiterate). Specific details regarding content of teaching guide & pamphlet was provided. Framework: King’s Open System Framework	Nurses trained CGs in home environment or in PC clinic based in the Radiation Oncology Division of a teaching hospital in India	• Symptoms reported: pain, 80%; restlessness, 73.3%; nausea & vomiting, 66.7%; dyspnea, 50%; cough, 20% • 96.7% of CGs used a kit • Common meds used: morphine, metoclopramide, dexamethasone, & benzodiazepines • Symptoms for which kit was used: pain, 16; nausea/vomiting, 15; dyspnea, 6; restlessness, 1; cough, 0 • Hospital visits for acute symptoms reduced by 80% • 90% of CGs were satisfied with the training 73% of CGs stated it was not a burden to treat Pt at home
Cagle/2015/United States	In-person staff training in delivery of intervention followed by Pt/CG screening & education using the Effective Management of Pain: Overcoming Worries to Enable Relief (EMPOWER) brochure. FUP: ongoing staff training & Pt/CG education	CGs were interviewed at 2 weeks after admission and, if Pt was still alive, again at 3 months. Duration of staff training, CG interviews, and Pt/CG screening & education: NR	The EMPOWER Program Intervention included 4 components: (1) Staff training: barriers to PM, addressing Pt & CG fears & misconceptions, EMPOWER screening instructions, Pt-CG medication management & adherence, case examples, written material outlining intervention components; (2) The EMPOWER Screen: hospice nurses asked 8 yes/no questions to identify concerns related to pain & PM, including addiction, side effects, stoicism, stigma, being a bother, tolerance, fear of overdose, & fatalism; (3) Tailored education: EMPOWER brochure included evidence-based statements and was given to Pt/CG if any of 8 barriers screened positive. Staff reviewed content and read bullet points pertaining to identified barrier(s), which were based on evidence-based information and designed to enhance communication between Pts, CGs, & providers; and (4) FUP: documentation & interdisciplinary discussion of CG & Pt concerns; team training to re-review brochure during future visits. The program was developed based on a cognitive behavioral framework.	Hospice staff conducted screening & provided education to CGs & Pts in the home environment.	2 weeks after admission: • Lower Pts’ pain over the past week • CGs: Better knowledge about PM • CGs: fewer concerns about pain & pain meds 3 months after admission • CGs: Better knowledge about PM • CG: lower score of fatalism in the barrier scale
Nkhoma/2015/United Kingdom	Pts & CGs received an intervention comprised of: (1) face-to-face education session; (2) Informational leaflet provided & discussed during session, participants encouraged to ask questions; and (3) FUP at 2 weeks via telephone call and/or clinic visit to inquire if any further questions	Face-to-face education session: 30 minutes Week 2 FUP call: <5 minutes Duration of Week 2 FUP visits: NR	Content of Leaflet, “All About Your Pain,” & discussion covered definition, causes, & characteristics of pain in HIV/AIDS; beliefs & myths about pain & pain meds; pain assessment & classification using pain scales; & pharm-/non-pharmacological PM. Leaflet was printed in color & included simplified text along with illustrations & diagrams	Intervention was delivered by 1 nurse specializing in PC to Pts & CGs at HIV & PC clinics within 2 public hospitals in northern Malawi (sub-Saharan Africa)	• Greater decrease in pain severity • Less pain interference • Greater CG motivation to provide care • Greater improvement in knowledge (Pts & CGs) • Better QoL (Pts & CGs)
Hodge/2016/United States	A cancer symptom management toolkit developed specifically for the American Indian culture was delivered via traditional talking circles vs. standard of care (control). All participants received a written study overview prior to consent. FUP: reassessment of predictors of cancer PM, patient-provider communication, symptom knowledge, decision making, & barriers to care for cancer-related symptoms at 6 months	Pre-intervention questionnaire : 60 minutes Post-intervention questionnaire: 40 minutes Frequency, duration, and number of talking circles attended by participants: NR	Toolkit included: (1) cancer symptom management educational booklet: sections addressing cancer etiology, Dx, Tx, & FUP; cancer symptoms (pain, depression, fatigue, & functionality) & their management with illustrations; strategies & tips for pain relief, body changes, & changes in activity levels; recommendations on how to better communicate with providers, family members, & others; (2) resource guide: information for specific cancers, where to obtain information for cancer-related services (e.g. treatments, support groups) (3) self-management video, which highlighted American Indian cancer survivors who discussed cancer facts & myths, coping with cancer, what to expect after Dx & Tx, support systems, & strategies & tips for pain relief, fatigue, depression, & loss of functionality.	Intervention was delivered to Native American Pts, survivors, & CGs at 8 reservation & urban clinic sites in Arizona; information regarding who facilitated talking circles not provided	• Pts & CGs in intervention group showed significant improvement in the desire & ability to manage cancer-related pain • Pts & CGs who reported having a close relationship (one in which they could confide with another & receive support) were significantly more likely to improve their PM compared with those who did not have such support • Survivors were nearly 3 times more likely than CGs to show improvement in PM skills
Kunik/2017/United States	Pts & their CGs received the intervention, Preventing Aggression in Veterans with Dementia (PAVeD), which focused on decreasing incidence of aggressive behavior in Pts with dementia at increased risk of behavioral disturbance due to pain. Intervention targeted areas of Pt life known to cause aggression: pain & distress, including mood problems; lack of engagement in pleasurable activities; & difficulties in Pt/CG communication. CGs received a workbook and the National Institute on Aging booklet, Understanding Memory Loss, & a self-help book, Pain Management for Older Adults FUP: data collection at Months 3, 6, 9, & 12 and, within 2 weeks of end of intervention, CG exit interview & client satisfaction questionnaire	Intervention duration: 8 weeks • Number of sessions: 6-8 weekly "core" sessions & 2 elective sessions • Duration of each session: 45 minutes • Mean number of sessions: 5.89 • Reported average days/week practicing skills: 3.26 • Duration of data collection: NR	Core sessions included instruction to CGs on: Recognizing Pain; Enhancing Communication; & Making Daily Activities Pleasant & Enjoyable. First session included collaborative goal-setting in which Pt & CG chose an additional 2 of 4 elective sessions: Medical Treatments & Talking to Your Doctor; Rest & Relaxation Strategies; Communication Problems & Challenges; & Increasing Pleasant Activities. Intervention included didactics, skill-building, discussion, & role-playing guided by a clinician manual & CG workbook.	Intervention was delivered to Pts & CGs in the home by masters-level clinicians	Significant: • At baseline, CGs in the intervention group reported significantly greater Pt overall pain than those in usual care group • Better mutuality among PAVeD group compared with control group Additional findings: • No significant differences in aggression incidence between intervention & control groups • Program components found most useful to CGs: skills related to recognizing nonverbal and behavioral signs of pain & responding to pain through sue of medications or other strategies covered in the pain modules; communication skills; and learning specific relaxation techniques or ways to engage in activities.
Latter/2018/United Kingdom	Phase I: an intervention (Cancer Carers Medicines Management [CCMM]) was developed for CGs of Pts with advanced cancer designed to improve pain med management Phase II: intervention was implemented to test feasibility. Nurses received 1-day training on CCMM, including preparation for & rehearsal of intervention, were randomized & identified potential Pt/CG dyads for participation. Nurses delivered CCMM then addressed questions & reinforced intervention during subsequent visits. CG toolkit materials included charts for documenting pain & meds, important local contact numbers, & information for organizations providing additional information & support. Nurses were provided with a conversational process script, access to an online video demonstration, prompt card, & structured reflective record to document use of CCMM components. FUP: Pt & CG data collection Weeks 1 & 4; semi-structured interviews with CG & nurse.	Phase II (feasibility study): • Duration of intervention delivery, time to complete evaluations & interviews: NR	The CCMM intervention involved a 6-component nurse-delivered structured conversational process & toolkit that included resources to meet individual CG needs for information & support as identified through the conversational process. The intervention addressed CGs’ beliefs, knowledge & skills & promoted self-evaluation of competence. Expert input from Pts, CGs & HCPs provided information on CGs’ needs for support with managing meds. Interview guides focused on key med management issues & intervention components.	Intervention delivered to CGs by nurses in the home environment.	• CCMM made clinical sense to nurses, who recognized the challenges faced by CGs managing analgesia at the EoL • CCMM compared favorably with current practice as it offered a more systematic approach to supporting CG PM; toolkit resources (e.g. information about opioids & charts for documenting pain & meds) seemed to have immediate practical value to CGs • Nurses suggested introducing CCMM earlier in Pt’s illness & expanding it to include life-limiting conditions other than cancer to increase applicability & compatibility with PC practice • Positive changes in CG med management included increased acceptance of the need for opiates, knowledge being reinforced or enhanced & behavioral change, such as responding more quickly to Pt’s request for pain relief & improved systems for giving & recording meds
Non-pharmacological Education
Lead Author, Year, County	Intervention: format, resources provided to CGs, FUP	Intervention Duration & Intensity	Intervention Content	Provider, Recipients, Site of Delivery	Major Outcomes
Faurot/2007/United States	A licensed massage therapist formally trained staff in hand & foot massage, who then subsequently taught CGs of Pts how to deliver hand and/or foot massage in response to reports of pain & anxiety. CGs were instructed to solicit feedback from Pt regarding comfort, & instructed Pt to take slow, deep breaths during massage session. CGs were provided with an instructional video & written guide covering massage techniques for use in the hospital and at home following Pt discharge Data collection included daily medication use & pain ratings & pre-post intervention evaluations	• Staff training: three 2-hour sessions, with periodic refresher sessions • CG/Pt massage sessions: 5-20 minutes 1-4 times/day, spaced at least 2 hours apart, • Staff time for training CGs: 45 minutes Duration of data collection: NR	Massage therapy protocol used a didactic & hands-on approaches & included instructional materials for staff & CGs: (1) videotape, 20 minutes in length, with a licensed massage therapist demonstrating steps of hand & foot massage; (2) teaching guides for staff designed to facilitate interaction with CGs in teaching massage techniques; (3) guides for CGs given as a mnemonic aid for reviewing massage techniques	CGs received training by staff (nurses, nursing assistants, & physical therapists) in an inpatient rehabilitation unit within an academic medical center in North Carolina	The authors reported that challenges fell into 3 broad categories: (1) subject recruitment: lack of Pts who met eligibility criteria, changes in reimbursement policies & subsequent lack of coverage for inpatient care, lack of CG availability; staff recruitment & engagement: competing priorities, lack of clinical coverage while participating in training, lack of encouragement from nursing & medical directors, physician nonengagement, little incentive for participation, increasing census & acuity, staff turnover, staff failure to teach CG prior to Pt discharge data collection
Collinge/2013/United States/	A multimedia instructional program for family CGs in simple touch-based techniques was implemented to provide comfort to cancer Pts at home. Pt-CG dyads attended orientation meeting where they viewed DVD and were given packet with program materials; no direct instruction or practice took place at meeting. Dyads were instructed to view DVD & manual as often as they wished, & practice techniques of their choice at least 3 times per week (suggested duration 20 minutes); CGs in control arm instructed to read to their Pts for same frequency (reading materials of Pt’s choice). DVD & instruction manual materials were provided based on primary language of dyads (English, Spanish, or Chinese) FUP: weekly data collection & bi-weekly phone calls for reporting of adverse event	• Duration of DVD: 78-minutes • Times viewed DVD weekly: 1.35 • Times viewed manual weekly: 1.64 • Number of massages weekly: 3.6 • Duration each massage (minutes): 17.8 Duration of data collection & phone calls for adverse events: NR	Multilingual DVD & 66-page manual for homebased instruction including content addressing attitudes & communication about touch in cancer, psychological preparation for giving & receiving touch, safety precautions, massage techniques for comfort & relaxation, acupressure for specific cancer-related symptoms, & practice in the home setting. Two 6-hour workshops filmed to obtain video footage for instructional DVD; led by a clinical social worker & 2 oncology massage practitioners & included 11 Pt/CG dyads representing different races & relationships.	Dyads viewed DVD during orientation & received 1 home visit by oncology massage therapist at the beginning of intervention to observe for proper implementation of safety precautions,	• Reductions in all symptoms for Pts in both arms (greater in intervention arm than control) • Greater average proportion of decreased symptomatology reported from pre- to post-sessions over 4 weeks in intervention group for pain, nausea, and other self-reported symptoms • When comparing session effects across time, reduced symptom ratings in the intervention group for stress/anxiety (Weeks 2, 3, 4), pain (Weeks 3 & 4), and fatigue (Weeks 1 & 4) Among CGs in intervention group, increased confidence, comfort, & self-efficacy using touch & massage as forms of caregiving
Wyatt/2017/United States	CGs received 2 weekly in-person training sessions in a reflexology protocol involving return demonstration, observation, & coaching. CGs then delivered 1 or more sessions/week independently. Printed materials & contact number provided to Pt & CG for ongoing support. FUP: telephone calls for weekly symptom assessment & reminders at Weeks 3 & 4	Reflexology protocol consisted of a 30-minute session. Duration of in-person visits at Weeks 1 & 2, symptom assessments & follow up support provided via telephone: NR	The protocol included 9 reflexes on the foot & required a thumb-walking pressure over each reflex, with a duration of 15 minutes per foot, totaling a 30-minute session. Illustrated directions & a contact number were left with the Pt & CG to support independent sessions during Weeks 3 & 4.	Training sessions delivered by a study reflexologist to CGs in the home environment.	• Decreased symptom severity & interference over 11 weeks (reductions in symptom severity began at week 2, continued at weeks 3-5, then reduced at week 11) • Differences in summed indices for fatigue & pain, indicating these 2 symptoms were most responsive to the intervention
Type 2: Cognitive-behavioral Interventions
Lead Author, Year, County	Intervention: format, resources provided to CGs, FUP	Intervention Duration & Intensity	Intervention Content	Provider, Recipients, Site of Delivery	Major Outcomes
Keefe/2005/United States	Pts & CGs were randomized into 1 of 2 groups: partner-guided PM training or usual care (control). Intervention involved 3 face-to-face sessions that integrated education information about cancer pain with systematic training of Pts & CGs in cognitive & behavioral pain coping skills. Sessions were supplemented with written materials, a videotape & accompanying book, & relaxation tape. Post-intervention evaluation conducted by phone	Intervention duration: sessions were structured to last for 45-60 minutes & to be delivered over approximately 1-2 weeks; each session lasted 20-90 minutes (average length 56.2 minutes) & the average number of days from first to last session was 13.8 (range 8-32 days) Post-intervention evaluation: 0-31 days following completion of intervention (mean 7.56 days) Duration of pre-post intervention evaluations: NR	An intervention manual was developed and used for each session to ensure consistency. Session 1: overview of training program/materials & questions answered. Session 2: Instruction in relaxation training & how to use pleasant imagery for PM. Session 3: Introduction to use of an activity-pacing method (activity-rest cycling) to reduce pain & enable Pts to pace their activity level.	Four nurse educators knowledgeable about cancer pain & skilled in coping skills training interventions conducted the sessions with hospice-eligible Pts with advanced cancer & their CGs in the home environment	Significant: increase in CGs’ ratings of their self-efficacy for helping the Pt control pain & self-efficacy for controlling other symptoms Additional findings: CGs receiving training showed a trend to report improvements in their levels of CG strain & tended to report lower levels of negative mood
McMillan/2007/United States	A tailored intervention for hospice CGs designed to help them better manage cancer Pts’ symptoms was tested for its impact on symptom intensity (pain, dyspnea, & constipation), symptom distress, & QoL. Two other groups were included, one of which received standard of care & one that received standard of care + supportive visits. CGs provided symptom assessment tools & written guide for advanced cancer FUP: post-intervention data collection on Days 16 & 30	Intervention duration: 9 days • 3 training visits; Visit 1 = 45 minutes; visits 2-3 = 30 minutes) • CGs called between visits to evaluate problems, offer problem-solving support, & answer questions • Advance 4-day training for those delivering intervention • Duration of calls & data collection: NR	CGs in intervention group received 4-component COPE training to assist with symptom assessment & management: (1) Creativity: CG problems viewed from different perspectives to develop new strategies for resolving them; (2) Optimism: CGs learned to have positive but realistic attitude toward problem-solving process; (3) Planning: CG goals & steps needed to reach goals determined; & (4) Expert Information: CGs taught nature of problem, how they can deal with problem independently & when to get professional help (included use of symptom assessment scale tools for pain, constipation, & dyspnea). CGs encouraged to assess pain & dyspnea at least twice daily & constipation once daily & record findings in a symptom diary, the ratings of which were used to determine management at home or contacting hospice staff.	Intervention delivered by research nurses to CGs in the home environment.	Significant: • Improved symptom distress Additional findings: • Symptom intensity for 3 target symptoms (pain, constipation, & dyspnea) did not decrease & QoL did not significantly improve
Vallerand/2010/United States/	To determine the effect of the “Power of Pain” intervention, a structured educational intervention for nurses, Pts & CGs on PM & opioid-related side effects in Pts with cancer, home care agencies were randomly assigned to 1 of 4 arms: (1) nurses, Pts, & CGs received intervention; (2) nurses received intervention, Pts & CGs did not; (3) Pts & CGs received intervention, nurses did not; (4) nurses/Pts/CGs did not receive intervention. Nurses were provided an information packet during training & Pts/CGs were provided a packet of written materials during their first visit FUP: repeat qualitative interviews with nurses (at 3 & 6 months; reported in other papers), repeat data collection measures with nurse/Pts/CGs post intervention	Nursing Intervention: Session 1: 4 hours Duration of baseline & FUP evaluations, Session 2 training, & 2 qualitative interviews: NR Pt & CG intervention: Week 2 visit: 1 hour Weeks 1, 3, & 4: duration of visits for baseline & FUP evaluations: NR; duration of baseline qualitative interview: NR	Nurse intervention: series of 2 sessions designed to improve PM & side effects of Pts with cancer • Session 1: lecture/discussion on misconceptions of analgesics (addiction, tolerance, dependence, & respiratory depression), pharmacologic PM, & management of analgesic side effects; effective communication skills; informational packet included resources for PM & opioid-related side effects • Session 2 (4-6 weeks later): focused on more advanced concepts of dose titration while managing side effects & emphasized communication & advocacy skills in PM; incorporated role-playing & assertiveness training; presentation of cases & feedback about communication barriers Pt & CG Intervention: • Provided packet of written materials reflecting the information to be discussed in the program & asked to review information prior to 2nd visit • At 2nd visit, 1-hour educational intervention presented; content similar to sessions nurses attended but presented in layman’s terms, included PM, misconceptions, analgesics, and side effect management.	Intervention was delivered to Pts & CGs by the principal investigator in the home environment; details regarding provider(s) & site of nurse training: NR	• Nurses receiving intervention: increased pain-related knowledge (knowledge gain persisted at 6 months) & perception of control over pain; reduction in perceived barriers to pain control (effect at 6 months > than 3 months) • Pts receiving intervention: decrease in perceived barriers to pain control • CGs whose nurse received intervention: improvement in perception of control over pain
Porter/2019/United States	Dyads in both conditions receive educational resources on pain Management. CG-guided pain coping skills training intervention (CG-CST) includes 3 weekly 60-min sessions conducted with the dyad via videoconference.	Timepoints of Pt & CG: Baseline, 1-week post-treatment (or 4 weeks post-baseline with treatment-as-usual dyads) CG: 3 & 6 months after the Pt’s death 3 weekly 60-min sessions	CG-CST: Session 1: therapist introduces pain coping skills training, provides an overview of the training program and materials, and shows a video that provides basic information on the medical management of cancer pain. Session 2: therapist discusses the importance of Pt–CG communication, provides training in relaxation mini-practices and pleasant imagery, and identifies potential application of skills to cope with pain. Session 3: therapist introduces the use of an activity pacing method and pleasant activity scheduling, reviews coping skills and identifies those the participants found most useful, then helps develop a maintenance plan. Enhanced treatment-as-usual: Pts and CGs receive the same educational video on cancer pain and its management and receive iPads with icons linked to reputable websites that provide educational information on cancer, including cancer pain and are encouraged to utilize them.	Intervention delivered by licensed doctoral and master’s level therapists (psychologists, social workers, and professional counselors) via videoconference	• Several challenges to recruitment which led to changes in eligibility criteria and study protocol and design • Collecting assessments during bereavement period, including identifying when Pts die and maintaining contact with CGs, was challenging • Pts were being excluded for not meeting the criteria for worst pain levels, reporting levels below 4, which contradicts the literature and raised suspicions of underreported pain • Recruitment from the freestanding palliative care and hospice site was challenging due to potential recruits being very close to death
Type 3: Technology-based Interventions
Lead Author, Year, County	Intervention: format, resources provided to CGs, FUP	Intervention Duration & Intensity	Intervention Content	Provider, Recipients, Site of Delivery	Major Outcomes
Parker Oliver/2010/United States	A videophone intervention, ACTIVE (Assessing CGs for Team Intervention through Video Encounters) was tested, enabling hospice Pts & CGs to remotely participate in interdisciplinary team meetings, with the goal of improving PM. Phase 1: traditional hospice care; Phase 2: traditional care + videophone FUP: when possible, measures with Pts were taken by phone every 2 weeks & with CGs every 30 days; CGs in the intervention group & hospice staff were interviewed at the end of the study	Duration: 20 months; median time of enrollment was 46 days in phase I & 25 days in phase 2 32 CGs attended a total of 89 meetings: range 1-9; median 2; average duration slightly over 6 minutes Duration of initial baseline evaluations & final interviews: NR	Participants were connected virtually using a plain old telephone system (POTS) videophone unit in the home, which connected to a compatible unit in the hospice office and allowed for 2-way visual image & conversation. All hospice IDT meetings were video recorded in both phases.	Intervention delivered remotely by hospice staff to CGs & Pts in the home	Significant: • Improved CPMQ subscales scores of “tolerance” & “stoicism” & reluctance to report/ communicate Additional findings: • Median length of stay in hospice: phase I, 52 days; phase 2, 59 days • High attrition (>40%) due to Pt death or worsening of condition at the first follow-up • 20% of Pts unable to complete FUP after 8 weeks • CGs did not appear to experience anxiety as a result of participation • 43% of CGs did not administer a med, resulting in missing data for CPMQ subscale measuring difficulty of PM administration 92% of CGs hold perceptions related to pain meds that can affect Pt care
Parker Oliver/2017/United States	A videophone intervention, ACTIVE (Assessing CGs for Team Intervention through Video Encounters), enabled hospice Pts & CGs to remotely participate (via web conferencing or telephone) in interdisciplinary team meetings. CGs were randomized to receive ACTIVE intervention or usual hospice care. No noted resources provided to participants. FUP: Pt & CG data collection: questionnaires every 2 weeks during month one, every month through month 6, & every 45 days thereafter; CG data collection at 1 year & interview 30 days after Pt death; annual staff interviews	Average duration of Pt discussion when CGs participated in meetings: 6 minutes (range 1-20 minutes); average duration without CG participation: 3 minutes (range: 1-11 minutes) Duration of training time on use of web conferenceing (CGs), time to complete evaluation measures (Pts/ CGs) & interviews (CGs/staff) NR	During the web conference or telephone call, a hospice staff member (usually a nurse) gave brief report on Pt’s condition & identified concerns for discussion. Family members were encouraged to provide feedback/ ask questions before a final plan of care was agreed upon. Pts were encouraged to participate in team meeting when able.	Intervention delivered remotely by hospice staff to CGs & Pts in the home	• Analysis of CPMQ subscales identified 1 significant association – fatalism – which improved more in the intervention group • CG’s anxiety & Pt’s pain were correlated • Interview question asking the CG’s impression of pain control differed between groups, with CGs in intervention group feeling Pt’s pain was better controlled
Mayahara/2017/United States	• Advisory group methods were used to convert a paper-based pain & analgesic diary into a digital format, the e-PAIN Reporter, & refine the application. The application prototype provided information on Pt pain assessment & PM & reported to nurses in real time. It was intended to be used by (1) informal CGs to report pain & analgesic use and (2) nurse case managers to monitor CG administration of analgesics. Participants were provided with tablets to practice using the prototype & entering data with case scenarios. 3 total meetings for each CG & nursing group were conducted.	Total number of meetings per participant group (CGs/nurse case managers): 3 Duration of each meeting: 2 hours	The paper version consisted of the (1) worst pain intensity & duration, (2) name of analgesic given to Pt, and (3) time of analgesic administration. Upon opening the e-PAIN Reporter application, CGs see an introduction with contact information & a home page where they can select a pain report or 24-hour report. Meetings were facilitated by a certified hospice & PC nurse & research assistant & a multimedia designer provided input & guidance into development of the application.	Nurse case managers & informal hospice CGs attended meetings & provided feedback at the hospice agency	Findings of usability testing: • Nurses had a higher technology ownership • 2 themes from first CG meeting: CGs felt stressed about administering analgesics, primarily narcotics, due to lack of knowledge & despite their stress & lack of knowledge, CGs did not communicate their concerns to nurses • Nurses requested having both around-the-clock and as needed analgesic intake recorded so they could accurately assess the adequacy of pain control; CGs wanted to record both because they had a hard time differentiating between the two types • Because CGs may not be able to report each pain episode, a 24-hr summary report was created & asked CGs to report the worst Pt pain in the past 24 hours, pain frequency & duration, and how many time around-the-clock & as needed meds were used • Challenges noted by CGs: older CGs had a hard time reading some font sizes & colors; screen dimensions; imputing information by typing on the tablet; lack of options to provide an explanation/rational when selecting options such as “did/gave something else”
Mayahara/2019/United States	e-Pain Reporter, a digital pain and medication diary for informal hospice CG reporting and nurse monitoring of pain management in real time	Timepoints of Pts and CGs: Baseline and 9-days post-intervention Daily report and report every time the Pt experiences pain over 9 days	• CGs asked to complete a breakthrough pain report every time the Pt experiences pain and complete the daily pain report once a day before bed over 9 days • Self-administered, digital pain application delivered on a tablet computer with 2 elements: (a) breakthrough pain report and (b) daily pain report	Self-administered by CGs	•Pts experienced frequent breakthrough pain throughout the day (mean, 10.5), and pain was not well controlled (worst pain = 5.9) • Highest subscale mean score of Barriers Questionnaire II (BQ-IO) was on concerns related to the harmful effects (3.6) of pain management

Abbreviations: CG(s), caregivers; Dx, diagnosis; HCP(s), health care provider(s); IDT, interdisciplinary team; NR, not reported; OTC, over-the-counter; Pt(s), patients; PM, pain management; SO(s), significant others, SOC, standard of care; Tx, treatment.

Type 1: Educational Interventions for Pain/Symptom Management (n=17; 68%)

An educational intervention was defined as an intervention that provides patients and caregivers with knowledge and information to help improve their pain management. Seventeen studies in this review developed or tested educational interventions designed to educate and improve family caregivers and patients’ pain and symptom management skills.

(1) Structured education on pain management (n=14).

Fourteen studies provided structured pain management education. The content of ten studies primarily dealt with pain management, while four included content for both pain and overall symptom management. Most of the programs primarily included content addressing pain assessment and management, medication knowledge, management of medication side effects, and misbeliefs about pain management. Only five studies included additional information on non-pharmacological pain treatments,^{21,22,32,34,36} and three studies provided information regarding communication or reporting of pain management strategies with the care team.^{15, 27, 36}

Delivery and duration.

All studies provided face-to-face sessions. Not all studies provided the durations of sessions and the periods of the entire intervention. Interventions were delivered from one to eight sessions: one session (n=9 studies), two sessions (n=2 studies), three sessions (n=4 studies), four session (n=1 study), and eight sessions (n=1 study). The length of each session ranged from 30 minutes to 3 hours. Most of the interventions were delivered by research nurses or research staff, and two studies trained practicing nurses to teach and coach patients and family caregivers in pain management in clinical practice.^18,26 These two studies primarily focused on addressing issues related to the use of pain medications. The follow-up times ranged from 1 week to 12 months.

Most of the studies provided patients and family caregivers with written educational materials or instructions. Additionally, four studies also included multimedia strategies such as videos or DVDs to explain information.^{15, 23, 27, 35}

Tailored education.

Most of the studies primarily provided teaching. Six studies provided patients and caregivers with tailored education and coaching in pain management.^{18, 26, 28, 30, 32, 36} However, only three studies used tools or questionnaires to structurally identify caregivers’ gaps in knowledge and challenges in pain management.^{18, 30, 34}

Outcomes.

None of the studies assessed potential negative intervention effects on family caregivers and patients. Most studies identified significant improvements in patients’ outcomes post intervention such as: pain intensity (n=4),^{5, 18, 21, 32} pain interference (n=3),^{5, 15, 32} misbeliefs or perceptions of pain management (n=6),^{5,21,22,27, 28,32} functions (n=4),^{21, 28, 30, 36} psychological well-being (n=2),^21,22 adherence to prescribed pain medications (n=2),^5,21 quality of life (n=2),^{28, 32} and health costs (including hospital visits) (n=1).²⁴

Studies also showed significant improvements in family caregivers’ outcomes including knowledge (n=7),^{18, 21,22, 26, 30, 32, 36} fewer concerns about pain management (n=6),^{5, 18, 21,22, 27, 28,} motivations in pain management (n=2),^{23, 32} self-efficacy in pain/symptom management (n=1),³⁴ adherence to prescribed pain medications (n=1),²¹ and quality of life (n=2).^{21, 32}

(2) Training on non-pharmacological therapies (n=3).

Three studies specifically focused on training family caregivers to use non-pharmacological therapies to relieve patients’ pain and symptoms, including massage therapy,³⁵ touch-based techniques,²⁹ and reflexology.³¹ One study was a feasibility study³⁵ and two studies were RCTs.^{29, 31}

Delivery and duration.

The interventions in the studies were delivered through one to four face-to-face sessions. Each session ranged from 30 to 45 minutes, but one study did not provide the duration of the one-time session.²⁹ Two studies provided written instructions^{29, 35} and one of them also provided multimedia tools such as a DVD.²⁹ One study instructed practicing nurses how to teach caregivers foot and hand massage to relieve pain.³⁵

Content.

Faurot (2007) developed structured training protocols and written materials to train nurses and staff to teach foot and hand massage to family caregivers (n=9) to relieve patients’ pain.³⁵ Nurse and staff received three 2-hour training sessions and caregivers received training from nurses or staff for 45 minutes. Collinge et al. (2013) developed a multimedia instructional program (a 78-minunte DVD and a 66-page manual) for family caregivers to learn touch-based techniques including massage, positioning of home furniture, manual techniques for comfort and relaxation, and acupressure for pain, anxiety, and nausea, safety precautions related to touch with cancer patients, and communication (n=97 dyads).²⁹ Participants in the intervention group attended a one-time orientation meeting to view DVD and learn how to use the DVD and the manual at home. They were told to practice techniques of their choice at least three times per week. Wyatt (2017) conducted an RCT to examine the effects of home-based, caregiver-delivered reflexology for symptom management (n=256 dyads). Family caregivers received four weekly reflexology sessions (30 minutes each session).³¹

Outcomes.

One feasibility study mainly reported the challenges of recruitment including limited availability among caregivers and nurses’, and a lack of incentives and clinical coverage of intervention implementation for nurses and administrators.³⁵ In two RCTs, the outcomes of post interventions showed significant reductions in symptom severity (including pain) in the intervention group, compared to the control group.^{29, 31} One study also reported significant gains in caregivers’ confidence, comfort, and self-efficacy in using touch and massage.²⁸ Only one study found significant reductions in patients’ symptom (including pain) severity and interference over 11 weeks follow-up.³¹

Type 2: Cognitive-behavioral Interventions (n=4;16 %)

Cognitive-behavioral intervention is a collaborative effort between an interventionist and a person to help them recognize their current problems, and then use problem-solving training, role-playing, assertiveness training, and other techniques to change their thoughts, attitudes, and behaviors.³⁷ Four studies designed cognitive-behavioral interventions to build patients and family caregivers’ skills. All of them were RCTs. ^{13, 14, 25, 33}

Delivery and duration.

All interventions consisted of three training sessions led by research staff or therapists. Each session ranged from 20 to 60 minutes. Three interventions were delivered via face-to-face sessions, and one intervention was delivered via videoconference.³³ All interventions provided caregivers with written materials, and two studies supplemented with videos and audios.^{13, 33}

Content. (1) Problem-solving therapy training (n=3).

Three studies develop programs to educate family caregivers about pain management knowledge and train them to use pain coping skills.^{13, 14, 33} Besides teaching knowledge related to common concerns about pain management and coping skills, two studies instructed caregivers in relaxation and guided imagery as well as the importance of communication with patients and care teams.^{13, 14, 33}

(2) Assertiveness and role-playing training (n=1).

Vallerand (2010) developed a program for home care nurses, patients, and caregivers. Two sessions for nurses included pain management knowledge and skills, communication skills, and role-playing and assertiveness training. One session for patients and caregivers focused on pain management, misconceptions, analgesics, and side effect management.²⁵

Outcomes.

None of the studies assessed potential negative intervention effects on family caregivers and patients. The significant outcomes of cognitive-behavioral interventions were improved patient symptom distress,¹⁴ levels of caregiver self-efficacy in pain management,¹³ and nurses, patients, and caregivers’ perceptions of pain.²⁵ One study has enrolled 226 patient-caregiver dyads and is still enrolling participants. Hence, the study mainly discussed the study methods and the challenges in recruiting caregivers and patients with advanced cancer.³³

Type 3: Technology-based Interventions to Engage Caregivers in Pain Management (n=4; 16%)

Two technology-based interventions were used to engage family caregivers in patients’ pain management, one using videoconferencing,^{16, 17} and the second using e-pain diary.^{19, 20} Three studies tested the usability and the feasibility of the interventions^{16, 19, 20} and one was a RCT.¹⁷

Content. (1) Digital pain diary (n=2).

Mayahara (2017) (2019)^{19, 20} developed a digital pain and analgesic diary that was specifically designed for family caregivers in home hospice care. The usability study engaged end-users (nurses and caregivers) into the development of the diary prototype to meet the needs of aging caregivers (e.g. larger fonts, a drop-down list of alternative drugs). Twelve out of 14 patient-caregiver dyads completed the feasibility study. Caregivers were asked to use the digital pain dairy to report patient pain and pain management for 9 days.

(2) Teleconference (n=2).

Parker Oliver developed and evaluated the efficacy of caregivers’ participation in hospice care plan meetings via videophones on caregivers’ perceptions of pain medications and patient and caregivers’ quality of life.^{16, 17} During the meetings, caregivers were encouraged to provide feedback and ask questions, as well as participated in the care plan decisions. In the feasibility study, 32 caregivers attended 89 meetings. The median number of meeting was two; the average interaction time was 6 minutes per meeting. Patients and caregivers were followed up every 30 days until study completion, but 40% of patients were not able to complete the first follow-up measures due to death or worsening conditions. The subsequent RCT recruited 446 caregivers. Family caregiver and patient outcomes were measured at baseline and follow-up, which ranged from 2 weeks to 45 days until study completion.¹⁷

Outcomes.

Technology-based interventions were feasible to support family caregivers’ pain management.^{16, 19, 20} Mayahara’s feasibility study showed that caregivers were satisfied with using the e-pain diary, but there were no significant changes in caregivers’ self-efficacy and perceptions of pain medications.²⁰ Parker Oliver’s feasibility and RCT studies demonstrated that caregivers’ participation in interdisciplinary hospice care plan meetings via teleconference improved a few caregivers’ perceptions of pain medications,^16,17 but not the level of patents’ pain, caregivers’ anxiety, or patients’ and the caregivers’ quality of life.¹⁷

Theoretical Frameworks

Eleven studies (44%) described intervention designs guided by a theoretical framework. The frameworks used were the representational model,^26,28 cognitive behavioral framework,^{13, 18, 33} biopsychosocial approach,³² King’s open system framework,²⁴ Nezu’s problem-solving therapy approach,¹⁴ Bandura’s self-efficacy theory,³⁴ Orem’s theory of self-care deficit,³⁰ Lazarus’ theory of adaptation,²⁶ and family participation on health care teams of Saltz and Schaefer.^16,17 Most of the studies with a theoretical framework were published in the last 10 years.^{18, 24,26, 28,30, 32,33, 34}

Measures and Instruments

Pain outcomes (severity and interference), patient functions, caregiver and patient perceptions of pain management/pain medications, caregiver and patient self-efficacy, and caregiver and patient quality of life were the most common measures.

The Brief Pain Inventory was the most commonly used instrument to measure pain intensity, pain relief, and pain interference. The Karnofsky Performance Status (KPS) and Palliative Performance Scale (PPS) were used to measure patient functions. The Barriers Questionnaire (BQ), Caregiver Pain Medicine Questionnaire (CPMQ), and Family Pain Questionnaire (FPQ) were generally used to measure barriers to pain management. The Caregiver Self-Efficacy in Pain Management scale (CSE) was used to measure caregivers’ self-efficacy in managing patients’ pain. The Caregiver Quality of Life Index-Revised (CQLI-R) and Functional Assessment of Cancer Therapy-General (FACT-G) were used frequently to measure caregivers’ physical well-being, social well-being, emotional well-being, and spiritual well-being (Appendix 3. lists all the measures used in the included studies).

Study Quality Assessment

The study quality was assessed using Mixed Methods Appraisal Tool (MMAT), version 2018.³⁸ The tool is designed to evaluate the quality of studies and methodological strength across quantitative, qualitative, and mixed methods. Each type of study was evaluated based on its unique criteria and assigned percentages of items meeting criteria (Table 3).

Table 3.

Study Quality Appraisal: Mixed Methods Appraisal Tool (MMAT)

Quantitative RCT (Randomized Controlled Trial)
	Randomization	Comparable baseline data between groups	Complete outcome data	Outcome assessors blinded to the intervention	Participants adhere to the assigned intervention	Percentage of items meeting the criteria
Ferrell, 1993	NI	NI	NI	NI	NI	0%
Well, 2003	NI	Y	NI	NI	Y	40%
Keefe, 2005	Y	Y	NI	Y	Y	80%
Lin, 2006	Y	Y	NI	NI	NI	40%
McMillan, 2007	Y	Y	NI	Y	N	60%
Ward, 2009	Y	Y	Y	NI	N	60%
Vallerand, 2010	NI	NI	Y	NI	Y	40%
Hendrix, 2011	Y	Y	Y	NI	Y	80%
Valeberg, 2013	Y	Y	N	NI	NI	40%
Collinge, 2013	Y	Y	Y	NI	Y	80%
Nkhoma, 2015	Y	Y	Y	Y	Y	100%
Cagle, 2015	Y	Y	Y	Y	Y	100%
Hodge, 2016	NI	NI	NI	NI	Y	20%
Wyatt, 2017	Y	Y	N	Y	N	60%
Parker Oliver,2017	Y	Y	Y	NI	Y	80%
Kunik, 2017	Y	Y	Y	Y	Y	100%
Porter, 2019	Y	Y	NI	NI	NI	40%
Quantitative Non-RCT (Non-Randomized Controlled Trial)
	Participants representative of the target population	Appropriate measurements	Complete outcome data	Confounders accounted for in the design and analysis	Intervention administered as intended	Percentage of items meeting the criteria
Ferrell, 1995	Y	Y	N	NI	NA	40%
Faurot, 2007	N	Y	N	NI	NA	20%
Capewell, 2010	Y	Y	N	NI	NA	40%
Parker Oliver, 2010	Y	Y	N	NI	NA	40%
Chellappan, 2014	Y	Y	Y	NI	NA	60%
Latter, 2018	Y	Y	N	Y	Y	80%
Mayahara, 2019	N	Y	Y	Y	NA	60%
Qualitative Design
	Appropriate Qualitative Approach	Adequate qualitative data collection methods	Findings adequately derived from the data	Interpretation of results sufficiently substantiated by data	Coherence between data sources, collection, analysis, and interpretation	Percentage of items meeting the criteria
Mayahara, 2017	Y	Y	Y	Y	Y	100%

Abbreviations: Yes: Y; No: N; No information: NI; Not Applicable: NA

Seventeen studies with a quantitative RCT design were evaluated with the following criteria: (1) Is randomization appropriately performed? (2) Are the groups comparable at baseline? (3) Are there complete outcome data? (4) Are outcome assessors blinded to the intervention provided? and (5) Did the participants adhere to the assigned intervention? Only three studies met all the criteria.^{18, 32, 36} Some studies with a lower percentage of items meeting criteria did not provide adequate information on the methods and data collection process, or were not able to provide complete outcome date due to a high attrition rate.

Seven studies with a quantitative non-RCT design were evaluated with the following criteria: (1) Are the participants representative of the target population? (2) Are measurements appropriate regarding both the outcome and intervention (or exposure)? (3) Are there complete outcome data? (4) Are the confounders accounted for in the design and analysis? and (5) During the study period, is the intervention administered (or exposure occurred) as intended? Most of the studies did not meet all the criteria because they did not address if there were any potential confounders or if the intervention was delivered consistently.

Only one study that evaluated the usability of e-pain reporter for nurses and caregivers used a qualitative interview method.¹⁹ This study was evaluated with the following criteria: (1) Is the qualitative approach appropriate to answer the research question? (2) Are the qualitative data collection methods adequate to address the research question? (3) Are the findings adequately derived from the data? (4) Is the interpretation of results sufficiently substantiated by data? and (5) Is there coherence between qualitative data sources, collection, analysis and interpretation? Mayahara’s study (2017) met all the criteria.¹⁹

Limitations across Studies

Common limitations across studies were high attrition rates, limited generalizability due to homogenous samples or small sample sizes, lack of detailed information on patients’ pain conditions (characteristics and types of pain) and received pain treatments, inadequate information on patient and family caregiver demographics, and limited information on the process of data collection and analyses.

Discussion

As a result of shifting medical care from hospital to home, most studies in this review were conducted in home-based settings including home care, palliative and hospice care, and oncology clinics. This trend indicates that an increasing number of family caregivers are expected to perform medical and clinical tasks for patients at home.

Characteristics of Patients and Family Caregivers

Most studies included both patients and caregivers. The majority of caregivers were white females who took care of their spouses with cancer. Only a few studies included caregivers of patients with a non-cancer diagnose such as HIV/AIDS³² and dementia.³⁶ As patients with non-cancer diagnoses (dementia, heart, and respiratory diseases) have become the largest group in home-based palliative and hospice care in the U.S.,³⁹ more studies need to focus on pain and symptom management in non-cancer populations. Pain management strategies will differ among diseases depending on pain etiologies.⁴⁰ For example, one common source of pain from cancer arises from a tumor pressing on nerves or bones.⁴⁰ The pain management strategy for this type of pain will be different from nociceptive pain, which is prevalent in patients with dementia.^{41, 42} Moreover, most patients with cancer can report and assess their own pain, but patients with dementia may have difficulty reporting their pain because of patients’ decreased cognition and communication ability.^43,44 Additionally, inappropriate pain management for patients with dementia triggers more neuropsychiatric symptoms (e.g. agitation, aggression, depression), decreases their quality of life, and increases healthcare utilization.⁴² However, there are limited studies that explore pain management issues and challenges for patients with dementia and their family caregivers. Knowledge regarding pain etiology, pain symptomology, and issues in pain management in dementia and other non-cancer diseases will enhance effective pain management and develop targeted interventions to meet patient and family caregiver needs.

Few studies described patient and family caregiver demographics and socioeconomic data such as level of education, employment status, marital status, incomes, and religion. Because limited information was provided on caregivers’ characteristics, it is difficult to ascertain which interventions were effective for certain groups of caregivers. Additionally, less than 30% of studies reported information about patients’ types or conditions of pain^{13, 18, 20, 32, 36} and pain treatments received.^{5, 15, 18, 21, 22, 27, 35} Therefore, this review was unable to synthesize the overall patient pain characteristics, severity, and interference on their functions.

All of the included studies designed pain management interventions that focused on patients’ single, primary diagnosis, instead of considering patients’ overall medical conditions and characteristics of pain. Many patients with multimorbidity have severe pain and symptom burden.⁴⁵ Globally, an estimated 33% of adults have multimorbidity (multiple chronic conditions).⁴⁶ In the U.S., more than 50% of older adults have more than three chronic conditions⁴⁷ and 40% of cancer patients have at least one other chronic condition.⁴⁸ Pain and multimorbidity can lead to a variety of negative outcomes, including associated functional impairment, psychological distress, symptom severity and burden, increased medication use, decreased quality of life, and sleep disturbance.⁴⁹ However, effective pain management for patients with multimorbidity is challenging due to multiple pain etiologies and pathological mechanisms, often complex medication regimens, and various side effects. Interventions that solely focus on one disease may not apply to caregivers who manage pain for patients with multimorbidity. Also, there is limited understanding of the experience of patients and family caregivers when managing pain in the context of multimorbidity. Future studies are needed to better understand issues of pain management in the context of multimorbidity for patients and their family caregivers; as well as develop tailored interventions to meet their needs in pain management.

Types and Effects of Interventions

Previous literature reviews have established that providing patients with educational interventions can significantly improve cancer patients’ knowledge and attitude toward pain management and reduce pain intensity.⁵⁰ But these reviews primarily focused on cancer pain management, were patient-focused, and mostly tested educational interventions. Compared to previous reviews that focused on family caregiver pain management,^{10, 11} this review found an increasing number of studies that developed interventions supporting family caregivers’ management of pain in the last ten years. Three types of interventions were included: educational interventions, cognitive-behavioral interventions, and technology-based interventions.

Type 1: Educational interventions.

They are the predominant approach to support family caregivers in pain management. The results show that structured educational interventions can improve patients’ outcomes (pain outcome, adherence to pain medications, functions, quality of life, health costs, and beliefs in pain management) and family caregivers’ outcomes (adherence to pain medications, knowledge, self-efficacy, fewer concerns about pain management, and quality of life). All of the educational studies were delivered through structured, face-to-face sessions with supplementary written materials. Three studies trained caregivers to use non-pharmacological therapies and found that those interventions had the potential to enhance family caregiver self-efficacy and patient symptom distress. Most of the educational interventions provided caregivers with knowledge of basic pain management and pain medications, but only a few studies addressed non-pharmacological interventions and how to communicate patient pain condition with the care team, which are important elements of effective pain management. Recent studies show that family caregivers experience not only limited knowledge in pain management and medications, but also communication issues with care teams and patients, organizational skills issues, caregivers’ own physical function issues, patients’ inability to report pain, and many others.^51–53 Future studies need to comprehensively investigate the challenges that family caregivers face and then develop tailored interventions that address family caregivers’ specific challenges in pain management.

Regarding the duration of the interventions, most studies delivered interventions via one to three sessions, ranging from 30 minutes to 3 hours, although not all studies reported the duration of each session and the intervention period. Only one study reported the fidelity data of the intervention.¹⁸ These limitations made those interventions difficult to replicate or translate to the clinical practice. Moreover, there was limited engagement of stakeholders and testing in clinical settings. Only two studies used the participatory method to engage patients, caregivers, and healthcare providers into the process of the development of the intervention.^{26, 32} Most interventions were delivered by research staff and had limited testing of their feasibility and effects in clinical pain management.

A meaningful comparison of effects among the 17 educational interventions is challenging for a couple reasons. First, the instruments used in the studies to measure outcomes varied so the measures were different across the studies. For example, four studies reported a significant improvement in patient’s pain intensity,^5,18,21,22 but each study measured pain intensity differently (e.g. worst pain v.s. average pain experienced in the past week), and only two studies used a comparable scale.^5,18 Secondly, only 12 of the studies were RCTs that measured the effects of interventions. Future research should use validated and standardized instruments to measure outcomes, as well as develop more rigorous clinical trials that could be replicated in clinical practice.

Type 2: Cognitive-behavioral interventions.

In the literature, some studies developed interventions to train family caregivers in problem-solving or coping skills^54–56 but they primarily focused on general coping skills. Pain management is a complex decision-making process, and there are limited studies that specially train family caregivers in pain coping skills. In this review, four studies designed structured training following cognitive-behavioral principles to coach caregivers in pain coping.^13,14,25,33 The results showed improvements in symptom distress, perceptions of pain management, and family caregiver self-efficacy. Flowever, no studies measured the long-term effect of the interventions on patient and caregiver outcomes or assessed family caregiver challenges in pain management or pain coping skills before the interventions. More studies are needed to examine the effects of cognitive-behavioral interventions on pain management outcomes.

Type 3: Technology-based interventions.

Four studies used technology-based interventions to engage caregivers in pain management in hospice care.^16,17,19,20 Both e-pain diary studies and family caregiver participation in interdisciplinary care team meetings were feasible for family caregivers to use technologies to enhance their pain management. Flowever, these studies did not show significant improvements in outcomes such as family caregiver overall perceptions of pain medications, family caregiver self-efficacy, family caregiver anxiety, family caregiver quality of life, and patient pain outcomes. This may be due in part to a lack of structured training in pain management and collaboration with care teams. As pain management is a multifaceted and complex process, interventions could incorporate more structured training that will guide caregivers on pain management and communication with care teams in the decision-making process. Also, most technology-based interventions were feasibility studies, so more clinical trials are needed to examine the effects of technology-based interventions on pain management outcomes.

Overall, both educational and cognitive-behavioral interventions improved family caregiver and patient outcomes. The studies with significant findings primarily improved caregivers’ knowledge, self-efficacy, and perceptions of pain management. Flowever, there was significant variability in the instruments used to measure outcomes, with many using tools that not well validated or unvalidated, which makes it difficult to determine valid effects of interventions. Few studies tested or showed improvements in family caregiver psychological well-being and patient outcomes. One possible explanation may be that most studies did not have follow-up measures to detect the effects or had too short of follow-up timeframes to determine long-term effects of the intervention (most studies did not follow-up past 3 months).

Some studies were informed by specific conceptual frameworks; however, these studies did not provide adequate explanations on how the conceptual framework guided the components of the interventions and the choices of intermediate (caregiver-related outcomes) and distal (patient-related) outcome measures. It was not clear how these frameworks guided the selection of outcomes (both intermediate and distal outcomes), as well as the directional relationship between the components of the interventions and measured outcomes. The relationship between family caregiver training, family caregiver outcomes, and patient outcomes needs to be established.⁵⁷ Most of the interventions in this review were designed based on common challenges that caregivers faced in managing pain. However, there is a lack of comprehensive literature review to systemically investigate all aspects of challenges in pain management for caregivers. Also, many studies did not provide adequate information on research methods and data collection processes; and were not able to provide complete outcome date due to a high attrition rate (>30%). Hence, only four studies met all the criterial items on the MMAT quality assessment tool. Moreover, very few studies engaged caregivers, patients, or care providers in the development process of the interventions. A thorough literature review and a participatory research method will inform the design of an intervention that meets family caregivers’ needs in pain management.

Consistent with previous caregiving reviews,^{10, 58} family caregivers can benefit from educational and cognitive-behavioral interventions, but it is not clear which intervention is most effective. Also, most interventions required several, in-person training sessions for caregivers, which is not accessible and feasible for many family caregivers who are overwhelmed by caregiving tasks and concurrent responsibilities. Hence, tailored interventions that target family caregivers’ specific challenges and needs may be easier and more applicable. However, only three studies in this review used tools or questionnaires to identify caregivers’ gaps in knowledge and challenges in pain management to provide tailored training for their needs.^{18, 30, 34} But these questionnaires primarily focused on issues related to pain medications, thus not comprehensive in assessing and identifying the caregivers ability and challenges in pain management, such as pain assessment skills, communication with the care team, and many others.^51–53 Technology-based interventions are feasible and accessible, especially in rural communities with limited access to in-person healthcare resources. Future research can use web-based interventions to enhance caregivers ‘access to accurate pain management information as well as to provide caregivers with tailored and assessment-based information to address their gaps in pain management and empower shared decision-making in pain management with their care team.

Limitations

This review was limited to studies published in English and excluded dissertations, non-peer-reviewed studies, conference abstracts, editorials, reviews, and descriptive studies. This review was also limited to non-pediatric populations.

Unique Contribution from This Review

Previous literature reviews did not include patients with a non-cancer diagnosis or studies that proposed non-pharmacological interventions. Thus, the purpose of this review was to present an updated and comprehensive review of interventions, including non-pharmacological interventions, that support family caregivers in providing pain management to patients with all disease diagnoses. Nevertheless, only two of the 25 included studies focused specifically on patients with a non-cancer diagnosis. Hence, this is an important area for future research. Additionally, only five out of 17 educational interventions had some elements of non-pharmacological interventions, and only three studies were exclusively focused on non-pharmacological education. Therefore, future studies can focus on incorporating more non-pharmacological pain management education for family caregivers.

Implications for Clinical Practice

Family caregivers play an essential role in assisting with patients’ pain management at home. While there is an increasing recognition of family caregivers’ role in managing patients’ pain, there are currently no best practice guidelines for health professionals to prepare family caregivers for managing patients’ pain at home.¹⁰ There is a lack of comprehensive tools that can assess and identify the challenges that family caregivers face when managing pain, as well as accessible resources that can support family caregivers in providing pain management. This review will increase healthcare providers’ awareness that providing family caregivers with appropriate and complete resources on pain management will improve patient and family caregiver outcomes. Also, there is a need to develop guidelines for healthcare providers to prepare family caregivers to manage patients’ pain.

Implications for Research

This present review is one of the few that comprehensively synthesizes studying findings on pharmacological and non-pharmacological interventions designed to support family caregivers across diagnoses in pain management. More rigorous and replicable clinical trials are needed to examine the effects of educational, cognitive-behavioral, and technology-based interventions on patient and family caregiver outcomes to determine the most effective interventions. Future research should include or focus on non-cancer populations and patients with multimorbidity. There is a need for comprehensive and systematic investigation of family caregivers’ challenges in pain management and development of models or frameworks addressing these challenges to further inform intervention and outcomes of interest. In addition, engagement of family caregivers in the design process through participatory research methods and the use of technology can further improve effectiveness and accessibility of interventions.

Conclusions

Providing pain management education or pain coping skills training (cognitive-behavioral interventions) can improve patient and family caregiver outcomes. Rigorous and replicable clinical trials are needed to examine the effects of different types of interventions and to tailor strategies to align with individual family caregiver needs and skills. Lastly, family caregiver intervention research is needed that addresses the unique pain management needs of patients with non-cancer diagnoses and multimorbidity.

Key Message.

Providing pain management education or pain coping skill training (cognitive-behavioral training) can improve patient and family caregiver outcomes. Nevertheless, more rigorous and replicable clinical trials are needed to determine the most effective interventions, particularly for patients with a non-cancer diagnosis and multimorbidity.