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. Author manuscript; available in PMC: 2013 Jul 1.
Published in final edited form as: Oncol Nurs Forum. 2013 Jul 1;40(4):337–346. doi: 10.1188/13.ONF.337-346

Family Caregiver Burden, Skills Preparedness, and Quality of Life in Non-Small-Cell Lung Cancer

Marcia Grant 1, Virginia Sun 2, Rebecca Fujinami 3, Rupinder Sidhu 4, Shirley Otis-Green 5, Gloria Juarez 6, Linda Klein 7, Betty Ferrell 8
PMCID: PMC3695406  NIHMSID: NIHMS455763  PMID: 23803267

Abstract

Purpose/Objectives

Describe burden, skills preparedness, and QOL for caregivers of patients with NSCLC, and describe how findings informed the development of a caregiver palliative care intervention that aims to reduce caregiver burden, improve caregiving skills, and promote self-care.

Design

Descriptive, longitudinal.

Setting

One NCI-designated comprehensive cancer center in Southern California.

Sample

A total of 163 family members or friends who were 18 years or older and identified by patients as being the caregiver were accrued.

Methods

All eligible caregivers were approached by advance practice nurses (APNs) during a regularly scheduled patient clinic visit. Informed consent was obtained prior to study participation. Outcome measures were completed at baseline and repeated at 7, 12, 18, and 24 weeks. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables.

Main Research Variables

Caregiver burden, skills preparedness, psychological distress, and QOL.

Findings

Caregivers were highly functional. Caregiver burden related to subjective demands increased significantly over time. Perceived skills preparedness was high at baseline, but decreased over time. Psychological distress was moderate but increased over time. Overall QOL was moderate at baseline, and decreased significantly over time. Psychological well-being had the worst QOL score.

Conclusions

Caregivers experienced high levels of caregiver burden, and report deteriorations in psychological well-being and overall QOL over time.

Implications for Nursing

Oncology nurses need to ensure that caregivers receive information that supports the caregiving role throughout the cancer trajectory.

Introduction

A cancer diagnosis profoundly impacts not only the patient but also the family. Family caregivers, along with patients, exist within a social unit that can be negatively impacted throughout the cancer continnum, from diagnosis to end of life (B. Ferrell & Mazanec, 2009; Given, Given, & Sherwood, 2012; Lewis, 2004). Caregivers, although profoundly impacted by a loved one’s cancer diagnosis, have received only minimal attention by most healthcare providers who are focused primarily upon the physical needs of the patient. The current literature recognizes the multidimensional needs of caregivers throughout the continuum of the cancer experience (Honea et al., 2008). This article presents descriptive findings from the usual care phase of an NCI-funded Program Project Grant that aims to test the efficacy of an interdisciplinary palliative care intervention delivered by APNs for patients and families living with non-small-cell lung cancer (NSCLC). The Lung Cancer Program Project Grant involves three intervention projects (Early Stage, Late Stage, Family Caregivers) and three cores (Administrative, Biostatistics, Geriatrics) that, in conjunction, aims to address symptoms and quality of life (QOL) issues through the integration of palliative care. This article describes how data on caregiver burden, skills preparedness, psychological distress, and QOL informed the development of an interdisciplinary, tailored palliative care intervention to meet the physical, psychological, social, and spiritual needs of caregivers of patients with NSCLC. Caregivers are defined as a spouse, adult child, other relative, partner or friend who has a personal relationship with, and provides a broad range of unpaid assistance for an adult with a serious illness (Given, Sherwood, & Given, 2011).

Literature Review

It is well-established in the current literature that patients with NSCLC have tremendous needs in areas such as symptom burden, mood disorders, and overall QOL deficits.(Akin, Can, Aydiner, Ozdilli, & Durna, 2010; Brant et al., 2011; Brown, Cooley, Chernecky, & Sarna, 2011; Cleeland et al., 2011; B. Ferrell, Koczywas, Grannis, & Harrington, 2011; Floyd et al., 2011; Lee et al., 2011; Lynch, Goodhart, Saunders, & O’Connor, 2011; Prasertsri, Holden, Keefe, & Wilkie, 2011; Sanders, Bantum, Owen, Thornton, & Stanton, 2010; Tishelman, Lovgren, Broberger, Hamberg, & Sprangers, 2010; Vos, Putter, van Houwelingen, & de Haes, 2011; Wang et al., 2010). The caregiving role in cancer, particularly for those caring for a family member or friend with NSCLC, can be associated with physical, psychological, social, functional, and spiritual burden for informal caregivers. Montgomery and colleagues defined caregiver burden as the distress that caregivers feel as a result of providing care, and this distress is different from depression, anxiety, and other emotional responses (B. Ferrell & Mazanec, 2009; Montgomery, Gonyea, & Hooyman, 1985b). Caregiver burden is influenced by characteristics of the patient, caregivers, and the care environment. Patient characteristics, including diagnosis, treatment, stage of disease, and amount of caregiving-related tasks have been shown to influence caregiver burden (B. Ferrell & Mazanec, 2009; Given et al., 2011; Hwang et al., 2003; Sharpe, Butow, Smith, McConnell, & Clarke, 2004). Caregivers who are older, have distressed relationships with patients, and have little social support report higher levels of caregiver burden (B. Ferrell & Mazanec, 2009; Gaugler et al., 2005; Nijboer, Tempelaar, Triemstra, van den Bos, & Sanderman, 2001). Certain characteristics of the care environment, including socioeconomic status and the type of caregiving tasks, may also impact perceived caregiver burden (B. Ferrell & Mazanec, 2009; Sharpe et al., 2004; Spillers, Wellisch, Kim, Matthews, & Baker, 2008; Stenberg, Ruland, & Miaskowski, 2010; van Ryn et al., 2011; Williams & McCorkle, 2011).

Caregivers of lung cancer patients are required to manage multiple patient symptoms, such as dyspnea, pain, and fatigue. Caregivers are also responsible for dealing with the patient’s nutrition needs in situations where the patient experienced significant functional declines (B. Ferrell & Mazanec, 2009; Van Houtven, Ramsey, Hornbrook, Atienza, & van Ryn, 2010; van Ryn et al., 2011). Caregiving also involves the psychological burdens of coping with the patient’s anxiety and depression (Bakas, Lewis, & Parsons, 2001; B. Ferrell & Mazanec, 2009). Added to these intense demands is the reality of lung cancer as a disease with frequent recurrence in early stage disease and death in late stage disease (Gridelli et al., 2007; Ryan, Howell, Jones, & Hardy, 2008).

Cancer caregivers are often expected to have already obtained certain caregiving skills (B. Ferrell & Mazanec, 2009). Physical care for people with lung cancer may include helping with ambulation, moving or lifting patients, assistance with nutritional management, and managing common symptoms (Bakas et al., 2001; B. Ferrell & Mazanec, 2009). Too often, caregivers are expected to perform these complex tasks alone, without any formal assessment of their level of efficacy related to caregiving or formal support (B. Ferrell & Mazanec, 2009). The current literature suggests that caregivers’ perceived skills preparedness is associated with caregiver burden. In a study with 59 caregivers, Scherbring and colleagues reported higher caregiver burden and lower caregiver QOL was associated with perceived preparedness for the caregiving role. (B. Ferrell & Mazanec, 2009; Scherbring, 2002).

An emerging body of evidence suggests that caregivers also derive benefits from their caregiving role. Domains of benefit finding in cancer caregiving have been described in the literature, and includes acceptance, empathy, appreciation, family, positive self-view, and reprioritization (Kim, Schulz, & Carver, 2007). In hospice settings, spousal caregivers who were able to find meaning and subjective benefits from caregiving were less likely to be depressed and also report having higher life satisfaction (Haley, LaMonde, Han, Burton, & Schonwetter, 2003).

Nevertheless, the cancer experience can still profoundly affect caregivers’ QOL (Kim, Baker, & Spillers, 2007; Kim & Given, 2008; Kim & Spillers, 2010). Research indicates that as patients’ disease progresses, the physical well-being of caregivers also decreases (Blum & Sherman, 2010; Cora, Partinico, Munafo, & Palomba, 2012; Given et al., 2011; Harding, List, Epiphaniou, & Jones, 2012; Ji, Zoller, Sundquist, & Sundquist, 2012; Northfield & Nebauer, 2010; Stenberg et al., 2010; Williams & McCorkle, 2011). An emerging body of literature suggests that higher caregiver burden is associated with increased mortality risk for caregivers (Braun, Mikulincer, Rydall, Walsh, & Rodin, 2007; Cora et al., 2012; Ji et al., 2012). Psychological demands of caregiving, such as anxiety, depression, and psychological distress, are common in caregivers of lung cancer patients (Chambers et al., 2012; Murray et al., 2010; Östlund, Wennman-Larsen, Persson, Gustavsson, & Wengström, 2010; Rivera, 2009; Roth, Perkins, Wadley, Temple, & Haley, 2009; Siminoff, Wilson-Genderson, & Baker, 2010). The social demands of caregiving are primarily related to relationships, social support, and financial factors. Marital relationships and family communication patterns can be strained, and research has revealed that depression in both patient and spouse negatively affected marital relationships (Badr & Taylor, 2006; Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008; Kim & Carver, 2007; Kim, Carver, Deci, & Kasser, 2008; Kim, Kashy, & Evans, 2007; Lindau, Surawska, Paice, & Baron, 2011; Manne, Badr, & Kashy, 2011; Sherwood et al., 2008). Spiritually, research suggests that similar to cancer patients, caregivers often experience spiritual distress but also derive meaning in their cancer caregiving experience (Colgrove, Kim, & Thompson, 2007; Kim, Carver, Spillers, Crammer, & Zhou, 2011; Kim, Wellisch, Spillers, & Crammer, 2007).

Over the years, an emerging body of evidence have focused on the development and testing of interventions to support cancer caregivers. A recent meta-analysis conducted by Northouse and colleagues found that psychoeducational, skills training, and therapeutic counseling interventions were predominant methods used in the caregiver intervention literature (Northouse, Katapodi, Song, Zhang, & Mood, 2010). They found that most interventions were delivered in a dyadic fashion, but dose and duration varied tremendously across studies. The interventions were found to have small to medium effects on reducing caregiver burden, improving caregiver coping, increasing caregiver self-efficacy, and improving aspects of caregiver QOL (Northouse et al., 2010). This meta-analysis provides crucial evidence to guide researchers in the development of effective caregiver interventions.

The current literature supports the significant burden of caregiving and the limited research on lung cancer caregiving. Given the burdens of the healthcare system, the chronically-ill and our aging population, caregiving is increasingly recognized as a major public health concern. The intense psychological impact of a lung cancer diagnosis is matched by the practical demands and physical care assumed by caregivers. There is a need to develop evidence-based supportive care models for caregivers of patients with lung cancer. Understanding caregiver burden, skills preparedness and QOL is a first step to designing scientifically-sound nursing interventions to support the caregiving role for patients with lung cancer.

Methods

Sample and Setting

Caregivers were recruited from the Medical Oncology Adult Ambulatory Care Clinic at an NCI-designated comprehensive cancer center in Southern California. Family members or friends who were 18 years or older and identified by patients with NSCLC as being the caregiver were eligible for study participation. Eligible caregivers were recruited to assess usual care in Phase 1 of this two-phase Program Project Grant. The Lung Cancer Program Project Grant involves the synergistic implementation of three intervention projects (Early Stage, Late Stage, Family Caregiver) to integrate palliative care into comprehensive NSCLC care. A total of 163 caregivers were accrued and were eligible for analysis (consented with baseline data).

Procedures

The study protocol was approved by the Cancer Center’s Institutional Review Board (IRB) prior to study initiation. All eligible caregivers were approached by APNs during a regularly scheduled patient clinic visit. Written informed consent was obtained from all caregivers prior to study participation, and caregivers were recruited consecutively. Following informed consent, caregivers completed baseline assessment that included basic demographics as well as outcome measures to assess functional status, caregiver burden, skills preparedness, psychological distress, overall QOL, and caregiver resource utilization. The measures were administered either verbally or through caregivers’ written responses, and they were repeated at 7, 12, 18, and 24 weeks following accrual.

Instruments

Basic caregiver demographics were obtained at baseline for the following variables: age, race/ethnicity, gender, relationship to patient, living situation (whether the caregiver lived with the patients and other members of the household), education, marital status, employment, income, access to primary healthcare, smoking history, and co-morbidities.

Caregiver functional status was assessed using the Instrumental Activities of Daily Living (IADL) subscale of the Older American Resources and Services (OARS). The OARS Multidimensional Functional Assessment Questionnaire (MFAQ) was developed to provide a profile of the level of functioning and need for services of older persons who live at home but may have some degree of impairment. The MFAQ has been tested on over 6,000 older community residents (Fillenbaum & Smyer, 1981). The IADL subscale consists of seven questions rated on a three-point Likert scale of degree to which the activity can be performed independently. Norms are available for the MFAQ based on 2,146 elderly community residents (George & Fillenbaum, 1985).

Caregiver burden was assessed using the Caregiver Burden Scale, a 14-item survey that measures the impact of caregiving on three dimensions of burden: objective, subjective demand, and subjective stress (Montgomery et al., 1985b; Montgomery, Stull, & Borgatta, 1985a). Objective Burden is defined as the perceived interruption of the tangible aspects of a caregiver’s life (B. Ferrell & Mazanec, 2009). Subjective Demand burden is the caregiver’s perceived demands of caregiving responsibilities (B. Ferrell & Mazanec, 2009). Subjective Stress Burden is the caregiver’s pereceived emotional response to the caregiving responsibilities (B. Ferrell & Mazanec, 2009; Montgomery et al., 1985b). The ordinal scale ranges from 1–5 (a lot less to a lot more). Internal consistency for the three dimensions ranges from .82 to .88 (Montgomery et al., 1985a). Cut-off scores were established for each of the burden dimensions, with Objective Burden scores of >23, Subjective Demand score of >15, and Subjective Stress score of >13.5 indicating higher levels of burden (Montgomery et al., 1985a).

Caregiver skills preparedness was assessed using Archbold and colleague’s Preparedness for Caregiving Scale. The measure is an eight-item scale of the Family Care Inventory (Archbold, Stewart, Greenlick, & Harvath, 1990). Preparedness is defined as the perceived readiness for multiple domains of the caregiving role, such as providing physical care, providing emotional support, setting up in-home support services, and dealing with the stress of caregiving. Items address caregiver’s comfort with various physical and emotional patient needs and are scored from 0 to 4 = very well prepared. The higher the score the more prepared the caregiver feels for caregiving. Internal consistency ranges from 0.88 to 0.93 (Archbold et al., 1990; Schumacher, Stewart, & Archbold, 2007).

Caregiver psychological distress was measured by the Psychological Distress Thermometer. This measure is an efficient, low subject burden method recommended by the National Comprehensive Cancer Network’s Distress Management Guidelines to evaluate psychological distress over the past week, based on a scale of 0 (no distress) to 10 (extremely distressed). A mark of 5 or above indicates a need for intervention (Graves et al., 2007).

Caregiver QOL was assessed using the City of Hope-QOL Scale – Family Version. This tool is a thirty-seven item ordinal instrument that measures the QOL of a family member caring for a patient with cancer. Four QOL domains are measured: physical, psychological, social, and spiritual well-being. The ordinal scale ranges from 1–10, with higher scores meaning worse QOL. The instrument was revised and tested from 1994–1998 in a study of 219 caregivers of cancer patients. The test-retest reliability was r=.89 and internal consistency was alpha r=.69. Factor analysis confirmed the four QOL domains as subscales for the instrument (B. R. Ferrell, Ferrell, Rhiner, & Grant, 1991; B. R. Ferrell, Grant, Borneman, Juarez, & ter Veer, 1999; B. R. Ferrell, Grant, Chan, Ahn, & Ferrell, 1995). Finally, caregiver resource utilization was assessed at all follow-up time points to determine the type of resources caregivers accessed. Specific categories were created by the investigators and included physical support to emotional and spiritual support.

Data Analysis

Scannable data forms developed using the Remark system (a program that aids in the development of scannable surveys) were completed by APNs and by caregivers. Data were scanned, audited for accuracy, and read into an SPSS system file. Missing Values Analysis (MVA, SPSS v 19) revealed that values were missing completely at random, thus allowing for imputation using the estimation-maximization method. Descriptive statistics were computed for all variables, and one-way repeated measures Analysis of Variance (ANOVA) was used to test for change over time for all predictor and outcome variables.

Results

Basic demographics data are presented in Table 1. There were no demographic differences found between completers and non-completers. Mean age of the caregivers was 57, with a range of 21–88. The majority of caregivers were non-Hispanic Whites (71%), with 64% being female. Most caregivers were spouses (68%), and 26% were daughters caring for a parent with NSCLC. Overall, 37% of caregivers reported having at least a high school degree, and 61% were college-educated. Caregivers tended to be married or partnered (82%), and lived with their spouse or partner (83%). Most caregivers were employed more than 32 hours per week (34%) or were retired (32%). The majority of caregivers reported having an annual income of greater than $50,000 (56%), although 20% chose not to provide information on their annual income. Eighty-five percent of caregivers reported having access to a primary care clinician. The majority of caregivers never smoked (53%) or were former smokers (39%). Predominant co-morbidities included cardiovascular, endocrine/metabolic, musculoskeletal, and anxiety/depression. Caregivers were highly functional in instrumental activities of daily living (see Table 2).

Table 1.

Caregiver Demographics (n=163)

Total
N (%)
Age – mean = 57.23; range: 21–88
Race
White 115 (70.6%)
Asian 25 (15.3%)
Black/African American 7 (4.3%)
American Indian/Alaska Native 2 (1.2%)
Native Hawaiian/ Other Pacific Islander 1 (0.6%)
More Than One Race 10 (6.1%)
Unknown/ Unreported 3 (1.8%)
Ethnicity - Hispanic/Latino
Yes 17 (10.4%)
No 146 (89.6%)
Gender
Male 58 (35.6%)
Female 105 (64.4%)
Relationship with Patient
Spouse/Partner 111 (68.1%)
Daughter 26 (16.0%)
Son 7 (4.3%)
Parent 4 (2.5%)
Other 15 (9.2%)
Living Situation
Spouse/Partner 135 (82.8%)
Children (<18 years old) 21 (12.9%)
Children (>19 years old) 19 (11.7%)
Parent(s)/ Parent(s)-In-Law 12 (7.4%)
Other Relative 10 (6.1%)
Live Alone 6 (3.7%)
Other 2 (1.2%)
Education
Elementary School 2 (1.2%)
Secondary/High School 61 (37.4%)
College 100 (61.3%)
Marital Status
Married/Partnered 133 (82.1%)
Single 16 (9.9%)
Divorced 11 (6.8%)
Separated 1 (0.6%)
Widowed 1 (0.6%)
Employment
Employed >32 hrs/wk 56 (34.4%)
Retired 52 (31.9%)
Employed <32 hrs/wk 17 (10.4%)
Unemployed 17 (10.4%)
Homemaker 14 (8.6%)
Disabled 5 (3.1%)
Full-time Student 1 (0.6%)
Other 14 (8.6%)
Income
<$10000 6 (3.7%)
$10001 to $20000 7 (4.3%)
$20001 to $30000 6 (3.7%)
$30001 to $40000 11 (6.7%)
$40001 to $50000 9 (5.5%)
>$50000 92 (56.4%)
Prefer not to answer 32 (19.6%)
Do you have a primary doctor?
Yes 138 (84.7%)
No 25 (15.3%)
Smoking History
Non-Smoker 86 (52.8%)
Former Smoker 63 (38.7%)
Current Smoker 14 (8.6%)
Co-Morbidities (n=102)
Cardiovascular 62 (60.8%)
Endocrine/Metabolic 36 (35.3%)
Musculoskeletal 34 (33.3%)
Anxiety/Depression 30 (29.4%)
Respiratory 15 (14.8%)
Stomach or Gastrointestinal Disorders 14 (13.7%)
Cancer 9 (8.8%)
Other 21 (20.6%)
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Table 2.

Family Caregiver Instrumental Activities of Daily Living

Question Total
Mean SD
Can you use the telephone? 2.00 .000
Get to places out of walking distance? 1.94 .241
Shopping for groceries or clothes? 1.96 .189
Prepare own meals? 1.95 .217
Do your housework? 1.90 .298
Take own medicine? 1.98 .135
Handle own money? 1.98 .135
Overall IADL 13.79 .769
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*

1–3 scale; 1= without help, 2=with some help, 3=unable to perform activity

Table 3 presents findings for all outcome measures assessed in this study. For caregiver burden, caregivers experienced high levels of Subjective Stress, with mean scores being higher than the cut-off score of 13.5 across all follow-up time points. Subjective Stress was also stable throughout all measurement periods. Objective Burden changed significantly across time, peaking at 12 weeks and then significantly decreasing. Subjective Demand increased significantly for 7, 12, and 18 weeks and then began to decrease. Caregiver’s perceived skills preparedness was high at baseline, but decreased over time, and this difference was statistically significant. Psychological distress was moderate throughout the five measurement periods, but increased over time, although the difference was not statistically significant.

Table 3.

Family Caregiver Outcome Measures

Baseline 7 week 12 week 18 week 24 week p Value
Mean SD Mean SD Mean SD Mean SD Mean SD Main Effect
Caregiver Objective Burden (score of >23 = higher burden)
Total 15.84 7.63 15.95 7.57 16.30 8.05 14.34 8.22 14.40 8.56 .001
Caregiver Subjective Demand (score of >15 = higher burden)
Total 10.79 3.55 10.83 3.76 11.41 3.44 11.43 3.17 11.25 3.38 .021
Caregiver Subjective Stress (score of >13.5 = higher burden)
Total 14.17 3.22 13.87 3.00 13.76 3.12 13.72 2.77 13.73 2.70 .293
Caregiver Skills Preparedness (0–4 scale; higher score = more prepared)
Total 3.72 .777 3.52 .758 3.56 .768 3.49 .755 3.54 .761 .000
Psychological Distress (0 = no distress; 10 = extremely distressed)
Total 4.41 2.81 4.57 2.95 4.68 2.94 4.67 2.70 4.84 2.66 .332
Physical Well-Being (0–10 scale; higher score = better QOL)
Total 7.54 1.98 7.37 1.86 7.26 1.82 6.93 2.01 6.97 2.04 .000
Psychological Well-Being (0–10 scale; higher score = better QOL)
Total 5.43 1.73 5.32 1.73 5.25 1.71 5.17 1.64 5.12 1.66 .007
Social Well-Being (0–10 scale; higher score = better QOL)
Total 6.70 1.89 6.16 2.02 6.02 1.95 6.09 1.81 6.02 1.91 .000
Spiritual Well-Being (0–10 scale; higher score = better QOL)
Total 6.49 2.02 6.75 1.86 6.63 1.87 6.61 1.76 6.37 2.00 .007
Total QOL (0–10 scale; higher score = better QOL)
Total 6.24 1.52 6.10 1.52 5.99 1.50 5.03 1.46 5.84 1.55 .000
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Figure 1 depicts QOL changes across the five follow-up time points. At baseline, overall QOL was moderate, and decreased significantly over time. Scores for the four QOL domains also decreased significantly over time. Out of the four QOL domains, psychological well-being had the worst score, followed by social, spiritual, and physical well-being.

Figure 1.

Figure 1

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Family Caregivers’ QOL Changes Over Time

Table 4 presents findings on individual items for caregiver outcome measures. Items with a score of >3.7 (1–5 scale; higher score means higher burden) were selected for the Caregiver Burden Scale. Caregiver’s report higher burden for items such as time for self, personal privacy, time for recreation, tension in life, vacation and trips, time for own work and chores, and time for friends/relatives. For QOL, items with a score of <5 (0–10 scale, lower score means worse QOL) were selected, and they included primarily psychological well-being issues such as distress of initial diagnosis, treatment, anxiety, fear of recurrence, overall family distress, and uncertainty.

Table 4.

Family Caregiver Outcomes - Items Ratings

Question Baseline 7 weeks 12 weeks 18 weeks 24 weeks
N Mean SD N Mean SD N Mean SD N Mean SD N Mean SD
Caregiver Burden Scale – Items with score of >3.7
Time for Self 117 4.15 .925 99 4.13 .888 93 3.98 .944 73 3.89 1.10 69 3.87 1.12
Personal Privacy 70 4.06 1.05 59 4.03 .809 60 3.97 .991 46 3.91 .985 46 3.85 1.01
Time for Recreation 112 4.05 1.09 98 4.22 .856 85 4.01 1.04 76 4.07 .971 71 3.99 1.05
Tension in your life? 163 3.93 .937 144 3.76 .924 131 3.68 .987 120 3.69 .877 122 3.64 .891
Vacation and Trips 106 4.11 1.14 102 4.35 .971 99 4.14 1.13 83 4.17 1.08 78 3.92 1.21
Time for Own Work and Chores 93 3.96 .999 76 4.00 .800 75 3.83 1.08 55 3.82 .945 60 3.97 .882
Time for Friends/Relatives 102 3.87 1.21 78 4.00 .926 79 3.94 1.00 69 3.80 1.08 66 3.85 1.14
QOL – Items with score of <5
Distress of Patient’s Initial Dx 155 1.20 2.05 138 1.55 2.16 123 1.42 1.92 115 1.33 1.62 117 1.61 2.28
Distress of Patient’s Tx 140 3.51 3.39 123 3.50 3.10 117 3.29 2.83 109 3.03 2.61 113 3.01 2.70
Anxiety 133 4.85 3.05 112 5.07 2.95 106 5.06 2.90 101 4.86 2.58 101 4.61 2.73
Fear of 2nd Cancer in Patient 140 3.79 3.82 128 3.68 3.56 116 4.11 3.59 104 3.45 3.37 105 3.51 3.24
Fear of Recurrence in Patient 145 3.14 3.66 129 3.12 3.44 118 3.56 3.46 107 3.07 3.22 111 3.26 3.24
Fear of Metastasis in Patient 148 2.82 3.55 131 3.05 3.40 119 3.52 3.53 105 2.55 3.09 111 2.63 3.00
Family Distress 143 2.74 2.54 143 2.74 2.54 143 2.74 2.54 143 2.74 2.54 143 2.74 2.54
Rate your overall social well-being 163 6.94 2.03 144 6.69 2.14 132 6.60 2.03 120 6.64 1.82 122 6.67 2.06
Uncertainty 133 3.50 3.33 120 3.93 3.30 112 3.91 3.13 106 3.69 2.96 113 3.45 3.10
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Finally, findings related to caregiver resource utilization are depicted in Figure 2. The most commonly used source of support was talking to family and friends (96% to 99% over time). This is followed by help from family and/or neighbors, cleaning services, spiritual counseling, home health services, support groups for caregivers, social work, and professional counseling. The type of resources utilized did not change over time.

Figure 2.

Figure 2

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Family Caregiver Resource Use Over Time (%)

Discussion

Findings from this usual care phase of a Program Project in Lung Cancer demonstrated that high caregiver burden and low QOL were common in caregivers caring for a loved one with NSCLC. This finding supports previous studies conducted specifically with caregivers for lung cancer patients, which showed that perceived caregiver burden is high and QOL diminished (Murray et al., 2010; Persson, Ostlund, Wennman-Larsen, Wengstrom, & Gustavsson, 2008; Van Houtven et al., 2010). For the three burden dimensions, results suggest that caregivers experienced high levels of perceived subjective stress, indicating that the emotional impact of caregiving responsibilities on the caregiver was burdensome. The fact that we did not see significant changes in the scores across time for this dimension suggests that the high level of emotional stress remained constant. Although scores for the other two burden dimensions (Objective Demand and Subjective Demand) were not high according to established cut-offs, the statistically significant increase in the Subjective Demand scores over time suggest that the extent to which the caregiver’s perceived care responsibilities to be overly demanding progressively increased. Previous studies, although not specific to lung cancer, have shown that as patients progress through treatment and as their medical conditions worsen, caregiving demands increase as well (Roth et al., 2009; Schumacher et al., 2008).

Studies focusing on informal cancer caregiving has shown that assuming caregiving responsibilities have a negative impact on caregivers’ overall QOL (Bergelt, Koch, & Petersen, 2008; Kitrungroter & Cohen, 2006; Mancini et al., 2011). Results from this study support these previous findings. Total QOL scores and the four QOL subscale scores all decreased significantly over time. Our findings also suggest that psychological QOL was the worst across all four domains. Since psychological well-being focuses on assessing emotional issues such as anxiety and depression, the data suggest that these are important areas to address for caregivers. Emotional strain and depressive symptoms are common in cancer caregivers, and have been documented specifically in lung cancer settings as well (Siminoff et al., 2010). In terms of overall QOL, we observed a significant drop in overall QOL scores between the 12 and 18 week follow-up, followed by a significant recovery of scores between the 18 and 24 week time points. With this planned analysis we were unable to determine the specific cause of these precipitous changes, but hypothesize that this may be related to fluctuations in patient conditions. Although our findings were specific to caregiver of lung cancer patients, it may also be generalizable to other cancer types, as similar findings have been described in the current cancer caregiver literature across various cancer types (Given et al., 2012; Given et al., 2011; Kim, Baker, Spillers, & Wellisch, 2006; Kim et al., 2011; Kitrungroter & Cohen, 2006).

Study limitations included the inclusion of caregivers caring for patients with all stages of NSCLC, which may have confounded study findings. Although, as previously stated, similar findings in the current cancer caregiver literature have been described, our findings may not be generalizable across other cancer types and in other settings. Nevertheless, the findings confirm other research in the current cancer caregiver research, and also informed the development of an ongoing caregiver palliative care intervention.

Intervention Development

Based on the findings, an interdisciplinary palliative care intervention for caregivers in NSCLC was developed and is currently being tested. The overall purpose of phase 2 (experimental phase) of this Program Project Grant is to implement and test a palliative care intervention for NSCLC caregivers. Based on findings from this study, the caregiver intervention content included content that addresses caregiver burden, with specific emphasis that focuses on coping with the emotional impact of caregiving. Content on skills preparedness focus on providing skills education, as well as emphasizing the potential of new skills to be acquired as the patient’s physical status changes. Finally, the intervention included a comprehensive self-care program for caregivers that addresses their own physical, emotional, social, and spiritual needs.

The intervention began with the collection of baseline information using the same tools that are used in Phase 1. Results of this evaluation are presented at an Interdisciplinary Care Conference (ICC), where discussion of the comprehensive assessment of both the patient and caregiver are presented. Members of the ICC team include the treating oncologist or surgeon, nurse, and key supportive care experts (social work, nutrition, pulmonary and physical rehabilitation, pain and palliative medicine, chaplain, and psychologist). The ICC’s focus is on interdisciplinary support of the patient and caregiver’s physical, psychological, social, and spiritual well-being. The interdisciplinary team makes palliative care-related recommendations for both the patient and caregiver, which are all documented in a customized care plan. The care plan for caregivers will be focused on two primary areas – the patient’s supportive care needs that the caregiver need help addressing, and caregiver’s self-care. Self-care includes healthy living recommendations, exercise, nutrition, managing caregiver’s own health, and external support. Referrals to supportive care services are also initiated based on recommendations. Follow-up evaluations for the caregiver are conducted, and the care plan is revised periodically based on patient condition and caregiver needs. The caregivers receive educational materials and participate in four educational sessions. The session contents are divided into the four QOL domains: physical, psychological, social, and spiritual well-being. The sessions are focused on addressing caregiver burden, improving caregiving skills, and development of a caregiver self-care plan. This phase of the study will continue for two years.

Implications for Nursing

Given the high levels of burden that caregivers experience, there is a critical need to develop and implement interventions to support the caregiving role for caregivers of lung cancer patients. Most importantly, healthcare professionals, including oncology nurses, need to ensure that caregivers receive the appropriate resources and support to care for their loved ones at home. In recent years, palliative care has emerged as a viable model to effectively incorporate the needs of both the patient and family through the utilization of a comprehensive and interdisciplinary approach to cancer care. Palliative cancer care has been defined as the “integration into cancer care of therapies that address multiple issues that cause suffering for patients and their families and impact their life quality” (Ferris et al., 2009). National guidelines have been developed by key organizations such as the National Comprehensive Cancer Network (NCCN) and the National Consensus Project for Quality Palliative Care (NCP), and these guidelines recommend incorporating support for family members as an integral part of palliative care (National Comprehensive Cancer Network, 2011; National Consensus Project, 2009). Oncology nurses should be aware of the contents and recommendations of these guidelines that can aid in improving support for caregivers in cancer.

In a recent article, Given and colleagues presented a model of comprehensive caregiver assessment that can aid in identifying their specific areas of needs and assist with selecting the appropriate resources and interventions during the caregiving journey (Given et al., 2012). Areas for assessment include the following: 1) caregiver’s competing demands; 2) living arrangements; 3) caregivers’ employment status; 4) financial needs; 5) demands in the level of care and time needed to provide that care; 6) caregiver’s knowledge and skills related to caregiving; 7) caregiver’s capacity and willingness to care; 8) caregiver’s own physical and mental health needs; 9) available social and family resources; and 10) caregiver’s expectations of the caregiving role (Given et al., 2012). Oncology nurses could utilize these valuable recommendations on conducting a comprehensive caregiver assessment, and re-assess if the patient’s situation and medical condition changes.

In conclusion, the results from this study suggest that caregivers experience high levels of emotional stress related to the caregiving role, and report deteriorations in psychological well-being and overall QOL over time while caring for a loved one with NSCLC. These findings guided the development of a caregiver palliative care intervention that aims to improve caregiver outcomes. The design of the study allowed for a comprehensive assessment of perceived burden, skills preparedness, and QOL needs over time. Comprehensive QOL assessment and interdisciplinary collaborations that focus on supporting psychological well-being and addressing the emotional stress related to the caregiving role may be key to improving the quality of comprehensive care for caregivers in cancer.

Acknowledgments

The research described was supported by grant 5 P01 CA136396-02 from the National Cancer Institute. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the National Cancer Institute or NIH.

Contributor Information

Marcia Grant, Director and Professor, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, CA.

Virginia Sun, Assistant Professor, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, CA.

Rebecca Fujinami, Research Specialist, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, CA.

Rupinder Sidhu, Clinical Social Work, Department of Supportive Care Medicine, City of Hope, Duarte, CA.

Shirley Otis-Green, Senior Research Specialist, Nursing Research and Education, Department of Population Sciences, City of Hope, Duarte, CA.

Gloria Juarez, Assistant Professor, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, CA.

Linda Klein, Manager of Operations, Sheri & Les Biller Patient and Family Resource Center, Department of Supportive Care Medicine, City of Hope, Duarte, CA.

Betty Ferrell, Professor, Nursing Research & Education, Department of Population Sciences, City of Hope, Duarte, CA.

References

  1. Akin S, Can G, Aydiner A, Ozdilli K, Durna Z. Quality of life, symptom experience and distress of lung cancer patients undergoing chemotherapy. European Journal of Oncology Nursing. 2010;14(5):400–409. doi: 10.1016/j.ejon.2010.01.003. [DOI] [PubMed] [Google Scholar]
  2. Archbold PG, Stewart BJ, Greenlick MR, Harvath T. Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health. 1990;13(6):375–384. doi: 10.1002/nur.4770130605. [DOI] [PubMed] [Google Scholar]
  3. Badr H, Taylor CL. Social constraints and spousal communication in lung cancer. Psycho-Oncology. 2006;15(8):673–683. doi: 10.1002/pon.996. [DOI] [PubMed] [Google Scholar]
  4. Bakas T, Lewis RR, Parsons JE. Caregiving tasks among family caregivers of patients with lung cancer. Oncol Nurs Forum. 2001;28(5):847–854. [PubMed] [Google Scholar]
  5. Bergelt C, Koch U, Petersen C. Quality of life in partners of patients with cancer. Qual Life Res. 2008;17(5):653–663. doi: 10.1007/s11136-008-9349-y. [DOI] [PubMed] [Google Scholar]
  6. Blum K, Sherman DW. Understanding the Experience of Caregivers: A Focus on Transitions. Semin Oncol Nurs. 2010;26(4):243–258. doi: 10.1016/j.soncn.2010.08.005. [DOI] [PubMed] [Google Scholar]
  7. Brant JM, Beck SL, Dudley WN, Cobb P, Pepper G, Miaskowski C. Symptom trajectories during chemotherapy in outpatients with lung cancer colorectal cancer, or lymphoma. European Journal of Oncology Nursing. 2011;15(5):470–477. doi: 10.1016/j.ejon.2010.12.002. [DOI] [PubMed] [Google Scholar]
  8. Braun M, Mikulincer M, Rydall A, Walsh A, Rodin G. Hidden morbidity in cancer: spouse caregivers. [PDF] J Clin Oncol. 2007;25(30):4829–4834. doi: 10.1200/JCO.2006.10.0909. [DOI] [PubMed] [Google Scholar]
  9. Brown J, Cooley M, Chernecky C, Sarna L. A Symptom Cluster and Sentinel Symptom Experienced by Women With Lung Cancer. [10.1188/11.ONF.E425-E435] Oncol Nurs Forum. 2011;38(6):E425–E435. doi: 10.1188/11.ONF.E425-E435. [DOI] [PubMed] [Google Scholar]
  10. Chambers SK, Girgis A, Occhipinti S, Hutchison S, Turner J, Morris B, Dunn J. Psychological distress and unmet supportive care needs in cancer patients and carers who contact cancer helplines. European Journal of Cancer Care. 2012;21(2):213–223. doi: 10.1111/j.1365-2354.2011.01288.x. [DOI] [PubMed] [Google Scholar]
  11. Cleeland CS, Mendoza TR, Wang XS, Woodruff JF, Palos GR, Richman SP, Lu C. Levels of Symptom Burden During Chemotherapy for Advanced Lung Cancer: Differences Between Public Hospitals and a Tertiary Cancer Center. Journal of Clinical Oncology. 2011;29(21):2859–2865. doi: 10.1200/JCO.2010.33.4425. [DOI] [PMC free article] [PubMed] [Google Scholar]
  12. Colgrove LA, Kim Y, Thompson N. The effect of spirituality and gender on the quality of life of spousal caregivers of cancer survivors. [PDF] Ann Behav Med. 2007;33(1):90–98. doi: 10.1207/s15324796abm3301_10. [DOI] [PubMed] [Google Scholar]
  13. Cora A, Partinico M, Munafo M, Palomba D. Health risk factors in caregivers of terminal cancer patients: a pilot study. Cancer Nurs. 2012;35(1):38–47. doi: 10.1097/NCC.0b013e31820d0c23. [DOI] [PubMed] [Google Scholar]
  14. Ferrell B, Koczywas M, Grannis F, Harrington A. Palliative care in lung cancer. [Research Support, N.I.H., Extramural Review] Surg Clin North Am. 2011;91(2):403–417. ix. doi: 10.1016/j.suc.2010.12.003. [DOI] [PMC free article] [PubMed] [Google Scholar]
  15. Ferrell B, Mazanec P. Family Caregivers. In: Hurria A, Balducci L, editors. Geratric Oncology: Treatment, Assessment, and Management. New York: Springer; 2009. pp. 135–155. [Google Scholar]
  16. Ferrell BR, Ferrell BA, Rhiner M, Grant M. Family factors influencing cancer pain management. Postgrad Med J. 1991;67(Suppl 2):S64–S69. [PubMed] [Google Scholar]
  17. Ferrell BR, Grant M, Borneman T, Juarez G, ter Veer A. Family caregiving in cancer pain management. J Palliat Med. 1999;2(2):185–195. doi: 10.1089/jpm.1999.2.185. [DOI] [PubMed] [Google Scholar]
  18. Ferrell BR, Grant M, Chan J, Ahn C, Ferrell BA. The impact of cancer pain education on family caregivers of elderly patients. Oncol Nurs Forum. 1995;22(8):1211–1218. [PubMed] [Google Scholar]
  19. Ferris FD, Bruera E, Cherny N, Cummings C, Currow D, Dudgeon D, Von Roenn JH. Palliative cancer care a decade later: accomplishments, the need, next steps -- from the American Society of Clinical Oncology. J Clin Oncol. 2009;27(18):3052–3058. doi: 10.1200/JCO.2008.20.1558. [DOI] [PubMed] [Google Scholar]
  20. Fillenbaum GG, Smyer MA. The development, validity, and reliability of the OARS multidimensional functional assessment questionnaire. J Gerontol. 1981;36(4):428–434. doi: 10.1093/geronj/36.4.428. [DOI] [PubMed] [Google Scholar]
  21. Floyd A, Dedert E, Ghate S, Salmon P, Weissbecker I, Studts JL, Sephton SE. Depression May Mediate the Relationship between Sense of Coherence and Quality of Life in Lung Cancer Patients. Journal of Health Psychology. 2011;16(2):249–257. doi: 10.1177/1359105310371856. [DOI] [PubMed] [Google Scholar]
  22. Gaugler JE, Hanna N, Linder J, Given CW, Tolbert V, Kataria R, Regine WF. Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. [PDF] Psychooncology. 2005;14(9):771–785. doi: 10.1002/pon.916. [DOI] [PubMed] [Google Scholar]
  23. George LK, Fillenbaum GG. OARS methodology. A decade of experience in geriatric assessment. J Am Geriatr Soc. 1985;33(9):607–615. doi: 10.1111/j.1532-5415.1985.tb06317.x. [DOI] [PubMed] [Google Scholar]
  24. Given BA, Given CW, Sherwood PR. Family and Caregiver Needs over the Course of the Cancer Trajectory. J Support Oncol. 2012;10(2):57–64. doi: 10.1016/j.suponc.2011.10.003. [DOI] [PubMed] [Google Scholar]
  25. Given BA, Sherwood P, Given CW. Support for Caregivers of Cancer Patients: Transition After Active Treatment. Cancer Epidemiology Biomarkers & Prevention. 2011;20(10):2015–2021. doi: 10.1158/1055-9965.EPI-11-0611. [DOI] [PubMed] [Google Scholar]
  26. Graves KD, Arnold SM, Love CL, Kirsh KL, Moore PG, Passik SD. Distress screening in a multidisciplinary lung cancer clinic: prevalence and predictors of clinically significant distress. Lung Cancer. 2007;55(2):215–224. doi: 10.1016/j.lungcan.2006.10.001. [DOI] [PMC free article] [PubMed] [Google Scholar]
  27. Gridelli CMD, Ferrara CMD, Guerriero CMD, Palazzo SMD, Grasso GMD, Pavese IMD, Negrini CMD. Informal Caregiving Burden in Advanced Non-small Cell Lung Cancer: The HABIT study. Journal of Thoracic Oncology. 2007;2(6):475–480. doi: 10.1097/01.JTO.0000275342.47584.f3. [DOI] [PubMed] [Google Scholar]
  28. Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. [PDF] Psychol Bull. 2008;134(1):1–30. doi: 10.1037/0033-2909.134.1.1. [DOI] [PubMed] [Google Scholar]
  29. Haley WE, LaMonde LA, Han B, Burton AM, Schonwetter R. Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model. [Research Support, Non-U.S. Gov't] J Palliat Med. 2003;6(2):215–224. doi: 10.1089/109662103764978461. [DOI] [PubMed] [Google Scholar]
  30. Harding R, List S, Epiphaniou E, Jones H. How can informal caregivers in cancer and palliative care be supported? An updated systematic literature review of interventions and their effectiveness. Palliat Med. 2012;26(1):7–22. doi: 10.1177/0269216311409613. [DOI] [PubMed] [Google Scholar]
  31. Honea NJ, Brintnall R, Given B, Sherwood P, Colao DB, Somers SC, Northouse LL. Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden. [PDF] Clin J Oncol Nurs. 2008;12(3):507–516. doi: 10.1188/08.CJON.507-516. [DOI] [PubMed] [Google Scholar]
  32. Hwang SS, Chang VT, Alejandro Y, Osenenko P, Davis C, Cogswell J, Kasimis B. Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a Veterans Affairs (VA) medical center. Palliat Support Care. 2003;1(4):319–329. doi: 10.1017/s1478951503030475. [DOI] [PubMed] [Google Scholar]
  33. Ji J, Zoller B, Sundquist K, Sundquist J. Increased risks of coronary heart disease and stroke among spousal caregivers of cancer patients. Circulation. 2012;125(14):1742–1747. doi: 10.1161/CIRCULATIONAHA.111.057018. [DOI] [PubMed] [Google Scholar]
  34. Kim Y, Baker F, Spillers RL. Cancer caregivers' quality of life: effects of gender, relationship, and appraisal. [PDF] J Pain Symptom Manage. 2007;34(3):294–304. doi: 10.1016/j.jpainsymman.2006.11.012. [DOI] [PubMed] [Google Scholar]
  35. Kim Y, Baker F, Spillers RL, Wellisch DK. Psychological adjustment of cancer caregivers with multiple roles. [PDF] Psychooncology. 2006;15(9):795–804. doi: 10.1002/pon.1013. [DOI] [PubMed] [Google Scholar]
  36. Kim Y, Carver CS. Frequency and difficulty in caregiving among spouses of individuals with cancer: effects of adult attachment and gender. [PDF] Psychooncology. 2007;16(8):714–723. doi: 10.1002/pon.1110. [DOI] [PubMed] [Google Scholar]
  37. Kim Y, Carver CS, Deci EL, Kasser T. Adult attachment and psychological well-being in cancer caregivers: the mediational role of spouses' motives for caregiving. [PDF] Health Psychol. 2008;27(2 Suppl):S144–S154. doi: 10.1037/0278-6133.27.2(Suppl.).S144. [DOI] [PubMed] [Google Scholar]
  38. Kim Y, Carver CS, Spillers RL, Crammer C, Zhou ES. Individual and dyadic relations between spiritual well-being and quality of life among cancer survivors and their spousal caregivers. Psycho-Oncology. 2011;20(7):762–770. doi: 10.1002/pon.1778. [DOI] [PubMed] [Google Scholar]
  39. Kim Y, Given BA. Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer. 2008;112(11 Suppl):2556–2568. doi: 10.1002/cncr.23449. [DOI] [PubMed] [Google Scholar]
  40. Kim Y, Kashy DA, Evans TV. Age and attachment style impact stress and depressive symptoms among caregivers: a prospective investigation. J Cancer Surviv. 2007;1(1):35–43. doi: 10.1007/s11764-007-0011-4. [DOI] [PubMed] [Google Scholar]
  41. Kim Y, Schulz R, Carver CS. Benefit-finding in the cancer caregiving experience. [PDF] Psychosom Med. 2007;69(3):283–291. doi: 10.1097/PSY.0b013e3180417cf4. [DOI] [PubMed] [Google Scholar]
  42. Kim Y, Spillers RL. Quality of life of family caregivers at 2 years after a relative's cancer diagnosis. Psycho-Oncology. 2010;19(4):431–440. doi: 10.1002/pon.1576. [DOI] [PubMed] [Google Scholar]
  43. Kim Y, Wellisch DK, Spillers RL, Crammer C. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers' spirituality. [PDF] Support Care Cancer. 2007;15(12):1367–1374. doi: 10.1007/s00520-007-0265-4. [DOI] [PubMed] [Google Scholar]
  44. Kitrungroter L, Cohen MZ. Quality of life of family caregivers of patients with cancer: a literature review. [PDF] Oncol Nurs Forum. 2006;33(3):625–632. doi: 10.1188/06.ONF.625-632. [DOI] [PubMed] [Google Scholar]
  45. Lee L, Chung C-W, Chang Y-Y, Lee Y-C, Yang C-H, Liou S-H, Wang J-D. Comparison of the quality of life between patients with non-small-cell lung cancer and healthy controls. Quality of Life Research. 2011;20(3):415–423. doi: 10.1007/s11136-010-9761-y. [DOI] [PubMed] [Google Scholar]
  46. Lewis FM. Shifting perspectives: family-focused oncology nursing Research. Oncol Nurs Forum. 2004;31(2):288–292. doi: 10.1188/04.ONF.288-292. [DOI] [PubMed] [Google Scholar]
  47. Lindau ST, Surawska H, Paice J, Baron SR. Communication about sexuality and intimacy in couples affected by lung cancer and their clinical-care providers. Psycho-Oncology. 2011;20(2):179–185. doi: 10.1002/pon.1787. [DOI] [PMC free article] [PubMed] [Google Scholar]
  48. Lynch J, Goodhart F, Saunders Y, O’Connor S. Screening for psychological distress in patients with lung cancer: results of a clinical audit evaluating the use of the patient Distress Thermometer. Supportive Care in Cancer. 2011;19(2):193–202. doi: 10.1007/s00520-009-0799-8. [DOI] [PMC free article] [PubMed] [Google Scholar]
  49. Mancini J, Baumstarck-Barrau K, Simeoni MC, Grob JJ, Michel G, Tarpin C, Auquier P. Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study. European Journal of Cancer Care. 2011;20(4):483–492. doi: 10.1111/j.1365-2354.2010.01227.x. [DOI] [PubMed] [Google Scholar]
  50. Manne S, Badr H, Kashy D. A longitudinal analysis of intimacy processes and psychological distress among couples coping with head and neck or lung cancers. J Behav Med. 2011:1–13. doi: 10.1007/s10865-011-9349-1. [DOI] [PMC free article] [PubMed] [Google Scholar]
  51. Montgomery RV, Gonyea J, Hooyman N. Caregiving and the experience of subjective and objective burden. Family Relations. 1985b;34(1):19–26. [Google Scholar]
  52. Montgomery RV, Stull DE, Borgatta EF. Measurement and the analysis of burden. Res Aging. 1985a;7(1):137–152. doi: 10.1177/0164027585007001007. [DOI] [PubMed] [Google Scholar]
  53. Murray SA, Kendall M, Boyd K, Grant L, Highety G, Sheikh A. Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews. BMJ. 2010:340. doi: 10.1136/bmj.c2581. [DOI] [PMC free article] [PubMed] [Google Scholar]
  54. National Comprehensive Cancer Network. Clinical Practice Guidelines for Supportive Care: Palliative Care. 2011 Retrieved from www.nccn.org.
  55. National Consensus Project. Clinical Practice Guidelines for Quality Palliative Care. 2009 Retrieved from www.nationalconsensusproject.org.
  56. Nijboer C, Tempelaar R, Triemstra M, van den Bos GA, Sanderman R. The role of social and psychologic resources in caregiving of cancer patients. [PDF] Cancer. 2001;91(5):1029–1039. [PubMed] [Google Scholar]
  57. Northfield S, Nebauer M. The Caregiving Journey for Family Members of Relatives With Cancer. Clin J Oncol Nurs. 2010;14(5):567–577. doi: 10.1188/10.CJON.567-577. [DOI] [PubMed] [Google Scholar]
  58. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. Interventions with Family Caregivers of Cancer Patients: Meta-Analysis of Randomized Trials. CA Cancer J Clin. 2010;60(5):317–339. doi: 10.3322/caac.20081. [DOI] [PMC free article] [PubMed] [Google Scholar]
  59. Östlund U, Wennman-Larsen A, Persson C, Gustavsson P, Wengström Y. Mental health in significant others of patients dying from lung cantal health in significant others of patients dying from lung cancer. Psycho-Oncology. 2010;19(1):29–37. doi: 10.1002/pon.1433. [DOI] [PubMed] [Google Scholar]
  60. Persson C, Ostlund U, Wennman-Larsen A, Wengstrom Y, Gustavsson P. Health-related quality of life in significant others of patients dying from lung cancer. Palliat Med. 2008;22(3):239–247. doi: 10.1177/0269216307085339. [DOI] [PubMed] [Google Scholar]
  61. Prasertsri N, Holden J, Keefe FJ, Wilkie DJ. Repressive coping style: Relationships with depression, pain, and pain coping strategies in lung cancer out patients. Lung Cancer. 2011;71(2):235–240. doi: 10.1016/j.lungcan.2010.05.009. [DOI] [PMC free article] [PubMed] [Google Scholar]
  62. Rivera H. Depression Symptoms in Cancer Caregivers. [PDF] Clinical Journal of Oncology Nursing. 2009;13(2):195–202. doi: 10.1188/09.CJON.195.202. [DOI] [PubMed] [Google Scholar]
  63. Roth D, Perkins M, Wadley V, Temple E, Haley W. Family caregiving and emotional strain: associations with quality of life in a large national sample of middle-aged and older adults. [PDF] Quality of Life Research. 2009;18(6):679–688. doi: 10.1007/s11136-009-9482-2. [DOI] [PMC free article] [PubMed] [Google Scholar]
  64. Ryan P, Howell V, Jones J, Hardy E. Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer. Palliat Med. 2008;22(3):233–238. doi: 10.1177/0269216307087145. [DOI] [PubMed] [Google Scholar]
  65. Sanders SL, Bantum EO, Owen JE, Thornton AA, Stanton AL. Supportive care needs in patients with lung cancer. Psycho-Oncology. 2010;19(5):480–489. doi: 10.1002/pon.1577. [DOI] [PubMed] [Google Scholar]
  66. Scherbring M. Effect of caregiver perception of preparedness on burden in an oncology population. [PDF] Oncol Nurs Forum. 2002;29(6):E70–E76. doi: 10.1188/02.ONF.E70-E76. [DOI] [PubMed] [Google Scholar]
  67. Schumacher KL, Stewart BJ, Archbold PG. Mutuality and Preparedness Moderate the Effects of Caregiving Demand on Cancer Family Caregiver Outcomes. [PDF] Nurs Res. 2007;56(6):425–433. doi: 10.1097/01.NNR.0000299852.75300.03. [DOI] [PubMed] [Google Scholar]
  68. Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S. Effects of caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer treatment. [PDF] Oncol Nurs Forum. 2008;35(1):49–56. doi: 10.1188/08.ONF.49-56. [DOI] [PubMed] [Google Scholar]
  69. Sharpe L, Butow P, Smith C, McConnell D, Clarke S. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. [PDF] Psychooncology. 2004 doi: 10.1002/pon.825. [DOI] [PubMed] [Google Scholar]
  70. Sherwood PR, Donovan HS, Given CW, Lu X, Given BA, Hricik A, Bradley S. Predictors of employment and lost hours from work in cancer caregivers. [PDF] Psychooncology. 2008;17(6):598–605. doi: 10.1002/pon.1287. [DOI] [PMC free article] [PubMed] [Google Scholar]
  71. Siminoff LA, Wilson-Genderson M, Baker S. Depressive symptoms in lung cancer patients and their family caregivers and the influence of family environment. Psycho-Oncology. 2010;19(12):1285–1293. doi: 10.1002/pon.1696. [DOI] [PMC free article] [PubMed] [Google Scholar]
  72. Spillers RL, Wellisch DK, Kim Y, Matthews BA, Baker F. Family Caregivers and Guilt in the Context of Cancer Care. [PDF] Psychosomatics. 2008;49(6):511–519. doi: 10.1176/appi.psy.49.6.511. [DOI] [PubMed] [Google Scholar]
  73. Stenberg U, Ruland CM, Miaskowski C. Review of the literature on the effects of caring for a patient with cancer. Psychooncology. 2010;19(10):1013–1025. doi: 10.1002/pon.1670. [DOI] [PubMed] [Google Scholar]
  74. Tishelman C, Lovgren M, Broberger E, Hamberg K, Sprangers MAG. Are the Most Distressing Concerns of Patients With Inoperable Lung Cancer Adequately Assessed? A Mixed-Methods Analysis. J Clin Oncol. 2010;28(11):1942–1949. doi: 10.1200/JCO.2009.23.3403. [DOI] [PubMed] [Google Scholar]
  75. Van Houtven CH, Ramsey SD, Hornbrook MC, Atienza AA, van Ryn M. Economic Burden for Informal Caregivers of Lung and Colorectal Cancer Patients. The Oncologist. 2010;15(8):883–893. doi: 10.1634/theoncologist.2010-0005. [DOI] [PMC free article] [PubMed] [Google Scholar]
  76. van Ryn M, Sanders S, Kahn K, van Houtven C, Griffin JM, Martin M, Rowland J. Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue? Psycho-Oncology. 2011;20(1):44–52. doi: 10.1002/pon.1703. [DOI] [PMC free article] [PubMed] [Google Scholar]
  77. Vos MS, Putter H, van Houwelingen HC, de Haes HCJM. Denial and social and emotional outcomes in lung cancer patients: The protective effect of denial. Lung Cancer. 2011;72(1):119–124. doi: 10.1016/j.lungcan.2010.07.007. [DOI] [PubMed] [Google Scholar]
  78. Wang XS, Shi Q, Lu C, Basch EM, Johnson VE, Mendoza TR, Cleeland CS. Prognostic value of symptom burden for overall survival in patients receiving chemotherapy for advanced nonsmall cell lung cancer. Cancer. 2010;116(1):137–145. doi: 10.1002/cncr.24703. [DOI] [PMC free article] [PubMed] [Google Scholar]
  79. Williams A-L, McCorkle R. Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliat Support Care. 2011;9(03):315–325. doi: 10.1017/S1478951511000265. [DOI] [PubMed] [Google Scholar]

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