Family caregivers' distress levels related to quality of life, burden, and preparedness

Abstract

Objective Family caregivers (FCGs) caring for loved ones with lung cancer are at risk for psychological distress and impaired quality of life (QOL). This study explores the relationship between FCGs’ distress, per the Distress Thermometer (DT), and FCGs’ QOL, burden, and preparedness. The purpose is to identify types of problems unique to FCGs in cancer care. Methods FCGs of patients diagnosed with non-small cell lung cancer (NSCLC) were recruited from an adult outpatient setting at a comprehensive cancer center. Questionnaires included demographic information, City of Hope QOL Scale-Family Version, Caregiver Burden Scale, FCG Preparedness, and DT. Baseline data were utilized for this analysis. Results Of the FCGs (N=163), 68% were spouses, 64% female, and 34% worked full-time. FCG age ranged from 21 to 88 years with a mean of 57 years. FCGs cared for patients with NSCLC stage I-III (44%) and stage IV (56%). Psychological distress (DT mean = 4.40) was moderate. DT scores were highly correlated with seven of the eight explanatory variables. Secondary principal components analysis of the explanatory variables combined correlated variables into three constructs identified as Self Care Component, FCG Role Component, and FCG Stress Component. Simultaneous multiple regression of distress onto the three components showed they accounted for 49% of the variance in distress. Conclusion This exploration of FCGs’ concerns associated with elevated distress scores, as measured by the DT, helped identify three component problem areas. These areas warrant further psychosocial assessment and intervention to support FCGs as they care for the patient with cancer.

Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer

“…Our previous research suggests that, as the patient transitions through initial diagnosis and treatment, caregiver burden and psychological distress increased, while perceived caregiving skills preparedness and QOL decreased over time . Increased FCG psychological distress was associated with 3 factors, including the ability to maintain QOL (self‐care component), the perception of caregiving preparedness and caregiving demands (FCG role component), and the emotional reaction to caregiving (FCG stress component) …”

“…13 Increased FCG psychological distress was associated with 3 factors, including the ability to maintain QOL (self-care component), the perception of caregiving preparedness and caregiving demands (FCG role component), and the emotional reaction to caregiving (FCG stress component). 14 FCGs receive minimal attention within the current health care system, in which the focus is primarily on the needs of patients. Evidence-based care models are needed to support FCGs in their caregiving role.…”

Burden, emotional distress and quality of life among informal caregivers of lung cancer patients: An exploratory study

“…Several studies have been conducted so far to explore the associations of caregiving burden with other caregiver variables among caregivers of cancer patients. Caregiver burden in spousal/family caregivers was found to be associated with their own psychological distress (Fujinami et al., ; Kim, Duberstein, Sörensen & Larson, ; Milbury et al., ). Greater caregiver burden was also found to be related to poorer QoL among family caregiver (Fujinami et al., ; Rha, Park, Song, Lee & Lee, ).…”

“…Caregiver burden in spousal/family caregivers was found to be associated with their own psychological distress (Fujinami et al., ; Kim, Duberstein, Sörensen & Larson, ; Milbury et al., ). Greater caregiver burden was also found to be related to poorer QoL among family caregiver (Fujinami et al., ; Rha, Park, Song, Lee & Lee, ). Linkage between depressive symptoms and QoL among family caregivers of cancer patients has also been examined in a recent study and caregivers’ depressed mood was shown to be closely associated with their concurrent QoL (Kim et al., ).…”

The validity of the Distress Thermometer in female partners of men with prostate cancer

“…A rapid review conducted for the purposes of this study found that quantitative studies with partners or caregivers of adult cancer patients which included the DT as a measure to assess distress (predictor or outcome) typically used a DT cut‐off ≥4 (Chambers et al, ; Chambers, Girgis, et al, ; Chatterton et al, ; Fujinami et al, ; Howell et al, ; Hughes, Sargeant, & Hawkes, ; Hutchison et al, ; Morris et al, ; Trad et al, ) or ≥5 (Badr, Gupta, Sikora, & Posner, ; Feiten et al, ; Goebel, von Harscher, & Mehdorn, ; Goldzweig, Rottenberg, Peretz, & Baider, ; Halkett et al, ; Juarez, Ferrell, Uman, Podnos, & Wagman, ; Long et al, ; Sklenarova, Haun, et al, ; Ugalde, Krishnasamy, & Schofield, ; Weide et al, ; Zwahlen, Hagenbuch, Jenewein, Carley, & Buchi, ). However, systematic reviews and meta‐analyses of studies validating the DT or brief screening measures in the cancer context are silent with regard to the optimal DT cut‐off to identify distress in partners/caregivers.…”