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

Abstract

Context:

Family caregivers (FCs) of cancer patients play a crucial role in managing their care partner’s pain, but little research has examined FCs’ specific challenges regarding the provision of pain management (PM) to cancer patients receiving palliative care.

Objectives:

To determine the demographic and clinical characteristics of FCs who encounter challenges in PM and to elucidate the specific challenges that FCs face when managing pain for their care partner with cancer.

Methods:

We conducted a secondary analysis of 40 interview transcripts of FCs who were caring for persons with cancer. Interviews were audiorecorded, transcribed verbatim, and analyzed using deductive thematic analysis.

Results:

The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork issues encompassed caregivers’ receipt of inadequate information regarding PM, and inappropriate and ineffective communication from the healthcare team. Caregiver issues pertained to caregivers’ fear and beliefs, concurrent responsibilities, and lack of pain-related knowledge and skills. Patient issues related to their own fear and beliefs, psychological and physiological well-being, adherence to medications, and reluctance to report pain.

Conclusion:

Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.

Introduction

Cancer is the second leading cause of death, with estimated 1.9 million new cancer cases and 0.6 million cancer deaths in the United States (US) in 2022.¹ Pain is a prevalent symptom in cancer populations.² More than 60% of individuals with advanced cancer experience pain and 38% of cancer patients experience moderate to severe pain, so many of them enrolled in palliative care for pain relief to improve their quality of life.^2,3

Estimated 2.8 to 6 million Americans presently serve as a family caregiver (FC, family, relative, or friend) for their care partner with cancer (CPC) on average for 32.9 hours every week.⁴ In palliative care, many FCs assist in pain management (PM) for their adult CPC. PM has been identified as a challenge because it requires FCs to have knowledge and skills in pain assessment and management, as well as requires they overcome their own fear and concerns about PM.^5–7 Unfortunately, we had limited understanding of FCs’ challenges and needs in PM. In the last decade, a couple of studies were conducted to explore FCs’ challenges in PM in palliative care.^8–12 These studies reported FCs were afraid of managing pain and medications, and they needed more information in PM and medications, and strategies to communicate with their care team. However, most of these exploratory studies only included a small sample size of FCs and mainly focused on FCs in Canada, Australia, and Asia. Palliative care services in the US have been expanding and evolving significantly over the last decade, but the current FCs’ needs are not investigated and met, with only few structured and accessible training resources designed to support FCs,^13,14 leaving them struggling in PM without adequate support. Consequently, many FCs encounter numerous challenges in PM, which results in low adherence to PM regimens and consequently inadequate PM among patients with cancer.¹⁵ Inadequate PM leads to poor outcomes for patients (e.g., severe pain) and FCs (e.g., increased stress, anxiety), and increases healthcare utilization (e.g., more ER visits or treatments for uncontrolled pain).^10,16–18

This study, using caregiver interview data from a National Institutes of Health (NIH)/National Cancer Institute (NCI)-funded clinical trial conducted in partnership with a palliative care program in a Midwest academic health system in the US, aims to analyze FCs’ specific challenges when managing pain for their CPC receiving palliative care in the US and answer two questions: (1) What are the demographic and clinical characteristics of FCs who encounter challenges in managing pain? And (2) What are the specific challenges that FCs face when managing pain for their CPC?

Methods

The Original Study

A secondary analysis was conducted of de-identified, individual interviews of FCs who participated in a clinical trial for FCs of patients with cancer receiving outpatient palliative care services from a Midwestern academic health system in the US. Detailed information on the original study has been published.¹⁹ All research activities in parent study and this secondary data analysis study were approved by the University of Missouri Institutional Review Board (Project #2002215) and registered at clinicaltrials.gov (identifier: NCT02427490).¹⁹

FCs participating in the trial were randomly assigned to two groups: usual care or usual care plus a three-session problem-solving intervention. All participants took part in an interview upon exiting the study. Inclusion criteria for the trial included: (1) an adult FC of an adult CPC of any cancer type or stage; and (2) an adult FC of an adult CPC receiving palliative care either concurrent with disease-directed treatment or as a standalone service. All individuals involved in a patient’s care who were defined as a “family caregiver” by the patient could participate without any biological or legal relationship requirement. The interview aimed to learn more about caregiving challenges faced by participants. The questions included in the interview guide are provided in Table 1. Interviews were conducted in person or via telephone and lasted on average about 30 minutes.

Table 1.

Interview Guide.

1. What are some of the problems you face when caring for someone with cancer?

2. Who and/or what do you find helpful when facing caregiving problems?

3. How do you solve caregiving problems?

4. What recommendations do you have for healthcare providers who want to support family caregivers? Are there things your healthcare team currently does that are helpful? Do you have suggestions to help your team provide even better support to family caregivers?

5. Now I’d like you to think specifically about your palliative care team. That includes [palliative nurse practitioner name], [palliative physician name], [palliative social worker name], [other palliative care team member names, as applicable]. Are there things they currently do that are helpful to you as a caregiver? Do you have suggestions to help them provide even better support to family caregivers?

6. How, if at all, did members of your healthcare team talk to you about what to expect with regard to [patient name]’s cancer over time? Who discussed that with you? When? What did the discussion entail? Did you have an idea of what changes to expect in the short-term? In the long-term? How did it feel to be a part of those discussions? What went well in those discussions? What was more difficult?

7. Some people like to have a lot of information about what to expect with regard to a person’s cancer and how it might change over time. Others prefer to take things day-by-day. What’s your preference? Why do you think that is? How, if at all, has your preference changed over time?

8. Sometimes healthcare providers have conversations with patients and/or their caregivers about what types of care they would want if their cancer became very advanced. That discussion may also include considering who would be the best person to make healthcare-related decisions for the patient if they were to become too sick to make those decisions for themselves. Have you or the person you care for discussed anything like that with your healthcare team? [If yes] Would you please tell me about that conversation? [If no] How do you think you would feel about having a conversation like that?

The Secondary Data Analysis and Theoretical Model

All interviews were audio-recorded and transcribed verbatim, and the transcriptions were verified. Qualitative data were analyzed using deductive thematic analysis.²⁰ We adapted our theoretical framework from the “Informal Hospice Caregiver Pain Management Framework.”²¹ The original framework was developed based on a secondary data analysis of 29 FCs’ interviews describing the challenges they faced in managing pain for their care partners in hospice care.²¹ Kelley’s framework addressed five main issues that FCs face when providing PM: caregiver-centric issue, caregiver medication skills and knowledge issues, end-of-life symptom knowledge issues, communication and teamwork issues, and organizational skill issues.²¹ In our study, we used our findings to reorganized and retitled these issues in Kelly’s framework to reflect FC’s challenges in managing pain for their CPC in palliative care.

Three coders (NC, LN, SH) initially reviewed all transcripts and independently coded 20% of the transcripts using themes and subthemes in Kelly’s framework. We subsequently met to discuss our preliminary coding findings and construct a revised coding system to code subsequent data. Each transcript was coded independently by at least two coders. All the transcripts were uploaded and coded on a qualitative software, MAXQDA,²² to enhance the consistency and accuracy of coding process among the coders. All revisions to the coding scheme or changes to individual coding decisions were made by a consensus of the coders and team members with expertise in palliative care (YH, KW, DO, GD), pain management (YH, NC, CR), and family caregiving (NC, CR, KW, DO, GD). When coding was completed, segment coding frequencies were calculated, and themes were defined and described. Two coders (NC, LN) reviewed all of the themes and coded excerpts to select representative quotations to present in this manuscript. Trustworthiness in the analysis was assured through verification of transcripts and interview data before coding, at least two coders to code each transcript independently, using a qualitative software to standardize coding process, and an audit trail.²³

Results

Participant Characteristics

We analyzed all the transcripts from the interview data from both control and intervention groups. Forty FCs discussed their challenges in managing pain for their CPCs. FC demographic data is presented in Table 2. The average age of FCs was 77 years old. Most FCs were female, Caucasian, college-educated or higher, and spouses/partners or parents of their CPC. Most FCs spent over 20 hours a week providing care for more than one year.

Table 2.

Family Caregiver Characteristics (N = 40).

Characteristic	n (%)
Age, mean	77
Gender
• Female	28 (70)
• Male	12 (30)
Relationship to patient
• Spouse/Long-term partner	21 (52.5)
• parent	9 (22.5)
• Child	4 (10)
• Sibling	3 (10)
• Friend	1 (2.5)
• Other	3 (5)
Caregiver race
• White/Caucasian	40 (100)
• Non- Hispanic/Latino	40 (100)
Education
• High school	14 (35)
• Some college	11 (27.5)
• Associate degree	6 (15)
• Bachelor degree	4 (10)
• Graduate degree	3 (7.5)
Marital status
• Married	28 (70)
• Divorced	5 (12.5)
• Single	6 (15)
• Separated	1 (2.5)
• Other	1 (2.5)
Employment
• No paid employment	22 (55)
• Full time paid employment	15 (37.5)
• part time paid employment	3 (7.5)
Average caregiving hours/per week
• >20 hours	18 (45)
• 11–20 hours	10 (25)
• 5–10 hours	8 (20)
• <5 hours	4 (10)
Length of being a caregiver
• >3 years	11 (27.5)
• 2–3 years	4 (10)
• 1–2 years	5 (12.5)
• 6–12 months	5 (12.5)
• 2–6 months	10 (25)
<1 month	5 (12.5)
Work Accommodation due to caregiving Responsibility
• Cut back on hours/quit work	12 (30)
• Used own sick leave/vacation time	10 (25)
• Taken job or worked more hours	4 (10)
• changed jobs	3 (7.5)
• Taken leave of absence from work	2 (5)

The 40 FCs cared for 40 CPCs receiving palliative care, CPCs’ clinical and demographic data present in Table 3. The average age of the CPCs was 59.3 years old. Most of them were female, Caucasian, and married. Two most common cancers were lung cancer and colorectal cancer. Other common co-existing chronic conditions include liver disease, lung disease, diabetes, heart disease, and stroke (Table 3).

Table 3.

Care Partner Characteristics (N = 40).

Characteristic	n (%)
Age, mean	59.3
Gender
• Female	22 (55)
• Male	18 (45)
Race
• White/Caucasian	38 (95)
•Non-Hispanic/Latino	2 (5)
Marital status
• Married	28 (70)
• Divorced	7 (17.5)
• Widowed	3 (7.5)
• Single	1 (2.5)
• Separated	1 (2.5)
Diagnoses
• cancer	40 (100)
• Liver disease	5 (12.5)
• Lung disease (non-cancer, e.g., COPD)	4 (10)
• Diabetes	3 (7.5)
• Heart disease	2 (5)
• Stroke	2 (5)
Types or sites of cancer
• Lung cancer	14 (35)
• colorectal cancer	10 (25)
• Breast cancer	7 (17)
• Prostate cancer	4(10)
• Head/Neck cancer	3(7.5)
• Pancreatic cancer	3(7.5)
• Ovary cancer	3(7.5)
• Endometrial cancer	3 (7.5)
• Kidney cancer	3 (7.5)
• Melanoma	2 (5)
• Bladder cancer	1 (2.5)

Themes and Findings

We adapted the “Informal Hospice Caregiver Pain Management” framework²¹ to fit into our themes and data. We retitled and reorganized the categories to describe more specific challenges in each identified category. Our identified challenges were grouped into three major categories including communication and teamwork issues (n = 43 segments from 17 FCs), caregiver-related issues (n = 23 segments from 13 FCs), and patient-related issues (n = 17 segments from 10 FCs). Detailed major themes, subthemes, and segment exemplars list in Table 4.

Table 4.

Participants’ statements for each theme.

Major theme 1: Communication and teamwork Issues
1. Inadequate guidance regarding PM from the care team	P002 “Like why [my CPC] isn’t without pain and why can’t [the provider] raise her medicine?” P031 “If [providers] would say, ‘you can take too much of this and it can make you not feel well and you need to be a little careful as you increase it, but don’t worry about getting addicted’ I think it would have been a good thing because that’s what you see on TV and on news reports that the high number of people that are addicted to prescribed medication.” P068 “[my CPC is] afraid that [chemotherapy] is going to make her pain so much worse she won’t be able to stand it. I believe the doctor could have spent a little more time on explaining because she’s expecting answers from her doctor.”
2. Inadequate communication amongst care teams	P013 “the palliative care team should have sufficient time to talk to the oncology team…[when they don’t] then you have two different game plans. I think they probably need to communicate before the next team comes in and develops a different game plan.”
3. Inappropriate communication from the healthcare team	P010 “When we went in and seen [the provider] he just looked at [the patient] like he was a junkie, that he just wanted pain medication and, because it was 5:30 in the morning, he couldn’t hold nothing down.”
4. Ineffective pain management plan	P071 “[the providers] had [my CPC] on a pain patch and she was also taking two different pain medications in a day but the more she healed the less pain she had and with the patch on, and she was loony. She was not able to focus. Her blood pressure got pretty low […]. When taken off the pain patch, she was able to recover.”
Major theme 2: Caregiver-related Issues
1. Fear and beliefs	P031 “I think it was my fear more than [the patient’s] that he might get too much medication, he was going to get addicted and then finally he said “Well, I really don’t care, which is a good stand to take because why worry about addiction when you have less than a year to live? Why not be comfortable? So he took pain medicine more liberally, which was a good thing because he would finally get feeling pretty good and we were able to do things.”
2. Concurrent responsibilities	P027 “trapped, in prison. Actually, that week I needed a haircut really bad, there was [some] thing I needed from the store, and I didn’t have anybody or any way to get away.” P052 “when I’m working, he’s kind of responsible for taking his own medicine and he won’t take it. I called him and he didn’t take it. He said he fell back asleep and didn’t take it, so I got really frustrated with him that day and then the pain just catches up with him.”
3. Caregiver pharmacology knowledge and medication skills	P002:“ Sometimes I get on the internet and look things up just to see what their opinion is or what they would do, like on WebMD…mostly what other kind of medication [the patient] could be on.” P031: “I Googled a lot of things and, you know, healthcare providers sometimes hate Google because people find such silly things, but I did use that some.”
4. Organizational skills	P011: “She was trying to take too many, which we worked out a process to where, I gave them to her. You know, she had access to all of her medicine, she overdid it, and she overdid that like three different times, and then we did it to where I gave them to her one at a time each time.”
Major theme 3: Patient-related Issues
1. Fear and beliefs	P036 “[the patient’s] so terrified because she’s had friends in the past who are drug abusers, although she never has been, that she’s terrified of being tracked in the system as somebody who’s trying to get drugs that she will do anything to avoid that. So, she tried to take herself off of that medicine after her thoracotomy.”
2. Psychological and physiological well-being	P031: “The pain, he [my CPC] was experiencing, we had trouble getting that under control and then new, the cancer spreading and the emotional energy it took to, you know, to deal with those things”
3. Poor adherence to pain medications	P036: “A few weeks later terrible problems, sweating, pain, everything else so I drag her to the hospital, just beg her to the hospital. She couldn’t breathe, and what happened was she was trying to take herself off of her medicine too fast.” P052 “[my CPC]’s on this medication that takes care of [the pain] but he forgets to take it. I finally, last night I said ‘Have you taken this today,’ and he said ‘No.’ I said ‘you know, I guess every time I take my medication I guess I’m going to remind you to take yours.’ And so he’s been going pretty good today.”
4. Reluctance to report pain	P011 “I never got [my CPC] to be willing to report symptoms, and every time I’d force her to do it and, I mean, we have a, just almost a knock-down drag-out.”

Major theme 1: Communication and teamwork Issues (n = 43 segments from 17 FCs).

FCs found that ineffective communication among professionals in the care team, or between FCs and their care team interfered with their ability to provide PM.

• 1Inadequate guidance regarding pain management from the care team

Several participants discussed instances in which they perceived that they had received inadequate information regarding PM and pain medications from their providers, with some describing how this led to inappropriate PM.

One participant (P007) expressed frustration with a lack of adequate education regarding pain medications prescribed to the patient prior to hospital discharge. One participant (P002) mentioned they would like to have more information from providers. Another participant (P031) discussed a lack of proper information on the risk of addiction from pain medications. One participant (P068) discussed how a lack of proper information on PM from their provider led to a patient being too afraid to go to their first chemotherapy session.

• 2Inadequate communication amongst care teams

Sometimes healthcare care teams did not adequately communicate amongst themselves and presented conflicting information to FCs and patients regarding pain treatment plans). One participant (P013) stated, “the palliative care team should have sufficient time to talk to the oncology team… [when they don’t] then you have two different game plans. I think they probably need to communicate before the next team comes in and develops a different game plan.”

• 3Inappropriate communication from the healthcare team

Participants described inappropriate communication, such as mistreatment and bias/stigma from providers leading to inadequate PM. One participant (P010) described experiencing stigma of medication abuse from a provider that the participant believed to be because they were homeless.

• 4Ineffective pain management plan

Some issues were related to ineffective PM plans from the care team. Several participants discussed a variety of situations in which inadequate PM, both under- and over-treatment of pain, was provided to the patient. One participant (P071) discussed how the CPC experienced adverse effects from being overmedicated with opioids. Another participant (P062) described a challenge in finding a balance of adequate pain relief and side effects.

Major theme 2: Caregiver-related Issues (n = 23 segments from 13 FCs).

Several of identified challenges to PM were related to caregivers’ issues or characteristics.

• 1Fear and beliefs

Some FCs’ fears and beliefs may prevent FCs from providing timely and adequate pain relief for their CPCs. A common fear identified by participants was abuse or overuse of pain medication that might lead to tolerance, dependence, or addiction.

One participant (P031) expressed an initial fear that the patient might get too much pain medication and get addicted. In addition, many other caregivers expressed fear and worry towards managing their CPCs’ pain, the task seeming overwhelming. When asked what worried them when their CPC experienced pain, one participant (P045) expressed that the entire experience was worrisome.

• 2Concurrent responsibilities

A couple of participants expressed their concurrent responsibilities as a significant challenge to managing pain. One participant described how the demanding task of PM made her feel like. The participant expressed wishes to take a break or vacation but indicated that she/he was unable to do so due to managing his/her care partner’s pain medication and proximity to death. Another participant (P052) explained that when at work, the CPC was responsible for taking medication but often wouldn’t.

• 3Caregiver pharmacology knowledge and medication skills

Another identified challenge to PM for FCs is an inadequate knowledge of pharmacology and medication skills. Participants discussed that a lack of knowledge regarding pain medications led to efforts to seek out information independently. A couple of participants sought out information from Google searches or WebMD despite recognizing that it could provide somewhat unreliable information.

• 4Organizational skills

Participants described challenges with continuously tracking pain medications scheduled around the clock, as well as safety issues related to medication tracking and access. One participant (P011) discussed issues with the CPC’s medication abuse.

Major theme 3: Patient-related Issues (n = 17 segments from 10 FCs).

Participants identified some patient relevant issues and characteristics that affected their PM.

• 1Fear and Beliefs

Participants discussed issues regarding patient fear and beliefs surrounding pain and end-of-life, which might interfere with PM. A couple of participants discussed patient fears about pain medication due to addiction and drug abuse. One participant (P036) discussed how a patient stopped taking pain medication after a procedure due to these fears.

• 2Psychological and physiological well-being

FCs noticed that their CPCs’ disease progression and a decline in psychological and physiological well-being can interfere with PM. One participant (P031) shared: “The pain, he [my CPC] was experiencing, we had trouble getting that under control and then new, the cancer spreading and the emotional energy it took to, you know, to deal with those things.”

• 3Poor adherence to pain medications

Several participants discussed that their CPC’s poor adherence to pain medications may lead to ineffective PM and more healthcare use. One FC (P036) talked about that the CPC went through withdrawals from taking herself off pain medications. FCs addressed their CPCs sometimes forgot to take pain medications.

• 4Reluctance to report pain: Some FCs indicated that their CPCs did not want to report their pain.

Discussion

This study was one of the few studies that analyzed specific challenges family caregivers face in managing pain for patients with cancer who received palliative care. The data came from interviews with FCs for an NIH/NCI-funded clinical trial conducted in a Midwest academic health system in the US. The results of this study can be used as a framework to design interventions to support FCs in managing pain in palliative care settings.

Most of the demographic characteristics of FCs in this study were similar to the FC cohort from the national report: old white female caregivers.⁴ But the average age of our sample (77 years old) was older than the average age of national sample (50 years old).⁴ The possible explanation might be because most of our FCs took care of their spouses/ partners or adult children in palliative care. A previous study found less educated FCs had greater concerns about PM.²⁴ However, many of our FCs who were college-educated still encountered many challenges in PM. Future research can investigate specific challenges for different subgroups of FCs so we can design target interventions more strategically.

The three major identified challenges to PM for FCs of persons with cancer were: (1) communication and teamwork issues, (2) caregiver-related issues, and (3) patient-related issues. Communication and teamwork was the most commonly mentioned issue by the FCs in this study. Unlike studies in palliative care,¹¹ the FCs in our study not only addressed lacking adequate communication between FCs and providers, but also ineffective communication among their care team members resulting in ineffective PM plan. Effective PM and palliative care requires interdisciplinary team care approaches and transparent communication. Interventions that can facilitate effective communication among care team members are needed. Study findings also emphasize the need for FCs to understand the rationale behind clinicians’ decision making. The study participant whose CPC had poorly controlled pain but was deemed to be ineligible for increased pain medication provides a useful example of this need. There may have been a medically appropriate reason for the clinician’s unwillingness to increase the patient’s pain medication; however, absent an explanation for the clinician’s decision, it is easy to see how the FC might conclude that the clinician provides suboptimal care.

The second most commonly endorsed challenge in this study is caregiver-related issues including fear and beliefs, concurrent responsibilities, pharmacology knowledge and medication skills, and organizational skills. The most prominent fear was the concern for abuse or overuse of pain medication that might lead to tolerance, dependence, or addiction in their CPC. FCs also expressed a lack of pharmacologic knowledge and medication skills as a challenge to providing PM. Participants discussed supplementing knowledge by seeking out information online using google or WebMD. The findings were consistent with a prior literature review by Dr. Meeker in 2011.⁷ FCs need structured and reliable information in PM to expel their concerns in PM and provide them with basic knowledge in pain medications and pain treatments. Currently, only a few interventions have been developed specifically to support FCs in managing pain.¹³ However, the content and length of these interventions are varied, and their efficacy have not been tested and implemented in clinical settings.⁷ The development and implementation of accessible digital platform to provide tailored support assist both FCs and health care providers in identifying and assessing challenges in PM and, ultimately, improve pain outcomes.

FCs also described their endorsement of beliefs (e.g., fear of addiction) that have been repeatedly identified as barriers to effective cancer PM.²⁵ Despite a plethora of studies stressing the need for proactive identification and discussion of beliefs that are well-known to interfere with effective PM, routine assessment of such barriers remains infrequent in palliative care.²⁵ Organizational skills are critical for FCs to effectively keep track of PM, medications, and treatments provided at home. Providers can introduce methods and tools for FCs such as using pain diary to keep track of pain medications used and changes in patients’ pain. Additionally, FCs need to learn how to safely store pain medications at home and return leftover pain medications following the most current policy to avoid medications being stolen or misused by others.

FCs also brought up challenges specific to patient-related issues. Some FCs discussed issues regarding patient fear and beliefs, which might interfere with PM. These include fears related to pain medication abuse and addiction and end-of-life symptoms. Another challenge related to how a care partner’s disease progression and a decline in mental and physical well-being impeded PM. Individuals with cancer who are too drowsy to stay awake may be unable to oversee their own PM regimen, even if they would ordinarily be able to do so. Furthermore, individuals receiving palliative care concurrent with disease-modifying treatments may experience cognitive changes (e.g., so-called “chemo-brain”) that limit their ability to manage medications.²⁶ These limitations, which are often beyond the control of the individual with cancer, may be frustrating to FCs, particularly if they are uneducated about them ahead of time and/or if they lack an understanding of them as an expected part of the illness trajectory. Several FCs also discussed the challenge of CPS’ reluctance to report pain, a common occurrence in cancer care that may be best addressed by a biopsychosocial approach, such as the one offered by palliative care providers.²⁷ This study can provide insights for palliative care professionals and other healthcare providers to assess and address patient-related issues to enhance the quality of PM.

Limitations

This study has some limitations related to being a secondary analysis of existing study data. The present study’s purpose and, consequently, its interview guide focused on FCs’ communication with healthcare teams and did not focus on challenges specific to pain. This likely led to the overrepresentation of communication challenges and underrepresentation of other types of challenges FCs experience with PM. In addition, participants in the original study were demographically homogenous, particularly with regard to race and ethnicity, limiting the generalizability of our study findings. Finally, all data were provided by FCs and, thus, reflect their understanding and recollection of their caregiving experiences as they reported them. Additional research, incorporating a broader range of perspectives (e.g., perspectives of patients, clinicians), is needed to fully understand barriers and facilitators of effective PM for individuals with cancer receiving palliative care.

Implications for Future Research and Practice

The findings of this study have implications for future research and practice related to cancer PM in palliative care. Currently, few PM interventions have taken FC and patient-related issues into consideration for their design. An in-depth understanding of these identified challenges would help focus interventions on addressing real-world barriers faced by individuals with cancer and their FCs, such as communication challenges between the care team and FCs, the need to improve pain education for FCs, and the importance of addressing FC and care partners’ medication concerns including stigma, overuse, withdrawal, and addiction. In addition to developing more targeted interventions for FCs, these findings can direct guideline development and clinical resources to help providers prepare, educate, and communicate with FCs regarding PM.

Conclusion

Findings of this study have implications for future research and practice related to cancer PM in palliative care. Results suggest the need for FC training in PM as well as clear clinical practice guidelines and resources to help providers prepare, educate, and communicate with FCs regarding PM.