Quality of Life and Well-Being of Family Caregivers of Prolonged Mechanically Ventilated Patients: An Observational Study

Abstract

Importance: Although previous studies have examined the impact of caregiving on the quality of life (QOL) of caregivers of home-ventilated patients, few studies have dealt with the QOL of caregivers of family members who require prolonged mechanical ventilation in long-term-care facilities.

Objective: To assess the personal experiences of caregivers of family members requiring prolonged mechanical ventilation by applying the Do-Live-Well framework to examine the potential associations among caregivers’ QOL, well-being, level of burden, and participation.

Design: A descriptive and correlative cross-sectional single-center study.

Setting: A chronic ventilator-dependent division in a long-term acute-care facility.

Participants: Twenty-six family caregivers of patients requiring mechanical ventilation completed a series of questionnaires.

Outcome and Measures: The World Health Organization Quality of Life–Brief, the Personal Wellbeing Index, the Zarit Burden Index, items measuring participation (from the Health Promotion Activities Scale and items based on the Do-Live-Well framework), and a sociodemographic questionnaire were administered.

Results: High burden was correlated with low well-being and lower social relations (a domain of QOL). The perception and meaning attributed to the role of caregiving were correlated with QOL. Participation in health-promoting activities was associated with well-being and QOL.

Conclusions and Relevance: Participation in health-promoting activities and the caregivers’ personal experiences were positively linked to QOL and well-being and linked negatively to burden. Although these findings require further investigation, they also point to the importance of developing occupational therapy support programs for family caregivers of mechanically ventilated patients.

Plain-Language Summary: Caregivers of family members who require prolonged mechanical ventilation bear a heavy burden that can affect their quality of life. For this study 26 caregivers of family members hospitalized in a long-term acute care facility completed questionnaires on their quality of life, well-being, burden, participation in activities, and perceptions of their caregiving role. We found that quality of life was enhanced by participation in health-promoting activities and influenced by the caregivers’ personal experiences and burden. Occupational therapy interventions should be designed to improve the quality of life of caregivers and to identify caregivers who are at risk of any negative effects on their quality of life and well-being.

This study observed the quality of life and well-being of caregivers of family members who require prolonged mechanical ventilation.

Prolonged mechanical ventilation is defined as dependence on mechanical ventilation for more than 21 consecutive days, at least 6 hr/day (MacIntyre et al., 2005). The number of patients under prolonged mechanical ventilation has increased exponentially as a result of advances in intensive care that have led to rising survival rates after acute respiratory failure (Huang et al., 2022). Correlatively, growing numbers of family members are involved in their care. There is evidence that the presence of family members at the bedside of patients hospitalized in intensive care has positive cognitive and emotional effects (Hafsteindóttir, 1996). For this reason, families are often asked to play an active role in planning and caring for their hospitalized family members (Nadig et al., 2016).

Caregiving is an occupation that involves providing care for others (American Occupational Therapy Association [AOTA], 2020); however, caring for a critically ill person is known to have both positive and negative effects on caregivers. The benefits include personal satisfaction in relieving their family member’s discomfort, feeling useful and needed, and finding more meaning in life (Tate & Choi, 2020). However, caregiving is also associated with symptoms of anxiety and depression and places an emotional and financial burden on caregivers (Nadig et al., 2016). In addition, caregivers report disruption in their lifestyle and roles in areas such as self-care, caring for others, eating and sleeping habits, social and leisure activities, and lesser ability to work normally for a long period after the onset of the critical illness (Evans et al., 2012). Thus, caring for a family member who requires mechanical ventilation is likely to have a complex impact on caregivers’ quality of life (QOL) (Haines et al., 2015) and well-being.

QOL is defined as a person’s “perception of their position in life, in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns” (WHOQOL Group, 1995, p. 1405). Health-related QOL focuses more narrowly on the effects of health, illness, and treatment on a person’s QOL (Ferrans et al., 2005). Well-being is achieved when individuals are able to regulate their emotions in a positive way, find meaning and purpose in life, and maintain supportive relationships with others (Centers for Disease Control and Prevention, 2024). There is scant research on the health-related QOL of family caregivers of people requiring mechanical ventilation residing in long-term care facilities. The few studies that have been conducted report psychological symptoms of depression or anxiety (Haines et al., 2015; Nadig et al., 2016), physical symptoms, inadequate social support, and feelings of burden or overload (Dale et al., 2020; Nadig et al., 2016). In their review, Raj et al. (2021) described burden as both the emotional response to caregiving demands and the time spent providing care. Van Roij et al. (2021, p. 7976) defined burden as a “multidimensional biopsychosocial reaction resulting from an imbalance of care demands relative to caregivers’ personal time, social roles, physical and emotional states, financial resources, and formal care resources given the other multiple roles they fulfill.” This definition suggests that striking a balance between the caregiver’s roles can contribute to reducing the experience of burden. Caregiving for chronically ill patients also means that there is less time for engaging in daily and leisure activities that are personally satisfying and congruent with expectations within one’s culture (AOTA, 2020). Among family caregivers of people with chronic diseases (e.g., chronic obstructive pulmonary disease, cancer, terminal patients, heart failure), an association between QOL and burden has been reported (Cedano et al., 2013; Hughes et al., 1999; Rha et al., 2015). Caregivers are also likely to experience greater changes in their routines and daily activities (Tan et al., 2020).

An additional effect of caregiving for chronically ill patients is reduced participation in the daily activities of the caregivers. Participation is defined in the International Classification of Functioning, Disability and Health as “involvement in a life situation,” and involvement includes taking part in activities, being included or engaged in activities, being accepted, or having access to needed resources (World Health Organization [WHO], 2002).

One framework that captures the multidimensional effects of caregiving is the Do-Live-Well (DLW) framework (Moll et al., 2015), which provides a broad perspective on well-being and health in the general population. It emphasizes that “what you do every day matters” and can affect a person’s health and well-being. The framework has four components:

1. dimensions of experience (activating body, mind, and senses; connecting with others; contributing to society; taking care of yourself; building security and prosperity; developing and expressing identity, developing capabilities and potential; experiencing pleasure and joy)

2. activity patterns (engagement, meaning, balance, control/choice, routine)

3. health and wellness outcomes (physical, mental, social, emotional, and spiritual health and wellness)

4. personal (age, gender, ethnicity, health, etc.) and social forces (accessibility, affordability, restrictive rules, etc.).

In the present study, the first two components were grouped under the global heading of Participation, because they refer to factors related to the caregiver’s involvement in a range of life situations. In light of previous studies on the health, well-being, and QOL of caregivers of people with chronic diseases, we measured the third component of the DLW framework, health and wellness, by evaluating the caregivers’ sense of burden, well-being, and QOL (Haines et al., 2015; Nadig et al., 2016). In their review, Hamilton et al. (2023) described five studies that relied on the DLW framework as the theoretical framework for their research. These studies focused on diverse populations (college students, older adults, preretirees, etc.). To capture the unique characteristics of each population, the authors of those studies developed a set of questions for each study according to the DLW framework. The results of these studies were linked or coded according to the components of the DLW framework.

The DLW framework can shed new light on understanding the different aspects of participation of caregivers of family members who require mechanical ventilation and on the factors that influence their sense of burden, health, and well-being. Specifically, the DLW can serve to better identify caregivers who are at risk for low QOL and reduced participation.

To do so, we examined the associations between the caregivers’ burden, participation (participation in health-promoting activities and caregivers’ personal experience of caring), well-being, and QOL; the clinical profiles of the family members who require mechanical ventilation and the ways in which they affect the caregiver’s burden, well-being, and QOL; the associations between social forces (i.e., the number of visits per week by the caregiver) and burden, participation, well-being, and QOL; and potential differences in burden, well-being, and QOL between caregivers as a function of family relationship with the patient (spouse, parent, child, or sibling).

Method

Study Design and Procedure

This descriptive, correlative, cross-sectional study was conducted in a division for the treatment of patients who require mechanical ventilation in a university-affiliated, long-term acute care facility. Patients are admitted to this facility from acute care hospitals where they were ventilated and after weaning attempts failed. The patients are admitted for continuous multidisciplinary care, functional rehabilitation, and further attempted weaning of those for whom it is appropriate.

Using a convenience sample, we collected data from 26 family caregivers of 26 patients. For inclusion, caregivers had to be family members of people who require mechanical ventilation, and they had to be fluent in spoken and written Hebrew or English. Both the caregivers and the patients were adults (>18 yr old). Caregivers of patients who were hospitalized in the division for less than 1 mo were excluded from the study. After receiving approval from the Herzog Medical Center Institutional Review Board, all eligible family caregivers were invited by an occupational therapist to participate in the study. Of 200 ventilated patients in the division, 80 caregivers met the inclusion criteria, but only 26 caregivers (32.5%) were willing to participate in the study. Caregivers who agreed to take part signed a consent form and were given the questionnaires to complete.

Measures

We chose the following instruments to examine each of the four components of the DLW framework. Because burden and QOL were found to be correlated in other populations of caregivers (Cedano et al., 2013; Hughes et al., 1999; Rha et al., 2015), we included them under one component of this framework.

Participation Measures

In this study and according to the DLW framework, participation includes “participating in health-promoting activities and both dimensions of experience and activity patterns.”

Health Promotion Activities Scale.

An eight-item self-report questionnaire, the Health Promotion Activities Scale (HPAS; Bourke-Taylor et al., 2012) is rated on a 7-point Likert scale ranging from 1 (never) to 7 (once or more every day). Participants indicate how often they engage in different activities (e.g., personal health care tasks; a physically active recreational pursuit that you do alone; a physically active recreational pursuit that you do with other people; spiritual or rejuvenating personal time; social activities with people who are important and supportive toward you; time out for yourself to spend as you wish; a quiet, physically inactive leisure pursuit that you do alone; and a quiet, physically inactive leisure pursuit that you do with others), yielding a total score ranging from 8 to 56. A higher score indicates greater engagement in health-promoting activities. In this study, we refer to this as “participation in health-promoting activities.” Cronbach’s α in the present sample was .77, similar to the published internal consistency of the scale (Bourke-Taylor et al., 2012).

DLW-Based Questions.

We developed nine DLW-based questions for this study to capture what we refer to as the “caregivers’ dimensions of experience and activity patterns” related to their caregiving role (the items are as follows: Visits and caring are meaningful to me; Visit to conform to social norms; Accessibility of hospital; Caregiving as physical activity; Visits are rewarding; Caregiving as primary role; Caregiving helps bring me closer to family and friends; Including others in caring helps reduce burden; and Uncertainty regarding the future is hard). The participants rated each question on a scale ranging from 1 (strongly agree) to 4 (strongly disagree). (See Table A.1 in the Supplemental Material, available online with this article at https://research.aota.org/ajot.) Each question was analyzed separately. However, internal consistency for all nine questions was acceptable (Cronbach’s α = .73).

Health and Wellness: Burden, Well-Being, and QOL.

Zarit Burden Interview

The self-report Zarit Burden Interview (ZBI; Zarit et al., 1985) has 22 items that are rated on a 5-point Likert scale ranging from 0 (never) to 4 (nearly always), yielding a total score ranging from 0 to 88; a higher score reflects a greater sense of burden (Hagell et al., 2017). The level of burden is classified into four categories: none to mild (0–20), mild to moderate (21–40), moderate to severe (41–60), and severe burden (61–88). Cronbach’s α in this sample was .82 and was considered a good internal consistency, similar to the known psychometrics of the ZBI (Al-Rawashdeh et al., 2016).

Personal Wellbeing Index–Adult

A self-report questionnaire, the Personal Wellbeing Index–Adult (PWI–A; International Wellbeing Group, 2006) assesses well-being in eight domains: Standard of Living, Personal Health, Achievements in Life, Personal Relationships, Personal Safety, Community Connectedness, Future Security, and Spirituality or Religion. Each question represents a domain and is rated on a 10-point Likert-type scale ranging from 0 (completely dissatisfied) to 10 (completely satisfied). The total score is the average of the eight questions (0–10); a higher score indicates greater well-being. The PWI–A has an additional optional item that refers to the domain Life as a Whole, which is scored separately. Cronbach’s α in this sample was .87, similar to the published internal consistency of the instrument (The International Wellbeing Group, 2006).

WHOQOL-BREF

The 26-item, self-report World Health Organization Quality of Life–Short Version questionnaire (WHOQOL–BREF; WHO, 1996) covers four domains: Physical Health, Psychological Health, Social Relations, and Environmental Health. Items are rated on a 5-point Likert scale ranging from 1 (worst condition of QOL) to 5 (best situation of QOL). A higher score indicates greater QOL. In this sample Cronbach’s α = .88 for Physical Health, .71 for Psychological Health, .63 for Social Relations, and .82 for Environmental Health. The internal consistencies of all domains were comparable with the published internal consistency of the questionnaire (WHO, 1996).

Personal and Social Forces Measures

Demographic information, caregiver’s characteristics, and patient characteristics.

Family Caregiver Questionnaire

This self-report questionnaire comprised two parts: personal information of the caregiver (e.g., age, gender, marital status, and kinship with the patient) and social information (e.g., work, level of income, support from family and friends, and frequency of visits). The questionnaire was developed for the purposes of this study (see Table A.2 in the Supplemental Material). In this study, we refer to it as measuring “caregivers’ personal and social forces.”

Patient Medical Information Questionnaire

The following data were retrieved from the medical files: age, gender, level of consciousness, and length of ventilation. In this study, we refer to it as measuring “patients’ personal forces.”

Data Analysis

The data were analyzed using IBM SPSS Statistics (Version 25). Descriptive statistics consisting of the means and frequencies were used to describe the demographic characteristics of the caregivers and the patients requiring mechanical ventilation and the scores for the HPAS, ZBI, PWI–A, and WHOQOL– BREF questionnaires. We used Pearson correlation analyses to calculate correlations between burden, well-being and QOL and between length of hospitalization and QOL, well-being, participation, and burden. We used the Spearman test to calculate correlations between the level of consciousness and QOL, well-being, participation, and burden. A Kruskal-Wallis test was used to test for differences in burden, participation, well-being, and QOL as a function of kinship with the ventilated patient (parent, spouse, sibling, or child). A p value of less than 0.05 was considered statistically significant.

Results

Sample

Twenty-six caregivers participated in this study. Their age ranged from 24 to 78 yr (M = 55.62, SD = 15.5), of whom 65.4% (n = 17) were female, and 92.3% (n = 24) were married or living with a partner. Sixty-nine percent of caregivers (n = 18) reported having adequate social support from family or friends, and 53.8% (n = 14) reported that they worked part or full time. Half of the caregivers were the parents of the patients requiring mechanical ventilation (n = 13), and 80.8% (n = 21) visited their family members four times or more per week.

The age of the 26 mechanically ventilated patients ranged from 36 to 90 yr (M = 68.38, SD = 14.4); 46.2% (n = 12) were conscious, 19.2% (n = 5) were in a minimally conscious state, and 34.6% (n = 9) were in a vegetative state. They had been hospitalized in the long-term acute care facility from 1 mo to more than 8 yr (M = 18.5 mo, SD = 22.11).

Correlations Between Caregivers’ Burden, Participation, Well-Being, and QOL

The mean caregivers’ scores for burden, well-being, QOL, and participation in daily life activities are presented in Table 1. As shown, the mean level of burden was in the lower range of mild to moderate. The distribution of the level of burden indicated that 54% (n = 14) of the caregivers reported “none to mild” as their level of burden, 38% (n = 10) reported mild to moderate, and only 8% (n = 2) experienced a moderate to severe level of burden. The mean levels of well-being and QOL (in all four domains) were moderate.

Table 1.

Descriptive Statistics for Burden, Well-Being, QOL, and Participation Questionnaires

Variable	Range	M (SD)
Burden	9–58	23.58 (11.91)
Well-being	4–10	7.17 (1.67)
QOL domain
Physical Health	4.57–20.00	14.28 (3.36)
Psychological Health	10.00–19.33	14.36 (2.1)
Social Relations	10.67–20.00	15.18 (2.89)
Environmental Health	9.50–20.00	14.59 (2.34)
Participation in health-promoting activities	16–48	35.12 (9.28)
Dimensions of experience and activity patterns
Visits and caring are meaningful to me a	1–3	1.12 (0.44)
Visit to conform to social norms b	1–4	2.67 (1.12)
Accessibility of hospital	1–4	1.88 (0.9)
Caregiving as physical activity b	1–3	1.92 (0.77)
Visits are rewarding a	1–3	1.48 (0.58)
Caregiving as primary role b	1–4	2.46 (1.1)
Caregiving helps bring me closer to family and friends a	1–4	2.56 (0.87)
Including others in caring helps reduce burden b	1–4	1.92 (0.83)
Uncertainty regarding the future is hard b	1–4	1.67 (0.81)

Note. N = 26. QOL = quality of life.

Twenty-five participants completed this item.

Twenty-four participants completed this item.

As presented in Table 2, with respect to the association between burden and QOL, a statistically significant negative moderate correlation was only found between burden and the Social Relations domain of QOL, where higher levels of burden were associated with lower social relations. There was no statistically significant correlation between burden and the total well-being score. However, moderate, negative, statistically significant correlations were found between burden and several domains of well-being: Standard of Living; Personal Relationships; Community Connectedness; and Future Security, where higher burden levels were associated with lower reported well-being in these domains.

Table 2.

Correlations Between Caregivers’ Burden, Well-Being and Quality of Life

Variable	Correlations for Caregivers’ Burden
Well-being
Personal Wellbeing Index–Adult
Total score	−.38
Standard of Living	−.43 a *
Personal Health	−.07 a
Achievements in Life	−.38 a
Personal Relationships	−.53 a **
Personal Safety	−.23 a
Community Connectedness	−.49 a **
Future Security	−.54 a **
Spirituality or Religion	−.29 a
Life as a Whole	−.19 a
QOL domain
Physical Health	−.07
Psychological Health	−.08
Social Relations	−.42*
Environmental Health	−.20

Note. N = 26. QOL = quality of life.

*p < .05. **p < .01.

Spearman correlation.

The correlations between participation, burden, well-being, and QOL were calculated (Table 3). No significant correlations were found between burden and participation. However, moderate statistically significant correlations were found between well-being, all four domains of QOL, and participation in health-promoting activities but not with all dimensions of experience and activity patterns.

Table 3.

Correlations Between Caregivers’ Participation, Burden, Well-Being, and QOL a

Variable	Burden	Well-Being	QOL Domains
Variable	Burden	Well-Being	Physical Health	Psychological Health	Social Relations	Environmental Health
Participation in health-promoting activities	−.12	.56**	.42*	.58**	.48*	.59**
Dimensions of experience and activity patterns b
Caring is meaningful to me	.10	.07	.04	.28	−.27	.25
Visit to conform to social norms	−.10	.12	.09	.13	.15	.08
Accessibility to hospital	.31	.01	.26	.27	−.27	−.05
Caregiving as physical activity	.02	.34	.25	.36	.11	.45*
Visits are rewarding	.14	.16	.48*	.27	−.38	.35
Caregiving as primary role	−.16	.50*	.37	.51*	.18	.62**
Caregiving helps bring me closer to family and friends	−.01	.25	.53**	.21	.00	.40*
Including others in caring helps reduce burden	.26	−.24	.22	.21	−.33	.01
Uncertainty regarding the future is hard	−.09	.30	.35	.35	.13	.23

Note. N = 26. QOL = quality of life.

*p < .05. **p < .01.

Spearman correlation.

Note that in the dimensions of experience and activity patterns, a positive correlation has a negative meaning, and vice versa.

There was a statistically significant moderate correlation between caregiving as the person’s primary everyday role and both well-being and the Psychological and Environmental Health domains of QOL (Table 3). Thus, identifying caregiving as the caregiver’s primary role was associated with lower well-being and lower psychological and environmental QOL. A positive statistically significant moderate correlation was found between reporting that the role of caregiving drew them closer to their family and friends and the Physical and Environmental Health domains of QOL. Caregivers who reported feeling closer to family and friends reported lower QOL. Similarly, we found a positive, moderate, statistically significant correlation between feeling that caring for the family member who requires mechanical ventilation kept the caregivers more physically active and the Environmental Health domain of QOL, whereas feeling that visits in the prolonged mechanical ventilation ward were rewarding was moderately significantly correlated with reduced physical QOL (Table 3).

Correlations Between Both Personal Forces of Family Members Requiring Prolonged Mechanical Ventilation and Caregivers’ Personal and Social Forces and Caregivers’ Participation, Burden, Well-Being, and QOL

We also examined the correlations between the patient’s characteristics, including length of hospitalization and level of consciousness (patient’s personal forces) and the caregiver’s sense of burden, well-being, and QOL (Table 4). The length of hospitalization was negatively moderately correlated with two of the dimensions of experience and activity patterns: the caregivers’ reports of being more physically active and being socially obliged to keep visiting. We found no statistically significant correlations between the patient’s level of consciousness and the caregiver’s participation, burden, well-being, or QOL. By contrast, there was a statistically significant correlation between the number of visits to the patient per week and the Psychological and Environmental Health domains of the QOL, indicating decreased QOL with more visits. We also found a significant positive correlation between the number of visits per week and a sense of meaningfulness of the visits, feeling rewarded by the visits, and viewing caregiving as one’s primary role. However, we found no correlation between the number of visits and the level of burden or well-being (Table 4).

Table 4.

Correlations Between the Number of Visits per Week, Length of Hospitalization, and Level of Consciousness and Caregivers’ Burden, Well-Being, QOL, and Participation

Variable	No. of Visits/Wk	Length of Hospitalization	Level of Consciousness
Burden	−.006	−.01	.28 a
Well-being	−.31	−.28	−.09 a
QOL domain
Physical Health	−.24	−.09	.14 a
Psychological Health	−.39*	−.22	.10 a
Social Relations	−.10	−.11	−.26 a
Environmental Health	−.48*	.01	−.001 a
Participation in health-promoting activities	−.28	−.24	.36 a
Dimensions of experience and activity patterns b
Caring is meaningful to me	−.41*	.11	.14 a
Visit to conform to social norms	.01	−.46*	.36 a
Accessibility to hospital	−.33	.17	.29 a
Caring as physical activity	−.38	−.41*	.19 a
Visits are rewarding	−.47*	−.22	.37 a
Caregiving as primary role	−.60**	−.21	.37 a
Caregiving helps bring me closer to family and friends	–.32	−.20	.36 a
Including others in caring helps reduce burden	.05	.17	–.07 a
Uncertainty regarding the future is hard	–.25	−.17	.08 a

Note. N = 26. QOL = quality of life.

*p < .05. **p < .01.

Spearman correlation.

In the dimensions of experience and activity patterns, a positive correlation has a negative meaning, and vice versa.

Finally, no differences were found (p > .05) between the caregiver’s kinship with the patient and level of burden, well-being, and the four domains of QOL (ps = .51, .65, .89, .68, .7, and .16, respectively).

Discussion

The number of people who require prolonged mechanical ventilation is rising. Many family members find themselves involved in caregiving, some for a prolonged period. This is known to disrupt the caregivers’ routine and well-being. The present study sought to investigate the broad implications of being a caregiver of a family member requiring mechanical ventilation in terms of the caregivers’ participation, burden, well-being, and QOL, as conceptualized in the DLW framework (Gewurtz et al., 2016).

The findings showed that burden was only associated with the social domain of QOL where the higher the burden was, the lower the social QOL was. Similarly, burden was correlated with the social aspects and achievement of well-being. Although we found no studies on these subjects in caregivers of ventilated patients, these results align with previous research on caregivers of community-dwelling survivors of stroke (Caro et al., 2018) and on caregivers of older adults living in the community (Sung et al., 2022) that found an association between higher levels of burden and greater depressive symptoms and lower QOL in all domains. Additionally, a similar association between caregiver burden and decreased QOL has been observed in caregivers of people receiving hemodialysis living at home and of people with dementia living at home or in a nursing home (Jafari et al., 2018; Riedijk et al., 2006). Surprisingly, burden was not associated with any of the measures of participation or with the personal and social forces component of the DLW (Number of visits per week, Length of hospitalization, and Level of consciousness). This may have been due to the low levels of burden reported in the present study. Furthermore, there was no effect of the kinship status of the caregivers on their burden, well-being, or QOL. These findings differ from previous studies, which found that caregivers’ burden and stress were higher in spousal caregivers than in adult children of community-dwelling care recipients (AARP Public Policy Institute & National Alliance for Caregiving, 2015; Pinquart & Sörensen, 2003). This discrepancy may be explained by the small number of participants corresponding to each kinship group in this study or by the different settings in which caregiving occurred, community versus long-term care facility.

There was also an association between participation in health-promoting activities and better QOL and well-being. These finding are in line with previous studies which have found that participation in health-promoting activities has a moderating effect on burden that can improve caregivers’ well-being (Noguchi et al., 2020), and was shown to be associated with better QOL of women with multiple sclerosis (Tyszka & Farber, 2010). Frequent visits to the patient and the perception of caregiving as the primary role were both associated with lower levels of QOL (Psychological and Environmental Health domains), yet well-being was only associated with perception of caregiving as the primary role. This may be because most of the caregivers’ time is devoted to the person requiring mechanical ventilation, which was also found by Noguchi et al. (2020) in their study of caregivers of community-dwelling older adults. The finding of an association between burden and reduced QOL in the present study is consistent with the AOTA’s (2020) statement on the importance of addressing caregivers’ QOL.

According to the DLW model, caregivers’ and patients’ characteristics (e.g., personal and social forces) are likely to affect opportunities for participation and, as a result, affect QOL and well-being (Gewurtz et al., 2016). However, in the present study, no associations were found between caregivers’ QOL and patients’ level of consciousness or length of hospitalization.

An extensive literature review did not reveal studies that examined the associations between patients' level of consciousness and caregivers’ QOL in long-term acute care facilities. Overall, the findings of this study thus constitute the first step toward narrowing the gap in understanding this important issue. Clearly, further studies are warranted.

Limitation and Future Studies

The results here should be interpreted with caution, given the small sample that was recruited from a single setting. Further longitudinal multiple-center studies with larger samples are recommended to better characterize this unique caregiver population. Given the restricted sample size in this study, it was not possible to include all variables within the scope of the DLW framework that might be associated with caregivers’ burden, well-being and QOL. Furthermore, in the present study, we did not include the degree of involvement of the staff in the long-term care facility as a potential mediator of the caregivers’ burden. Future studies should include a larger sample size to analyze and consider the aforementioned variables, as well as other personal and social forces. In addition, although self-report questionnaires are useful in gathering data in a uniform manner, they are limited in the depth of the data they provide. Future mixed-method studies should be conducted to provide more in-depth insights into the caregivers’ perspectives on participation, well-being, and QOL.

Implications for Occupational Therapy Practice

Participation in health-promoting activities was associated with better caregivers’ QOL and well-being. These findings are noteworthy because these topics are within the scope of occupational therapy practice. The results of this study have the following implications for occupational therapy education:

▪ Interventions for caregivers should focus not only on their participation in general but also specifically on their health-promoting activities.

▪ Health-promoting programs and support systems for caregivers of family members who require prolonged mechanical ventilation need to be developed.

Conclusion

The findings point to an association between the burden of caregivers of family members requiring mechanical ventilation, low well-being, and lower level of social relations (a domain of QOL). Frequent participation in health-promoting activities was associated with better well-being and QOL. These findings underscore the importance of participation in health-promoting activities. Enhancing participation in these activities is within the scope of occupational therapy. Moreover, occupational therapists use a family-centered approach, and the results of this study highlight the need to encourage caregivers to engage in health-promoting activities.

Supplemental Material

Supplemental Information

Supplementary material for Quality of Life and Well-Being of Family Caregivers of Prolonged Mechanically Ventilated Patients: An Observational Study

Supplementary material, sj-pdf-1-aot-10.5014_ajot.2025.051062.pdf for Quality of Life and Well-Being of Family Caregivers of Prolonged Mechanically Ventilated Patients: An Observational Study by Miriam Picard, Esther-Lee Marcus, Naomi Weintraub and Danit Langer in The American Journal of Occupational Therapy

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