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Wang et al. BMC Nursing (2024) 23:84
https://doi.org/10.1186/s12912-024-01706-5 BMC Nursing
*Correspondence:
Shanshan Wang
shan-shan.wang@polyu.edu.hk
1School of Nursing, The Hong Kong Polytechnic University, Hong Kong
SAR, China
2Department of Nutrition and Food Studies, George Mason University,
Fairfax, VA, USA
3Department of Statistics, The Chinese University of Hong Kong, Hong
Kong SAR, China
4University of Wollongong, Wollongong, NSW, Australia
Abstract
Background Providing informal care for individuals with dementia is frequently a challenging and demanding
experience that can have detrimental eects on the psychological well-being of caregivers. Regrettably, community-
based caregiver services often prove inadequate, highlighting the necessity for innovative approaches to support
caregivers.
Aim To test the ecacy of e-bibliotherapy in improving the psychological well-being of informal caregivers of people
with dementia.
Method The study is divided into two phases. In phase 1, the research team will co-design the e-bibliotherapy
app with caregivers. In phase 2, a randomized controlled trial will be conducted among 192 informal caregivers of
people with dementia in Hong Kong. Caregivers will be randomly assigned to either the e-bibliotherapy group or
the control group using simple randomization. Outcome measures will encompass caregivers’ psychological well-
being, caregiving appraisal, mental health, saliva cortisol levels as an indicator of stress, and health-related quality of
life for caregivers. Data will be collected at baseline, immediately post intervention, and 3 months and 6 months post
intervention. General linear mixed model will be employed to analyze intervention eects. Qualitative interviews
will be undertaken to explore caregiver experiences within this study and evaluate intervention acceptability using
conventional content analysis methods.
Discussion This study represents a pioneering eort in utilizing e-bibliotherapy to enhance the psychological
well-being of informal caregivers of individuals with dementia, addressing the existing gap in caregiver services and
facilitating knowledge dissemination within the community.
Trial registration The trial has been registered on ClinicalTrial.gov (Ref: NCT05927805).
Keywords Bibliotherapy, Electronic, Dementia, Caregiver, Psychological well-being, Nursing
E-bibliotherapy for improving the
psychological well-being of informal
caregivers of people with dementia:
a randomized controlled trial protocol
ShanshanWang1* , JingQin1, Daphne Sze KiCheung1, StefanosTyrovolas1,2 , Sze Him IsaacLeung3,
Angela Yee ManLeung1 and Patricia MaryDavidson4
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Wang et al. BMC Nursing (2024) 23:84
Background
As the global population ages, the prevalence and bur-
den of dementia are escalating, particularly among older
adults [1]. In 2019, over 55.2million people worldwide
were living with dementia, and projections indicate that
this number will rise to 78million by 2030 and 139mil-
lion by 2050 [2]. Consequently, this condition neces-
sitates an enhancement of services for people with
dementia by governments and healthcare professionals.
However, the availability of services remains insucient
to meet the growing demand [3]. As a result, informal
caregivers assume a crucial role in providing primary
care to individuals with dementia [4].
Approximately 85% of older adults with mild to mod-
erately severe dementia receive care from informal care-
givers [5], who are unpaid unprofessional caregivers
such as family members [6]. However, caring for a per-
son with dementia can be demanding due to the com-
plex behavioral and psychological symptoms, stigma,
and safety risks, which can have detrimental eects on
caregivers’ psychological well-being, quality of life, and
lead to stress, anxiety, and depression [7–9]. More than
80% of caregivers report high-level stress, and nearly half
experience depression during their caregiving role [10].
e poor psychological state of informal caregivers can
result in inadequate care and early placement in nursing
homes for people with dementia [11]. Our survey of Chi-
nese dementia caregivers revealed that their psychologi-
cal well-being was unsatisfactory, characterized by low
autonomy and low environmental mastery. is was par-
ticularly evident during the COVID-19 pandemic, with
72.1% of caregivers experiencing clinical or major depres-
sion, in addition to high levels of stress [12]. Another
study found that approximately 80% of working dementia
caregivers felt depressed or hopeless, and 60.8% reported
poor or fair health status [13].
Given the deleterious eects on psychological well-
being, informal caregivers have articulated the need for
health and social services [14]. e majority of informal
caregivers have emphasized their need for assistance with
day-to-day care and striking a balance their caregiving
role and personal needs [15]. At present, various counsel-
ling, emotional support, and respite services are provided
for caregivers in Hong Kong [16]. However, the utiliza-
tion rate of dementia caregiver services remains generally
low (< 40%), typifying a global phenomenon [17].
Several factors contribute to this phenomenon. Firstly,
the current caregiver services are nonstructured and pri-
marily consist of generic counseling that does not cater to
the specic needs of caregivers [16]. Secondly, the limited
availability of healthcare professionals results in exten-
sive waiting lists and poor accessibility, with the majority
of applicants unable to receive services even after half a
year of waiting [16]. irdly, caregivers often hesitate to
seek help due to their high workload, emotional over-
involvement, and a strong sense of lial or social obliga-
tion [18]. Our interviews revealed that Chinese dementia
caregivers exhibit signicant tolerance and reluctance to
use services, stemming from their fear of not fullling
their lial duties [19]. Lastly, and more fundamentally,
it is unsustainable to solely rely on external services to
address health problems caused by long-term care, and
more fundamental changes may be necessary to support
informal caregivers.
In light of the current situation, a multitude of stud-
ies have been conducted. A published systematic review
indicates that psychosocial and psychoeducational inter-
ventions tend to be benecial to dementia caregivers
[20]. Among these interventions, cognitive-behavioral
techniques have been found to be the most benecial
for enhancing caregiver mental health [21]. Despite the
therapeutic benets demonstrated in previous studies,
current services and interventions are predominantly
provided in face-to-face or group-based formats, which
may not be feasible for those encountering challenges
in securing substitute caregivers or those who hesitate
to seek help due to stigma [22]. Consequently, there is
a pressing need to implement accessible, feasible, con-
venient, and sustainable interventions that can be inte-
grated into community services. A systematic review
revealed that individual self-help interventions could
aid in overcoming existing barriers and are more eec-
tive than group interventions [23]. It is crucial to provide
interventions that can be tailored to the specic needs of
caregivers, delivered in a format that is accessible to all
caregivers, and sustained over the long term.
Bibliotherapy, an innovative non-pharmacological self-
help intervention, has the potential to address the criteria
mentioned above. Bibliotherapy is an individual inter-
vention that involves reading materials for therapeutic
benets [19]. Our systematic review indicates that biblio-
therapy is eective in improving mental health, with sus-
tained eects [6]. is model of intervention that applies
cognitive-behavioral techniques requires few resources
and has good sustainability, as caregivers can continue
using the reading materials even after the intervention
period. e mechanism of bibliotherapy is typically based
on the process of the ‘identication-catharsis-insight”
process, which guides caregivers to identify their prob-
lems, achieve emotional release, and gain insight into
cognitive reframing [19].
Our pilot study demonstrated the feasibility and pre-
liminary ecacy of bibliotherapy in enhancing caregiv-
ers’ psychological well-being and caregiving appraisal
[19]. However, several factors necessitate the need for a
full trial. To begin with, participants from the pilot study
suggested modications to the intervention protocol to
better cater to caregivers’ needs and enhance usability.
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Wang et al. BMC Nursing (2024) 23:84
e conventional delivery method of written materials
restricts dissemination to those with low literacy levels.
To overcome this, participants proposed an e-bibliother-
apy approach, such as a user-friendly app, to facilitate
dissemination to a broader range of caregivers, regardless
of their educational background [19]. Our review corrob-
orated the eectiveness of e-bibliotherapy in improving
the mental well-being of dementia caregivers [6]. More-
over, although the eect size of caregiving appraisal was
moderate, the eect size on psychological well-being was
small in the pilot trial. Given that caregiving appraisal is
the mechanism driving changes in psychological well-
being [12], the small-scale pilot study might have been
underpowered to detect a genuine eect on psychologi-
cal well-being. To validate the eect size observed in the
pilot study and establish the generalizability of the nd-
ings, a trial with a larger sample size is still required.
Furthermore, the pilot study only examined the imme-
diate post-intervention eect, while evidence suggests
a sustained eect of bibliotherapy, which has not been
extensively studied [6]. erefore, in this study, we will
develop and test an e-bibliotherapy app-based interven-
tion within a fully powered randomized controlled trial.
is implementation of this intervention has the poten-
tial to facilitate an accessible, convenient, and sustain-
able approach to enhance the psychological well-being of
informal caregivers of people with dementia, ultimately
leading to an improvement in the quality of care provided
to those with dementia.
The study
Aims
To evaluate the ecacy of e-bibliotherapy in improving
the psychological well-being of informal caregivers of
people with dementia.
Hypothesis
Participants in the e-bibliotherapy group will demon-
strate a greater improvement in psychological well-being
than the control group immediately post interven-
tion, and three and six months after completing the
intervention.
Methods
PHASE I co-design an E-bibliotherapy app
Informed by the feedback obtained from our pilot study
and literature review, an e-bibliotherapy app is being
developed. e app’s design follows senior-friendly web-
site guidelines, such as font size, contrast, button style
and size, menus, and navigation, to ensure usability for
caregivers, who are mainly middle-aged and older adults.
To protect the privacy of the participants, each partici-
pant will be given a project ID and password to log in to
the app. No personal information will be collected while
using the app. Only authorized participants and research
team members can log in to the app and access the
research data. ese measures will ensure that the par-
ticipants’ privacy is protected and that the data collected
are secure.
App functionalities
e E-bibliotherapy App will include several functions
to support the users. e learning functionality will be
used to upload the contents of the bibliotherapy manual
that was tested in the pilot study. e manual comprises
eight chapters, each of which is divided into several sub-
sessions. Explanatory mini videos highlighting key infor-
mation from each session will be produced to enhance
participants’ comprehension. Audiobook functional-
ity will be used to allow users to listen to the materials.
Mandatory task functionality will be set up to facilitate
establishing designated compulsory tasks. Participants
will be restricted from advancing to the next session
until they have completed the requisite mandatory tasks.
Voice input functionality will be used to allow users to
complete tasks via auditory input. An e-bulletin will
be set up to enable users to read the latest updates and
reminders. Finally, a messenger function will allow users
to communicate with the researchers. In addition to the
above-mentioned functions for users, there will also be
a statistical functionality for researchers to monitor the
learning progress of each participant and calculate the
task completion rate automatically.
Co-design the E-bibliotherapy app with end-users
To ensure that the E-bibliotherapy App meets end user’s
needs, we will invite them to co-design the app through
focus group interviews. e feedback collected from the
interviews will be used to maximize the app’s feasibility,
usability, and acceptability. Below are the details of the
co-design:
Sampling Purposive sampling will be used to recruit a
relatively diverse sample in terms of age, gender, educa-
tional level, caregiving duration, caregiving intensity, etc.
We plan to invite 4 to 8 caregivers in each focus group.
ematic saturation will be used as the criterion for ceas-
ing the interviews.
Eligibility criteria for caregivers To participate in the
study, caregivers must meet the following inclusion crite-
ria: (1) be primary caregivers aged 18 or above; (2) provide
unpaid regular care to a person with mild or moderately
severe dementia consistent with a score between 4 and 6
using the Global Deterioration Scale [24]; (3) have cared
for the care recipient for at least six months; (4) assist with
at least one of the care recipient’s daily activities; (5) use
a smartphone or tablet; and (6) be able to read Chinese.
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Wang et al. BMC Nursing (2024) 23:84
Caregivers will be excluded if they (1) have unstable
physical or mental conditions; (2) have cognitive impair-
ment; (3) are undergoing acute treatment or have not
yet stabilized on their chronic medication; and (4) are
involved in another interventional study.
Data collection To ensure that participants are famil-
iar with the E-bibliotherapy App prototype, they will be
asked to attend a brieng session two days before the
focus group. During the brieng, the app prototype will
be installed on their smartphones or tablets, allowing
them adequate time to acquaint themselves with the app’s
features and functionalities.
Each focus group will include a moderator and a note-
taker to ensure that all participants’ feedback is captured
accurately. Open-ended questions will be asked (e.g., In
general, what do you think of the prototype? What do you
think is good about the app? What diculties or barriers
have you encountered when using the app? What recom-
mendations do you have to make the app better t your
needs?). e interviews will be audio-taped under the
participants’ consent. Each interview will last for 60 to
90 min, depending on the natural break. Conventional
content analysis will be conducted to capture the feed-
back from the focus group interviews.
E-bibliotherapy app debugging e app will be adjusted
according to the co-design ndings and go through pilot
testing among 12 caregivers to test the app’s usability [25].
en, the app will be further debugged based on the pilot
study comments.
PHASE II randomized controlled trial
Study design
A single-blinded, parallel-group, two-arm randomized
controlled trial. e study protocol complies with the
SPIRIT checklist [26] and is registered at ClinicalTrial.
gov (Ref: NCT05927805).
Setting and sampling
Convenience sampling will be used to recruit partici-
pants from government-subsidized community-based
elderly service centers. Sta from the centers will recom-
mend potential participants to the research team, and a
research assistant will assess the eligibility against the cri-
teria mentioned in the co-design stage. e recruitment
process is anticipated to commence in May 2024.
Sample size
e sample size was calculated by testing between-and-
within interactions in a General Linear Mixed Model
(GLMM), using the software “General Linear Mixed
Model Power and Sample Size”. Type I and II errors were
set at 0.05 and 0.2, respectively. e marginal means of
psychological well-being from the pilot study at baseline
and post intervention were 84.07 and 86.35, respectively,
for the intervention group. For the control group, they
were 73.5 and 70.7, respectively. We assume that the fol-
low-up values for the intervention group are equal to 85.7
and 85.2; 71 and 71.3 for the control group. e standard
deviation of the pilot study was 13. An autoregressive
correlation structure (AR1) with a correlation equal to
0.7 was used. To achieve alpha = 0.05 and power = 0.801,
the estimated sample size would be 160. Considering the
20% attrition rate of the pilot study, the estimated sample
size would be 192 in total.
The intervention group
Participants in the intervention group will be provided
with access to the e-bibliotherapy app installed on their
smartphones. A standardized bibliotherapy manual will
also be distributed to them for convenient reference. e
manual, which has been pilot tested, comprises eight
chapters, each approximately ten pages in length [19].
Each chapter centers on a single active component that
could potentially inuence a caregiver’s psychological
well-being. e intervention materials from the manual
(texts, relevant explanatory images, and assignments),
matched with corresponding videos and audio, will be
uploaded to the app, and only the intervention group will
be granted authorization to access them.
During the intervention, participants will undergo
eight weekly sessions of e-bibliotherapy (Table1). Each
session will entail viewing an explanatory video, reading a
chapter or listening to the audiobook, and completing the
corresponding tasks. is is an individual self-help inter-
vention, enabling caregivers to complete the watching
and reading at their convenience, at any time and loca-
tion. Telephone coaching, if required, can also be availed.
e research team will monitor participants’ intervention
completion levels through statistical functionality. For
those who have completed less than 60% of the tasks or
require assistance with problems, standardized protocol-
based telephone coaching will be arranged. e coaching
aims to enhance participants’ adherence and safety, and
will be conducted by a trained research assistant with a
background in psychology or nursing. Each coaching ses-
sion will last for no more than 30min, as reported by our
pilot study. e coaching manual encompasses trouble-
shooting plans, such as behavior management, care-
giver distress, and caregiver discouragement, which are
designed to address unforeseen circumstances [19].
The control group
Participants in the control group will utilize the identical
e-bibliotherapy application, yet they will only be autho-
rized to access another portal oering general daily living
knowledge distinct from the intervention content. ey
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Wang et al. BMC Nursing (2024) 23:84
will be requested to complete a session weekly for a dura-
tion of eight weeks. Upon project completion, they will
gain access to the intervention group’s content.
Outcomes
Psychological well-being Psychological well-being will be
measured with the Chinese version of Ry’s Psychologi-
cal Well-being Scale [27]. It is a 6-point Likert scale with
1 = strongly disagree to 6 = totally agree. A higher score
indicates better psychological well-being. It includes 18
items and is divided into 6 subscales: positive relations
with others, autonomy, environmental mastery, personal
growth, purpose in life, and self-acceptance. e Cron-
bach’s α of the whole scale is 0.936, and the αs for the sub-
scales ranged from 0.709 to 0.910 in our pilot study [19].
Caregiving appraisal e Chinese version of the Caregiv-
ing Appraisal Scale [28] will be used. It is a 5-point Likert
scale, with higher scores indicating more positive caregiv-
ing appraisals. It includes 26 items and is divided into 4
subscales: caregiving burden, caregiving satisfaction, care-
giving mastery, and caregiving impact. e Cronbach’s α
of the whole scale was 0.883, and the αs for the subscales
ranged from 0.651 to 0.854 in our pilot study [19].
Mental health e Chinese version of the Depression
Anxiety Stress Scale-21 (DASS-21) will be used to mea-
sure the mental health problems of the participants. e
DASS-21 is a 4-point Likert scale. It includes 21 items
with three dimensions: depression, anxiety, and stress.
e DASS-21 has demonstrated good reliability among
Chinese adults, with Cronbach’s α ranging from 0.80 to
0.83 for each subscale [29].
Biomarker of stress Saliva cortisol concentration will serve
as a stress biomarker, as cortisol is the major hormone that
reects stress levels and helps the body cope with stress. It
is a sensitive measure of stress among dementia caregivers
[30], with morning cortisol levels validly predicting daily
stress levels. erefore, saliva samples will be collected
upon waking for cortisol assessment.
Health-related quality of life e 12-item Short Form
Survey (SF-12) will be used [31]. e SF-12 is often used
to indicate quality of life and as a proxy for health sta-
tus. According to Lam et al. (2013), the SF-12 represents
a valid, reliable, and sensitive measurement among the
Hong Kong Chinese population. e Cronbach’s α of the
scale is 0.7.
Table 1 Intervention protocol for this study
Weekly tasks Session Contents
Watch session 1 videos
Read session 1/listen to audiobook session 1
Finish assignment/coaching
Dementia and caregiver
health
• What is dementia
• Stages and symptoms of dementia
• Can dementia be cured
• How providing care can aect you as a caregiver
Watch session 2 videos
Read session 2/listen to audiobook session 2
Finish assignment/coaching
Controlling care recipient
behavioral problems
• Learning more about behavioral problems
• Finding the “triggers” for problem behaviors
• Ways to change care recipient behavioral problems
Watch session 3 videos
Read session 3/listen to audiobook session 3
Finish assignment/coaching
Home safety and daily
caregiving skills
• How to ensure home safety
• How to deal with diculties in daily care
• Some nancial and legal issues in caregiving
Watch session 4 videos
Read session 4/listen to audiobook session 4
Finish assignment/coaching
Improving the dyadic
relationship
• How to communicate with the care recipient
• Using non-verbal communication to improve the relationship
• Increasing pleasant events with the care recipient
Watch session 5 videos
Read session 5/listen to audiobook session 5
Finish assignment/coaching
Improving condence • The importance of condence in caregiving
• How to improve caregiving condence
• Some “Basic Rights” of caregivers
Watch session 6 videos
Read session 6/listen to audiobook session 6
Finish assignment/coaching
Recognizing and relieving
stress
• Danger signals and how to recognize early signs of stress
• Skills of relaxation and why it is so important for caregivers
• Using relaxation in stressful caregiving situations
Watch session 7 videos
Read session 7/listen to audiobook session 7
Finish assignment/coaching
Recognizing and dealing
with depression
• Recognizing common symptoms of depression
• Depression and its inuence
• How some little daily events can help prevent or reduce
depression
Watch session 8 videos
Read session 8/listen to audiobook session 8
Finish assignment/coaching
Improving family coping
and seeking social support
• Family coping in dementia caregiving
• Ways to improve family coping
• How to seek help from relatives and friends
• How to seek help from professionals
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Wang et al. BMC Nursing (2024) 23:84
Covariates Demographic data about various aspects of
the caregiving situation will be collected at baseline, such
as age, gender, kinship, education level, caregiving dura-
tion, intensity of care, and the care recipient’s stage of
dementia.
Participant timeline
e study owchart is shown in Fig.1, and the study
timeline is shown in Table 2. Participants will be
assessed at four time points: baseline (T0), immediately
post intervention (T1), 3 months (T2), and six months
(T3) post intervention. After receiving consent from
the participants, a research assistant who is blinded to
the group allocation will conduct the baseline assess-
ment (T0). Each participant will be coded with a sub-
ject ID number that is not related to their personal
information. Qualtrics will be used to collect survey
data. Telephone interview will be used as a contingency
plan in case the caregiver requests help in lling out the
questionnaires.
Fig. 1 The CONSORT owchart
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Wang et al. BMC Nursing (2024) 23:84
Before project initiation, a brieng session will be con-
ducted to train participants on how to use the E-biblio-
therapy App and collect and store saliva samples to assess
a stress biomarker. is is because the stress response is
considered a potential mechanism that can negatively
impact psychological well-being [32]. A Salivette® col-
lection device kit (Sarstedt, Nümbrecht, Germany) and a
user guide will be distributed to each participant.
Randomization, blinding, and allocation concealment
Stratied randomization will be used to allocate the par-
ticipants within two weeks after the baseline assessment.
Firstly, caregivers will be grouped into two strata, one
comprising adult child caregivers and the other consist-
ing of spousal caregivers. In order to ensure a balanced
number of dierent types of caregivers in each group,
simple randomization will then be performed with each
stratum. e allocation sequence will be generated by the
statistician on our research team, and a research assistant
who is not involved in data collection will assign par-
ticipants to their respective groups. e sequence of the
participants will remain concealed until group allocation
is designated. e data collector and community health-
care professionals will be blinded to the group allocation.
Given the nature of the intervention, it will be impossible
to blind the participants and the intervention facilitator.
Nested qualitative study at T1
A nested qualitative study will be conducted at T1 to
explore participants’ experiences using the intervention
and facilitate knowledge translation. Focus group inter-
views will be conducted with participants representing
varying intervention completion levels. e interview
guide will encompass overall experiences with the inter-
vention, perceived benets, facilitators, encountered
barriers, and suggestions for improvement. ematic sat-
uration will be used as the criterion for ceasing the data
collection.
Data analysis
Quantitative data analysis R software will be used for
analyses. Descriptive statistics will be used to summarize
the baseline data. Independent t-test, Mann-Whitney U
test, or chi-square test will be used to compare the base-
line data. To evaluate the intervention’s ecacy, GLMM
will be used. In all analyses, a signicance level of 5% will
be used. Cortisol concentrations will be analyzed at a col-
laborating laboratory using radioimmunoassay.
Qualitative data analysis e recordings of the focus
groups will be transcribed within 24h, and two research-
ers will organize and code the transcripts using NVivo
12.0 software (QRS International, Doncaster, Australia).
Conventional content analysis with an inductive approach
will be performed by constantly comparing the transcripts
to generate codes [33]. A codebook will be developed after
analyzing the responses from the rst focus group. If there
are any discrepancies in coding, the two coders will dis-
cuss them and consult with a third researcher, if neces-
sary, until a consensus is reached. e codes will then be
developed into subcategories and consolidated into cat-
egories. To ensure the credibility of the content analysis, a
member check will be conducted.
Intervention delity
e intervention is conceptually derived using an evi-
dence-based approach [6, 19]. To standardize inter-
vention quality, the intervention will be delivered via
standard videos, audio, and texts. Caregiver completion
of the intervention will be monitored via app statistics,
and treatment skill enactment will be assessed through
statistical functionality and weekly assignments. Coach-
ing sessions will follow a manual and be audio recorded
for delity checking. Borrelli’s tool [34] will be used to
assess the delity of the study. A steering committee with
three experts in gerontology and dementia research prac-
tice was formed to monitor the research process and data
Table 2 Time schedule of enrolment, interventions, and
assessments
Study Period
Enrolment Allocation Post-allocation
Timepoint -t0t0t1t2t3
1–9m 1–9m 4–
12m
7–
15m
10–
18m
Enrolment:
Eligibility screen X
Informed consent X
Allocation X
Interventions:
E-bibliotherapy group
Control group
Assessments:
Psychological well-
being (Ry’s psycho-
logical well-being
scale)
X X X X
Caregiving appraisal
(Caregiving appraisal
scale)
X X X X
Mental health
(DASS-21)
X X X X
Biomarker of stress
(Saliva cortisol
concentration)
X X X X
Health related quality
of life (SF-12)
X X X X
Note: t0: baseline assessment, t1: immediately post-intervention, t2: 3 months
post-intervention, t3: 6 months post-inte rvention
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Wang et al. BMC Nursing (2024) 23:84
management. e research team will report to the steer-
ing committee annually for the research progress.
Discussion
is study aims to enhance the psychological well-being
of informal caregivers of people with dementia through
an accessible, easy-to-use, and sustainable intervention
that overcomes caregivers’ barriers to participating in
psychosocial interventions. e e-bibliotherapy protocol
is developed based on solid evidence, including a series of
systematic reviews, surveys among informal caregivers of
people with dementia, and a pilot study [6, 12, 17, 19, 35].
Our program aligns with the imperative of implementing
interventions that address the critical problems among
dementia caregivers identied by other publications, and
the intervention components cover dierent emergent
needs of caregivers [16, 19]. Ecacy in improving care-
giver psychological well-being is expected with sustained
eects. As it is a self-help program that does not involve
much manpower compared to current caregiver services,
it can lower the economic burden on the healthcare
system.
An innovative aspect of this project is facilitating
dementia caregivers to engage in self-help through an
accessible and economical approach. Our study dif-
fers from current services as we focus on the positive
aspects of caregivers’ psychological well-being, such as
self-acceptance, meaning in life, and personal growth
and development, which require urgent attention. Cur-
rent non-pharmacological interventions typically focus
on reducing caregiver distress and burden [36]. How-
ever, the caregiving experience is multi-dimensional, and
the positive aspects cannot be ignored as they can oset
adverse health outcomes [37]. Improving the psycho-
logical well-being of informal caregivers of people with
dementia may help sustain them in the caregiving team
and promote ageing in place.
To the best of our knowledge, this is the rst study to
provide bibliotherapy through an app tailored for demen-
tia caregivers. Unlike existing commercial apps, this proj-
ect will design an e-bibliotherapy app through co-design
with end-users and utilize evidence-based approaches to
ensure that the app’s functions are suitable for dementia
caregivers. e intervention contents uploaded to the
app will be based on the bibliotherapy manual, which was
written using a generic approach. Only minor modica-
tions are needed to tailor it to the specic cultural con-
text, making it potentially applicable in other counties
and settings.
Furthermore, we will use both qualitative and quantita-
tive methodologies to analyze the eects and impact of
the intervention. Quantitative scales and biomarkers will
be used to measure the outcomes of interest. Moreover,
a nested qualitative study will be conducted to further
investigate caregivers’ experiences in the program, allow-
ing researchers to disseminate knowledge after the study.
By applying a multi-method design, we expect to gain a
comprehensive understanding of implementing an e-bib-
liotherapy program. e integration of quantitative and
qualitative data will ensure a more robust validation of
this project.
Acknowledgements
We would like to acknowledge the nancial support from our funder.
Author contributions
Conceptualization: SW, PMW; Design of the work: SW, JQ, PMD; Draft of the
work: SW, ISHL; Substantively revise the work: SW, DSKC, JQ, ST, ISHL, AYML,
PMD.All the authors have approved the submission of this manuscript.
Funding
This study is funded by the Health and Medical Research Fund (ref: 20211151),
Health Bureau, Hong Kong SAR, China.
Data availability
Not applicable.
Declarations
Ethics approval and consent to participate
Ethical approval was obtained from the ethics committee of the Institutional
Review Board of The Hong Kong Polytechnic University. No adverse event
was reported in our pilot study. In this full trial, all methods will be carried
out in accordance with relevant guidelines and regulations. Before data
collection, potential participants will receive a brieng on the study’s
objectives, procedures, potential benets, and risks. Participation is voluntary,
and participants may withdraw at any time without explanation. Informed
consent will be obtained from all participants before baseline data collection.
The research team has experience in safeguarding data integrity and
condentiality. The survey will be de-identied, and all the information will be
kept condential and accessible only to the research team.
Consent for publication
Not applicable.
Competing interests
The authors declare no competing interests.
Received: 8 November 2023 / Accepted: 3 January 2024
References
1. Prince M, et al. The global prevalence of dementia: a systematic review and
metaanalysis. Volume 9. Alzheimer’s & Dementia; 2013. pp. 63–75. 1.
2. World Health Organization., Global status report on the public health response
to dementia 2021.
3. Khanassov V, Vedel I. Family physician–case manager collaboration and needs
of patients with dementia and their caregivers: a systematic mixed studies
review. The Annals of Family Medicine. 2016;14(2):166–77.
4. Khanassov V, et al. Needs of patients with dementia and their caregivers in
primary care: lessons learned from the Alzheimer plan of Quebec. BMC Fam
Pract. 2021;22(1):186.
5. Sheng B, Law CB, Yeung KM. Characteristics and diagnostic prole of patients
seeking dementia care in a memory clinic in Hong Kong. Int Psychogeriatr.
2009;21(2):392–400.
6. Wang S, et al. The eects of bibliotherapy on the mental well-being of infor-
mal caregivers of people with neurocognitive disorder: a systematic review
and meta-analysis. Int J Nurs Stud. 2020;109:103643.
7. Kaddour L, Kishita N. Anxiety in informal dementia carers: a meta-analysis of
prevalence. J Geriatr Psychiatr Neurol. 2020;33(3):161–72.
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
Page 9 of 9
Wang et al. BMC Nursing (2024) 23:84
8. Yu R, et al. Trends in Prevalence and Mortality of Dementia in Elderly Hong
Kong Population: projections, Disease Burden, and implications for long-term
care. Int J Alzheimer’s Disease. 2012;2012:406852.
9. Xu H, et al. Vitamin B(6), B(9), and B(12) intakes and cognitive performance
in elders: National Health and Nutrition Examination Survey, 2011–2014.
Neuropsychiatr Dis Treat. 2022;18:537–53.
10. Etters L, Goodall D, Harrison BE. Caregiver burden among dementia patient
caregivers: a review of the literature. J Am Acad Nurse Pract. 2008;20(8):423–8.
11. Gaugler JE, et al. Unmet care needs and key outcomes in dementia. J Am
Geriatr Soc. 2005;53(12):2098–105.
12. Wang S, et al. Inuence of dementia literacy and caregiving appraisal on the
psychological wellbeing of informal caregivers of people with dementia: a
cross-sectional study. Front Med (Lausanne). 2022;9:971481.
13. Sau Po Centre on Ageing. Over 70% working caregivers experienced high levels
of stress, a latest study on dementia caregiving burden shows. 2020 March 20,
2023]; Available from: https://www.hku.hk/press/news_detail_21687.html.
14. Marziali E, McCleary L, Streiner DL. Evaluation of an assessment battery for
estimating dementia caregiver needs for health and social care services. Am J
Alzheimers Dis Other Demen. 2010;25(5):446–54.
15. Bressan V, Visintini C, Palese A. What do family caregivers of people with
dementia need? A mixed-method systematic review. Health Soc Care Com-
mun. 2020;28(6):1942–60.
16. Fu YY, et al. Improving primary level home and community care services for
older people: the case of Hong Kong. Int J Social Welf. 2018;27(1):52–61.
17. Wang S, Cheung DSK, Leung AYM. Overview of dementia care under
the three-tier long-term care system of China. Public Health Nurs.
2019;36(2):199–206.
18. Au A, et al. Coping strategies and social support-seeking behaviour
among Chinese caring for older people with dementia. Ageing Soc.
2012;33(8):1422–41.
19. Wang S, et al. Bibliotherapy for improving caregiving appraisal of informal
caregivers of people with dementia: a pilot randomized controlled trial. Res
Nurs Health. 2021;44(4):692–703.
20. Gilhooly KJ, et al. A meta-review of stress, coping and interventions in
dementia and dementia caregiving. BMC Geriatr. 2016;16(1):106.
21. Wiegelmann H, et al. Psychosocial interventions to support the mental
health of informal caregivers of persons living with dementia– a systematic
literature review. BMC Geriatr. 2021;21(1):94.
22. Teles S, et al. Training and support for caregivers of people with dementia:
the process of culturally adapting the World Health Organization iSupport
programme to Portugal. Dementia. 2021;20(2):672–97.
23. Selwood A, et al. Systematic review of the eect of psychological inter-
ventions on family caregivers of people with dementia. J Aect Disord.
2007;101(1):75–89.
24. Reisberg B, et al. The global deterioration scale for assessment of primary
degenerative dementia. The American journal of psychiatry; 1982.
25. Moore CG, et al. Recommendations for planning pilot studies in clinical and
translational research. Clin Transl Sci. 2011;4(5):332–7.
26. Chan A-W, et al. SPIRIT 2013 statement: dening standard protocol items for
clinical trials. Ann Intern Med. 2013;158(3):200–7.
27. Li R-H. Reliability and validity of a shorter Chinese version for Ry’s psycho-
logical well-being scale. Health Educ J. 2014;73(4):446–52.
28. Wang L-h. Explore the related factors between caregivers’ appraisal of care and
quality of family care on older people with disabilities Master. Taiwan: Meiho
Insitute of Technology; 2005.
29. Wang K, et al. Cross-cultural validation of the depression anxiety stress
scale–21 in China. Psychol Assess. 2016;28(5):e88.
30. Theorell T, et al. The use of saliva steroids (cortisol and DHEA-s) as biomarkers
of changing stress levels in people with dementia and their caregivers: a pilot
study. Sci Prog. 2021;104(2):00368504211019856.
31. Lam ET, et al. Is the SF-12 version 2 Health Survey a valid and equivalent
substitute for the SF‐36 version 2 Health Survey for the Chinese? J Eval Clin
Pract. 2013;19(1):200–8.
32. Thoits PA. Stress and health: major ndings and policy implications. J Health
Soc Behav. 2010;51(1suppl):S41–S53.
33. Hsieh H-F, Shannon SE. Three approaches to qualitative content analysis. Qual
Health Res. 2005;15(9):1277–88.
34. Borrelli B, et al. A new tool to assess treatment delity and evaluation of
treatment delity across 10 years of health behavior research. J Consult Clin
Psychol. 2005;73(5):852.
35. Wang S, et al. Factors associated with caregiving appraisal of informal care-
givers: a systematic review. J Clin Nurs. 2020;29(17–18):3201–21.
36. Mei YX, et al. Creating a Caregiver Benet Finding Scale of Family caregiv-
ers of Stroke survivors: development and psychometric evaluation. Front
Psychiatry. 2020;11:734.
37. Lloyd J, Patterson T, Muers J. The positive aspects of caregiving in demen-
tia: a critical review of the qualitative literature. Dement (London).
2016;15(6):1534–61.
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