Caregivers of patients with brain metastases: A description of caregiving responsibilities and psychosocial well-being

Abstract

BACKGROUND

There are increasing numbers of cancer patients with brain metastases and there is high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers of cancer patients with brain metastases. This study aimed to address this gap in the literature.

METHODS

Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire.

RESULTS

Participants were 21 family caregivers (FCGs) of patients with brain metastases. Many caregivers of cancer patients with brain metastases are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities participants reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy.

CONCLUSION

Though FCGs reported mitigating factors social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.

Introduction

Up to 30% of people with primary cancers at other sites in the body besides the brain will eventually develop brain metastases.¹ With advances in diagnostics and improved treatment options, incidence of brain metastasis is increasing,² but prognosis is still often poor, with survival about 5 months on average for all primary cancer types.³ Patients who develop brain metastases most commonly have symptoms such as headaches, fatigue, nausea, and cognitive impairment; depending on the specific location of the metastases within the brain, patients may also develop visual symptoms, confusion, focal weakness, limb ataxia, difficulty with balance or walking, and seizures.^4–6 Patients with brain metastases show a reduced capacity and ability to make treatment decisions⁷ and while evidence on psychosocial effects of brain metastases are limited, some evidence suggests emotional strain and anxiety were more prevalent among brain metastases patients compared to primary brain tumor and other palliative care patients.⁸

In addition to the potential high level of burden that can be associated with providing care for a patient with cancer,⁹ the neurocognitive and functional impairment of the patient can exacerbate the challenges.¹⁰ The symptoms of brain metastases can be difficult to manage; in one study, 28.6% of brain metastases patients either presented to the emergency department or were admitted to the hospital for acute care two or more times during the last 6 months of a patient’s life.¹¹ Caregivers in previous research have also identified needs such as difficulty finding or accessing available resources to support caregiving, a need for information about changing one’s lifestyle to improve well-being, and a need for support with illness/treatment decisions,¹² particularly in terms of what to anticipate in the future (e.g., life expectancy and anticipated symptoms).¹³

Given the high potential for caregiving burden and the growing population with brain metastases, there has been a call for interventions to address caregivers’ well-being.¹⁴ Although some interventions have been developed to improve outcomes for patients with brain metastases in regards to knowledge, satisfaction, self-management, and adherence to planned treatment,¹⁵ these interventions often do not sufficiently address the needs of caregivers.¹² Further, there has been little work describing the caregiving responsibilities and psychosocial well-being in caregivers of patients with brain metastases, without which tailored interventions cannot be developed. Thus, the goal of this study is to help fill this gap in the literature by describing the psychosocial experience of family caregivers of patients with brain metastases.

Method

The present study is a secondary analysis of baseline data from a pilot study focused on family caregivers of patients with brain tumors.¹⁶ The study procedure and measures are described briefly here.

Sample

Participants were 21 family caregivers (FCGs) of patients with brain metastases recruited from a neuro-oncology clinic at a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center from May to August 2017. Inclusion criteria in the pilot study were (1) identifying as the individual who provided the most care for an adult patient diagnosed with brain metastases; (2) being able to speak and read English; (3) having access to email; and (4) being at least age 18. Informed consent was obtained from each participant included in the study.

Measures

FCGs completed a baseline questionnaire which included demographic variables (e.g., age, gender, race/ethnicity, education level, employment status, income, the caregiver’s relationship to the patient). FCGs also reported on aspects of their caregiving responsibilities, including how many hours per week they spent providing care to the patient on average. They also indicated (yes/no) whether they provided the patient with assistance in 7 activities of daily living (ADLs) and 8 instrumental activities of daily living (IADLs).

FCGs completed the 12-item Zarit Caregiver Burden-12 (Zarit-12) to assess levels of caregiver burden.¹⁷ Items are summed and higher scores indicate higher levels of burden. A score of 9 represents the 50^th percentile for caregiver burden, and a score of 17 represents the 75^th percentile.¹⁸

Psychological distress was assessed using the 14-item Hospital Anxiety and Depression Scale (HADS),¹⁹ which is comprised of two 7-item subscales: Anxiety (HADS-A) and Depression (HADS-D). Responses are given on a Likert-type scale ranging from 0 to 3, with 0 representing no or mild symptoms and 3 representing severe symptoms. Item scores are summed to provide subscale scores for the HADS-A and HADS-D ranging from 0 to 21, with higher scores indicating worse symptoms of anxiety and depression. A clinical cut-off score of 8 is typically used to identify possible cases of anxiety and depression.²⁰

The Coping Self-Efficacy Scale (CSE)²¹ measures perceived self-efficacy for coping with challenges and threats over 26 items. Respondents rate each item on an 11-point Likert-type scale (0 = Cannot do at all; 5 = Moderately certain can do; 10 = Certain can do) the extent to which they believe they can perform behaviors that are important for adaptive coping (e.g., “Get emotional support from friends and family”). Summing the item ratings creates an overall score ranging from 0 to 260, with higher scores indicating greater coping self-efficacy.

A modified version of the 8-item Duke-UNC Functional Social Support Questionnaire (FSSQ)²² was used as a measure of functional support. Responses to each item are provided on a Likert-type scale ranging from 1 (Much less than I would like) to 5 (As much as I would like). Item scores are averaged to create a total score ranging from 1 to 5, with higher scores indicating greater perceived social support.

The Duke Social Support and Stress Scale (DUSOCS)²² is a measure of network support and strain and produces four summary scale scores: Family Support, Family Stress, Non-Family support, and Non-Family Stress. Using a 3-point scale (0 = None, 1= Some, 2 = A lot), respondents rate how supportive and/or stressful they feel various people in their life are. Each summary scale score ranges from 0–100; higher scores on Family Support or Non-Family Support indicate more supportive relationships, and higher scores on Family Stress or Non-Family Stress indicate more stressful relationships.

Results

The 21 caregivers that participated in our study were mostly female, White, non-Hispanic, and had at least some college education. Mean age was approximately 60 years old. Most were not currently working, primarily due to retirement. Most caregivers provided care to a patient with metastatic melanoma, and the majority of caregivers were the patient’s spouse. The average length of the caregiver-patient relationship was 29 years. Additional caregiver demographics are found in Table 1.

Table 1.

Caregiver demographics (N = 21).

		n or M	% or SD
Gender	Female	12	57.1
	Male	9	42.9
Patient primary cancer site	Melanoma	10	47.6
	Lung	7	33.3
	Breast	4	19.0
Relationship to patient	Spouse	18	85.7
	Child	1	4.8
	Other	2	9.5
Race	White/Caucasian	20	95.2
	American Indian	1	4.8
Ethnicity	Non-Hispanic	18	94.7
	Hispanic	1	5.3
	Missing	2	9.5
Education	Less than high school	1	4.8
	High school graduate or equivalent	5	23.8
	Some college or vocational school	3	14.3
	College graduate (4 years)	3	14.3
	Some graduate or professional school	2	9.5
	Graduate or professional degree	7	33.3
Employment status	Retired	10	47.6
	Not currently employed	3	14.3
	Part-time	3	14.3
	Full-time	5	23.8
Total annual household income	$10,000–24,999	4	19.0
	$25,000–39,999	1	4.8
	$40,000–49,999	0	0.0
	$50,000–74,999	1	4.8
	$75,000 or more	8	38.1
	Prefer not to answer	7	33.3
Perceived adequacy of financial situation	“Not very good”	4	19.0
	“Comfortable”	12	57.1
	“More than adequate to meet my needs”	5	23.8
Age (years)		60.48	9.57
Length of relationship with patient (years)		28.89	11.78

Caregiving Responsibilities

Descriptive statistics for caregiving responsibilities are displayed in Table 2. About half of caregivers reported spending between 7 and 20 hours per week providing care, and about one quarter reported spending over 20 hours per week caregiving. Caregivers reported that they regularly help the patient with an average of one activity of daily living (ADL), most commonly feeding (33.3%) and walking or transferring (e.g., moving from a bed to a wheelchair; 28.6%). Caregivers reported helping the patient with an average of 4 instrumental ADLs (IADLs), most commonly housework (76.2%) and meal preparation (76.2%). One third of caregivers indicated that they did not help the patient with any ADLs, and only one caregiver indicated that they did not help with any IADLs.

Table 2.

Descriptive statistics: Caregiving responsibilities & psychosocial well-being.

	n or M	% or SD	Observed range
			Min.	Max.
Time spent caregiving
< 7 hours/week	6	28.6
7–20 hours/week	10	47.6
> 20 hours/week	5	23.8
# of ADLs FCGs assist with (M, SD)	1.43	1.50	0	6
Feeding	7	33.3
Toileting	0	0.0
Selecting appropriate attire	4	19.0
Grooming	1	4.8
Continence maintenance	1	4.8
Dressing	2	9.5
Bathing	4	19.0
Walking or transferring	6	28.6
Other ADL(s)	3	14.3
# of IADLs FCGs assist with (M, SD)	4.38	2.27	0	7
Managing finances	15	71.4
Transportation	14	66.7
Shopping	14	66.7
Meal preparation	16	76.2
Using phone/communication devices	7	33.3
Medication management	9	42.9
Housework	16	76.2
Other IADL(s)	1	4.8
Anxiety symptoms (HADS-A)	7.48	3.34	3	15
Depression symptoms (HADS-D)	9.14	2.74	5	13
Social support
FSSQ	4.10	1.61	1.75	7.25
DUSCOCS Support	49.13	20.31	13.64	77.27
Social stress (DUSCOCS Stress)	16.02	14.35	0.00	50.00
Caregiver burden (Zarit-12)	10.43	6.35	1	25
Coping self-efficacy (CSE)	89.67	25.90	50	130

Note. FCGs = family caregivers; ADLs = activities of daily living; IADLs = instrumental activities of daily living.

Caregiver Psychosocial Well-Being

Descriptive statistics for caregiver psychosocial well-being variables are displayed in Table 2. On average, caregivers reported clinically-elevated depression symptoms, and their anxiety symptoms fell just below the clinical cut-off score of 8 on the HADS-A.²⁰ They reported moderate levels of social support overall—with moderate-to-high levels on the FSSQ (4.10 on a scale of 0 to 5), and moderate levels on the DUSOCS Support (49.13 on a scale of 0 to 100)—and relatively low levels of social stress on the DUSOCS Stress (16.02 on a scale of 0 to 100). Participants reported moderate levels of caregiver burden—with a mean on the Zarit-12 falling slightly over the 50^th percentile—and low coping self-efficacy—with a mean score of just under 90 on a scale of 0 to 260.

We ran bivariate correlations between caregiving responsibilities and psychosocial well-being variables (see Supplemental Digital Content). As expected, burden was positively correlated with time caregiving (r=.59, p<.01), anxiety (r=.54, p<.05), depression (r=.59, p<.01), and social network strain (DUSOCS-Stress; r=.55, p<.01), and negatively correlated with coping self-efficacy (r=−.54, p<.05). Interestingly, burden was positively associated with functional support (FSSQ; r=.63, p<.01). Functional support was positively related to anxiety (r=.50, p<.05) and depression (r=.49, p<.05) and negatively correlated with coping self-efficacy (r=−.57, p<.01).

Discussion

This study aims to address the lack of data regarding the responsibilities and psychosocial well-being associated with providing care for a patient with brain metastases. Our results indicate that while there is variability in both caregiving responsibilities and psychosocial well-being of caregivers of patients with brain metastases, many are devoting extensive time to providing care. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. While our results largely reflect what is known about caregiving activities in the United States,²³ there is little data specifically focused on the population of caregivers caring for patients with brain metastases.

Analyses of the bivariate correlations indicate that more reported functional support in this sample was positively associated with anxiety, depression, and burden. While these associations might seem surprising, they may be highlighting cases where caregivers report more support because they have more stress, and thus an underlying need for more support.^24,25 Or, the simple act of asking for support may feel like a burden, as other work has shown that while many FCGs are significantly distressed, they do not utilize formal psychological support.²⁶ While social support is normally seen as a positive buffer for negative psychosocial outcomes, in some instances it may also highlight underlying negative psychological consequences of caregiving (i.e., greater stress). Our finding that greater levels of reported functional support are also associated with decreased coping self-efficacy may have a similar explanation—caregivers who do not feel able to cope with the stresses of caregiving may be more likely to engage their social networks to help them cope.

There are several limitations to our work. Our sample was relatively small and represented caregivers across the patients’ trajectory. The cross-sectional nature of our analyses means that more work is needed to determine the key drivers of caregiver distress, particularly over time. However, our work indicates a need to specifically target the psychosocial well-being of family caregivers. Although caregivers report having good support networks, this does not seem to fully ameliorate burden and distress, suggesting more formal resources may be needed, such as counseling or case management. Supporting caregivers ultimately leads to better care for patients and is a key aspect of family-centered care.²⁷ This descriptive work provides a foundation for identifying areas for future targets for intervention. For example, given the amount of time dedicated to caregiving, health care systems should consider offering caregiving support programs concurrent to patient appointments or using technology to allow caregivers to participate remotely at times that work for them.

Conclusions

Family caregivers of patients with brain metastases reported significant distress, despite mitigating factors such as social support. These findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being.^10,28 By understanding the demands on caregivers of patients with brain metastases, providers will be able to improve delivery of care in a family-centered care approach.