An intervention that reduces stress in people who combine work with informal care: randomized controlled trial results
The European Journal of Public Health
An intervention that reduces stress in people who combine work with informal care: randomized controlled trial results
Edwin J. Boezeman 0 1
Karen Nieuwenhuijsen 0 1
Judith K. Sluiter 0 1
0 Coronel Institute of Occupational Health, Amsterdam Public Health Research Institute, Academic Medical Center, University of Amsterdam , Amsterdam , The Netherlands
1 Institute, Academic Medical Center, University of Amsterdam , Meibergdreef 15, 1105 AZ Amsterdam , The Netherlands, Tel:
Background: The aim of the research was to examine whether a role-focused self-help course intervention would decrease caregiver stress and distress, and functioning problems, among people who suffer stress because they combine paid work with informal care. Methods: A pre-registered (NTR 5528) randomized controlled design was applied (intervention vs. wait list control). Participants (n = 128) were people who had paid work and were suffering stress due to their involvement in informal care activities. Participants allocated to the intervention group (n = 65) received the role-focused self-help course. Control group members (n = 63) received this intervention after all measurements. Prior to the random allocation (pre-test), and 1 month (post-test 1) and 2 months (post-test 2) after allocation, all participants completed a questionnaire that measured their caregiver stress (primary outcome), distress, work functioning, negative care-to-work interference and negative care-to-social and personal life interference. Mixed model ANOVAs were used to test the effectiveness of the intervention. Results: Two months after allocation, the intervention group participants had lower levels of caregiver stress and distress compared with the control group participants. The intervention did not directly resolve impaired work functioning or interference of care with work and social/personal life. Conclusion: The intervention decreases caregiver stress and distress in people who suffer stress because they combine paid work with informal caring. The intervention (Dutch version) can be downloaded at no cost from www.amc.nl/mantelzorgstress. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
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nformal care takes place in the private sphere, it involves the
Iunpaid provision of care and assistance to a significant other
person (e.g. parent, spouse and child) who suffers from a chronic
health problem.1 Informal caregivers are ordinary individuals who at
one time adopted the role of caregiver out of compassion and/or a
sense of duty. Due to a lack of formal training or relevant work
experience, most informal caregivers initially were, and many still
are, largely unfamiliar or uncomfortable with providing care. The
provision of informal care represents a role and a responsibility that
are in addition to other roles and responsibilities (e.g. work role,
family commitments). Of the people who combine paid work with
informal care, there are those who need care and support because
they suffer stress and functioning problems due to their involvement
in informal care. It is expected that more employed people will
become involved in informal care in the near future, due to for
instance the aging population,1?4 and that the number of
employed people experiencing stress and functioning problems
due to involvement in informal care will increase. Interventions5?8
have been developed to help individuals fulfil the caregiver role and
to counteract associated negative consequences for personal
wellbeing and functioning. However, the current interventions are not
easily accessible nor fully relevant to those who combine paid work
with informal care. Notably, they do not focus on effectively
combining the work role with the role of informal caregiver, do
not take into account paid work as a resource or a burden and do
not address strategies relevant to uphold functioning at work.
According to role theory,9?11 a lack of understanding of how to
perform a task (i.e. role ambiguity) and conflicting task demands
(i.e. role conflict) represent a source of stress for employees, and
hence hinder task performance. Research corroborates that role
ambiguity and role conflict represent stressors to people who
perform paid work.12 Qualitative studies13?17 conducted among
those who combine paid work with informal caregiving have
identified a range of problems related to (i) a lack of understanding
of how to fulfil the role of informal caregiver (i.e. role ambiguity)
and (ii) interference of the role of informal caregiver with the role of
worker and/or family member (i.e. role conflict). Strategies offering
role clarity and ways to minimize role conflicts may thus help to
reduce stress in, and support the functioning of, these people.
Selfmanagement psycho-education materials and/or computer-based
learning modules may prove an effective method for the delivery
of such interventions.18,19
A role-focused self-help intervention may help those who combine
paid work with informal care (i) understand and shape the informal
caregiver role and (ii) combine the work role with the role of
informal caregiver. The aim of this research was to examine
whether such an intervention would decrease the caregiver stress,
and the distress and functioning problems, of individuals who
combine paid work with informal care.
The research was conducted in accordance with the Declaration of
Helsinki.20 The Medical Ethics Committee of the Academic Medical
Center judged (reference number: W15_220#15.0260) that a
comprehensive evaluation was not required since this study was not
subject to the Medical Research Involving Human Subjects Act.
allocations were done by researcher K.N. Control group members
received the self-help course after all measurements.
A randomized controlled parallel group design was developed,
documented (Dutch Trial Register: NTR 5528) and used
(intervention vs. wait list control).
The participants were people who suffered stress because they
combine paid work with informal caregiving. The research was
conducted in the Netherlands in the private sphere of the
participants. Paid workers involved in informal care were informed about
the self-help course plus the research and invited to participate. The
participants were recruited via community organizations across the
Netherlands that offer support to informal caregivers. These
organizations spread the recruitment message digitally (e.g. via email,
digital newsletters, social media, etc.) among the informal
caregivers in their respective regions. The recruitment message was
also spread via message boards in hospitals, and via patient
organizations and labour unions. The recruitment message contained the
contact details of researcher E.J.B., individuals interested in
participation applied for participation by contacting this researcher
directly. In response, between December 2015 and August 2016,
people who suffered stress due to combining paid work with
informal caregiving self-applied for participation. General
questions were used by researcher E.J.B. to verify whether the
individuals who had applied for participation met the inclusion criteria.
The inclusion criteria were (i) at least 23 years of age, (ii) informal
caregiver for at least 2 h a week, (iii) involved in paid work for at
least 12 h a week and (iv) self-reported stress complaints due to the
involvement in informal care. Individuals who met the inclusion
criteria were included in the research by researcher E.J.B.
The intervention was a role-focused self-help course (i.e. E-book
plus a non-obligatory internet support module) developed for
people who combine paid work with informal care. It contained
exercises, texts and practical suggestions. Its introduction text
encouraged users to complete the self-help course at their own
convenience, and made it clear that users (i) could choose the order in
which they would complete its elements and (ii) could opt to
complete only those elements that they found most relevant to
their specific care plus work situation. From a role theory
perspective, the selected materials are suitable for helping people who have
paid work (i) to understand and shape the informal caregiver role
and (ii) to combine the role of informal caregiver with other roles
(i.e. the work role, social roles). The materials were adapted because
in their original format they were of less practical relevance to those
who have paid work and are involved in informal care (e.g. texts
were made relevant to the context of the participants, texts were
shortened but key elements were retained, exercises were made
applicable for use without the help of a therapist or social worker,
etc.). The materials were adapted from (i) The ?learning to be a
family caregiver? intervention programme,21 (ii) a
stressmanagement programme,22 (iii) The ADAPT method,7,23 (iv) the
role clarity intervention24 and (v) an inventory of general
strategies (e.g. stress management, problem solving, etc.) helpful
Researcher E.J.B. who included the participants was not involved in
their allocation. The allocation list, generated using Arifin?s26
randomization procedure, was kept concealed from E.J.B. All random
Researcher E.J.B. responsible for data-analysis was told by researcher
K.N. that the dataset contained either correct or incorrect codes for
the conditions that the participants were allocated to and was
instructed to analyse the data using the potentially fake codes for
the conditions. Thus, E.J.B. was kept blind during data-analysis. The
research participants were not blinded.
After informed consent, the participants completed a baseline
questionnaire (pre-test). After allocation the participants completed a
follow-up questionnaire after 1 and 2 months.
The demographic variables were recorded with factual questions.
All scales used had good internal consistency ( 0.70).
Caregiver stress (primary outcome) was measured with the
13item Modified Caregiver Strain Index that has three answer options
(i.e. ?Yes, on a regular basis?, ?Yes, sometimes? and ?No?).27 An
example item is ?I feel completely overwhelmed (e.g. I worry
about the person I care for; I have concerns about how I will
manage)?. The scale score ranges from 0 to 26; a high score
indicates a high level of caregiver stress.
Distress was measured with the 5-point (i.e. ?No?, ?Sometimes?,
?Regularly?, ?Often?, ?Very often or Constantly?) 16-item distress scale
of the 4DSQ.28 An example item is ?During the past week, did you
feel tense??. After measurement, the procedure for aggregating the
distress-scores was used (i.e. 3-point scale; ?No? = 0, ?Sometimes? = 1,
all other responses = 2).28 The scale ranges from 0 to 32; a high score
indicates a high level of distress.
The composite weighted work functioning method29 was used to
combine the participants? capacity for work scores, quality and
quantity of work scores and recovery from work scores, into a
single work functioning score. It has good construct and
discriminative validity.29 The scale ranges from 0 to 100; a high work
functioning score indicates impaired work functioning. Capacity for
work was measured with the mental?interpersonal work demands
subscale plus the physical work demands subscale (15 items) of the
Caregiver Work Limitations Questionnaire.30 Quantity of work was
measured with the 5-item output demands subscale of the Caregiver
Work Limitations Questionnaire.30 Recovery from work was
measured with the Need for Recovery Subscale.31 Quality of work
was measured with subscales that record fulfilment of in-role and
extra-role work responsibilities.32
Care-to-work interference, and care-to-social and personal life
interference, were measured with adapted versions of the negative
interference scales of the SWING instrument.33 The SWING
hometo-work interference scale was transformed into a care-to-work
interference scale by replacing the word ?home? with ?care
situation? in the scale items. The SWING work-to-home interference
scale was transformed into a care-to-social and personal life
interference scale by replacing the word ?work? with ?care situation? in the
items and by broadening the scale item content to social life. The
adapted scales used the original SWING response categories (i.e.
?Never?, ?Sometimes?, ?Often? and ?Always?).33 The scales range
from 0 to 24; a high score indicates a high level of interference.
Sample size and statistics
G-power34 analyses showed minimum sample size requirements
(n = 78) for adequate power for the statistical test (i.e.
power 0.80). A larger sample size was aimed for to compensate
for potential non-response or ?loss? of participants during the
research. Mixed model analysis of variance was used to examine
whether the intervention group reported less caregiver stress,
distress and functioning problems, over time than the control
group. A partial eta-square Z2p of between 0.06 and 0.14 indicates a
medium effect size.35
In total, 156 individuals were included and 128 participants
(n = 128) were randomized. Figure 1 shows the flow diagram and
table 1 presents the respondents? characteristics.
Effects of the role-focused self-help intervention
The mixed model ANOVA results showed an effect of time on
caregiver stress, F(2, 192) = 9.0, P < 0.001, Z2P ? 0:09. It also showed
a significant Time Group interaction effect, F(2, 192) = 4.8,
P < 0.01, Z2P ? 0:05. Over time, a clear decline in caregiver stress
was observed in the intervention group (Mbaseline = 14.1, SD = 5.3;
Mpost-test 1 month = 12.4, SD = 5.5; Mpost-test 2 months = 10.9, SD = 5.8).
This was not the case in the control group (Mbaseline = 14.7,
SD = 4.7; Mpost-test 1 month = 14.8, SD = 5.7; Mpost-test 2 months = 14.2,
SD = 5.4). Bonferroni corrected post hoc tests made clear that the
level of caregiver stress 2 months after baseline was significantly
lower than the level of caregiver stress at baseline measurement
(P = 0.001). Table 2 presents an overview of the means over time.
Further, the mixed model ANOVA results showed an effect of
time on distress, F(2, 186) = 10.2, P < 0.001, Z2P ? 0:10. It also
showed a significant Time Group interaction effect, F(2,
186) = 7, P < 0.01, Z2P ? 0:07. Over time, a clear decline in distress
was observed in the intervention group (Mbaseline = 16.6, SD = 7.4;
Mpost-test 1 month = 14.6, SD = 6.8; Mpost-test 2 months = 11.3, SD = 7.2).
This was not the case in the control group (Mbaseline = 19.2, SD = 7.4;
Mpost-test 1 month = 19, SD = 7.9; Mpost-test 2 months = 18.7, SD = 8.7).
Bonferroni corrected post hoc tests made clear that the level of
distress 2 months after baseline was significantly lower than the
level of distress at baseline measurement (P = 0.001). Table 2
presents an overview of the means over time.
No significant effects were observed on work functioning,
care-towork interference or care-to-social and personal life interference. All
Time Group interactions were found to be non-significant
(P > 0.05).
This study examined whether the role-focused self-help intervention
would decrease the caregiver stress, and the distress and functioning
problems, of individuals who combine paid work with informal care.
Significant effects of the intervention on caregiver stress and distress
The participants had self-applied for participation and some
participants discontinued their participation on their own initiative.
Thus, self-(de)selection bias may undermine the generalizability of
the research findings. Furthermore, the study did not address
clinical significance. Two months after allocation the number of
individuals who had a worrisome distress score (i.e. score > 11)36
had nearly halved in the intervention group, while in the control
group the number of individuals who reported such a distress
score had decreased by only a tenth, X2(
) = 14, P < 0.001. Yet,
the clinical significance of the intervention remains an issue for
research. For now, it is concluded that the research findings, and
the intervention, are relevant to people who have paid work and
report stress complaints due to their involvement in informal care
and who are motivated and skilled to complete this intervention.
Further, this research has its limitations, because (i)
interventionadherence was not monitored and (ii) a waiting-list control
condition was used. The care plus work situations of individuals
who combine work with informal care are not static nor fully
interchangeable. Hence, the intervention purpose wise was not a
fixed-protocol fixed-dose intervention. In addition, the primary
focus of the research was only on the overall effectiveness of the
intervention. Detailed monitoring of intervention-adherence thus
was less feasible and less relevant in the current research. Yet,
information about active adherence to the intervention would have
contributed to the credibility of the intervention. In case the
participants did not actively use the intervention, then its effects may
be attributed to factors other than the content of the intervention
materials (e.g. receiving attention, positive expectations, etc.).
Further, while waiting-list control conditions have their benefits
that contribute to the internal validity of the research,37 they also
equal lack of treatment and nocebo.37,38 The use of only a
waitinglist control condition raises the question of whether the observed
effect of the intervention should be specifically attributed to the
content of the intervention or to a non-specific effect (e.g.
placebo). Thus, for now it can only be concluded that the
intervention decreased the caregiver stress and distress of research
participants, and further research is needed on why the intervention
thus affected these outcomes.
The research findings may motivate occupational health
professionals to encourage individuals who combine paid work with
informal care to complete the role-focused intervention. However,
it should be acknowledged that people who combine paid work with
informal care may also suffer stressors other than role problems, and
interventions beyond psycho-education (e.g. legal aid) thus may be
of help when needed. Furthermore, the intervention did not
improve the participants? work functioning. In addition, while
self-management internet-based interventions have their
advantages (e.g. cost-effectiveness, accessibility, etc.), it is also the
case that such interventions may have negative side effects (e.g.
decreased inclinations to ask health professionals for help when
in-person help would be needed).39 Thus, while the intervention
represents a way to support people who combine paid work with
informal caregiving, professionals should understand that these
people may still have additional need for their support and care.
Suggestions for research
Further research should clarify why the intervention decreases the
caregiver stress and distress of individuals who combine paid work
with informal care. In case the intervention decreases stress in its
users due to a non-specific effect (e.g. receiving attention and
positive expectations), then the observed decrease in stress may
only be short-lived for users. Should this be the case, then the
intervention may need improvements to help its users make the critical
role changes for sustained stress reduction. Researchers can use a
three-armed randomized controlled trial design to examine whether
participants allocated to the intervention group report decreased
caregiver stress as compared with participants allocated to
respectively a placebo group and a waiting-list or nocebo group. Further,
researchers can conduct a user study and closely monitor
intervention-adherence and time spend on elements of the intervention, to
examine whether specific elements of the intervention are more
effective than others and to gain a better understanding of the role
theory processes of the intervention. Furthermore, researchers can
examine whether the intervention affects outcomes that represent an
increased ability to fulfil the role of informal caregiver and/or
increased ability to combine the work role with the role of
informal caregiver, for instance caregiver self-efficacy. Further, the
relevance of the intervention to the work functioning of those who
combine a paid job with informal caregiving should be further
examined. It may be the case that, for instance, when stress
reduces in these people due to the effect of the intervention, they
may as a result be better able to undertake action to resolve their
functioning problems. In addition, the study outcome on work
functioning may have been different if only the functioning of the
research participants 2 months after allocation had been included
in the analysis. This issue should be further explored, because post
hoc one-way ANOVAs revealed that only 2 months after allocation
the intervention group had significantly less severe work functioning
problems (M = 33, SD = 2.01) than the control group (M = 40,
SD = 1.88), F(
) = 6.2, P < 0.05. Thus, researchers should
further examine effects of the intervention on the functioning of
people who combine paid work with informal care. In this
context, it is of interest to not only examine effects on work
functioning but to also examine whether the intervention helps people
who combine paid work with informal care to function more
effectively in the role of informal caregiver in the private non-work
The role-focused intervention reduced caregiver stress and distress
in people who suffer stress because they combine paid work with
This research was partially funded by a grant awarded by the
Instituut Gak, grant number 2014-513.
Conflicts of interest: None declared.
People who combine paid work with informal caregiving
may suffer caregiver stress and distress.
The newly developed role-focused self-help course reduces
caregiver stress and distress in these people.
Occupational health professionals, academic researchers and
those who combine paid work with informal care can freely
download and use the E-book containing the role-focused
selfhelp course (Dutch version) via www.amc.nl\mantelzorgstress.
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