Barriers to Caregiver Administration of Pain Medication in Hospice Care

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Original Article

Barriers to Caregiver Administration of Pain

Medication in Hospice Care

Marijo Letizia, PhD, RN, C, APN, Steve Creech, MS, BS, Ellen Norton, BSN, RN, CHPN, Marie Shanahan, MS, RN, CHPN, and Lori Hedges, MS, APRN, BC, AOCN

School of Nursing (M.L.), Loyola University School of Nursing, Maywood; Cardinal Bernardin Cancer Center (S.C.) and Center for Home Care and Hospice (M.S.), Loyola University Medical Center, Maywood; St. Thomas Hospice (E.N.), Burr Ridge; and Horizon Hospice (L.H.), Chicago, Illinois, USA

Abstract

Barriers to adequate pain management in hospice and palliative care settings are an important area of investigation. In this study, a Caregiver Pain Medicine Questionnaire (CPMQ) was developed and psychometrically tested. The CPMQ is a 22-item self-report instrument that measures concern about reporting pain, concern about administering analgesics, and difficulty administering analgesics. One hundred fifty-one caregivers of patients admitted to three Chicagoland hospice agencies participated; these individuals were family members, hired caregivers in the home, or staff nurses in skilled care facilities. While only a small percentage of the caregivers expressed concern about communicating

information about the patient’s pain, more than a quarter were concerned about addiction, tolerance, and side effects from medications. A fourth of the caregivers had difficulty administering medications because of fear of doing something wrong and difficulty deciding which or what amount of medications to give. Male caregivers and hired caregivers had greater concerns, both about reporting information about the patient’s pain and administering medications. Greater concerns were also evident among less educated caregivers, caregivers who worked in blue-collar jobs, and caregivers who were homemakers or retired. Concerns of caregivers in the home were significantly greater than staff nurse caregivers in skilled care facilities only in the belief that pain could not be controlled and concern about addiction. Caregivers who had greater concern about addiction and tolerance, and more difficulty administering medications, rated the patient’s pain as less completely controlled. These findings remind hospice staff members of the importance of assessing specific caregiver concerns about medication administration and devising appropriate strategies to address them. J Pain Symptom Manage 2004;27:114–124.

쑖

Key Words

Pain management, barriers, caregiver, hospice and palliative care, Caregiver Pain Medicine Questionnaire (CPMQ)

Address reprint requests to: Marijo Letizia, PhD, RN, Loyola University School of Nursing, 2160 S. First Accepted for publication: June 16, 2003.

Avenue, Building 105, Room 2842, Maywood, IL 60153, USA.

쑖2004 U.S. Cancer Pain Relief Committee 0885-3924/04/$–see front matter

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Introduction

The undertreatment of pain is a widely recog-nized, well-documented health care problem. Unrelieved pain is associated with adverse physi-ologic and psychosocial consequences,1 and management of pain has become a priority in health care in recent years. In the United States, the Agency for Health Care Research and Qual-ity (formerly the Agency for Health Care Policy and Research), published a Clinical Practice Guideline on the Management of Cancer Pain, emphasizing the numerous and complex barri-ers to pain management.2Three problem areas are identified: those related to the health care system, to health care professionals, and to pa-tients and families. The third identified area is the focus of this investigation.

Pain management problems related to pa-tients and families involve beliefs and attitudes about pain and pain medication;3 two specific factors identified by the AHCPR are: reluctance to report pain and reluctance to take pain medi-cations. These factors have been examined in a number of investigations in the United States and elsewhere, linking higher patient con-cerns about pain medication to increased hesi-tancy to report pain, less analgesic use, and higher pain intensity levels.4–7

Consideration of the Caregiver in Pain

Management

In hospice and palliative care, the dying person and his or her family are considered to be the unit of care. As the dying process and changes in level of functioning progress, hos-pice patients become quite dependent on the caregiver for pain medication administration. When this occurs, caregivers are involved in communicating with the hospice staff about the patients’ pain, making decisions about adminis-tering medications, and correctly providing the medications.8,9Control of pain is a major con-cern, and possibly the greatest area of burden, for these caregivers.6,10 Although pain man-agement is indeed a cornerstone of hospice and palliative care, staff may focus their efforts on assessing patients’ pain intensity and quality, yet overlook barriers that impact caregivers’ ad-ministration of medications.11

The purpose of this study was to explore and describe barriers to caregiver administration of pain medications in hospice care. This was ac-complished by two aims of the study: 1) testing

an instrument created for this investigation, and 2) describing the findings obtained when the instrument was administered to a population of hospice caregivers. Specific research questions included: 1) What are the concerns among caregivers about reporting information about hospice patients’ pain? 2) What are the con-cerns among caregivers about administering analgesics to hospice patients? 3) What are the difficulties encountered by caregivers in admin-istering pain medications to hospice patients? 4) Is there a relationship between demographic information, and concerns and difficulties sur-rounding medication administration? 5) Is there a relationship between caregiver concerns and difficulties, and patient pain intensity levels?

Methods

Study Participants

Three hospice programs in the Chicagoland area participated in this investigation; each pro-gram delivers care to patients in home and skilled facility locations. The sample consisted of the specific caregiver identified by the hospice staff nurse as the individual most involved in communicating information about the hospice patient’s pain and in offering and administer-ing pain medications. For inclusion in this study, the caregiver was required to be18 years of age and able to read and speak English.

Descriptive statistics for patient, caregiver, and hospice staff nurse demographic variables are presented inTable 1. The mean patient age was 76 years and 64% had a cancer diagnosis. While 85% of the patients were in the home setting, 13% were receiving care in skilled facili-ties; therefore, the caregiver demographics re-flect information both about staff nurses in skilled care facilities and primary caregivers in the home.

Although patient gender was fairly balanced, 82% of the caregivers were female. Nearly 60% were either the life partner or adult child of the patient. Hired caregivers in the home made up 14% of the caregiver sample; another 12% were staff nurses caring for those patients in skilled facilities. The caregiver average age was 56 with an average 13 years of formal education. Forty-three percent of the caregivers worked full time; 33% held white-collar/professional occupations.

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Table 1

Patient and Caregiver Demographic Informationa

Patient (nⴝ151) Age (yr) 76⫾13.1 [43, 100] Gender Female 87 (58) Male 61 (40) Ethnicity Caucasian 121 (80) African American 16 (11) Hispanic 9 (6) Asian 1 (1) Residency Home 129 (85) Skilled Facility 19 (13) Diagnosis Cancer Total 97 (64) Lung 31 (21) Genitourinary 13 (9) Biliary 12 (8) Other 41 (27) Non-Cancer Total 51 (34) Heart Disease 13 (9) Other 38 (25) Caregiver (nⴝ151) Age (yr) 56⫾15 [21, 87] Gender Female 124 (82) Male 27 (18) Relationship to Patient Adult Child 50 (33) Spouse/Partner 39 (26) Hired Caregiver 21 (14) Staff Nurse 18 (12) Other 23 (15) Ethnicity Caucasian 112 (74) African American 18 (12) Asian 13 (9) Hispanic 7 (5)

Education (number of years) 13⫾3.8 [0, 20] Employment Status Full-time 65 (43) Retired 31 (21) Homemaker 23 (15) Part-time 13 (9) Other 32 (21) Occupation White-collar/Professional 49 (33) Homemaker 34 (23) Retired 22 (15) Blue-collar/Service 14 (9) Other 45 (30)

a_⫾_{values are mean}_⫾_{standard deviation, values in brackets are} minimum and maximum; values in parentheses are percentages. Percentages do not add to 100% for some variables due to missing data.

The experience level of the hospice staff nurses is notable; the average age was 47 years with an average 19 years of nursing experience (range 2–42 years) and 6 years of hospice ex-perience (range 1–20 years). Seventy-one per-cent held a BSN or higher educational degree.

Development of the Caregiver Pain Medicine

Questionnaire (CPMQ)

The Barriers Questionnaire (BQ) is a self-report instrument that assesses ambulatory cancer patients’ beliefs and concerns that act as barriers to pain management.7 The first phase of this project involved modifying the BQ to assess hospice caregiver concerns. The primary criterion in creating the Caregiver Pain Medicine Questionnaire (CPMQ) was adequate coverage of the AHCPR classification system using the two factors of: “concern about re-porting pain” and “concern about administer-ing analgesics.” An additional third factor, “difficulty administering pain medications,” was also included. Two previously identified sub-scales for the “concern about reporting pain” factor are: 1) fatalism (the belief that pain is inevitable and cannot be controlled) and 2) stoicism (the belief in the importance being strong and not complaining). Three subscales for the “concern about administering medica-tions” factor are: 1) concern about addiction, 2) concern about tolerance, and 3) concern about side effects. The “difficulty administering pain medications” factor does not have any sub-scales. Generation of the item pool was accom-plished by review of the literature, nursing observation, and discussion with content ex-perts. Three hospice caregivers of recently de-ceased hospice patients also provided feedback about the instrument items during its devel-opment.

Content validity of the CPMQ was established by six experts in hospice and palliative care. Using the Content Validity Index,13each expert rated the relevancy of items and a percentage of agreement was obtained (CVI⫽0.89); all items were retained. The final draft of the CPMQ consists of 22 items scored on 5-point Likert scales of agreement (1⫽strongly dis-agree; 2⫽disagree; 3⫽undecided; 4⫽agree; 5⫽strongly agree). Higher numbers indicated a higher level of agreement and a greater con-cern about the item; mean scores were used in the analysis (see Appendix 1 for sample CPMQ items). In addition, three open-ended questions and one structured question about the caregiver’s perception of the patient’s current pain control are included in the CPMQ.

Additional Instruments

Three additional instruments were used to collect information on primary caregiver, pa-tient, and hospice staff nurse variables for de-scriptive and analytic purposes.

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Each registered nurse employed as a staff member by the three participating hospice agencies completed the RN Demographic In-formation form. This form includes: age, gender, and ethnic background, level of edu-cation, years as a registered nurse, years as a hospice nurse, and part-time or full-time em-ployment.

The Hospice Patient Demographic Informa-tion form was completed by the assigned pri-mary nurse and includes: age, gender, ethnic background, place of residency, and diagnosis. This form also documents current pain medica-tion orders including the drug name(s), dose(s), and administration schedule(s).

The Hospice Caregiver Demographic Infor-mation form was completed by the primary caregiver and includes: age, gender, relation-ship to the patient, ethnic background, level of education, employment status, and current oc-cupation.

Procedure for Data Collection

After obtaining Institutional Review Board approval for this investigation, a formal orienta-tion session about the study was held for the nursing staff at each hospice agency. Informa-tion was provided on the background, signifi-cance, procedures, and time frame for the investigation.

As each patient was consecutively admitted to each hospice program, the hospice nurse identified and approached the primary caregiver about study participation during a regularly scheduled visit within the first week of the patient’s admission. At that time, the nurse provided the caregiver with a description of the study. If the caregiver was interested in participating, the nurse provided both the informed consent letter and the CPMQ to the caregiver; the instrument took approxi-mately 15 minutes to complete. The nurse col-lected the CPMQ from the caregiver on that visit.

Statistical Methods

The primary measures for this investigation were the CPQM factor and subscale scores. Cronbach’s alpha was calculated for the total instrument, factor, and subscale scores as a mea-sure of internal consistency. Spearman’s corre-lation was calculated to evaluate associations

among the CPQM scores and continuous/ordi-nal scaled variables such as age and number of years of education. Mann-Whitney and Kruskall-Wallis tests were used as appropriate to com-pare the CPQM scores between groups. The Chi-square test was used both to evaluate the as-sociation between categorical variables and to determine whether or not the caregiver was helping administer the pain medication. All testing was based on determining statistical sig-nificance at a two-sided alpha level of 0.05.

Results

Internal Consistency of the CPMQ

One hundred fifty-one caregivers completed the CPMQ. The total instrument alpha coeffi-cient was 0.89 (Table 2). The alpha coefficients of the three factors are: concern about re-porting pain 0.74; concern about administering medications 0.89; and difficulty administering medications 0.89. Alpha coefficients for the sub-scales range from 0.58 (fatalism) to 0.84 (addic-tion). The low coefficients for the fatalism and stoicism subscales may be a result of the small number of items in these subscales.

CPMQ Scores for the Entire Patient Sample

Table 3outlines the means, standard devia-tions, and percentages of caregivers who were undecided or had at least some agreement with, or concern about, medication administration. While minimal concern was expressed about reporting information about the patient’s pain,

Table 2

Internal Consistency (Cronbach’s Alpha) of the CPMQ

Number Cronbach’s

Scalesa _{of Items}b _Alpha

Total Barriers Scale 22 0.89

Concern about reporting

patient’s pain information 4 0.74

Fatalism 2 0.58

Stoicism 2 0.67

Concern about administering

pain medications 13 0.89 Addiction 3 0.84 Tolerance 3 0.74 Side Effects 7 0.77 Difficulty administering pain medications 5 0.89

a_{Each factor and subscale measures the average response to the} items making up the factor or subscale.

b_{Each item is measured on a five-point Likert scale ranging from 1} (least concern) to 5 (greatest concern).

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Table 3

CPMQ Factor and Subscale Scores Percent Greater Than or Equal to

Scales Mean⫾SD Threea

patient’s pain information 1.6⫾0.63 5

Fatalism 1.7⫾0.75 9

Stoicism 1.6⫾0.70 7

pain medications 2.3⫾0.77 18 Addiction 2.2⫾1.0 21 Tolerance 2.4⫾1.00 31 Side Effects 2.4⫾0.73 23 Difficulty administering pain medications 1.9⫾0.58 3

a_{Percentage of caregivers with an average over all items in the scale} that corresponds to uncertain, agree, or strongly agree that there is a concern/difficulty.

20-30% of the caregivers indicated at least some concern about administering medica-tions; concerns about tolerance (31%), side effects (23%), and addiction (21%) were the most prevalent. While only 3% of the caregivers indicated that they had difficulty administering medications, specific item distribution about that factor is important to consider (Table 4). Twenty-two percent of caregivers administering medications indicated fear of doing some-thing wrong; 20% noted difficulty deciding which medications to give, and 18% noted diffi-culty deciding what amount of medications to give.

Relationship of CPMQ Scores to Caregiver

Variables

No statistically significant associations were found between CPMQ factor or subscale scores and the age of the caregiver. However, the CPMQ scores of male caregivers were statisti-cally significantly higher than female caregivers

Table 4

“Difficulty Administering Pain Medications” Scale Responses Frequency (%)

Questions Agree or Strongly Agree Disagree or Strongly Disagree

I am afraid of doing something wrong 26 (22) 94 (78)

It is hard to decide which medications to give 23 (20) 91 (80)

It is hard to decide what amount of medication to give 21 (18) 95 (82)

It is hard to decide what time to give the medication 13 (11) 104 (89)

It is hard to remember what time to give the medication 11 (9) 108 (91)

in all factors and subscales except difficulty ad-ministering pain medications (Table 5). Statisti-cally significant associations were also apparent between the CPMQ scores and the relationship of the caregiver to the patient in all but the stoicism and difficulty administering medica-tions items (Table 6). For every CPMQ factor and subscale, hired caregivers in the home had the highest scores while staff nurses in skilled care facilities had the lowest scores. There were no statistically significant differences in CPMQ scores of the spouse/partner and adult child caregivers. Asian caregivers had higher CPMQ scores than those of other ethnic backgrounds; statistically significant differences existed in the concern about reporting pain information, tolerance, and difficulty administering pain medication categories (Table 7). Specifically, analysis of the item “I am afraid of doing some-thing wrong when I give the pain medication” demonstrated a higher agreement among Asian caregivers (P⫽0.082).

Level of caregiver education was negatively correlated to CPMQ scores in every subscale except difficulty administering medications (Table 8). However, only concern about re-porting pain, fatalism, stoicism, and addiction were statistically significant. The strength of these correlations was weak to moderate (⫺0.19 to ⫺0.33). Concern about reporting patients’ pain and fatalism were associated with caregiver employment status. Homemakers and retired caregivers showed greater concern than those employed full or part time (Table 9). When comparing across caregiver occupations, statis-tically significant differences were evident in all but the difficulty administering medication CPMQ scores (Table 10). White-collar/profes-sional caregivers had lower CPMQ scores than blue collar/service, homemaker, and retired caregivers.

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Table 5

CPMQ Scores by Caregiver Gender Mean⫾SD

Scales Male (n⫽27) Female (n⫽124) Pa

Concern about reporting patient’s pain information 2.0⫾0.84 1.5⫾0.53 0.003

Fatalism 2.1⫾1.1 1.6⫾0.63 0.019

Stoicism 1.9⫾0.82 1.5⫾0.65 0.003

Concern about administering pain medications 2.8⫾0.79 2.2⫾0.73 0.002

Addiction 2.9⫾1.0 2.0⫾0.96 ⬍0.0001

Tolerance 2.8⫾1.1 2.3⫾0.96 0.03

Side Effects 2.7⫾0.71 2.3⫾0.72 0.019

Difficulty administering pain medications 1.9⫾0.46 1.8⫾0.61 0.873

a_{Mann-Whitney U test}

Relationship of CPMQ Scores to Patient

Variables

There were no statistically significant associa-tions between the CPMQ scores and age, gender, ethnicity, or diagnosis of the patient. CPMQ scores of caregivers in the home were significantly higher than staff nurse caregivers in skilled care facility only in the concern about reporting pain information, fatalism, and addic-tion categories (Table 11).

Correlations of CPMQ Scores to the Pain

Experience

Patients were asked to verbally rate their own pain level using a numeric rating scale ranging from 0 (no pain) to 10 (worst pain). Eighty percent of the patients were able to respond to this question, and their average pain intensity rating was 3.5. There were no statistically signifi-cant correlations between the patient’s pain level rating and CPMQ scores. The most com-monly used pain medications were morphine (45%) and transdermal fentanyl (20%); 76% of the patients had opioid medications prescribed.

Table 6

CPMQ Scores by Caregiver Relationship to Patient Mean⫾SD

Spouse/Partner Adult Child Hired Caregiver Skilled Facility Staff Pa

Scales (n⫽39) (n⫽50) (n⫽21) Nurse (n⫽18)

Concern about reporting patient’s

pain information 1.7⫾0.62 1.6⫾0.66 1.9⫾0.53 1.3⫾0.38 0.016

Fatalism 1.8⫾0.78 1.8⫾0.84 1.9⫾0.52 1.3⫾0.39 0.008

Stoicism 1.6⫾0.60 1.5⫾0.56 1.8⫾0.73 1.4⫾0.54 0.081

pain medications 2.3⫾0.86 2.3⫾0.74 2.9⫾0.63 2.0⫾0.59 0.002

Addiction 2.3⫾1.1 2.1⫾0.94 2.8⫾1.1 1.6⫾0.63 0.006

Tolerance 2.2⫾1.0 2.4⫾1.0 3.1⫾0.87 2.1⫾0.87 0.006

Side Effects 2.4⫾0.81 2.4⫾0.72 2.8⫾0.56 2.1⫾0.61 0.009

Difficulty administering pain medications 1.8⫾0.66 1.9⫾0.56 2.1⫾0.51 1.7⫾0.52 0.328 a_{Kruskal-Wallis test comparing all four groups.}

Caregivers were also asked to indicate the level of pain control experienced by the patient. The three possible responses were that the pain was: 1) not being controlled at all, 2) controlled some of the time, and 3) controlled all of the time. No caregiver rated the patient’s pain as not being controlled at all. However, caregivers reporting patients’ pain as controlled some of the time had higher CPMQ scores than those reporting pain as controlled all of the time for the addiction and difficulty administering med-ication subscales (Table 12).

Responses to Open-Ended Questions

Three open-ended questions on the instru-ment asked the caregiver the following: 1)Do you have any questions about the pain medication that is prescribed?; 2) Do you have any additional concerns about giving the pain medication?;and 3)

Is there anything else that makes it difficult for you to give the pain medicine?Caregivers responded by asking specific questions about prescribed medications, such as:What is the difference between morphine and the other pain medicines?; Does the

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Table 7

CPMQ Scores by Caregiver Ethnicity

Mean⫾SD

Caucasian African American Hispanic Asian Pa

Scales (n⫽112) (n⫽18) (n⫽7) (n⫽13)

Concern about reporting patient’s pain information 1.6⫾0.64 1.8⫾0.54 1.5⫾0.48 1.9⫾0.62 0.041

Fatalism 1.6⫾0.77 2.0⫾0.65 1.7⫾0.76 1.9⫾0.61 0.052

Stoicism 1.5⫾0.69 1.7⫾0.56 1.3⫾0.39 1.9⫾0.91 0.09

Concern about administering pain medications 2.3⫾0.78 2.5⫾0.67 2.4⫾1.0 2.6⫾0.59 0.086

Addiction 2.1⫾1.0 2.4⫾0.88 2.0⫾1.1 2.4⫾01.0 0.37

Tolerance 2.2⫾1.0 2.8⫾0.82 2.5⫾1.4 2.8⫾0.85 0.025

Side Effects 2.4⫾0.77 2.5⫾0.60 2.4⫾0.95 2.6⫾0.49 0.36

Difficulty administering pain medications 1.8⫾0.55 1.8⫾0.74 1.5⫾0.71 2.3⫾0.30 0.015 a

Kruskal-Wallis test comparing all four groups.

dosage get adjusted when the body weight changes?; Are there side effects to come that we haven’t seen on the present dose?;andWill the medicine continue to work?In one case, a patient had a 75µg transder-mal fentanyl patch in place, with one tablet of propoxyphene-acetaminophen available for breakthrough pain every six hours. The care-giver askedIs it okay to give more pills when her pain is worse?

Caregivers stated specific concerns about administering pain medication. One caregiver remarked that he/she was, sometimes confused about waiting for the patient to state that there is pain vs. consistently using the pain medicine.One patient’s daughter acting as the primary caregiver in the home stated:I am a nurse and I am always cautious about giving too much medica-tion and decreasing the breathing capacity although I know that pain control is extremely important.One caregiver stated that he associated the use of morphine with death; other caregiver com-ments indicated non-specific but clear fear about and negative attitude toward morphine. Caregivers reported difficulty administering medication because of a number of problems.

Table 8

CPMQ Scores by Caregiver Education Spearman’s

Scales rho P

patient’s pain information ⫺0.28 0.001

Fatalism ⫺0.33 ⬍0.0001

Stoicism ⫺0.19 0.020

pain medications ⫺0.16 0.062 Addiction ⫺0.24 0.004 Tolerance ⫺0.13 0.11 Side Effects ⫺0.13 0.11 Difficulty administering pain medications 0.02 0.8

Dosing confusion was evident in the statement:

The doctor’s orders didn’t match the increments on the eye dropper. A caregiving spouse commented:

Sometimes she chokes when we give it too fast. She cannot swallow easily now and it is scary when the liquid stays in her mouth. Caregivers’ difficulty in assessing the patient’s pain was evident in the following statements:Sometimes, it is difficult to know if my dad is in pain because he often tries to hide it;and Getting an accurate account from my nephew about the amount of pain is not easy. Family member disagreements in providing care were evident in the following statements:Some of our family members are reluctant to give the medicine because they want our mom to always be alert and talking, andCertain family members are making it difficult because they are concerned about ‘dope.’ I am unhappy at being accused of keeping my dad ‘doped up.’Caregiver burden was evident in the following statements: Consideration should be given to the stress level of the caregiver administering the medication; Education for that person should be a top priority; It’s hard because I am alone most of the time;and Resistance on the part of the patient makes it hard to help.

Discussion

In this investigation, 80% of the caregivers were helping administer medications to hospice patients. Only a small percent indicated concern about communicating information about the patient’s pain to the hospice staff, possibly an effect of the recent focus of atten-tion on pain management at the end of life. Agencies provide a Bill of Rights to patients that

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Table 9

CPMQ Scores by Caregiver Employment Status Mean⫾SD

Full time Part-time Homemaker Retired Pa

Scales (n⫽65) (n⫽13) (n⫽23) (n⫽31)

Concern about reporting patient’s pain information 1.5⫾0.53 1.5⫾0.57 1.8⫾0.73 1.9⫾0.73 0.046

Fatalism 1.5⫾0.59 1.5⫾0.85 1.9⫾0.91 2.0⫾0.81 0.015

Stoicism 1.4⫾0.58 1.5⫾0.74 1.6⫾0.62 1.8⫾0.79 0.210

Concern about administering pain medications 2.2⫾0.77 2.3⫾0.74 2.6⫾0.96 2.4⫾0.64 0.229

Addiction 2.1⫾0.99 1.9⫾1.0 2.3⫾1.2 2.4⫾0.99 0.318

Tolerance 2.3⫾1.1 2.3⫾1.1 2.6⫾1.0 2.4⫾0.85 0.506

Side Effects 2.3⫾0.74 2.4⫾0.65 2.7⫾0.92 2.5⫾0.57 0.113

Difficulty administering pain medications 1.8⫾0.57 1.9⫾0.59 2.1⫾0.62 1.8⫾0.57 0.424 a

Kruskal-Wallis test comparing all four groups.

includes: the right that reports of pain will be accepted, the right to receive information about pain, the right to have pain controlled, and the right to a concerned staff devoted to pain prevention and management. The level of staff experience and their commitment to building rapport with caregivers are crucial variables in the pain management plan. On hospice admis-sion, staff emphasizes the importance of work-ing together as a team to accomplish the goals of care expressed by the patient and family.

On average, more than a fourth of hospice caregivers had concern about tolerance, side ef-fects, and addiction when administering medi-cations; caregiver comments indicate fear of the use of morphine. Anti-drug messages con-tinue to be prevalent in the media and may contribute to this finding. However, caregiver concern about a hospice patient’s risk for addic-tion persists despite limited life expectancy and the shift in care from cure to comfort. Clarifica-tion of the differences between tolerance, ad-diction, and physical dependence is essential.

Table 10

CPMQ Scores by Caregiver Occupation Mean⫾SD

Blue-collar/Service White-collar/Professional Homemaker Retired Pa

Scales (n⫽14) (n⫽49) (n⫽34) (n⫽22)

Concern about reporting patient’s

pain information 1.9⫾0.69 1.4⫾0.40 1.8⫾0.63 1.9⫾0.85 0.003

Fatalism 2.0⫾0.97 1.4⫾0.47 1.9⫾0.80 2.0⫾0.89 0.001

Stoicism 1.7⫾0.80 1.3⫾0.51 1.5⫾0.54 2.0⫾1.1 0.036

pain medications 2.6⫾0.86 1.9⫾0.59 2.6⫾0.87 2.6⫾0.67 ⬍0.0001

Addiction 2.5⫾1.1 1.7⫾0.78 2.3⫾1.1 2.7⫾1.1 ⬍0.0001

Tolerance 2.6⫾1.1 1.9⫾0.87 2.7⫾1.0 2.4⫾0.84 0.001

Side Effects 2.6⫾0.81 2.0⫾0.58 2.7⫾0.83 2.7⫾0.56 ⬍0.0001

Difficulty administering pain

medications 1.7⫾0.71 1.7⫾0.56 2.1⫾0.60 1.8⫾0.51 0.14

a_{Kruskal-Wallis test comparing all four groups.}

Caregivers must be reassured that tolerance to most troublesome side effects occurs, and that these side effects can be anticipated, prevented, and effectively managed.

While only a small percent of caregivers ex-pressed difficulty administering medications, those that did were concerned about doing something wrong or had difficulty deciding which and what amount of medications to give. Staff must identify specific components of the pain management plan that make caregivers uneasy, stressing that the medication type, dose, and schedule are appropriate and safe. Simpli-fying the medication plan can ease caregiver decision-making; around-the-clock dosing of medications is recommended. Polypharmacy should be avoided; it is helpful to use only one controlled-release opioid accompanied by one immediate-release product for breakthrough pain. Liquid medication can be ordered at the time of hospice admission; the caregiver then does not have to crush a pill or change to the liquid formula when the patient’s condition

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Table 11

CPMQ Scores by Patient Residency

Mean⫾SD

Home Skilled Facility Pa

Scales (n⫽129) (n⫽19)

Fatalism 1.8⫾0.75 1.3⫾0.42 0.005

Stoicism 1.6⫾0.73 1.3⫾0.38 0.103

Addiction 2.2⫾1.0 1.7⫾0.82 0.033

Tolerance 2.4⫾0.98 2.2⫾0.98 0.455

Side Effects 2.4⫾0.72 2.2⫾0.67 0.393

a

Mann-Whitney U test.

changes. Prescribing ranges in dosages can be problematic for some caregivers, both in the home and skilled care facilities; selecting a specific dose is preferable in those cases. Provid-ing a written chart for caregivers to document the medication given, the time given, and the patient response is helpful. Teaching needs to be repeated on each visit to help caregivers assimilate information. Limitations of caregiv-ers must be addressed; if they cannot or do not want to participate in medication administra-tion, an alternative plan must be devised.

Only 18% of the caregivers were male; they had significantly greater concerns than females both about reporting information about the pa-tient’s pain and administering medications. Fe-males typically take primary responsibility for providing care to children and aging or ill adults, and are often more comfortable doing so. Staff may need to take more time with male caregivers in discussing and implementing the hospice patient’s medication plan. Male

Table 12

CPMQ Scores by Caregivers’ Rating of Patients’ Pain Mean⫾SD Controlled some Controlled all

Scales of the time (n⫽45) of the time (n⫽75) Pa

Fatalism 1.9⫾0.90 1.6⫾0.72 0.062

Stoicism 1.5⫾0.60 1.4⫾0.70 0.190

Addiction 2.4⫾1.2 1.9⫾0.87 0.029

Tolerance 2.5⫾1.1 2.1⫾0.94 0.050

Side Effects 2.5⫾0.88 2.3⫾0.70 0.230

a_{Mann-Whitney U test.}

caregivers may also benefit from additional sup-port in the home, including volunteers and nursing assistants.

Hired caregivers had significantly greater concern both about reporting information about the patient’s pain and administering medications. This finding is noteworthy for family members who hire caregivers and hos-pice staff members who involve them in the plan of care. Even if hired caregivers have experience in providing home care, it is important to deter-mine if they have had experience caring for dying patients. If not, their understanding of and concerns about the dying process must be addressed. Hired caregivers who believe that their role is to keep the patient alive may have fear of blame, legal ramifications, or job loss when the patient’s condition declines. Staff must ask hired caregivers what medications they have administered in the home setting and their comfort level in providing those medica-tions; misconceptions must be clarified. Lan-guage barriers can have a significant impact in

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the accuracy of communication and must also be addressed. It is also essential to determine the competency level of hired caregivers and ensure that they are adequately prepared to implement the plan of care. To evaluate, staff can plan patient visits according to the hired caregiver’s schedule.

Asian caregivers had significantly greater con-cern both about reporting information about the patient’s pain and administering medica-tions in comparison to caregivers of other ethnic backgrounds. Similar findings were noted in previous investigations of cancer pa-tients using the Barriers Questionnaire.9,14The faith beliefs of some Asian caregivers may result in a higher value placed on suffering; some may view illness as a failure and may be less comfort-able in volunteering information about a pa-tient’s pain. In working together with caregivers of all ethnic backgrounds, staff must consider the cultural context in which pain and pain management is understood.

Caregiver education, occupation, and em-ployment status revealed similar patterns of concerns regarding medication administration. Less educated, homemaker, and retired care-givers had greater fatalism and stoicism beliefs and a greater concern about addiction. These findings are similar to those reported with pa-tients using the Barriers Questionnaire.4,7,9,12,15 Employed and more highly educated caregiv-ers may have access to, undcaregiv-erstand, and use evidence-based information about pain man-agement; this may help lessen their concerns. Homemakers, retirees, and caregivers in blue-collar jobs had greater concerns than those who were in white collar/professional occupations. Those caregivers may be less inclined to base their concerns on scientific authority, instead basing them on personal experience. It is essen-tial to uncover the unique attitudes and beliefs of caregivers, in addition to their knowledge base, in developing the pain management plan. Surprisingly, while caregivers in the home had higher levels of concern than caregivers in skilled care facilities regarding pain medica-tion, significant differences existed only in fatal-istic beliefs and concern about addiction. The primary caregivers in skilled care facilities are staff nurses; in light of the recent U.S. accredit-ing organization’s (Joint Commission on the Accreditation of Healthcare Organizations) ini-tiative addressing pain management, it was ex-pected that significant differences would have

existed in each area of concern. Skilled care facility staff beliefs about the importance of stoicism and concerns about side effects and tolerance must be addressed in educational initiatives.

Caregivers who had higher levels of concern about addiction and tolerance, and more dif-ficulty administering medications, rated the patient’s pain as less completely controlled; similar findings were noted in studies of cancer patients using the Barriers Question-naire.6,7,9,12,14 It is essential that staff address caregiver concern that results in less than ade-quate administration of medications and less complete control of pain.

Conclusion

Both conceptually and in practice, hospice and palliative staff members recognize the im-portance of considering caregiver concerns about patients’ pain management in the plan of care. The average pain intensity rated on a 1–10 scale by patients in this investigation was 3.5; no caregiver indicated that the patient’s pain was not being controlled at all. Never-theless, a number of specific and significant caregiver concerns surfaced that were linked to particular caregiver characteristics; these find-ings warrant further investigation. Staff are en-couraged to initiate discussions with caregivers, encouraging them to express particular be-liefs and concerns about pain and pain medica-tion. Misconceptions can be identified and replaced with knowledge and understanding as staff tailor their approaches and strategies to best address the attitudinal and learning needs of hospice caregivers.

Acknowledgments

This research was supported by the Loyola University Palmer Endowment Research Fund, and by the Beta Omega Chapter of Sigma Theta Tau. The authors thank Sandra E. Ward, PhD, RN for her support of the project and for her careful reading of the manuscript.

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Appendix 1

Sample CPMQ items

Factors and Subscales Sample Item

Concern about reporting pain

• Fatalism • It is not realistic to expect that pain can be controlled. • Stoicism • People in pain should not complain about their pain.

Concern about administering medication

• Tolerance • It is not good when people need to take more of the pain medicine as time goes on.

• Addiction • It is not a good idea for people to take pain medicine, because they can get addicted to it.

• Side Effects • People should take less than the prescribed dose of pain medicine to avoid side effects.

Difficulty administering medication

• I’m afraid of doing something wrong when I give the pain medicine.

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10. Ferrell B, Grant M, Chan J, et al. The impact of cancer pain education on family caregivers of elderly patients. Oncology Nursing Forum 1995;22(8):1211– 1218.

11. Ersek M. Enhancing effective pain management by addressing patient barriers to analgesic use. J Hos-pice Palliative Nursing 1999;1(3):87–96.

12. Ward S, Hernandez L. Patient-related barriers to management of cancer pain in Puerto Rico. Pain 1994;58:233–238.

13. Lynn M. Determination and quantification of content validity. Nursing Research 1986;35:382–338. 14. Wang K, Ho S, Ger L, et al. Patient barriers to cancer pain management: From the viewpoint of the cancer patients receiving analgesics in a teaching hospital of Taiwan. Acta Anaesthesiol Sin 1997;35: 201–208.

15. Berry P, Ward S. Barriers to pain management in hospice: A study of family caregivers. The Hospice J 1995;10(4):19–33.