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Accepted Manuscript

Communicating Caregivers’ Challenges with Cancer Pain Management: An Analysis


of Home Hospice Visits

Claire J. Han, PhD, RN, Postdoctoral fellow, Nai-Ching Chi, PhD, RN, Assistant
professor, Soojeong Han, MN, RN, PhD, student, George Demiris, PhD, FACMI,
Professor, Debra Parker Oliver, PhD, MSW, Professor, Karla Washington, PhD,
LCSW, Assistant professor, Margaret F. Clayton, PhD, APRN, Associate professor,
Maija Reblin, PhD, Assistant professor, Lee Ellington, PhD, Professor

PII: S0885-3924(18)30011-3
DOI: 10.1016/j.jpainsymman.2018.01.004
Reference: JPS 9699

To appear in: Journal of Pain and Symptom Management

Received Date: 4 October 2017


Revised Date: 4 January 2018
Accepted Date: 10 January 2018

Please cite this article as: Han CJ, Chi N-C, Han S, Demiris G, Oliver DP, Washington K, Clayton MF,
Reblin M, Ellington L, Communicating Caregivers’ Challenges with Cancer Pain Management: An
Analysis of Home Hospice Visits, Journal of Pain and Symptom Management (2018), doi: 10.1016/
j.jpainsymman.2018.01.004.

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ACCEPTED MANUSCRIPT
Communicating Caregivers’ Challenges with Cancer Pain Management: An Analysis of
Home Hospice Visits
Running head: Communicating Challenges with Cancer Pain Management

Claire J. Han1,*, PhD, RN, Postdoctoral fellow


Nai-Ching Chi2, PhD, RN, Assistant professor
Soojeong Han3, MN, RN, PhD student
George Demiris4, PhD, FACMI, Professor
Debra Parker Oliver5, PhD, MSW, Professor
Karla Washington5, PhD, LCSW, Assistant professor

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Margaret F. Clayton6, PhD, APRN, Associate professor
Maija Reblin7, PhD, Assistant professor
Lee Ellington6, PhD, Professor

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1Biobehavioral Cancer Prevention and Control Training Program, University of Washington,
School of Public
health, Seattle, WA, USA.
2University of Iowa, College of Nursing, Iowa City, IA, USA.

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3University of Washington, School of Nursing, Seattle, WA, USA.
4University of Pennsylvania, School of Nursing, Philadelphia, PA, USA.
5University of Missouri, School of Medicine, Family and Community Medicine, Columbia,
MO, USA.

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6University of Utah, College of Nursing, Salt Lake City, UT, USA.
7Moffitt Cancer Center, Department of Health Outcomes and Behavior, Tampa, FL, USA.
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*Please address all correspondence to:
Claire J. Han, PhD, RN, Postdoctoral fellow.
Biobehavioral Cancer Prevention and Control Training Program.
University of Washington, School of Public Health, Seattle, WA, USA.
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Telephone 425-773-7492
Fax: 206-221-2671
E-mail: jyh0908@uw.edu
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Conflict of interest:
The author declared no potential conflicts of interest with respect to the research, authorship,
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and/or
publication of this article.
Funding:
 This was not an industry supported study. The authors received no financial support for
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the research,
authorship, and/or publication of this article (secondary data analysis).
 The secondary data for the current study were derived from a large National Cancer
Institute of the
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National Institutes of Health funded parent project (P01CA138317, at the University of Utah,
Salt Lake City,
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UT).
 This study was also supported in part by the National Institute Health National Library of
Medicine (NLM)
Training Program in Biomedical and Health Informatics (Grant NR. T15LM007442), and
National Cancer
Institute (NCI) Cancer Prevention and Control Training Program (Grant NR. 5T32CA092408-
17) at the
University of Washington, Seattle, WA.
 The authors have no conflicts of interest to declare.
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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 1

2 Abstract

4 Context: Family caregivers of hospice cancer patients face significant challenges related to

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5 pain management. Addressing many of these challenges requires effective communication

6 between family caregivers and hospice nurses, yet little empirical evidence exists on the nature

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7 of communication about pain management between hospice nurses and family caregivers.

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Objectives: We identified ways in which family caregivers of hospice cancer patients

9 communicated their pain management challenges to nurses during home visits and explored

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nurses’ responses when pain management concerns were raised.

11 Methods: Using secondary data from audio-recordings of hospice nurses’ home visits, a
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12 deductive content analysis was conducted. We coded caregivers’ pain management challenges

13 and immediate nurses’ responses to these challenges.


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14 Results: From 63 hospice nurse visits, 101 statements describing caregivers’ pain
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15 management challenges were identified. Thirty percent of these statements pertained to


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16 communication and teamwork issues. Twenty-seven percent concerned caregivers’ medication

17 skills and knowledge. In 52% of the cases, nurses responded to caregivers’ pain management
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18 challenges with a validating statement. They provided information in 42% of the cases. Nurses

19 did not address 14% of the statements made by caregivers reflecting pain management
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20 challenges.
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21 Conclusion: To optimize hospice patients’ comfort and reduce caregivers’ anxiety and burden

22 related to pain management, hospice nurses need to assess and address caregivers’ pain

23 management challenges during home visits. Communication and educational tools designed to

24 reduce caregivers’ barriers to pain management would likely improve clinical practice and both

25 patient- and caregiver-related outcomes.

26 Keywords: caregivers, cancer, pain management, health communication, hospice


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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 2

1 Introduction

2 An estimated 1.4 million patients received the end-of-life (EOL) hospice care services in

3 the United States in 2015.1 The majority (98.1%) of days of care were at the homecare level,

4 and 56% of days of care were provided at home hospice in 2015.1 Home hospice care has

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5 continued to grow in recent years, given the preference of many patients to die at home.2

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6 Cancer patients made up the largest percentage of hospice admissions (27.7%) in 2015

7 compared to other chronic diseases such as dementia (16.5%) and chronic heart failure

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8 (19.3%).1

9 In the United States, hospice is a predominantly community-based service. While more

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10 intensive staffing is available on a limited basis during medical crises, routine hospice care is
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11 coordinated by hospice nurses who make regular visits to the home with the support of other

12 team members, nursing aides, social workers, and chaplains.3 Thus, the delivery of home
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13 hospice care is largely dependent upon home hospice nurses and family caregivers (FCGs),

14 namely the family members, friends, and others who volunteer to care for the patient at EOL. In
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15 addition to numerous other tasks, many hospice FCGs are actively involved in pain
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16 management, particularly for cancer patients, and experience significant challenges in

17 managing patients’ cancer-pain.4 They report concerns about pain medication side effects, the
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18 effectiveness of pain regimens, and pain assessment.4

19 A limited number of qualitative studies examined caregivers’ cancer-pain management


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20 concerns in hospice.3,5-9 Many FCGs’ experienced challenges in communicating with hospice


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21 providers such as unclear or little communication, low accessibility to physicians, lack of

22 education, and uncertainty about goals of care.3,5-9 Poor communication with hospice providers

23 about pain concerns is problematic, contributing to caregiver distress and suboptimal symptom

24 management.10 One recent systematic review for FCGs’ pain management challenges4

25 identified that the poor communication between FCGs and hospice care providers was one of
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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 3

1 the major barriers of FCGs in managing cancer-pain in hospice care. For example, poor

2 communication with hospice providers resulted in inadequate knowledge and assessment skills

3 in pain management, misunderstanding of pain medications, and limited engagement in pain

4 management.4 In systematic reviews11,12 for pain management in patients with cancer, there

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5 was a dearth of effective interventions of pain management for FCGs in hospice settings. In

6 both reviews,11,12 effective communication was highlighted as an important strategy for

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7 overcoming barriers in pain management. Previous qualitative studies for FCGs experiences in

8 hospice13-15 reported that improved communication between hospice nurses and FCGs can

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9 reduce the burden of pain management, can increase access to information, and practical and

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emotional support for the caregivers, and can help ease the overall burden of hospice care

11 among FCGs.
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12 Despite the identified importance of communication in managing hospice patient pain,

13 little research has focused on how hospice nurses and FCGs interact to address pain
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14 concerns.16 This lack of systematic examination precludes identification of links between


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15 specific communicative practices and clinical outcomes, and weakens efforts to improve nurse-
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16 caregiver communication. To contribute to the knowledge base in this area, we conducted a

17 study designed to answer two research questions: 1) How do FCGs of cancer patients
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18 communicate their pain management challenges to hospice nurses during home visits? and 2)

19 How do hospice nurses respond to FCGs’ pain management challenges when they are
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20 expressed?
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21 Methods

22 Study Design, Data Source, and Participants

23 This study involved the secondary analysis of digitally recorded and transcribed home

24 hospice nurse visits. With Institutional Review Board approval and a Data Use Agreement

25 between the University of [blinded for review], and the University of [blinded for review], a

26 subsample of hospice nursing visits was drawn from a large parent study addressing hospice
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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 4

1 cancer caregiving (Grant Nr. [blinded for review]; Program PI: [blinded for review]; Project Lead:

2 [blinded for review]). In the parent study, nurses from hospice programs in four geographically

3 diverse regions across the United States provided written informed consent to audio-record their

4 visits with consenting hospice cancer patients and families. Additional details of the larger study

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5 are available elsewhere.14 A stratified subsample of 65 nurse visits was selected for maximum

6 variance based on years of nursing experience, nurse race, and nurse gender. The audiotaped

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7 visits were transcribed verbatim. Sixty-three of the 65 transcripts contained extensive

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communication significant for coding, and two were excluded because of their brief content.

9 Data Analysis

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In a deductive content analysis of transcripts, pain management challenges were coded

11 using an existing framework comprising six themes.7 We coded pain management barriers
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12 experienced by caregivers as well as immediate nurses’ responses to each of the identified

13 utterances. For a deductive qualitative analysis, we used a conceptual framework by Kelley et


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14 al.7 outlining caregivers’ pain management issues. Kelley et al.7 developed a conceptual
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15 framework of six major themes with subordinate subthemes regarding FCGs’ pain-related
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16 concerns in hospice. The identified themes of the Kelley et al.’s framework include: 1) caregiver-

17 centric issues, 2) caregiver’s medication skills and knowledge, 3) EOL symptom knowledge
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18 issues, 4) communication and teamwork issues, 5) organizational skill issues, and 6) patient-

19 centric pain issues. The theme ‘caregiver-centric issues’ included issues related to FCGs that
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20 might interfere with their ability to manage pain. The theme, ‘caregiver medication skills and
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21 knowledge’, deals with pain management challenges arising from caregivers’ lack of knowledge

22 of pain medication (e.g., polypharmacy issues, medication side effects, medication

23 administration). The theme, ‘EOL symptom management and assessment issues’ describes

24 caregivers’ challenges in understanding and assessing patients’ symptoms in the terminal

25 disease phase. The theme, ‘communication and teamwork issues’, addresses pain

26 management challenges related to teamwork and communication among FCGs, patients,


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1 healthcare delivery systems, family members, and support networks.10 The theme,

2 ‘organizational skill issues’, describes barriers presented by caregivers’ organizational skills of

3 pain management. Lastly, the theme, ‘patient-centric pain issues’, deals with barriers related

4 to the patients’ total pain load, such as patients’ physical and psychological well-being. This

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5 framework7 establishes a foundation for evaluating pain-related concerns as well as for guiding

6 interventions to support FCGs. Therefore, we analyzed and synthesized our data by mapping

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7 communication about cancer pain-related concerns from actual home hospice visits to the

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elements of this framework.

9 Immediate nurses’ responses were coded based on the type of responses, namely

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whether the nurse “provided validation” (i.e., acknowledged or recognized the caregivers’

11 thoughts, feelings, and behaviors as understandable), “provided information” to address the


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12 concern or question, or “did not address the concern”.

13 Before coding the entire data set, three reviewers (C.H., S.H., and N.C.) were trained to
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14 apply the existing coding framework by a senior author (G.D.). Then, we randomly selected 6
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15 transcripts as 10% of total recordings for the three reviewers (C.H., S.H., and N.C.) to code to
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16 confirm accurate data extractions of pain management challenges and to examine intercoder

17 reliability. Next, the three reviewers were paired so that they independently coded each
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18 transcript and checked intercoder reliability between the two reviewers of each pair. We also

19 looked for dialogues about pain management challenges that did not clearly fit with the 6
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20 themes included in the conceptual framework. To ensure intra-coder reliability, the first author
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21 (C.H.) coded all the transcripts and then recoded 70% of the transcripts at a later time. The

22 mean agreement rate among the three reviewers was 85% for 63 transcripts. Weekly meetings

23 were held to resolve discrepancies of coding and to select exemplars of each theme among the

24 reviewers, ultimately reaching 100% agreement.

25 Results
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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 6

1 The mean duration of 63 home visits by 65 hospice nurses was 38 minutes (range: 11

2 to 95 minutes). The majority of nurses were female (91%), Caucasian (74%) with associate’s

3 degree (63%). The mean age of the hospice nurses was 44.2 years old (range: 25 to 69 years

4 old). Participants reported an average of 13.6 years’ experience as a registered nurse (range: 1

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5 to 46 years) and 3.3 years’ experience as a hospice registered nurse (range: 1 to 21 years).

6 Caregivers’ Communication Challenges with Cancer-Pain Management

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7 All 6 major themes from Kelley et al.’s7 existing framework of hospice caregiver pain

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management challenges were identified. Examples of quotations illustrating 6 major themes

9 along with subthemes are presented in Tables 1, 2, 3, and 4. Pain management challenges

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were discussed in 26 of the 63 visits (41.3%). A total of 101 statements reflecting pain

11 management challenges were identified and coded in these 26 visits. The most frequently
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12 coded theme was communication and teamwork issues (17 home visits, 30% of 101 statements

13 reflecting pain management challenges), followed by caregiver medication skills and knowledge
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14 issues (15 visits, 27% of statements reflecting pain management challenges) (Table 5).
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15 Hospice Nurses’ Responses to Caregivers’ Cancer-Pain Management Challenges


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16 We labeled hospice nurses’ responses to FCGs’ pain management challenges with

17 three codes: “Providing validation”, “Providing information”, or “Not addressing concerns.” We


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18 labeled the case when a nurse responded with two communication styles with “Mixed-type.”

19 For example, nurses immediately provided validation to the pain-related concerns, then, they
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20 provided information to answer FCGs’ queries. Tables 1, 2, 3, and 4 provide examples of each
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21 of the four types of nurse responses. Table 5 is a matrix that shows the response to each type

22 of pain management challenges. In most cases, nurses responded with a validating statement

23 (52%) (acknowledging the challenge or communicating that the challenge was understandable),

24 or they provided information (42%) in response to a caregiver’s challenge. In 14% of the cases,

25 they did not respond or address the caregiver’s pain management challenge. Seven of 101

26 pain management challenges were communicated with “Mixed-type” nurses’ responses. As


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COMMUNICATING CHALLENGES WITH CANCER-PAIN MANAGEMENT 7

1 shown in Table 5, nurses provided mostly validation when caregivers described challenges

2 related to communication and teamwork issues, caregiver-centric issues, or organizational skill

3 issues. Nurses provided information most often in response to challenges related to caregivers’

4 medication skills and knowledge issues, or patient-centric issues.

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5 Discussion

6 This study provides insights into patterns of communication between nurses and FCGs

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7 about caregivers’ pain management challenges. By applying an existing framework,7 we found 6

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themes of pain management challenges reported by FCGs to hospice nurses during home visits.

9 Challenges related to communication and teamwork, and caregivers’ medication skills and

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knowledge were the most frequently raised by FCGs. In terms of nurses’ responses to these

11 challenges, we found that the most common approach was “Providing validation” or “Providing
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12 information.” To our knowledge, our study is the first to explore communication patterns

13 focusing on FCGs’ pain-related concerns in home hospice. Our findings highlight the need for
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14 communication improvement in addressing cancer-pain during the home hospice visit.


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15 “Providing validation” was the most frequently observed nurses’ responses in our study.
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16 However, this validation was often in the form of a quick and superficial response indicating

17 agreement with what had been said, such as “yeah”, “right”, “good”, “yes”, “sure”, or “okay.”
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18 (Table 1). Validation is more meaningful when it is individualized, ranging from providing

19 complete attention to reflection of statements, identification of possible unexpressed emotions,


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20 and normalization.17 In one meta-analysis of 78 intervention studies for FCGs in hospice care,18
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21 the most effective way to address FCGs’ concerns was through increasing ability and

22 knowledge. Thus, “Providing information” in response to FCGs’ challenges should be followed

23 by “Providing validation” to reduce their anxiety and increase their confidence such as “Mixed-

24 type” response (Table 4). Furthermore, in cases where FCGs demonstrate emotional distress,

25 nurses can also provide brief counseling and/or refer FCGs to community resources, social

26 workers, and/or hospice chaplains, along with validating their feelings via deeper and more
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1 meaningful acknowledgements using advanced validation skills (e.g., “That must have been a

2 difficult decision for you.”).19 Efforts to provide such effective validation can empower FCGs and

3 support effective problem-solving and family-centered communication in challenges in pain

4 management.17

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5 In our study, FCGs were willing to be actively involved in problem-solving and decision

6 making to take action for their pain-related concerns (Table 2: e.g., How is it? what can I do for

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7 him? how to help him? any better ways?). However, we found that hospice nurses often

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provided limited information to FCGs’ pain related queries. For example, in one case in our

9 study (Table 2: e.g., caregiver-centric issues), morphine was used to treat cancer-pain, but

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undesired side effects due to morphine such as drowsiness, lack of appetite and low energy

11 were experienced by the patient, leading to increased concerns by the FCG. However, a
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12 hospice nurse provided information only focusing on medication schedules such as checking of

13 medication timing, dosages and refills to avoid drug-induced side effects (Table 2). FCGs need
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14 accurate and in-depth information about their concerns, and to be aware of and monitor red
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15 flags in managing patients’ pain. This will lesson emotional and physical stress of FCGs in
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16 managing pain in home hospice.15,16,20 Thus, hospice nurses should continue to provide in-depth

17 information incorporating comprehensive knowledge, problem-solving skills, and self-efficacy in


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18 managing patients’ pain. Such an ongoing effort may increase FCGs’ active participation in

19 managing cancer-pain and enhance the outcomes for cancer patients in home hospice.15,16,20
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20 Moreover, there was a considerable portion of non-addressed instances in each pain-


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21 related concern, except for organizational skill issues (Tables 3 and 5). This communication

22 pattern was frequently observed by nurses’ ignorance of FCGs' concerns with moving on to

23 another topic, or the topic was not directly related to a FCG query. Many of these cases of

24 missed opportunities were due to the lack of adequate time in contacts between FCGs and

25 hospice nurses during home visits (Table 3: e.g., patient-centric issues). In focus groups with 15

26 FCGs for cancer patients at cancer centers,21 FCGs also pointed to the lack of time with health
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1 care providers as a barrier to focused communication and the development of deeper

2 relationships between caregivers and providers. Many of the techniques (e.g., a note, email

3 message, web-based or mobile diary applications.) to communicate pain-related topics to

4 hospice nurses prior to a home visit, have been described as effective strategies in managing

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5 cancer-pain.22,23 Utilizing such tools and techniques can prepare the hospice nurse to have

6 deeper understanding of patients/FCGs’ pain-related concerns and patterns of symptoms, and

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7 plan ahead for better communication in the limited time allotted for each visit.21,22

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Taken together, this gap in nurses’ responses to FCGs’ queries highlights the potential

9 of educational interventions focusing on personalized-skilled communication in home hospice

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(e.g., education-coaching intervention, motivational interview skills, advanced validation skills) to

11 better guide both hospice nurses and FCGs to deal with pain-related concerns.24 A recent
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12 qualitative study25 with 73 FCGs in home hospice identified that personalized-skilled

13 communication (i.e., considering individual FCGs’ preferences in managing cancer-pain and


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14 communication styles) facilitated the provision of quality care in home hospice. Including
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15 FCGs in in-person or videoconference-based interdisciplinary team (IDT) meetings on a regular


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16 basis is also effective in improving access to hospice care providers, assessing FCGs’ barriers

17 and discussing goals of care.13 Other strategies may include providing FCGs and providers with
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18 educational modules that include examples and instructions of effective communication

19 methods of addressing FCGs’ cancer-pain concerns.13


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20 The short length of stay in hospice is one of the challenges in providing advice and
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21 education that align with FCGs’ needs, and in building rapport between hospice providers and

22 FCGs.26 The average length of stay in hospice in 2015 was 69.5 days (median = 23 days).1

23 The brevity of stay in hospice is mostly due to late referrals to hospice services, and in many

24 cases FCGs’ refusal of hospice services at an earlier time point.27 Shorter length of stay in

25 hospice is associated with FCGs’ lower satisfaction, and little time to develop plans of care and

26 prepare FCGs in pain management in hospice. FCGs are under tremendous strain during this
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1 often brief hospice experience.27 Thus, early communication between healthcare providers and

2 FCGs about illness progress and care plan can promote earlier enrollment in home hospice

3 services, and promote earlier preparation of FCGs’ pain management knowledge and skills,

4 which ensure continuity of care in home hospice.28

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5 Several study limitations must be noted. First, demographic data of patients and FCGs

6 were not available. Characteristics of patients and FCGs influence the cancer-pain experiences.

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7 Secondly, our study did not examine changes in communication patterns over time. Third, our

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samples lack diversity; the majority of hospice nurses were female and Caucasian. Future

9 research is needed to replicate this study in diverse populations, and with different subgroups of

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FCGs. For example, grouping by age, education levels, and caregiving experiences. Finally,

11 the relationship (e.g. directionality, magnitude) of communication with patients/FCGs’ outcomes,


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12 or the impact of communication on patients/FCGs’ outcomes, are unknown. There is lack of

13 research examining this relationship in home hospice. Only one preliminary study29 tested a 2-
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14 week cognitive-behavioral intervention for hospice staffs to address barriers to pain


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15 management in hospice (caregivers n = 55 in the intervention, n = 71 controls). FCGs in the


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16 intervention group reported increased pain management knowledge, fewer concerns about

17 managing pain, and lower patients’ pain. However, communication-related outcomes (e.g.,
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18 satisfaction with communication, communication quality) were not assessed. In a recent

19 systematic review of communication interventions (N = 14) for hospice care providers,30


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20 interventions were overall effective in improving providers’ knowledge, but the effects on
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21 patients/FCGs outcomes remained unclear. In another recent systematic review31 for family

22 caregiving interventions (N = 50) in oncology, interventions had overall effects on improving

23 caregiver quality of life, emotional distress, self-efficacy, and communication/relational intimacy

24 in patients-FCGs dyads. In this review,31 only three out of 50 interventions included pain-related

25 topics focusing on physical care (e.g., pain assessment skills, side-effects), but pain-related

26 outcomes were not specifically assessed in these three studies. In both systematic reviews30,31
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1 measures of communication- and pain-related outcomes are lacking. Future research should

2 examine the design and implementation of personalized-communication interventions in

3 managing cancer-pain, incorporating problem-solving skills and psycho-educational approaches,

4 and utilizing various communication tools (e.g., communication apps) for FCGs and hospice

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5 nurses. It is also warranted to assess communication, and test effects of communication

6 interventions on pain-related outcomes of patients, FCGs, and nurses with rigorous study

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7 design approaches and measures.

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Implications for Clinical Practice

9 Our study applied and further validated an existing framework to identify which

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challenges in cancer-pain management were expressed by FCGs in their communication with

11 hospice nurses. We pointed to the need for individualized interventions for FCGs’ pain
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12 management for cancer patients. Thus, our findings may be used to guide future tailored

13 interventions to optimize communication and maximize the efficiency of home hospice visits. For
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14 example, education on effective validation strategies for FCGs with high emotional distress or
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15 with low self-efficacy, or education to convey advanced cancer care principles and terms such
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16 as self-symptom management, can be of great benefit to clinicians communicating with FCGs at

17 home. Utilizing various communication tools (e.g., written materials, websites or mobile
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18 applications, videoconferences) and multi-disciplinary approaches can be applied in clinical

19 settings.
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20 Conclusions
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21 Given actual clinical exemplars of home hospice visits, we highlighted challenges

22 pertaining to pain management expressed by FCGs. We also identified areas where nurses

23 have the opportunity to respond with more specific and practical guidance and further educate

24 FCGs to address their pain management challenges. Data suggest that many FCGs would

25 benefit from additional skills and knowledge in managing patients’ cancer-pain to increase

26 active participation, confidence and self-efficacy. Hospice nurses have the opportunity to
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1 provide individualized coaching for FCGs through effective communication and demonstrate

2 empathy and validation during the home visit. This holds promise as a strategy to improve pain

3 management for cancer patients in home hospice.

4 Disclosures and Acknowledgments

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5 The secondary data for the current study were derived from a large National Cancer

6 Institute (NCI) of the National Institutes of Health (NIH) funded parent project (P01CA138317, at

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7 the University of Utah, Salt Lake City, UT). This study was also supported in part by the NIH

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National Library of Medicine Training Program (T15LM007442) and NCI Cancer Prevention and

9 Control Program (5T32CA092408-17) at the University of Washington, Seattle, WA. The

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authors have no conflicts of interest to declare.
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References

1. National Hospice and Palliative Care Organization. NHPCO facts and figures: hospice

care in America.

https://www.nhpco.org/sites/default/files/public/Statistics_Research/2016_Facts_Figures.

PT
pdf. Published November 2016. Accessed Dec 29, 2017.

2. Teno JM, Gozalo PL, Bynum JP, et al. Change in end-of-life care for Medicare

RI
beneficiaries: site of death, place of care, and health care transitions in 2000, 2005, and

SC
2009. JAMA. 2013;309(5):470-477.

3. Casarett D, Harrold J, Harris PS, et al. Does continuous hospice care help patients

U
remain at home? J Pain Symptom Manage. 2015;50(3):297-304.

4. Chi NC, Demiris G. Family caregivers' pain management in end-of-life care: A


AN
systematic review. Am J Hosp Palliat Med. 2017;34(5):470-85.

5. Chi NC, Demiris G, Pike KC, Washington K, Oliver DP. Pain management concerns
M

from the hospice family caregivers’ perspective. Am J Hosp Palliat Med. 2017 Jan
D

1:1049909117729477.
TE

6. Ferrell B. Pain observed: the experience of pain from the family caregiver's perspective.

Clin Geriatr Med. 2001;17(3):595-609.


EP

7. Kelley M, Demiris G, Nguyen H, Oliver DP, Wittenberg-Lyles E. Informal hospice

caregiver pain management concerns: a qualitative study. Palliat Med. 2013;27(7):673-


C

682.
AC

8. Juarez G, Ferrell BR. Family and caregiver involvement in pain management. Clin

Geriatr Med. 1996;12(3):531-547.

9. Saifan A, Bashayreh I, Batiha A-M, AbuRuz M. Patient and family caregiver-related

barriers to effective cancer pain control. Pain Manag Nurs. 2015;16(3):400-410.


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10. Oliver DP, Wittenberg-Lyles E, Washington K, et al. Hospice caregivers' experiences

with pain management:“I'm not a doctor, and I don't know if I helped her go faster or

slower”. J Pain Symptom Manage. 2013;46(6):846-858.

11. Martinez KA, Aslakson RA, Wilson RF, et al. A systematic review of health care

PT
interventions for pain in patients with advanced cancer. Am J Hosp Palliat Med.

2014;31(1):79-86.

RI
12. Luckett T, Davidson PM, Green A, Boyle F, Stubbs J, Lovell M. Assessment and

SC
management of adult cancer pain: a systematic review and synthesis of recent

qualitative studies aimed at developing insights for managing barriers and optimizing

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facilitators within a comprehensive framework of patient care. J Pain Symptom Manage.

2013;46(2):229-253.
AN
13. Parker-Oliver D, Demiris G, Wittenberg-Lyles E, Porock D, Collier J, Arthur A. Caregiver

participation in hospice interdisciplinary team meetings via videophone technology: A


M

pilot study to improve pain management. Am J Hosp Palliat Med. 2010;27(7):465-473.


D

14. Reblin M, Clayton M, Xu J, et al. Caregiver, patient, and nurse visit communication
TE

patterns in cancer home hospice. Psycho‐Oncology. 2017;26(12):2285-2293.

15. Dingley CE, Clayton M, Lai D, Doyon K, Reblin M, Ellington L. Caregiver activation and
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home hospice nurse communication in advanced cancer care. Cancer Nurs.

2017;(40)5:E38-E50.
C

16. Ellington L, Reblin M, Clayton MF, Berry P, Mooney K. Hospice nurse communication
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with patients with cancer and their family caregivers. J Palliative Med. 2012;15(3):262-

268.

17. Harvey P, Ahmann E. Validation: a family-centered communication skill. Pediatri Nurs.

2014;40(3):143.

18. Sörensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers?

An updated meta-analysis. Gerontologist. 2002;42(3):356-372.


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19. Epstein RM, Shields CG, Franks P, Meldrum SC, Feldman M, Kravitz RL. Exploring and

validating patient concerns: relation to prescribing for depression. Ann Fam Med.

2007;5(1):21-28.

20. Cipta AM, Pietras CJ, Weiss TE, Strouse TB. Cancer-related pain management in

PT
clinical oncology. J Community Support Oncol. 2015;13(10):347-355.

21. Kimberlin C, Brushwood D, Allen W, Radson E, Wilson D. Cancer patient and caregiver

RI
experiences: communication and pain management issues. J Pain Symptom Manage.

SC
2004;28(6):566-578.

22. Clayer MT. Clinical practice guidelines for communicating prognosis and end-of-life

U
issues with adults in the advanced stages of a life-limiting illness, and their caregivers.

Med J Aust. 2007;187(8):478.


AN
23. Doorenbos AZ, Lindhorst T, Schim SM, et al. Development of a Web-based educational

intervention to improve cross-cultural communication among hospice providers. J Soc


M

Work End Life Palliat Care. 2010;6(3-4):236-255.


D

24. Street RL, Slee C, Kalauokalani DK, Dean DE, Tancredi DJ, Kravitz RL. Improving
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physician–patient communication about cancer pain with a tailored education-coaching

intervention. Patient Edu Couns. 2010;80(1):42-47.


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25. Washington KT, Demiris G, Oliver DP, Purnell G, Tatum P. Quality hospice care in adult

family homes: barriers and facilitators. J Am Med Dir Assoc. 2017; S1525-
C

8610(17)30479-6
AC

26. Teno JM, Shu JE, Casarett D, Spence C, Rhodes R, Connor S. Timing of referral to

hospice and quality of care: length of stay and bereaved family members' perceptions of

the timing of hospice referral. J Pain Symptom Manage. 2007;34(2):120-125.

27. Zhi WI, Smith TJ. Early integration of palliative care into oncology: evidence, challenges

and barriers. Ann Palliat Med. 2015;4(3):122-131.


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28. Miller SC, Mor V, Teno J. Hospice enrollment and pain assessment and management in

nursing homes. J Pain Symptom Manage. 2003;26(3):791-799.

29. Cagle JG, Zimmerman S, Cohen LW, Porter LS, Hanson LC, Reed D. EMPOWER: An

Intervention to Address Barriers to Pain Management in Hospice. J Pain Symptom

PT
Manage. 2015;49(1):1-12.

30. Selman LE, Brighton LJ, Hawkins A, et al. The effect of communication skills training for

RI
generalist palliative care providers on patient-reported outcomes and clinician behaviors:

SC
A systematic review and meta-analysis. J Pain Symptom Manage. 2017;54(3):404-416.

e405.

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31. Ferrell B, Wittenberg E. A review of family caregiving intervention trials in oncology. CA

Cancer J Clin. 2017; 67(4): 318-325.


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Table 1. Exemplars of Nurses’ Responses Theme “Providing Validation” to Caregivers’ Cancer Pain Challenges

Nurses’ responses: Providing Validation

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Communication & Teamwork Issues (caregiver-patient communication issues) Family caregiver: “I told [the patient] that we

were going to make her take some meds. She says, I don’t want to take it.” Nurse: “Yeah.”

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Medication Skills & Knowledge Issues (polypharmacy issues)

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Family caregiver: “so we remember what the patient is taking and when to take. I’m like this is crazy! I just haven’t taken the time to

pop them out, I’m just like let me pop them out all at once.” Nurse: “Oh, yeah.”

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Caregiver-Centric Issues (belief system issues - caregiver fears)

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Family caregiver: “I personally would feel better if she [the patient] was somewhere I know, there were people there all the time and

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they knew what was going on and everything.” Nurse: “Yeah. I know.”

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End-of-Life Symptom Knowledge Issues (common end-of-life symptom management issues)

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Family caregiver: “I have one question. So, um… we have been told that things are progressing. Basically, the body is almost

cannibalizing itself. And he becomes emaciated, and he can get really small.” Nurse: “Yeah, Right.”
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Patient-Centric Issues (pain assessment congruency issues) Family caregiver: “I think she [the patient] is still functioning, When
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I assess her pain, I’ll usually say it’s two or three, but she says four, but I think I’m not feeling it.” Nurse: “Yeah”
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Organizational Skill Issues (tracking and recording issues) Family caregiver: “I’ve forgotten to give [the medication] to him every

time. That’s why I started writing it on the board.” Nurse: “Okay.”


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Tables Revision: COMMUNICATING CHALLENGES WITH CANCER PAIN

Table 2. Exemplars of Nurses’ Responses Theme “Providing Information” to Address Caregivers’ Cancer Pain Challenges

Nurses’ responses: Providing Information

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Communication & Teamwork Issues (caregiver-healthcare delivery system communication issues) Family caregiver: “I am not

sure, but I got to make sure that. Do we call nurse to make an appointment? Or does the nurse call and say I will be coming over at

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this time? Or does the nurse just come? How is it?” Nurse: “Either way. I usually call and say, I need to come today.”

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Medication Skills & Knowledge Issues (side effects of pain medication issues) Family caregiver: “He [the patient] doesn’t want

the morphine because he feels sleepy and drowsy, wants to be thinking, what can I do for him?” Nurse: “Do you give the morphine

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correctly? You should follow right time and dosing recommendation, Make sure that you give morphine regularly.”

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Caregiver-Centric Issues (previous life experiences) Nurse: “Do you guys have any feelings or concerns or history with using

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morphine?” Family caregiver: “It was beautiful, but I wasn’t in control.” Nurse: “That is my thought uncomfortable with the thought of

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not being in control. But you’re gonna use this when he is unconscious or when he is at the point where he can’t really swallow.”

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End-of-Life Symptom Knowledge Issues (symptom assessment issues) Family caregiver: “Is the shortness of breath due to a

sign of pain? How to help him [the patient]?” Nurse: “It can be a sign of pain, it can be just kind fluid that is building up.”
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Patient-Centric Issues (Inability to verbalize pain) Family caregiver: “I don’t know if nervousness is from pain because she
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(patient) cannot really tell us, how do we know if she is in pain if she is not communicating? Sometimes I am not sure what to
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give her.” Nurse: “You should give her morphine and if she’s still kind of wiggling around in the bed it’s anxiety.”

Organizational Skill Issues (tracking and recording issues) Family caregiver: “I wonder that how do we refill pain meds, or any

better ways? Nurse: “Just let me know we should probably refill them if you only have 5 or 6 left.”
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Table 3. Exemplars of Nurses’ Responses Theme “Not Addressing” Caregivers’ Cancer Pain Related Concerns

Nurses’ responses: Not Addressing Concerns

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Communication & Teamwork Issues (caregivers - healthcare delivery system communication & teamwork issues)

Family caregiver: “They (health care providers) left her (the patient) in emergency for 48 hours, all night, forgot all about her. That is

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why we have an aversion to going to the hospital.” Nurse: “Mmm hmm.” (nurse does not explain, and answer the question)

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Medication Skills & Knowledge Issues (polypharmacy issues)

Family caregiver: “I don't know you know you know more about it than I do I just kind a hated to give him a bunch of meds.”

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Nurse: “Oh, right now you're looking good. Oh, it turned away soon as you looked.” (nurse communicate with a patient)

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Caregiver-Centric Issues (belief system issues - caregiver fears)

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Family caregiver: “Oh, I will make a mistake… I have a fear of managing her pain.”

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Nurse: “What time Friday are you guys leaving?” (switching subject)

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End-of-Life Symptom Knowledge Issues (symptom assessment issues)

Family caregiver: “I don’t know what it means, about swollen skin bumps, what is this?”
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Nurse: “Yeah.” (nurse does not explain, and answer the question)
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Patient-Centric Issues (psychological well-being issues)


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Family caregiver: “I’m thinking she [the patient] is gone onto the anxious part right now.”

Nurse: “With this many visitors. Aw, I’m sorry.” (limited time to communicate with a caregiver)

Organizational Skill Issues No case of “Not Addressing Concerns”


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Table 4. Exemplars of Nurses’ “Mixed-Type” Responses

Nurses’ responses: Mixed-Type

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Communication & Teamwork Issues No case of “Mixed-Type”

Medication Skills & Knowledge Issues No case of “Mixed-Type”

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Caregiver-Centric Issues (functional issues) Family caregiver: “My hardest I guess the stress I think is just killing my back, I’ve got

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a really bad back in the past week.” Nurse: “Yeah, it's hard” (Provided validation) “You know there is an option. she could go in

for five days to a nursing home if you're getting to where you feel like you can't manage it here.” (Providing Information)

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End-of-Life Symptom Knowledge Issues (symptom assessment issues)

Family caregiver: “He [the patient]'s becoming shorter breath more he's had to use the inhaler more often and I think it has to do with

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everyone's stressed cause its real stressful here this week, what can we do for him?”

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Nurse: “Yes I wouldn't doubt it” (Providing Validation), “I guess I’ll take a listen to his lungs let's see…” (Not Addressing Concerns)

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Patient-Centric Issues (patients’ mythical beliefs) Family caregiver: “We ask her [the patient] to take Lorazepam when she’s

anxious. we say, well you need to take this. And she says, Mom I don’t want to take it, and she goes. Well you guys are just drugging
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me.” Nurse: “No, we want you to be comfortable” (Providing Validation),
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“But she thinks the morphine is causing more anxiety, which is not true. She just needs to take more” (Providing Information).
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Organizational Skill Issues (tracking and recording issues) Family caregiver: “I was supposed to throw that [morphine] out

because it is expired.” Nurse: “Yeah, it is” (Providing Validation), “You can just put it somewhere where you know it

is not going to get messed up. As nurses make our final visit to you, we will destroy any medicine that are left” (Providing Information)
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Table 5. Frequency of Hospice Nurses’ Responses to Caregivers’ Cancer Pain Concerns

Caregivers’ Cancer Pain Concerns Frequency of Types of Nurses’ Responses. n (%)a

Total n (%)a

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(number of each pain-related instances) Providing Validation Providing Information Not Addressing

Communication & Teamwork Issues, n = 30 19 (63.3) 7 (23.3) 4 (13.3) 30 (100.0)

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Medication Skills & Knowledge Issues, n = 27 8 (29.6) 15 (55.6) 4 (14.8) 27 (100.0)

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Caregiver-Centric Issues, n = 21 15 (71.4) 8 (38.1) 1 (4.8) 24 (114.3)

12 single & 3 mixed-types 5 single & 3 mixed-types

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End-of-Life Symptom Knowledge Issues, n = 11 4 (36.3) 5 (45.5) 4(36.3) 13 (118.1)

2 single & 2 mixed-types 2 single & 2 mixed-types

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Patient-Centric Issues, n = 7 2 (28.6) 5 (71.4) 1 (14.3) 8 (114.3)

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1 single &1 mixed-type 4 single types &

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1mixed- type

Organizational Skill Issues, n = 5 4 (80.0) 2 (40.0) 0 (0.0) 6 (120.0)


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3 single types & 1 single &1 mixed-type
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1 mixed-type
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Total number of instances, N = 101 52 (51.5) 42 (41.6) 14 (13.9) 108b (107.0)

  
     
 
Note. a x 100. bTotal 108 nurses’ responses to the 101 pain-related concerns (94 single types

    
   
 
of nurses’ responses for 94 instances; for 7 instances, nurses responded with two communication styles: 94 + 7 x 2 = 108 nurses’
responses). The mixed-type response is used to label the case when a nurse responded with two communication styles (e.g.,
providing validation and providing information).