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

Abstract

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

Introduction

Afamily caregiver (FC) is someone who “has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition.”¹ An estimated 53 million Americans serve as FCs providing care to a care partner, with pain management identified as a common challenging caregiving task.^2,3 Pain is a highly prevalent symptom among individuals with advanced illnesses, including cancer, dementia, cardiovascular diseases, and pulmonary diseases.^4–6 FCs play a key role in assisting their care partner with daily pain management.^7,8 However, pain management is a complex task that requires ongoing assessment, treatment delivery, monitoring of treatment responses and side effects, and communicating with the care team.^3,8 To provide effective pain management, FCs are required to have a set of knowledge and skills in pain assessment and management, documentation, and communication, as well as overcome their own fear and concerns about pain management.^7–9

Unfortunately, due to a lack of structured preparation and training, FCs often do not receive the support they need and encounter numerous challenges in pain management, leading to low adherence to pain management regimens and consequently inadequate pain control.^10,11 Inadequate pain control in individuals with advanced illnesses can lead to excessive utilization of health care resources^12–15 and cause stress and burden to their FCs.^16–18 A comprehensive understanding of FCs' challenges and needs in providing pain management for care partners with advanced illnesses is still limited.¹⁹ Currently, there are no reports of interventions that were guided by a comprehensive review of challenges that FCs face in managing pain for care partners.¹⁹ As a result, there is a lack of evidence-based clinical recommendations on how to prepare FCs for providing comprehensive pain management.^3,19

Previous reviews focused on challenges specific to knowledge deficits or misconceptions in pain management and medication, and their scope was limited to specific populations, such as patients with cancer or in palliative care.^3,8,20,21 In the last decade, some studies explored and identified additional challenges that FCs face in managing pain such as their inability to: accurately assess the level of pain intensity, decide when and how to use pain treatments, record and report treatments to health care teams, and many others.^7,22–26 However, there is a lack of evidence synthesizing these newly identified challenges, and none of the existing reviews focus on the broad topic of advanced illnesses. Therefore, the purpose of this review is to systematically synthesize existing literature on the challenges and concerns that FCs face when providing pain management for care partners with advanced illnesses. This is an important step toward developing effective interventions to address FCs' needs and empower FCs in pain management.

Methods

A systematic review was conducted to explore the challenges that FCs face when providing pain management for care partners with advanced illnesses. Search strategies were developed with the assistance of a university librarian by using both index and keyword methods. We also reviewed the references of relevant literature reviews^3,8,20,21 and their search strategies to enhance the comprehensiveness of our search strategies. The following electronic databases were searched: PubMed, CINAHL, PsycINFO, Scopus, and Health and Psychosocial Instruments. The PubMed search strategy, as detailed in Supplementary Appendix SA1, was adapted to use with the other electronic databases. Selected search terms included pain, caregivers, opioids, analgesic complementary therapy, alternative therapy, nonpharmacological interventions, barriers, concerns, knowledge, attitude, misperception, misbeliefs, and many others. The complete search strategies are available upon request.

All available studies published before April 2021 were searched with no date restrictions. The inclusion criteria were studies exploring challenges that FCs face in managing pain for adult care partners who have advanced illnesses. The exclusion criteria were studies that focused on pediatric populations (as causes and experiences of pain are different between adults and children), were not English and peer-reviewed, and were dissertations, conference abstracts, reviews, or editorials.

The search and review process followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) review guidelines.²⁷ The initial search yielded 8503 articles, of which 4084 duplicates were removed leaving 4419 articles to screen. We compared the included studies in our review with other existing reviews to ensure all important studies on this topic were included. Later we reviewed the studies listed in the reference lists from our included studies and added an additional 1822 studies into our review and screen.

A total of 6241 articles (4419 articles from the database search, and 1822 articles from the additional reference list search) were imported into Rayyan, a web-based systematic review application,²⁸ to be reviewed and screened. The abstracts and full-text articles were screened or reviewed by two authors (N.C.-C. and Y.-K.F.) with discrepancies resolved through discussions until consensus was reached. After screening the titles and abstracts, 6046 articles were removed, and 195 full-text articles were reviewed for eligibility. A total of 55 studies met the inclusion criteria and were included in this review (Fig. 1). The quality of an article was assessed using the Mixed Methods Appraisal Tool (MMAT), which is designed to evaluate the quality of qualitative studies, quantitative descriptive studies, and mixed methods studies.²⁹ The first and second authors (N.-C.C., Y.-K.F.) extracted information from each article, and the fourth author (E.B.) verified the accuracy of the information.

FIG. 1.

PRISMA 2009 flow diagram. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Design, settings, diagnosis, sample, data collection, FCs' challenges in pain management, and impacts of pain management on FCs were extracted from the articles. FC challenges were categorized using “Kelley's Informal Hospice Caregiver Pain Management Concerns Framework,” which was developed based on a secondary data analysis of 29 FCs' interviews to describe the challenges and concerns that FCs faced in managing pain for care partners in hospice care.⁷

Results

Fifty-five studies were included in this review. Study information from each article and FCs' challenges in providing pain management are summarized in Supplementary Appendix SA2.

Characteristics of the included studies (Table 1)

Table 1.

A Summary of Key Characteristics of Included Studies (N = 55)

	Number of studies (%)
Publication year
1991–1999	7 (13)
2000–2010	18 (33)
2011–2020	30 (54)
Country
United States of America	31 (56)
Canada	7 (13)
United Kingdom	4 (7)
Taiwan	4 (7)
Australia	4 (7)
Germany	1 (2)
Spain	1 (2)
India	1 (2)
Norway	1 (2)
Malaysia	1 (2)
Study methods
Qualitative method	33 (60)
Cross-sectional	14
Longitudinal	1
Case study	4
Grounded theory	3
Quantitative method	20 (36)
Cross-sectional	16
Correlational	7
Longitudinal	3
Retrospective	1
Mixed method	2 (4)
Cross-sectional	1
Longitudinal	1
Study setting (some studies were conducted in more than one type of settings)
Community settings
Hospice/end-of-life care	28 (50)
Oncology clinics	10 (18)
Home care services	8 (15)
Palliative care clinics	6 (11)
Long-term care facilities	2 (4)
Inpatient settings
Oncology	5 (9)
Palliative care	3 (5)
Hospice care	1 (2)
Intensive care unit	1 (2)
Patient diagnosis
Metastatic or advanced cancer	46 (84)
Noncancer	9 (16)
Others or unspecified diseases	4 (4)
Dementia and Alzheimer's disease	3 (5)
Respiratory disease	1 (2)
Neuromuscular	1 (2)
Sample type
Included caregivers only	27 (49)
Included both caregivers and patients	24 (44)
Included caregivers and health care providers	2 (4)
Included caregivers, patients, and health care providers	2 (4)
Sample size (No. of participants)
>500	1 (2)
>300–499	3 (5)
101–299	8 (15)
50–99	16 (30)
11–49	22 (40)
<10	5 (10)

Most articles were published within the last 10 years (n = 30, 54%) and conducted in the United States (n = 31, 56%). All studies were descriptive or exploratory studies using qualitative analyses (n = 33, 60%), quantitative analytic approaches (n = 20, 36%), and mixed method approaches (n = 2, 4%). Most were conducted in community settings, including hospice care (50%), oncology clinics (18%), home care (15%), palliative care (11%), and long-term care facilities (4%). Most studies focused on patients with an advanced cancer (n = 46, 84%). Only nine studies (n = 16%) focused on patients with a noncancer diagnosis, including dementia and Alzheimer's disease (5%).^23,30

All studies included FCs. Twenty-seven studies included only FCs (49%), while 24 studies included both FCs and patients (44%). Most FCs were female (85%), >50 years-old (62%), and were the spouse/partner of their care partner (34%). Most of them were white, married, and employed. Over half of the patients in the included studies were female (52%) with a mean age >60 (52%). Seven studies provided information about care partners' use of pain treatments and medication (14%).

FCs' challenges and concerns when providing pain management

The studies showed FCs experience many challenges and concerns when managing pain for care partners with advanced illness. Adapting Kelley's framework, the identified challenges were organized into four categories, including caregiver-related issues, caregivers' limited knowledge and skills in pain management, communication challenges with health care providers, and patient-related issues (Table 2). We reorganized Kelley's framework to describe more specific challenges. Newly added challenges are highlighted in Table 2 by asterisks. In addition, while not a part of the identified challenges, we also discuss the impact of managing pain on FCs' wellbeing below.

Table 2.

Caregiver Challenges in Providing Pain Management

Main categories	Specific challenges and concerns
Category I: caregiver-related issues	A. Fears (n = 22, 40%)9,22,31–35,36–48,49 B. Culture, religions, and beliefs (n = 14, 25%)9,11,16,31–34,37,38,46,47,50,52 C. Function and cognition (n = 10, 18%)7,18,25,26,44,48,52–54 D. Self-efficacy (n = 3, 5%)7,55,56
Category II: caregivers' limited knowledge and skills in pain management	A. Pain assessment concerns (n = 11, 20%)23,24,36,38,39,50,57–61 B. Inadequate information in pain management (n = 29, 53%)7,10,11,15,16,18,24–26,30, 33–35,38–40,42–44,50–54,56,63–66,a C. Pain treatments documentation and organization (n = 7, 13%)7,22,25,26,39,64,65
Category III: communication challenges with health care providers	A. Poor communication in pain management (n = 20, 36%)7,9,16,18,22,24,30,39,41–43,48,53,65
Category IV: patient-related issues	A. Reluctance to report pain (n = 13, 24%)7,11,16,33,34,37,39,47,50,52,58,62,66,68 B. Fear of using pain medication (n = 7; 14%)7,25,33,37,39,43,46,50,52 C. Balancing quality of life and pain management (n = 7, 14%)7,25,36,46,53,62,65 D. Inability to report pain (n = 4, 8%)7,16,25,30

^a Newly added challenges to Kelley's Informal Caregiver Pain Management Framework.

Category I: Caregiver-related issues

This category describes several challenges related to caregivers that may interfere with FCs' ability or behaviors to manage pain.

Fears (n = 22, 40%)

FCs were concerned that pain medication causes addiction, tolerance, medication-induced side effects, respiratory depression, or hasten care partners' death. Thus, those FCs were hesitant to follow the prescribed pain medication regimen.^9,22,31–49 About 30% of the FCs were hesitant to administer analgesics to their care partners.^33,34 FC hesitancy was found to be a significant mediator between patient barriers to use analgesics and patient analgesic regimen adherence.¹¹

Culture, religions, and beliefs (n = 14, 25%)

A fourth of FCs were reluctant to provide their care partners with pain treatments because they believed pain is inevitable or impossible to control, is a natural part of dying, or that their care partners should tolerate pain.^{9,16,17,32,33,38,47,50} FCs believed that pain signifies disease progress so they were reluctant to report pain to their care team or give care partners prescribed pain treatments.^{11,16,20,32,33,37,46,51}

Function and cognition (n = 10, 18%)

FCs' functional limitations, such as declined health, stress, and anxiety can prevent FCs from providing pain management.^{7,18,25,26,44,51,52} For example, FCs with higher levels of anxiety experienced greater difficulty in understanding instructions on how to use pain medication.⁵¹ Some studies suggested that FCs' cognition^7,53,54 and literacy limitations⁵¹ can interfere with FCs' ability to understand complex information about pain management regimens.

Self-efficacy (n = 3, 5%)

Self-efficacy has been conceptualized as an FCs' belief about their ability to execute a course of action to manage pain. Studies identified FCs' low self-efficacy as a barrier to pain management,^7,55,56 with one study finding that more than half of the FCs reported perceived lower self-efficacy as a barrier to symptom management.⁵⁶

Category II: Caregivers' limited knowledge and skills in pain management

This category involves FCs' limited knowledge and skills in pain assessment, pain treatment and medication management, and administration and organization of pain treatments.

Pain assessment concerns (n = 11, 20%)

Limited training in pain assessment makes it difficult for FCs to accurately recognize, evaluate, and ultimately manage care partners' pain. Six studies discussed the issue of pain assessment congruency between FCs and their care partners, which prevented FCs from providing adequate pain treatments. One study found that care partners' pain intensity and burden were rated significantly differently from FCs and health care providers.⁵⁷ Three studies found that FCs overestimated care partners' pain, ^36,58,59 whereas another study found that FCs underestimated the extent of care partners' pain.⁶⁰ Additionally, one study found that a care partner's cognitive impairment was related to greater discrepancy in the pain reported between a care partner and an FC.⁶¹

FCs expressed their concerns and insecurities in assessing care partners' pain.^{23,24,38,39,50} Parker Oliver et al identified that 37% of the FCs were not confident in their ability to assess pain.²⁴ McPherson et al found that FCs have difficulty assessing cancer pain for care partners who have multimorbidity where pain can have several etiologies.⁵⁰ Additionally, FCs experienced challenges in assessing pain for care partners who have impaired cognitive function or the inability to verbalize the characteristics and locations of their pain.²² Due to communication barriers, FCs were not able to differentiate between care partners' “real pain” or “imagined pain.”⁵⁹ Furthermore, nonverbal pain cues were sometimes either unnoticed or disregarded by FCs.

Inadequate information in pain management (n = 29, 53%)

Some FCs raised concerns about a lack of adequate information about their care partners' disease process and prognosis, types and etiology of pain, pharmacological and nonpharmacological pain treatment choices, and essential steps of providing pain management.^{7,18,24–26,30,35,42,50,54,56,62,63} Hence, FCs had difficulty understanding and following prescribed pain management regimens.

FCs had difficulty knowing when to use a particular pain medication and how to evaluate efficacy and side effects.^16,44,53 The lack of knowledge in pain medication left FCs feeling unprepared, confused, and uncertain in their ability to manage medication, resulting in ineffective pain management.^18,38

Eight studies reported that FCs had difficulty deciding which and the amount of as-needed (PRN) medication to give.^{7,16,34,38,44,56,64} Also, studies found that FCs were confused about generic versus brand names of medication and when to give long-acting versus short-acting pain medication.^22,64 FCs made the mistake of crushing long-acting medication, which increases the risk of medication errors.²²

One study reported that 47% of FCs struggled with medication administration, especially dosage, scheduling, and delivery methods.³⁵ Another study found that FCs made PRN pain medication errors (e.g., giving no or lower-than-prescribed dose) 49% of the time and 12% of the time a sedative was given instead of analgesic as FCs were under the false belief that sedation meant pain relief.¹⁰ In addition, only 37% of FCs were adherent to pain medication regimens.¹⁰ Two studies found that care partners with low and moderate adherence levels reported significantly higher levels of pain severity.^10,11

Pain treatments' documentation and organization (n = 7, 13%)

Studies reported FCs encountered challenges in correct documentation, acquisition, storage, tracking, disposal, and handling of pain medication for care partners.^{7,22,25,26,39,64,65}

We found that several FCs lacked a system to track treatments and medication resulting in challenges in administration (e.g., when and which treatments to give), error checking (e.g., determining if a scheduled medication was skipped), and refills (e.g., ordering medication in advance to avoid running out).^7,22,25,64 Utilization of a pain diary to track the level of pain and pain treatment was found to be low, making it difficult for health care providers to evaluate and adjust pain management regimens.^7,25,39

Additionally, safe storage and disposal of pain medication, especially opioids, were not practiced preventing misuse by children, animals, or others.^7,25 FCs were frustrated about not knowing how to properly dispose transdermal patches and unused morphine at home.^22,25,64

Category III: Communication challenges with health care providers

Studies identified poor communication with health care providers as a challenge in pain management.^{7,9,18,22,24–26,39,53,65–67}

Poor communication in pain management (n = 20, 36%)

Studies identified challenges with inadequate information sharing by health care providers about pain management, disease status, and treatment options.^{16,18,24,30,40,43,44,53,65} One study found that 29% of FCs had poor communication with health care providers involving conflicts and lapses.²⁴ A lack of guidance and support from health care providers contribute to communication barriers, ineffective pain management,^7,18,30 and inconsistent pain treatments.³⁰ Health care providers' limited availability and a lack of timely response can further contribute to this communication barrier.^16,39 FCs felt embarrassed to approach health care providers for assistance, especially after regular working hours.^22,41 Two studies suggested that health care providers need to provide complete and accurate disease information, symptom management, and treatment education early on.^39,44

Kimberlin et al³⁹ found that health care providers' paternalistic communication style (where the health care provider has more control and involvement than the FC) was a barrier to pain management communication. Oliver⁹ found that FCs' pain-related concerns were not being adequately mentioned and addressed in interdisciplinary care team meetings. Additionally, FCs' lack of trust in the care team was another contributing factor to poor communication.^42,67

Category IV: Patient-related Issues

Several studies discussed challenges related to patients' issues for instance, patients' beliefs, fears, physical, and mental abilities, which can interfere with FCs' behaviors in pain management.

Reluctance to report pain (n = 13, 24%)

FCs sometimes were not able to assess care partners' pain due to care partners' reluctance to report their pain.^{7,11,16,21,33,34,37,39,47,50,52,58,62,68} Five studies found that patients did not always inform their FCs about their pain, not wanting to increase burden on their FCs or health care providers.^{47,50,52,62,66}

Fear of using pain medication (n = 7; 14%)

Patients' fear of using pain medications is a barrier to effective pain management. Some patients were afraid to use medications due to side effects,^{7,25,37,43,46,50,52} whereas others feared medication-induced addiction,^33,37,39,43 tolerance,³⁹ or stigma of using pain medication.^39,43,52

One study reported that 45.2% of patients experienced adverse effects,⁴³ and some patients tolerated pain to avoid experiencing the side effects of pain medication.^37,50,52

Balancing quality of life and pain management (n = 7, 14%)

Finding a balance between pain relief and the physical and emotional burden of pain management was a concern for both patients and their FCs.^{7,25,36,46,53,62,65}

Inability to report pain (n = 4, 8%)

Four studies reported that some patients faced problems expressing pain verbally, resulting in pain assessment incongruency between patients and their FCs.^7,16,25,30

Impact of providing pain management for care partners on FCs' wellbeing

Several studies also addressed the negative impact of managing a care partner's pain on FCs' physical and psychological wellbeing.

Physical fatigue

FCs felt exhausted and constantly busy, especially those who administered pain medication around the clock.^30,31,54 Pain management duties prevented FCs from having enough time for their own daily activities, self-care, and other responsibilities.^16,17

Psychological wellbeing

Pain management was identified as one of the most distressing caregiving responsibilities. FCs felt unprepared, helpless, and frustrated because they experienced several challenges in managing pain for care partners. Witnessing care partners' pain and suffering was stressful and overwhelming for FCs.^17,18,38 Moreover, FCs were distressed by the responsibility of pain management because they felt the responsibility to be continuously present in case their care partner had breakthrough pain. Some studies found that FCs who had higher levels of anxiety experienced greater difficulty in understanding the use of pain medication.^30,51 In Shanmugasundaram's study, all FCs were dissatisfied with care partners' inadequate pain management and suffering.⁶⁹ Parker Oliver et al reported that 11% of FC participants had bad memories of care partners' unrelieved pain.²⁴

Study quality assessment

Table 3 presents the study quality assessment using the MMAT. Thirty-three studies with a qualitative design were evaluated based on research questions, data collection methods, analysis, and interpretation of findings with 26 studies (78%) meeting all the criteria. Twenty studies with a quantitative descriptive design were appraised based on research questions, adequate data, sampling, representative sample, measurements, nonresponse bias, and analyses. Nine studies (45%) met all the criteria. Two studies (4%) employed mixed methods. These two studies were evaluated based on research questions, adequate data, method justification, data quality, and integration and interpretation of qualitative and quantitative data. They met most of the criteria except that the authors did not fully explain the reasons for conducting a mixed methods study. In each study design, about 45% to 78% of studies met all evaluation criteria, indicating moderate-to-high levels of study quality.

Table 3.

Study Quality Appraisal: Mixed Methods Appraisal Tool

Qualitative design (n = 33)
Study	Clear research questions	Enough data allow to address the research questions	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
Ferrell et al (1991)31	Y	Y	Y	Y	Y	Y	Y	100%
Ferrell et al (1991)58	Y	Y	Y	Y	Y	Y	Y	100%
Mazanec and Bartel (2002)35	N	NA	NA	NA	Y	Y	Y	43%
Schumacher et al (2002)53	Y	Y	Y	Y	Y	Y	Y	100%
Murray et al (2003)62	N	NA	NA	NA	Y	Y	Y	43%
Kimberlin et al (2004)39	Y	Y	Y	Y	Y	Y	Y	100%
Oldham and Kristjanson (2004)54	Y	Y	Y	Y	Y	Y	Y	100%
Terry et al (2006)65	Y	Y	Y	Y	Y	Y	Y	100%
Lau et al (2009)22	Y	Y	Y	Y	Y	Y	Y	100%
Mehta et al (2010)16	Y	Y	Y	Y	Y	Y	Y	100%
Mehta et al (2010)66	Y	Y	Y	Y	Y	Y	Y	100%
Mehta et al (2011)41	Y	Y	Y	Y	Y	Y	Y	100%
Richards et al (2011)79	N	NA	NA	NA	Y	Y	Y	43%
Burton and Zeppetella (2011)52	Y	Y	Y	Y	Y	Y	Y	100%
Baldwin (2013)42	N	NA	NA	NA	Y	Y	Y	43%
Parker Oliver et al (2013)24	Y	Y	Y	Y	Y	Y	Y	100%
Reddy et al (2013)67	Y	Y	Y	N	Y	Y	Y	86%
Kelley et al (2013)7	Y	Y	Y	Y	Y	Y	Y	100%
McPherson et al (2013)17	Y	Y	Y	Y	Y	Y	Y	100%
McPherson et al (2014)50	Y	Y	Y	Y	Y	Y	Y	100%
Mehta et al (2014)18	Y	Y	Y	N	Y	Y	Y	86%
García-Toyos et al (2014)43	Y	Y	Y	Y	Y	Y	Y	100%
Chi et al (2018)25	Y	Y	Y	Y	Y	Y	Y	100%
Han et al (2018)26	Y	Y	Y	Y	Y	Y	Y	100%
Payne et al (2015)44	Y	Y	Y	Y	Y	Y	Y	100%
Tjia et al (2015)64	Y	Y	Y	N	Y	Y	Y	86%
Shanmugasundaram (2015)69	Y	Y	Y	Y	Y	Y	Y	100%
Kirby et al (2018)	Y	Y	Y	Y	Y	Y	Y	100%
Ho et al (2020)49	Y	Y	Y	Y	Y	Y	Y	100%
McFarlane and Liu (2020)48	Y	Y	Y	Y	Y	Y	Y	100%
Eritz and Hadjistavropoulos (2011)23	Y	Y	Y	Y	Y	Y	Y	100%
Tarter et al (2016)30	Y	Y	Y	Y	Y	Y	Y	100%
Dellon et al (2010)40	Y	Y	Y	Y	Y	Y	Y	100%

Quantitative descriptive (n = 20)
	Clear research questions	Enough data allow to address the research questions	Relevant sampling strategy	Representative of the target population	Appropriate measurements	Low risk of nonresponse bias	Appropriate statistical analysis	Percentage of items meeting the criteria
Ferrell et al (1993)36	Y	Y	Y	Y	Y	Y	Y	100%
Berry and Ward (1995)32	Y	Y	Y	Y	Y	Y	Y	100%
Ward et al (1996)37	Y	Y	Y	Y	Y	Y	Y	100%
Fine and Busch (1998)59	Y	Y	Y	Y	Y	Y	Y	100%
Bucher et al (1999)68	Y	Y	Y	Y	Y	NI	Y	86%
Lin et al (2000)33	Y	Y	Y	Y	Y	N	Y	86%
Lin et al (2001)34	Y	Y	Y	Y	Y	Y	Y	100%
Demmer and Sauer (2002)80	Y	Y	Y	Y	Y	N	Y	86%
Allen et al (2002)61	Y	Y	Y	Y	Y	Y	Y	100%
Keefe et al (2003)55	Y	Y	Y	Y	Y	NI	Y	86%
Letizia et al (2004)38	Y	Y	Y	Y	Y	NI	Y	86%
Tu and Chiou (2007)60	Y	Y	Y	Y	Y	Y	Y	100%
Wittenberg-Lyles et al (2013)51	Y	Y	Y	Y	Y	NI	Y	86%
Oechsle et al (2013)57	Y	Y	Y	N	Y	Y	Y	86%
Mayahara et al (2015)45	Y	Y	Y	Y	Y	NI	Y	86%
Wilkie et al (2017)46	Y	Y	Y	Y	Y	Y	Y	100%
Valeberg et al (2016)47	Y	Y	Y	Y	Y	N	Y	86%
Mayahara et al (2014)10	Y	Y	Y	Y	Y	NI	Y	86%
Lee et al (2018)11	Y	Y	Y	Y	Y	Y	Y	100%
Washington et al (2019)63	Y	Y	Y	Y	Y	NI	Y	86%

Mixed methods (n = 2)
	Clear research questions	Enough data allow to address the research questions	Adequate reasons for conducting a mixed methods study	Integrated different components effectively	Interpreted the outputs adequately	Addressed divergences adequately	Adhere to the quality criteria	Percentage of items meeting the criteria
Parker Oliver (2008)9	Y	Y	N	Y	Y	Y	Y	86%
Nayak et al (2018)56	Y	Y	N	Y	Y	Y	Y	86%a

N, no; NA, not applicable; NI, no information; Y, yes.

Discussion

This review comprehensively synthesized the totality of concerns and challenges that FCs face when managing pain for care partners with advanced illnesses. This review identified four major categories of challenges and concerns that FCs experience in managing pain for care partners with advanced illnesses, which validated the four major categories of challenges presented in Kelley's Informal Hospice Caregiver Pain Management Concerns Framework: caregiver-related issues, caregivers' limited knowledge and skills in pain management, communication challenges with health care providers, and patient-related issues. Additionally, this review expanded on Kelley's Framework by elucidating specific challenges and concerns that FCs experience: the need for increased knowledge in verbal and nonverbal pain assessment, decision making on both pharmacological and nonpharmacological pain management treatments, and adequate information regarding administration, documentation, and safe medication management. Many of these challenges have not been fully addressed or discussed in prior literature.²⁰

Previous literature broadly talked about caregivers' limited knowledge and skills in pain management and communication issues but did not fully address the specific knowledge that FCs needed, and FCs' decision making surrounding pain assessment and pharmacological/nonpharmacological pain management treatments.^20,21 Previous studies also did not address patient-related issues.^20,21 This review conducted a thorough review of 55 relevant studies to identify and describe more specific challenges that FCs experienced. The results from this review can provide a framework for future research to develop interventions that target caregivers' specific needs in providing effective pain management.

This review presented a multitude of challenges FCs encounter when providing pain management and highlighted gaps in support and communication with health care providers due to short clinical encounters. Since the COVID pandemic began, many FCs have relied on digital health tools or telehealth to support their caregiving. Future studies can leverage such technologies to develop tailored tools that assist both FCs and health care providers in identifying and assessing challenges in pain management and, ultimately, improve pain outcomes.

In this review, most studies focused on FCs of care partners with advanced cancer while only 16% focused on FCs of care partners with a noncancer diagnosis such as dementia. In community settings, nursing homes, and hospice care, more than 50% of individuals with dementia experience pain regularly.^70–73 In 2020, 26% of FCs in the United States cared for an individual with dementia.² FCs of care partners with dementia experience more challenges in providing effective pain management due to uncertainty of care partners' pain etiology, care partners' decline in cognition, difficulty recognizing care partners' pain based on their nonverbal behaviors, and challenges in evaluating the therapeutic results and side effects of pain treatments provided.^30,71,72 Inadequate pain control can trigger neuropsychiatric symptoms in individuals with dementia, increase health care utilization, and cause poor patient and FC outcomes.^74–76 Given the limited attention in this review to the population of persons with dementia, research is needed that focuses on support of FCs in providing effective pain management for their care partners with dementia.

Pain assessment congruency between FCs and care partners has been identified as an issue, which prevents FCs from giving care partners appropriate pain treatments.^58–60 This is especially problematic for FCs of care partners with multimorbidity, where care partners have complex pain etiologies and use a combination of pain medications.⁵⁰ While about 40% of adults and 90% of older adults in the United States have multimorbidity,^77,78 none of the studies in this review focused on FCs of care partners in this category. Strategies are needed to help FCs acquire essential skills to assess different etiologies of pain and read care partners' verbal and nonverbal cues to manage pain for care partners with multimorbidity. Also, more studies are needed to develop automatic pain recognition to support effective pain assessment.

Limitations

This review was limited to studies published in English and excluded dissertations, nonpeer-reviewed studies, conference abstracts, editorials, and reviews. This review was also limited to nonpediatric populations.

Conclusions

This review comprehensively investigated many challenges that FCs face in managing pain for care partners with advanced illnesses of all diagnoses. It can provide a framework for developing interventions to target caregivers' challenges and concerns in providing pain management.

Additionally, the results showed that only a few studies focused on noncancer populations, and we highlighted a need to further expand current research on caregiving for care partners with dementia and multimorbidity as there is an even greater likelihood of challenges faced by FCs of these care partner population.

Authors' Contributions

N.-C.C. contributed to the design and the concept development of this study, search plan, abstract/full-text review, data extraction, synthesis, interpretation, and article writing. Y.-K.F. contributed to abstract/full-text review, and data extraction, synthesis, and interpretation. L.N. contributed to data organization and article writing. E.B. contributed to data organization and verification. S.G.-W., T.T.-R., and K.H. contributed to the concept development of this study.

Funding Information

This study was supported by the NINR 2T32NR011147-06A1 Pain and Associated Symptoms: Nurse Researcher Training (T32) (PI: Keela Herr; Trainee: Lynn Nakad), and the Woodrow W. Morris Gerontology Research Award for Faculty from the Csomay Center for Gerontological Excellence, University of Iowa (PI: Nai-Ching Chi). The sponsor was not involved in design and conduct of the study; management, analysis, and interpretation of the data; preparation, review, or approval of the article; or decision to submit the article for publication.

Author Disclosure Statement

No competing financial interests exist.

Supplementary Material

Supplementary Appendix SA1

Supplementary Appendix SA2