Feasibility Study of Project Carer Matters for Family Caregivers of People With Dementia Receiving Home-based Caregiving
Conditions: Caregivers, Caregiver Burden, Caregiver Burnout, Dementia
Sponsor: Tan Tock Seng Hospital

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Protocol for Feasibility Study of Project Carer Matters 
Date Protocol Created: 1 May 2021 
The Study 
Aims 
We will conduct a mixed-methods study to (1) Evaluate the feasibility of SHARE for caregivers of 
PwD and to (2) Explore perspectives of key stakeholders who are directly or indirectly involved with 
SHARE, to better understand the potential sustainability of this framework.  
The objectives of our study are as follows: 
1. To explore the perceptions, attitudes and beliefs of family caregivers, healthcare workers 
and community partners towards SHARE. 
2. To explore the barriers and facilitators of acceptance and implementation of SHARE. 
3. To gain insights into the perceived demand of SHARE. 
4. To gain insights into the family caregivers’ preliminary responses to and outcomes from 
SHARE. 
Design 
A convergent parallel mixed-methods study design will be used to collect, analyse, and interpret 
quantitative and qualitative descriptive data (Creswell & Creswell 2018).  
Our overall evaluation of the SHARE programme is built off the Theory of Change (ToC) conceptual 
framework. This is a pragmatic framework which is focused on mapping out how and why a 
programme is expected to work and achieve its desired goals in the real world as opposed to in a 
research setting, and has been used widely around the world (De Silva et al., 2014; Esponda et al., 
2021). It does this by first identifying the desired impact and long-term outcomes, then looks 
backwards to identify all the preconditions (i.e. short- and medium-term outcomes) that must be in 
place for the long-term outcomes to be achieved. The interventions needed to move from one 
precondition to the next for achieving the long-term outcomes are also identified. This approach 
allows us to better clarify the aims, objectives and outcomes of SHARE and the mechanisms that 
underpins the programme’s ability to affect the caregiving ecosystem (De Silva et al., 2014).  
Our initial ToC map is presented in Figure 2. This map describes the causal pathways of how SHARE 
achieves the long-term outcome in caregivers of “improved capacity for sustained caregiving of the 
PwD”. This was built off a discussion with a range of stakeholders - hospital leaders, community 
partners, care support nurses, and ward nurses – which led to a consensus on the process and 
outcome indicators for each precondition in the pathway, and the key assumptions which set out 
the conditions which the casual pathway needs to achieve the impact.  
Study setting 
Our study will involve six inpatient wards of a 1,700-bedded tertiary care hospital which are piloting 
SHARE. These wards comprise of four acute wards and two sub-acute wards. They are selected as 

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they admit a comparatively greater number of patients with dementia than other wards in the 
hospital. The study will be conducted over 12 months. 
Participants 
Quantitative data collection 
Our quantitative data is based off programme data collected from all caregivers who undergo 
SHARE. Hence, it will consist of all caregivers of PwD whose care recipient is admitted into the pilot 
wards and agree to participate in SHARE. 
Qualitative data collection 
We will be collecting data from key stakeholders of the different components of the SHARE 
programme. The key stakeholders comprises: (1) Family caregivers of PwD (n = 25 to 30), (2) Ward 
nurses (n= 8 to 10), (3) Care support nurses (n = 2 to 3), (4) Intervention programmes facilitators and 
standardized patients (n = 3), (5) Community partners and hospital leaders (n = 4), and (6) Other 
clinicians - medical social workers, physiotherapists, occupational therapists and doctors (n = 4 to 5). 
Eligibility criteria 
Qualitative data collection 
Our inclusion criteria for participants in our qualitative data collection is as follows: 
For family caregivers, we would recruit individuals who are (1) Above 21 years of age, (2) The main 
family caregiver of the PwD receiving home-based care, (3) Able to converse in English language, and 
(4) Willing to have their interviews audio-recorded. 
For ward nurses, we would recruit individuals who are (1) Above 21 years of age, (2) Working as a 
nurse at one of the inpatient wards piloting SHARE, (3) Referred family caregivers to complete the 
brief screening tool, and (4) Willing to have their interviews audio-recorded. 
For care support nurses, other clinicians, and programme facilitators, we would recruit individuals 
who are (1) Above 21 years of age, (2) Involved in either providing direct or indirect patient care to a 
PwD and their caregiver through SHARE, and (3) Willing to have their interviews audio-recorded. 
For hospital management and leaders, we would recruit individuals who are (1) Above 21 years of 
age, (2) Key decision makers or in leadership positions within the hospital, and (3) Willing to have 
their interviews audio-recorded. 
For representatives of social service agencies, we would recruit individuals who are (1) Above 21 
years of age, (2) Working in institutions where there are ongoing or potentially future partnerships 
with TTSH to provide care services for PwD and their caregivers, (3) Key decision makers or in 
leadership positions within their institutions and (4) Willing to have their interviews audio-recorded. 
We will exclude any potential participant who refuses to have their interviews recorded. 
Quantitative data collection 

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Our eligibility criteria for participants to enter SHARE - whose information is captured in our 
quantitative data collection – are as follows: Family caregivers of a PwD who are (1) Above 21 years 
of age, (2) The main family caregiver of the PwD receiving home-based care, and (3) Able to read and 
converse in English.  
We will exclude any caregiver whose care recipient is planned for discharge to a long-term care 
facility, such as a nursing home. 
Recruitment 
Qualitative data  
Family caregivers of PwD admitted into the pilot wards who fit our inclusion criteria will be 
highlighted to the study team by attending clinical staff in the ward. The study team will approach 
these caregivers to further explain the study details and assess their eligibility for participation. 
Individuals who agree to participate will be met by the study team to provide written consent. 
Ward nurses and other clinicians who are eligible will receive a recruitment letter distributed by 
their department heads. The study team will also join their department meetings and roll calls to 
share the study. The study team will approach individuals who express interest to further explain the 
study details and assess their eligibility for participation. Individuals who agree to participate will be 
met by the study team to provide written consent. 
Hospital management staff and representatives of social service agencies will receive a letter of 
invitation via email, with the study team contact details attached within for reference. This would 
allow interested individuals to directly contact the study team. The team will then further explain 
the study details and assess their eligibility for participation. Individuals who agree to participate will 
be met by the study team to provide written consent. 
Quantitative data  
Family caregivers of PwD who are eligible for SHARE will be invited by ward staff to perform the brief 
needs assessment and hence receive the appropriate SHARE interventions. Verbal consent is 
obtained before they receive the interventions, that their information will be used to help evaluate 
the programme. 
Data Collection 
Our strategy for data collection and analysis is built off the Reach, Effectiveness, Adoption, 
Implementation and Maintenance (RE-AIM) framework. This would allow us to examine if the 
essential SHARE elements, (1) Affects our target population of caregivers of PwD – Reach, (2) brings 
about the desired effects in caregiver participants – Effectiveness, (3) are taken up well by our target 
population, healthcare and community service providers - Adoption, (4) are adhered according to 
our proposed implementation plan - Implementation and (5) are suitable for scaling and sustainment 
without excessive modification from the originally-planned framework of SHARE – Maintenance 
(Gaglio, Shoup, & Glasgow, 2013; Glasgow, Vogt, & Boles, 1999). Through the RE-AIM framework we 
can obtain the findings needed to improve the sustainable take-up and delivery of SHARE effectively 
and holistically. This approach has also shown promise in the evaluation of community-based 

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support programmes for caregivers (Samia, Aboueissa, Halloran, & Hepburn, 2014; Stevens, Smith, 
Trickett, & McGhee, 2012). 
Data collection will primarily consist of qualitative interviews, with some quantitative methods as 
detailed below. 
Procedures 
Qualitative data collection 
We will conduct one-time individual interviews using semi-structured interview guides with key 
stakeholders of the SHARE programme. The interviews will focus on (1) their views of SHARE, (2) 
facilitators and barriers to acceptability and implementation of SHARE , (3) issues associated with 
sustaining SHARE , and (4) processes that need to be fine-tuned for the scaling and sustaining of 
SHARE.  
All interviews will be audio-recorded and conducted on a voluntary basis. One researcher who is 
well-trained in qualitative research methods and independent of the development and execution of 
SHARE will conduct all the interviews. In addition, emotions, pauses, non-verbal language, and 
significant observations of the participants which could not be captured by audio recording will be 
recorded as field notes.   
Quantitative data collection 
We will also be collecting indicators related to the demand and acceptability of the SHARE 
programme. The following data will be collected: (1) SHARE programme log to store information 
related to the demand for the SHARE such as number of family caregivers screened, number of 
family caregivers assessed for needs, number of family caregivers provided with assistance through 
in-house services or referred to our partnered community-based agencies, etc. The log will also 
document information related to the work or implementation processes such as length of time to 
perform the screening and needs assessment, training hours for ward nurses and CARER facilitators, 
and etc; (2) SHARE programme satisfaction survey to ask family caregivers about their satisfaction 
with the SHARE programme; (3) Intervention programme log to store information related to the 
demand for the caregiver intervention programme such as the demographics of participants for each 
intervention programme, attendance and drop-out rate of the programme, and etc; (4) Intervention 
programme surveys that capture appropriate psychological measures such as caregiver burden as 
measured using a modified version of the Zarit Burden Inventory, caregiver anxiety and depression 
as measured using the Hospital Anxiety and Depression scale, caregiver competence as measured 
using the Caregiver Competence scale and caregiver mastery as measured using the Personal 
Mastery scale (Pearlin, Mullan, Semple, & Skaff, 1990; Pearlin & Schooler, 1978; Zarit, Reever, & 
Bach-Peterson, 1980; Zigmond & Snaith, 1983); (5) Intervention programme satisfaction surveys; 
and (6) Dementia forum satisfaction surveys. 
Data analysis 
Qualitative analysis 

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Audiotape recordings for each interview will be transcribed verbatim and double-checked to ensure 
the accuracy of transcription. Transcripts will be sorted, coded, and categorized accordingly to 
facilitate thematic analysis, aligning codes, subthemes and themes against the. Reach, Effectiveness, 
Adoption, Implementation and Maintenance of SHARE. Our application of the ToC model would help 
ensure completeness of our inquiry and understanding of the relevant factors that enable or hinder 
the effective rollout and engagement of SHARE by caregivers and other stakeholders in the hospital 
and community ecosystem  (Holtrop, Rabin, & Glasgow, 2018).  
Quantitative analysis 
Descriptive statistics such as mean, standard deviation, median and interquartile range will be used 
to describe caregiver-specific outcomes captured. Paired-t-tests will be applied to examine the effect 
of SHARE interventions on caregivers’ reported depression, anxiety, and mastery scores before and 
after SHARE interventions. Data analysis will be conducted using IBM SPSS version 25 (IBM Corp, 
2016). Statistical significance will be set as p < 0.05. 
Data triangulation 
Both qualitative and quantitative data will be triangulated using the RE-AIM framework address the 
research objectives of our study. These insights will then be used to generate an updated ToC model 
explaining how SHARE improves caregiver capacity for sustained caregiving of the PwD. This final 
ToC model will reflect the processes and mechanisms of SHARE that contribute towards the short, 
medium and long-term outcomes we intended, and can serve as a guide for future researchers and 
practitioners. 
Ethical Considerations 
The purpose of this study will be explained to prospective eligible study participants, and the 
expected level of involvement. Potential caregiver participants will be reminded by the research 
assistant that their participation in the study is voluntary, and that it would not affect their ability to 
engage in the interventions within the SHARE Programme.  
Written consent will be sought from individuals who agree to participate in the semi-structured 
interviews. Each participant will retain a signed copy of the consent form containing the Principal 
Investigator’s contact details if they have further queries. A token cash voucher will be provided to 
participants after their completion of the interview as reimbursement for their participation in the 
study. 
As the quantitative data collected in this study consists of the programme logs and data of all SHARE 
participants, verbal consent is sought from all caregivers identified to receive SHARE interventions, 
with a participant information sheet that as part of the evaluation and improvement of the service, 
the information they furnish will be anonymized and aggregated for analysis.  
Ethical review 
The study protocol was reviewed and approved by the National Healthcare Group Domain Specific 
Review Board (DSRB Ref: 2020/00087). This study has also been externally peer-reviewed and 
awarded funding through the Geriatric Education and Research Institute (GERI) Intramural Project 

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Grant (GERI Ref: GERI1626) on 15 May 2020 for this study, with approval for its conduct from 01 Dec 
20 to 31 Mar 2022. 
Validity and Rigour 
To ensure rigour in our study, we will apply the principles specific to both the qualitative and 
quantitative study designs. 
Qualitative validity 
The credibility of our qualitative analysis will be ensured by complying with the recommended 
principles for qualitative analysis when applying the RE-AIM framework (Gaglio et al., 2013; Holtrop 
et al., 2018; Ward, Furber, Tierney, & Swallow, 2013). Two researchers will code all transcripts 
independently, ensuring consistency in the coded data across the multiple groups of participants.  
Quantitative validity 
The outcome measures used in this study – the Caregiver Competency Scale, the Caregiver Mastery 
Scale, the Hospital Anxiety and Depression Scale and the Zarit Burden Interview, have been validated 
for use in local caregivers of PwD in our earlier research (Chan et al., 2018; Chan, Lim, et al., 2019). In 
addition, these measures have been shown to be both easy to understand and capable of being self-
administered by caregivers, making them appropriate tools for use. 
 
 

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Figures 
Figure 1: Framework of SHARE Programme 
Figure 2: Proposed Theory of Change map for SHARE Programme 
 

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