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Size and characteristics of family caregiving for people with serious illness: A population-based survey

Published online by Cambridge University Press:  09 August 2022

Vincent Van Goethem*
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Public Health and Primary Care, Ghent University, Ghent, Belgium Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
Sigrid Dierickx
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Public Health and Primary Care, Ghent University, Ghent, Belgium Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
Luc Deliens
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Public Health and Primary Care, Ghent University, Ghent, Belgium Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
Aline De Vleminck
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
Lore Lapeire
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium
Joachim Cohen
Affiliation:
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent, Belgium Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
*
Author for correspondence: Vincent Van Goethem, End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Corneel Heymanslaan 10, Ghent 9000, Belgium. E-mail: vincent.vangoethem@ugent.be
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Abstract

Objectives

Family caregivers play a vital role in care for people with serious illness. Reliable population-level information on family caregiving is scarce. We describe the socio-demographic and family caregiving characteristics and experiences of family caregivers of people with serious illness in the adult population.

Method

We performed a secondary analysis of the cross-sectional population-based 19th Social-Cultural Changes survey. A random sample of 2,581 Dutch-speaking people aged 18–95, living in Flanders or Brussels, were contacted for participation in the survey between March and July 2014 using a stratified two-step sample. Differences between groups are described using Pearson chi-square tests and analysis of variance.

Results

Response rate was 58.7% (1,515/2,581). Over a 12-month period, 7.6% of respondents provided family care for someone with a serious illness (n = 114). They were most often aged 55–74 (36.0%), women (57.9%), worked full-time (42.3%); 31.8% provided at least 10 h of family care each week. Family caregivers of people with serious illness, compared with family caregivers of people with other conditions, provided more medical and nursing care (33.3% vs. 22.5%, p = 0.027), and experienced a higher burden of family caregiving (p = 0.038) but a similarly high meaningfulness of family caregiving.

Significance of results

A considerable part of the adult working population provides family care for someone with serious illness. While family caregiving for someone with serious illness shows similarities with family caregiving for people with other conditions in terms of caregiver characteristics and the impact of caregiving on work-life balance and the meaning derived from it, it is also associated with increased burden.

Type
Original Article
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution and reproduction, provided the original article is properly cited.
Copyright
Copyright © The Author(s), 2022. Published by Cambridge University Press

Introduction

Slightly more than one in five adults (21.3%) provides family care in the US (Kent and Dionne-Odom, Reference Kent and Dionne-Odom2019; Prudencio and Young, Reference Prudencio and Young2020). Nevertheless, population-based studies describing the size and characteristics of family caregiving are scarce and are mainly conducted in the USA (Kent et al., Reference Kent, Rowland and Northouse2016). Moreover, previous research has mainly focused on family caregivers’ needs and roles and the economic value of family caregiving (Applebaum and Breitbart, Reference Applebaum and Breitbart2013; Ferrell and Wittenberg, Reference Ferrell and Wittenberg2017; Rabarison et al., Reference Rabarison, Bouldin and Bish2018).

Family caregivers are relatives, partners, friends, or neighbors who provide support in a non-contractual relationship that develops naturally and does not have formally agreed work hours, breaks, or holidays (Irlam and Bruce, Reference Irlam and Bruce2002; Masuy, Reference Masuy2011; Grieve, Reference Grieve2016). Family care plays a pivotal role in care provision for people with serious illness with family caregivers providing practical help, personal care, and psychological support (Ornstein et al., Reference Ornstein, Kelley and Bollens-Lund2017; Cengiz et al., Reference Cengiz, Turan and Olmaz2021), which often makes family caregivers the main care providers (Emanuel et al., Reference Emanuel, Fairclough and Slutsman1999; Lim et al., Reference Lim, Tan and Chua2017). Through research four distinct family caregiver roles have been identified namely; as stated earlier, the role of the family caregiver as a care provider, (Harding, Reference Harding2013; Nielsen et al., Reference Nielsen, Neergaard and Jensen2016; Li and Song, Reference Li, Song, Gu and Dupre2019), the family caregiver as a facilitator of care (Miller et al., Reference Miller, Mishra and Kendall2016), the family caregiver as an expert on the patient's care (Emanuel et al., Reference Emanuel, Fairclough and Slutsman1999; Colla and Bea, Reference Colla and Bea2013), and the family caregiver as care recipient (Wang et al., Reference Wang, Molassiotis and Chung2018).

Care provided by family caregivers for people with serious illness can be described as informal palliative care due to its conformity to the definition of palliative care set forward by the World Health Organization (WHO) where palliative care “improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening illness, whether physical, psychological, social or spiritual.” Furthermore, palliative care is not only for those imminently dying but also for those with a chronic condition, is embedded in the community and home-based care and supports care providers such as family and community volunteers (World Health Organization, 2019).

Different experiences between caregivers can be explained by the Model of Carer stress and Burden which posits that caregiver burden differs based on background and contextual factors, primary and secondary stressors, and exacerbating and mitigating factors. As patient characteristics and the tasks related to patient care are considered primary stressors, the unmet needs of family caregivers are likely to differ between family caregivers for people with serious illness and other types of family caregivers (Sörensen et al., Reference Sörensen, Duberstein and Gill2006; Secinti et al., Reference Secinti, Lewson and Wu2021). Disease progression and symptoms the patient experiences can also impact caregiver well-being due to a change in intensity of care tasks and possible behavioral changes in the patient such as irritability, depression, and anxiety (Keir et al., Reference Keir, Guill and Carter2006; Chen et al., Reference Chen, Lai and Liao2014). On the other hand, providing family care for people with serious illness can also have benefits for both the patient and the family caregiver, such as a stronger relationship and a sense of satisfaction, accomplishment, and personal growth (Kang et al., Reference Kang, Shin and Choi2013; Li and Loke, Reference Li and Loke2013; Henriksson et al., Reference Henriksson, Carlander and Årestedt2015).

Describing the proportion, characteristics, and differences between non-, other family caregivers, and family caregivers for people with serious illness within the entire population can guide legislators on what direction to take to adequately support family caregivers that provide informal palliative care. Population-based representative findings allow policy makers to make decisions based on scientifically proven and divergent data (Cerdá, Reference Cerdá2018). As such, this information is of vital importance to policy and practice. This study, therefore, aims to describe the numbers, characteristics, and experiences of family caregivers of people with serious illness using population-based data. We address the following research questions:

  1. 1) What proportion of the adult population, within a time period of 12 months, provide family care for a person with serious illness?

  2. 2) What are the socio-demographic characteristics of family caregivers of people with serious illness, compared with family caregivers of people with other conditions or disabilities and people not providing family care?

  3. 3) What are family caregiving characteristics of family caregivers of people with serious illness, compared with family caregivers of people with other conditions or disabilities?

  4. 4) How do family caregivers of people with serious illness experience being a caregiver compared with family caregivers of people with other conditions or disabilities?

Methods

Study design, setting, and participants

We performed a secondary analysis of data from the 19th Social-Cultural Changes survey (SCC) in Flanders conducted from March to July 2014 by the Study Service of the Flemish Government (Carton et al., Reference Carton, Tina and Pickery2015). The Social-Cultural Changes survey is a face-to-face computer-assisted cross-sectional survey that is repeated every year in a random sample of the Dutch-speaking adult population in Flanders and Brussels-Capital Region, Belgium to assess changes in beliefs and values. As such, the Social-Cultural changes survey is an important instrument to measure the social-cultural environment in Flanders (Carton, Reference Carton2021). The SCC survey contains a set of fixed topics which are repeated in each edition and varying topics that are not included in each edition. The 2014 Social-Cultural Changes survey was the most recent edition to contain an extensive module on family caregiving and was therefore chosen for analyses.

A random sample of 2,581 Dutch-speaking people between the ages of 18 and 95 living in Flanders (the northern Dutch-speaking part of Belgium) or Brussels (the Capital Region of Belgium) was selected from the national population register. People living in collective households such as hotels, hostels, hospitals, and nursing homes were excluded. The participants were selected using a stratified two-step sample. Clusters of postal sectors were the primary sampling unit. The number of clusters in each province was proportional to the total population size. For the second step, random clusters within postal sectors were formed depending on the population size of the postal sector. Participants were randomly recruited from these random clusters and contacted for participation by the Study Service of the Flemish Government (Carton et al., Reference Carton, Tina and Pickery2015, Reference Carton2021).

Questionnaire and measures

The questionnaire, originally developed in 1996, is revised annually by the Study Service of the Flemish Government and a scientific guidance committee consisting of survey-methodologists from several Flemish universities.

Socio-demographic measurements include age, gender, education, household composition, marital status, employment situation, and perception of net monthly income. The characteristics of family caregiving include relationship to the care provider, sex, age, living situation and proximity of the care recipient, and frequency, intensity, duration, and content of caregiving. Family caregiving experiences were measured using questions on the perceived physical or psychological impact of providing care, the impact of providing care on time for family or themselves and satisfaction with and meaningfulness of providing care, using a 5-point Likert scale (1 = completely disagree to 5 = completely agree). The extent to which participants experienced family caregiving as burdensome and felt appreciated for providing care was measured on a scale from 0 (not at all burdensome/not at all appreciated) to 10 (very burdensome/very appreciated). The extent to which family caregiving hindered the respondent's job demands or vice-versa was measured on a scale ranging from 1 (never) to 4 (always).

Statistical analysis

Weighing of the data was done by the Study Service of the Flemish Government. They utilized a complex three-step procedure, generating a design weight, non-response weight and performing post-stratification. In the first step (design weight), the sample is corrected for the oversampling factor. For the non-response weight, a logistic regression is performed to estimate the response based on living situation, gender, marital status, age, and nationality. In the third step, the Study Service of the Flemish Government conformed the sample to variables within the sample, namely province, gender, age, and nationality to make it representative for the adult population of Dutch-speaking people in Flanders and Brussels. We divided participants into three groups: (1) family caregivers of people with serious illness, (2) family caregivers of people with other conditions or disabilities, and (3) people not providing family care. We identified family caregivers using the question “Are you currently, or have you been during the past 12 months, supporting a sick, disabled or elderly family member, acquaintance or neighbor?” This question was framed to inquire about informal care provided, i.e., care not provided as part of a professional occupation or volunteering. People who answered “yes, I currently provide support” or “yes, I have provided support during the last 12 months but not currently” were identified as family caregivers. Those who indicated they provide/have provided support to someone with chronic and/or terminal illness were classified as “family caregivers of people with serious illness.” Those who indicated they provide/have provided support to someone with physical disability, mental disability, early stage dementia/cognitive decline, psychological difficulties, general decline due to old age, or acute illness/accidents were classified as “family caregivers of people with other conditions.” Participants who answered “no” were identified as people not providing family care. All data were analyzed using SPSS 27.0 (IBM).

We used descriptive statistics to report socio-demographic characteristics of family caregivers of people with serious illness, family caregivers of people with other conditions and people not providing family care. We conducted Pearson chi-square tests to compare (1) socio-demographic characteristics between family caregivers of people with serious illness vs. family caregivers of people with other conditions and people not providing family care and (2) family caregiving characteristics of people with serious illness vs. family caregivers of people with other conditions. We tested differences in experiences of family caregiving between those caring for people with serious illness and others using Mann–Whitney U tests. To reveal underlying structures of family caregiving experiences we performed a principal component analysis (PCA) with varimax rotation on all items concerning family caregiving experiences. Items loading higher than 0.70 on a component were retained in that component. Internal consistency of the items within the underlying constructs was checked using Cronbach's α (Table 1). To identify differences between the two family caregiver groups on the constructs revealed through the PCA, a preliminary one-way analysis of variance (ANOVA) was conducted with the family caregiver group as a independent variable and the constructs identified through PCA as dependant variables. Means, mean difference, F-value, and p-value are reported. Constructs that were significantly associated with the family caregiver group (p < 0.05) were included in multivariable ANOVA. We included the variables for which we found a statistically significant difference (p < 0.05) between family caregiver groups as confounders. Mean, 95% confidence interval and p-value were reported on interaction effects between the family caregiver group and other independent variables.

Table 1. Principal component analysis: component loadings

a This item scored low on all components which is why we made the executive decision to remove it from the model.

Ethical considerations

Participants were informed of the goal and content of the survey. Participants were free to refuse participation without any negative effects and were free to withdraw from the study at any time. Data used for this study were made available by the study service of the Flemish government. No further personal data were sought or collected, therefore ethical approval was not required.

Results

Of the 2,581 participants who were contacted in Flanders or Brussels-Capital region, Belgium, a total of 1,515 completed the questionnaire resulting in a response rate of 58.7%. The most frequent reason for non-response was refusal to take part in the survey (Figure 1).

Fig. 1. Flowchart of participation Social-Cultural Changes survey.

Proportion that provides family care

Within a 12-month period, 114 (7.6%) of the respondents provided family care to someone with serious illness, 272 (18.1%) provided family care to a person with another condition, and 1,117 (74.3%) did not provide family care.

Socio-demographic characteristics of respondents

More than one third of family caregivers were aged 35–54 or 55–74 (family caregivers of people with serious illness: 34.2% and 36.0%; family caregivers of people with other conditions: 34.9% and 36.4%) (Table 2). Family caregivers of people with serious illness were more often women (57.9%) compared with people who did not provide family care (47.8%, p = 0.040). About half of all participants attained secondary education (Family caregivers of people with serious illness: 46.5%, family caregivers of people with other conditions: 50.9%, and people not providing family care: 50.7%). More than one out of three family caregivers were full-time employed or self-employed (family caregivers of people with serious illness: 42.3%; family caregivers of people with other conditions: 35.4%) and 62.9% were married or legally cohabiting. A minority of participants reported that it was (very) hard to make ends meet with the current income (family caregivers of people with serious illness: 21.9%; family caregivers of people with other conditions: 12.9%, and people not providing family care: 17.2%).

Table 2. Characteristics of family caregivers of people with serious illness, family caregivers of people with other conditions, and people not providing family care

Information on family caregiving status was missing for n = 26 cases (1.7%).

Missing values family caregivers of people with serious illness: Educational attainment N = 1 (0.9%) and job situation N = 4 (3.5%).

Missing values family caregiver of people with other conditions: Job situation N = 3 (1.1%).

Missing values of people not providing family care: Job situation N = 3 (0.3%), perception of net monthly family income N = 14 (1.3%), marital status N = 1 (0.1%).

a Pearson Chi-square test testing for differences in socio-demographic characteristics between family caregivers of people with serious illness and family caregivers of people with other conditions or disabilities.

b Pearson Chi-square test testing for differences in socio-demographic characteristics between family caregivers of people with serious illness and people not providing family care.

Family caregiving characteristics

Nearly half (47.8%) of the family caregivers of people with serious illness provided care to parents or parent in-law (Table 3). Compared with care recipients with other illness, those with serious illness were more often men (29.5% and 46.5%, resp., p = 0.001), aged 35–54 (6.6% and 13.0%, resp., p < 0.001) or aged 55–74 (19.2% and 36.5%, resp., p < 0.001) and more often lived with relatives other than the participating family caregiver (28.7% and 48.2%, resp., p < 0.001). Proximity to the care recipient was for about half of the participants between 1 and 15 min travelling time for both family caregivers of people with serious illness (50.0%) and family caregivers of people with other conditions (56.2%). Nearly one in three (32.5%) family caregivers of people with serious illness provided care on a daily basis and 44.7% provided family care one or more times a week; 31.8% provided care for more than 10 h a week and most provided family care for over 2 years (63.2%). Family caregivers of people with serious illness provided emotional support (92.1%), assistance in household chores (69.3%), transportation and guidance (64.0%), supervision (56.1%), assistance with administration (46.5%), and personal care (24.3%). Compared with family caregivers of people with other conditions, family caregivers of people with serious illness more often provided medical and nursing care (33.3% and 22.5%, resp., p = 0.027).

Table 3. Family caregiving characteristics of family caregivers of people with serious illness compared to family caregivers of people with other conditions

Information on family caregiving status was missing for n = 16 cases (4.1%).

Missing values family caregivers of people with serious illness: Intensity of family caregiving N = 1 (0.9%).

Missing values family caregiver of people with other conditions: Sex of the care recipient N = 1(0.4%), proximity of the care recipient N = 5 (1.83%), intensity of family caregiving N = 9 (3.3%).

a Pearson X 2 test for differences in family caregiving characteristics between family caregivers of people with serious illness and family caregivers of people with other conditions.

b Percentages do not add to 100% because multiple answers were possible.

Family caregiver's experience of being a family caregiver

Among family caregivers of people with serious illness, 22.8% reported that the care they provided is physically demanding and 45.6% reported that it was psychologically demanding (Table 4). A minority of respondents felt that they did not have time for themselves (13.9%) or their family (9.0%) due to the care they provided, though providing family care did not interfere with their professional occupation (94.2%) or vice versa (87.1%). Compared with family caregivers of people with other conditions, they more often reported that providing care is psychologically demanding (45.6% and 28.7%, resp., p = 0.001) and meaningful (97.4% and 93.7%, resp., p = 0.019).

Table 4. Family caregivers’ experiences of being a family caregiver

Missing values for family caregivers of people with serious illness: I have insufficient time for my family due to the care I provide N = 3 (2.6%), job demands hinder(ed) my family caregiving tasks N = 44 (38.6%), Family caregiving tasks hinder(ed) my job demands N = 55 (39.5%).

Missing values family caregivers of people with other conditions: I have insufficient time for my family due to the care I provide N = 5 (1.8%), How appreciated by society do you feel for providing family care N = 3 (1.1%), job demands hinder(ed) my family caregiving tasks N = 119 (43.8%), Family caregiving tasks hinder(ed) my job demands N = 119 (43.8%).

a Mann–Whitney U test for family caregiver's experiences between family caregivers of people with serious illness and family caregivers of people with other conditions.

The PCA performed to identify underlying constructs in family caregiver experiences resulted in three components, i.e., burden of family caregiving (Crohnbach's α = 0.771), meaningfulness of family caregiving (Crohnbach's α = 0.861), and work-family conflict (Crohnbach's α = 0.822).

Family caregivers of people with serious illness experienced higher burden than family caregivers of people with other conditions (mean difference −0.226, p = 0.038) but did not differ in experienced meaningfulness (mean difference 0.159, p = 0.138) and work-life conflict (mean difference = 0.074, p = 0.503) (Table 5). Family caregivers of people with serious illness experienced increased burden independently of whether they provided medical and nursing care (mean = 0.261 and 0.116, resp., 95% CI = −0.211, 0.733 and −0.283, 0.516, resp.). Family caregivers of people with other conditions experienced higher burden when providing medical and nursing care (mean 0.400, 95% CI 0.008, 0.793) and lower burden if not providing medical and nursing care (mean = −0.290, 95% CI = −0.620, 0.039; p = 0.026; Table 6).

Table 5. Association between family caregiver type and experienced burden, experienced meaningfulness of family caregiving, and work-life conflict

Missing values N = 12 (3.1%).

a Univariate analysis of variance test.

Table 6. Association between family caregiver type and experienced burden controlled for family caregiving characteristics

Missing values N = 12 (3.1%).

a Two-way Analysis of Variance with interaction effect between type of family caregiver and parameters.

b Interaction effects reported between type of family caregiver and another parameter.

c This level of combination of factors is not observed.

Discussion

Main findings

This population-based survey indicates that, within a period of 12 months, 7.6% of the respondents in Flanders or Brussels-Capital region, Belgium provided family care for someone with a serious illness. Almost half of these family caregivers are a child of the ill person and work full-time, and a third provide 10 h or more of family care each week. Compared with family caregivers of people with other conditions, family caregivers of people with serious illness seemed to incur similar experiences in terms of work-life balance and the meaning derived from care but experienced a higher burden. In terms of caregiving tasks, family caregivers of people with serious illness more often take on medical and nursing care than family caregivers of people with other conditions.

Strengths and limitations

A particular strength of this study is that it uses a representative sample of the adult population in Flanders, Belgium. The sample size of 2,581 participants, randomly sampled from a full population database, allows generalizability of the findings about family caregiving in serious illness to the entire adult population and, hence, provides a clear profile of family caregiving. Response rate to the survey is satisfactory and several measures have been implemented to enhance data quality, including the use of computer-assisted personal interviewing (CAPI) by trained interviewers, regular quality checks of interviews, and control for interviewer-variance (Carton et al., Reference Carton, Tina and Pickery2015).

A main drawback of this study is that the analysis was performed on data gathered in 2014, which was the latest available data on these topics gathered in the SCC. Nevertheless, considering the current increase in serious illness as well as an expected increase in the coming decades (Gaudette et al., Reference Gaudette, Tysinger and Cassil2015; Bell et al., Reference Bell, Whitney and Young2019), we believe that our estimation of the population-size of family caregivers for people with serious illness might be an underestimation, making our findings and the implications still relevant and applicable to the population. Furthermore, after the data-collection and -analysis, the global COVID-19 pandemic has had an impact on how family care has been operationalized as well as family caregiver experiences. Both patients with serious illness and family caregivers of people with serious illness experienced negative consequences such as increased strain, uncertainty, loneliness, and intensified distress due to the pandemic and related necessary mitigating measures (Kent et al., Reference Kent, Ornstein and Dionne-Odom2020). More research about the impact of the COVID-19 pandemic on the proportion and the experiences of family caregivers is therefore needed. Limitations include: only participants from private households are included, which means that participants in e.g., nursing homes are not included which could have impacted the findings about characteristics of caregivers and/or the caregiving situation. Additionally, selection bias due to non-response cannot be ruled out. However, non-response has been analyzed taking into account socio-demographic variables such as living area, age, and gender. There is also a possible social-desirability bias in the responses due to the expectations that you should look after your partner or parent. Finally, because family caregiving was not the primary focus of the SCV survey, ascertainment bias for the caregiving outcomes may be limited.

Interpretation and implications of the findings

According to our study, 7.6% of the adult population in Flanders and Brussels provides family care for someone with serious illness every year, which corresponds to about 494,000 people of the 6,500,000 adult inhabitants. While our operationalization of caregiving in serious illness was not limited to the imminently dying, we could broadly describe it as informal palliative care. This is in line with e.g., the World Health Organization's definition of palliative care (2019) where palliative care is not limited to terminal or end-of-life care, but is considered an approach which improves the quality of life of patients with serious, life-limiting illness and their families, irrespective of disease prognosis. Research shows that, depending on the estimation methods, 38% to 74% of decedents had a need for palliative care prior to their death (Morin et al., Reference Morin, Aubry and Frova2017). For Flanders, this means that annually approximately 22,800 to 44,400 of the 60,000 dying people require palliative care. However, palliative care also intends to provide support to family caregivers (World Health Organization, 2019). Our study, therefore, indicates that a substantially larger population than just the estimated number of patients can benefit from some kind of palliative care support and that family caregivers may well be one of the most overlooked groups in medical care in general. Family caregivers are both care providers and care receivers and could benefit from comprehensive assessment as a base for a pro-active support plan. Furthermore, education of family caregivers such as skill training aimed at increasing medical skills and mental resilience, which reduces hopelessness and increases self-efficacy and social recognition, could empower them (Barbabella et al., Reference Barbabella, Poli and Andréasson2016; Berry et al., Reference Berry, Dalwadi and Jacobson2017). Our findings highlight the need for policy makers to increase allocation of funds toward support for family caregivers, especially taking into consideration that people with serious illness spend most of their time outside professional healthcare settings, within their communities and with their family caregivers (Kellehear, Reference Kellehear2013).

Our findings show that providing palliative family care results in a higher experienced burden, and particularly a higher psychological burden, than providing family care for patients with other conditions. This is in line with other research showing that family caregivers are likely to experience a higher perceived burden due to the duration of, and tasks related to providing, palliative care (Lee et al., Reference Lee, Shin and Cho2015; Choi and Seo, Reference Choi and Seo2019). The burden they experience can be partly explained by the presence of physical symptoms and complaints such as sleep deprivation and pain (Harding et al., Reference Harding, Higginson and Donaldson2003; Ishii et al., Reference Ishii, Miyashita and Sato2012). Family caregivers might develop a passive attitude toward self-care because caring for the patient is their main focus, and may choose to minimize or ignore their own symptoms and complaints (Adelman et al., Reference Adelman, Tmanova and Delgado2014). Our study shows that providing palliative family care is psychologically demanding. Additionally, research indicates that up to 40% of family caregivers experience depressive symptoms (Costa-Requena et al., Reference Costa-Requena, Val and Cristòfol2015). Psychological burden might be related to a decrease in leisure time even though family caregivers did not report having too little time for themselves in one particular study (Yoo et al., Reference Yoo, Lee and Chang2008). Nevertheless, we have to take into consideration that family caregivers might underreport on the actual time available for themselves or their families and the psychological burden that a lack of personal time might cause (Adelman et al., Reference Adelman, Tmanova and Delgado2014). On the other hand, we found that family caregivers also generally find providing family caregiving to be meaningful. Family caregivers can enhance the relationship with the care recipient, effectively creating meaning in the palliative care situation (Traa et al., Reference Traa, De Vries and Bodenmann2015).

Family care will become increasingly important due to continuous strain on the accessibility and workability of formal care because of current demographic and socio-economic developments. The proportion of the world's population aged 65 and older is expected to increase from 5% in 2015 to 16% in 2050 which implies an increase in people with chronic illness or comorbidities including heart disease, stroke, and cancer (Leeson, Reference Leeson2018; Li et al., Reference Li, Han and Zhang2019). The need for, and numbers of, family caregivers is therefore likely to grow. Yet our findings indicate that more than half of family caregivers of people with serious illness combine family caregiving with a full- or part-time job, putting them under increasing strain. Future research could study the constructs put in place to support family caregivers of people with serious illness or family caregivers in general and how often these constructs are used, whether or not they are sufficient and if they decrease experienced burden or strain.

Some of the aspects the current study was not able to look at and which may be specifically relevant in the “palliative family caregiving” group relate to how much family caregivers feel competent, confident, and supported in performing the caregiver tasks. Research indicates that communication between the healthcare team and the family caregiver is not only the basis of but essential to increasing feelings of competence and confidence in the family caregiver. Therefore, a participatory approach where the family caregiver is recognized as a part of the team is recommended (Vermorgen et al., Reference Vermorgen, Vandenbogaerde and Van Audenhove2021).

In conclusion, we found that family caregivers who provide palliative family care spend a lot of time providing this care and can experience burden yet find family care to be meaningful. Our findings suggest the importance of tools and programs not only aimed at supporting patient well-being but also family caregiver wellbeing and self-efficacy in the context of serious illness. Additionally, supporting family caregivers in general and family caregivers of people with serious illness specifically should receive a higher priority in public health policies and allocation of health budget.

Acknowledgments

The authors wish to thank the Flanders Statistics Authority (Vlaamse Statistische Autoriteit) to make the Social-Cultural Changes in Flanders 2014 survey (Survey naar sociaal-culturele verschuivingen in Vlaanderen, 2014) available. Jane Ruthven provided language editing for this article.

Funding

The Social-Cultural Changes in Flanders survey is funded by the Flemish government. Data analysis and writing of the manuscript are supported by a grant from the Research Foundation – Flanders (FWO-SBO grant no. S002219N) for the CAPACITY project (Flanders Project to Develop Capacity in Palliative Care Across Society), a collaboration between Vrije Universiteit Brussel (VUB), Ghent University, and University of Leuven. Sigrid Dierickx is a postdoctoral fellow of the Research Foundation – Flanders.

Conflicts of interest

There are no conflicts of interest.

References

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Figure 0

Table 1. Principal component analysis: component loadings

Figure 1

Fig. 1. Flowchart of participation Social-Cultural Changes survey.

Figure 2

Table 2. Characteristics of family caregivers of people with serious illness, family caregivers of people with other conditions, and people not providing family care

Figure 3

Table 3. Family caregiving characteristics of family caregivers of people with serious illness compared to family caregivers of people with other conditions

Figure 4

Table 4. Family caregivers’ experiences of being a family caregiver

Figure 5

Table 5. Association between family caregiver type and experienced burden, experienced meaningfulness of family caregiving, and work-life conflict

Figure 6

Table 6. Association between family caregiver type and experienced burden controlled for family caregiving characteristics