Patient Education and Counseling 103 (2020) 788–803

Contents lists available at ScienceDirect

Patient Education and Counseling

journal homepage: www.elsevier.com/locate/pateducou

Review Article

Healthy together: A systematic review of theory and techniques used in

health interventions for persons with chronic neurological conditions
and their caregivers
Afolasade Fakoladea , Alexandra J. Waltersb , Julie Camerona , Amy E. Latimer-Cheungb ,
Lara A. Piluttia,*
a
Interdisciplinary School of Health Sciences, Brain and Mind Research Institute, University of Ottawa, Ottawa, Canada
b
School of Kinesiology and Health Studies, Queen’s University, Kingston, Canada

A R T I C L E I N F O A B S T R A C T

Article history: Objective: To evaluate the level of theory application and use of behaviour change techniques (BCTs) in
Received 12 April 2019 dyadic health interventions for persons with chronic neurological conditions (CNCs) and their caregivers.
Received in revised form 3 September 2019 Methods: A systematic review of five databases was conducted to locate articles published before January
Accepted 28 October 2019
2019. Methodological quality was assessed, study characteristics, theory application and BCTs were
narratively summarized.
Results: More than half of the studies identified (59% [16/27]) did not mention theory, and only 22% (6/27)
were explicitly theory-based. Across the 27 studies, two to 17 BCTs (mean = 6.8
4.02) were
used. Common BCTs were related to intervention implementation (e.g., credible source), knowledge
(e.g., instruction on how to perform behaviour) and skill development (e.g., behavioural practice/
rehearsal).
Conclusions: Researchers need to incorporate theory-based dyadic techniques that target both people
with CNCs and their caregivers into the design and implementation of future health interventions.
Practice implications: Health professionals require explicitly theory-based interventions to provide dyads
with CNCs techniques that they can apply in their daily life to the benefit of each individual and the
partnership.
© 2019 Elsevier B.V. All rights reserved.

Contents

1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 789
1.1. Aims and objectives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 789
2. Materials and methods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 789
2.1. Search strategy and selection . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 790
2.2. Eligibility criteria . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 790
2.3. Screening process . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 790
2.4. Data extraction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 790
2.5. Quality assessment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 790
2.6. Data extraction, coding and quality assessment processes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 791
2.7. Data synthesis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 791
3. Results . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 791
3.1. Description of included studies and participants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 791
3.2. Description of interventions, outcomes and methods of data analysis . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 793
3.3. Theory/Models and behaviour change techniques . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 796
3.4. Relationship between the quality of studies and behaviour change techniques (BCTs) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799

* Corresponding author at: Interdisciplinary School of Health Sciences, University of Ottawa, 200 Lees Avenue E250G, Ottawa, K1N 6N5, Canada.
E-mail address: lpilutti@uottawa.ca (L.A. Pilutti).

https://doi.org/10.1016/j.pec.2019.10.022
0738-3991/© 2019 Elsevier B.V. All rights reserved.
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803 789

4. Discussion and conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799

4.1. Discussion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799
4.1.1. The use of theories and Behaviour Change Techniques (BCTs) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 799
4.1.2. Characteristics of the included studies and interventions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 800
4.1.3. Strengths and limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 800
4.2. Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801
4.3. Practice implications . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801
Funding . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801
Statement of authors’ contribution . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801
Acknowledgements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 801

1. Introduction anxiety management, and increased confidence in managing

Chronic neurological conditions (CNCs) are a group of disabling
conditions characterized by irreversible damage to the central
nervous system, resulting in life-long effects for the individual and
those around them [1]. CNCs include: “i) sudden onset conditions
(e.g., acquired brain injury of any cause (including stroke) and
spinal cord injury); ii) intermittent conditions (e.g., epilepsy); iii)
progressive conditions (e.g., multiple sclerosis (MS), Parkinson’s
disease (PD), and other neurodegenerative disorders); and iv)
stable conditions with/without age-related degeneration (e.g.,
polio or cerebral palsy)” [1]. Global estimates suggest that up to
one billion people, nearly one in six of the world’s population, are
currently living with a CNC [2]. The CNCs with the highest global
prevalence include acquired brain injury, Alzheimer’s disease and
other dementias, MS, PD, and epilepsy [3].
Collectively, CNCs present with diverse and complex symptoms,
including physical deficits, cognitive impairments, and psycholog-
ical problems [4,5]. The resulting disability can have a profound
effect on overall wellbeing and ability to manage associated life
roles (e.g., employment). For instance, studies have reported that
physical disability, fatigue, and psychological and cognitive issues
contribute to unemployment rates as high as 70% in MS [6,7].
Others have reported that the progressive worsening of motor and
non-motor symptoms of PD reduces the ability to perform
occupational and social roles [8].
Consequently, family members often become involved in
providing complex care to adults with CNCs living at home
[9,10]. Family caregiving can be a fulfilling and enriching
experience [11]. However, providing on-going assistance to people
living with CNCs can also adversely affect the health and wellbeing
of caregivers [12]. For instance, caregivers of people with PD have
reported clinically significant physical and psychological comor-
bidities at similar rates to their care-recipients [13]. Other studies
have shown higher depression rates among caregivers of people
with stroke in comparison with their care-recipients [14]. Poor
caregiver wellbeing, in turn, affects the ability to provide adequate
support, and is further associated with increased rates of
institutionalization of people living with CNCs [15,16]. Important-
ly, these findings have been observed across most CNCs, and they
demonstrate that health outcomes of caregivers and care-
recipients are often inter-related. The awareness of the reciprocal
effects of CNCs on the health and wellbeing of both partners has
informed the development of dyadic health interventions across a
range of settings and conditions. Given that most adverse health
outcomes can be prevented or delayed by altering one or several
health behaviours [17,18], dyadic health interventions have
typically focused on empowering partners affected by CNCs to
make healthier lifestyle choices.
A meta-analysis by Martire and colleagues [19] supports the
potential of dyadic health interventions for people with chronic
diseases. According to the authors, dyadic health interventions led
to improved use of coping strategies, particularly stress and
changes caused by the disease. The authors also reported
additional benefits relative to relationship functioning in both
partners. However, this review focused on dyads in which the care-
recipient had a physical condition (e.g., osteoarthritis), limiting the
applicability of these findings to dyads with CNCs. In addition, the
review did not provide details of the theoretical frameworks
underpinning the dyadic health interventions. This is an important
limitation given that theoretically-grounded health interventions
tend to be more effective than interventions without a theory base
[20,21].
Dyadic interventions often are situated within the social
ecological model [22]. Although not a theory per se, the social
ecological model is a fundamental framework for organizing our
understanding of the multi-level factors (e.g., individual, dyad,
family, community and social contexts) that interact to shape
health behaviours and outcomes [23–26]. The model supports the
notion that these multi-level factors need to be targeted
simultaneously to ensure sustainable change in health outcomes
[26]. At each level, health behaviour theories/models can provide
the necessary specificity to explain “how, why and when” a
behaviour does or does not occur. This includes identifying key
theoretical constructs (e.g., self-efficacy) that influence the target
behaviour [27]. Health behaviour theories/models also provide
direction for behaviour change techniques (BCTs) that should be
incorporated into interventions [28]. BCTs are the active ingredient
within an intervention designed to alter key theoretical constructs,
which in turn result in behaviour change [29]. Identifying BCTs that
are linked to theory will allow dyadic health interventions for
people affected by CNCs to use the most effective techniques for
behaviour change. Given the state of the science on dyadic health
interventions for CNCs, identifying the theories and BCTs in
existing research is an important first step.
1.1. Aims and objectives
This systematic review assessed level of theory application and
use of BCTs in dyadic health interventions for CNCs. Overall, this
information will help to inform the development of future
theoretically-grounded, dyadic health interventions for CNCs.
2. Materials and methods
This protocol was registered in the PROSPERO database
(CRD42019117333). We used the Preferred Reporting Items for
Systematic Reviews and Meta-Analyses (PRISMA) checklist [30] to
guide the reporting of this review. The PRISMA checklist is a
27-item (and a 4-item flowchart) measure of overall reporting of
systematic reviews, with content pertaining to title, abstract,
methods, results, discussion and funding. We chose this in-
strument as it is widely used and accepted as the standard for
reporting systematic reviews of experimental and observational
studies [31].
790 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803
2.1. Search strategy and selection
A systematic literature search was conducted using the
following five databases: MEDLINE, PsycINFO, EMBASE, CINAHL,
and Web of Science from inception to January 2019. Relevant
search terms were categorized into five distinct themes: CNCs;
health promotion; dyad; family caregivers; and interventions.
Search strategies were established in consultation with a health
sciences librarian. Searches were limited to full text articles
published in English. An example of a search using MEDLINE is
given in Supplementary Material 1. Subsequent to the electronic
searches, the reference lists of relevant systematic reviews and
meta-analysis were hand searched for additional articles.
2.2. Eligibility criteria
Articles that focused on community-dwelling dyads (18 years
old) consisting of one partner with a CNC [1] and a family caregiver
were included. Family caregivers were any family member or
friend who provided unpaid care, support or assistance to a person
with a CNC [32]. As such, family caregivers could be biologically
related to the person with a CNC (e.g., sibling, child, parent, etc.) or
related by acquisition (e.g., spouse, partner, friend, etc.). Articles
were included if they involved interventions aimed at enhancing
any of the six dimensions of health identified by Pender et al [33]
(i.e., stress management, physical activity, nutrition, health
responsibility, interpersonal relations/support, and self-actuali-
zation) and reported behavioural or health outcomes for both
partners. Interventions could be delivered by any mode (e.g., face-
to-face, telephone, or online), and for any duration and dose. We
considered interventions that utilized a variety of approaches
including, but not limited to, counselling, cognitive behavioural
strategies, mindfulness, teaching behavioural skills, or any
combination of these strategies. No studies were excluded based
on the approach used in the interventions. We excluded meta-
analyses, systematic reviews, case reports, opinion pieces,
editorials, commentaries, conference proceedings, and thesis
dissertations. We also excluded animal studies, studies in which
the intervention was primarily medical (e.g., surgery or pharma-
ceutical), studies that did not include a dyadic intervention, or that
did not provide data for both partners.
2.3. Screening process
We used Covidence online systematic review software (Veritas
Health Innovation Ltd, Melbourne, Australia) to export, track,
deduplicate, and manage the references from the electronic
searches. One reviewer (AF) ran the initial search, merged the
results into Covidence. A two-stage screening process was used to
select the final papers to include in this review. Studies were first
reviewed by title/abstract by one reviewer (AF) with a focus on
retaining as many papers as possible. Therefore, any ambiguous
papers were retained for the next level of review. For example, if a
title appeared to meet the inclusion criteria but there was no
abstract, the paper was retained until the criteria could be applied
to the full paper. In the second stage, full text records were
reviewed once again using the eligibility criteria. Agreement of two
reviewers (AF and JC) was required for inclusion of the article at
this stage, resulting in 100% inter-reviewer agreement.
2.4. Data extraction
Data were extracted using a standardized data extraction
template adapted from Cochrane Collaboration [34]. The following
data were extracted: a) general study information (i.e., author/
year/country, objective/aim, design, and sample size); b)
participant characteristics (i.e., age and gender, type of CNC,
disease duration and caregiver relationship to care-recipient); c)
intervention characteristics (i.e., type, duration, and delivery
format). Based on the intervention descriptions, we grouped
interventions by type of components and level of partner
involvement using methods reported in previous systematic
reviews [35,36]. Specifically, intervention components were
grouped as: education, coaching/counselling, or support. Education
components were defined as information related to CNCs, its
management, or prevention of comorbidities. Coaching/counsel-
ling components were defined as specific verbal or written
guidance during the intervention to improve skills and confidence
in engaging in targeted health behaviours. Support components
were defined as actual instrumental or informational support
during the intervention (e.g., additional support for troubleshoot-
ing issues with intervention materials) or referral to ancillary
support resources or services [35]. The level of partner involve-
ment was categorized as: partner-assist or active involvement.
Partner-assist was defined as involving the partner in a supportive
role to provide assistance to enable the care-recipient to carry out
intervention activities. On the other hand, active involvement was
defined as targeting both partners as active participants (e.g., by
addressing both partners’ needs and goals, and enhancing dyadic
functioning) [36].
We also extracted information on key study outcomes and
statistical methods used to analyse changes in outcomes in the
included studies. For ease of presentation, we grouped the
outcomes into five broad categories using a combination of Wilson
and Cleary’s [37] and Ferrans et al.’s [38] classification system for
biomedical and health-related quality of life outcomes. These
categories include: biological function (i.e., focusing on the function
of cells, organs and organ systems); symptoms (i.e., physical,
emotional, and cognitive symptoms); general perceptions of health
(i.e., subjective rating of general health including perceptions of
general medical and mental health services use); functional status
(i.e., physical, psychological, social and role functioning); quality of
life (i.e., summary measure of quality of life); and modifiable
characteristics of the individual and environment.
The included articles were also scrutinized for information
about theoretical frameworks (i.e., name of theory and constructs
targeted, and measured as study outcomes). Based on the
description provided in the studies, we evaluated for the level of
theory using the framework set out by Davies et al., [39]. This
framework was chosen due to its accessibility and usability.
According to the framework, studies were classified as: i) explicitly
theory-based (i.e., the authors explicitly stated a theory/model, and
used one or more constructs of the theory to develop study
hypotheses); ii) having some conceptual basis (i.e., some theoretical
framework or model was judged to be used within the study, but
the authors did not include any hypotheses deduced from the
theory in the study design); or iii) using individual theoretical
constructs (i.e., one or more constructs, were applied, but the
authors did not position them within a specific theoretical
framework). Finally, we extracted information on the BCTs within
the included studies (i.e., name and description), using Michie’s v1
BCT Taxonomy [29]. This rigorously developed and validated
taxonomy consists of clear definitions of 93 different BCTs, divided
into 16 different hierarchies, and has become the standard for
classifying and reporting BCTs in health behaviour change
literature [40].
2.5. Quality assessment
The quality of each study was determined using the Physio-
therapy Evidence Database (PEDro) scale [41] for randomized
control trials (RCTs) and the Downs and Black checklist for non-
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RCTs [42]. As recommended by the PEDro Scale scoring guidelines,
item 1 was not included when computing the overall score;
resulting in a total score out of 10 instead of 11. The Downs and
Black scale has a maximum possible score of 28 points. For both
scales, a higher score is indicative of better methodological quality.
An exploratory analysis of the relationship between study quality
and the use of BCTs was carried out.
2.6. Data extraction, coding and quality assessment processes
Two independent reviewers completed the data extraction and
quality assessment (AF and JC), as well as the theory and BCT coding
(AF and AJW). Importantly, the two reviewers involved in the theory
and BCT coding process completed the BCT Taxonomy v1 Online
Training prior to the study to ensure adequate knowledge and
understanding of the taxonomy. The two reviewers independently
extracted data, coded the intervention descriptions and carried out
quality assessment in five randomly selected studies. Then, they
compared results, and discussed and clarified any ambiguity in the
data extraction, coding or quality assessment processes. The data
extraction, coding and quality assessment for the remaining
interventions were then conducted independently. The two
reviewers had a consensus meeting to resolve any discrepancy after
completing data extraction and quality assessment for all the
remaining studies. Given the level of complexity involved in the
theory and BCTs coding processes, the two reviewers discussed the
identified theory and BCTs after every five articles to ensure
consistent coding. Any discrepancies were resolved (e.g., when
the two reviewers coded a theory or BCT differently or when a theory
or BCT was coded by only one reviewer) by referring back to the
framework or taxonomy and a final decision was made.
2.7. Data synthesis
Data synthesis was performed using Microsoft Excel (Microsoft
Office, 2016) and IBM SPSS Statistics for Windows, Version 25.0 (IBM
Corp, Armonk, NY). Descriptive statistics (e.g., frequencies, means,
Fig. 1. Flow diagram of the study selection process.
791
and standard deviations [SD]) were used to report on study
characteristics, outcomes and statistical methods of analyses. The
total number and percentage of studies reporting a theory, and those
classified as explicitly theory-based, some conceptual basis or
individual theoretical constructs were calculated using descriptive
statistics. Chi-square analysis was used to determine the relationship
between type of CNC (i.e., sudden-onset vs. progressive) and level of
theory application. The total, mean, SD, and percentage use of BCTs
(i.e., number of BCTs reported vs. 93 BCTs in the taxonomy), as well as
the percentage use of each BCT hierarchy (i.e., number of hierarchies
reported vs. 16 hierarchies in the taxonomy), were calculated using
descriptive statistics. One-way analysis of variance (ANOVA) was
conducted to determine the difference in mean number of BCTs
implemented across the studies in each level of theory application.
Independent t-tests were used to calculate the difference in mean
number of BCTs between sudden-onset vs. progressive CNCs. The
inter-coder agreement in the coding of theory and BCT, as well as
quality assessment processes were calculated using percentage
agreement and Cohen's Kappa [43]. Bivariate Pearson’s correlation
coefficients were calculated to examine the relationship between
study quality and number of BCTs used. Statistical significance was
set at p < 0.05.
3. Results
After deduplication, 4361 articles were identified through
database and supplementary searches. The PRISMA flow diagram
in Fig. 1 outlines the study selection process. Articles reporting data
from the same study at different time points were considered
together. Consequently, 27 distinct intervention studies reported
in 33 articles were included in the review. In the description that
follows, data are presented as n, % and mean (SD).
3.1. Description of included studies and participants
The characteristics of the included studies are summarized in
Table 1. The studies were predominantly carried out in North
792 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803

Table 1
Description of included studies.

Ref. (quality) CNC Disease duration Sample Age, Mean
SD Gender Relationship to care-recipient
size (M:F)

RCTs (n = 16)
Backhaus 2010 PEDro = 5 ABI <3 - 12 months CRs: 10 CRs: 43
13.14 CGs: CRs: 7:3 CGs: 2:8 Spouse: 7 Parent: 2 Sibling: 1
CGs:10 46.4
9.85
Graff 2006; 2007 PEDro = 8 Dementia NR CRs: 68 CRs: 79.1
6.2 CGs: CRs: 29:39 CGs: Spouse: 41 Child: 22 Others: 5
CGs: 68 66.0
15.3 22:46
Johnston 2007 PEDro = 8 Stroke  2 weeks of CRs: 103 CRs: 68.96
12.64 CGs: CRs: 63:40 CGs: NR
hospital discharge CGs: 82 62.51
14.63 27:48
Kim 2013 PEDro = 7 Stroke 3.7 (1 – 12) months CRs: 18 CRs: 67.4
7.3 CGs: CRs: 13:5 CGs: NR Spouse: 12 Child: 4 Hired Help: 2
CGs: 18 49.8
14.8
Laakkonen 2016 PEDro = 7 Dementia Early stage CRs: 67 CRs: 77.3
6.2 CGs: CRs: 42:25 CGs: Spouse: 67
CGs: 67 75.9
5.7 24:43
Logsdon 2010 PEDro = 6 Dementia Early stage CRs: 96 CRs: 77.1
8.2 CGs: CRs: 50:46 CGs: Spouse: 68 Child: 8 Sibling: 3 Other
CGs: 96 70.5
12.6 27:57 Relative: 2 Friend: 3
Lowery 2013 PEDro = 8 Dementia  2years after CRs: 67 CRs: 79
6.8 CGs: CRs: 32:35 CGs: Spouse: 42
diagnosis CGs: 67 65.4
14.9 17:50
Ostwald 2013 PEDro = 8 Stroke  12 months after CRs: 79 CRs: 67
9 CGs: CRs: 55:25 CGs: Spouse: 79
diagnosis CGs: 79 63.6
11 25:55
Prick 2015, 2016, 2017 Dementia NR CRs: 57 CRs: 76
7.6 CGs: CRs: 31:26 CGs: Spouse: 50 Child & Other: 7
PEDro = 7 CGs: 57 72
10.1 19:38
Robinson-Smith 2016 Stroke  2 weeks of CRs: 5 CRs: 65.2
14.9 CGs: CRs: 3:2 CGs: 3:2 NR
PEDro = 4 hospital admission CGs: 5 65.4
15
Schmitter-Edgecombe 2014 AD NR CRs: 27 CRs: 73
7.1 CGs: CRs: 7:16 CGs: 7:16 Spouse: 16 Child: 5 Friend: 6
PEDro = 6 CGs: 27 65.4
9.8
Schulz 2009 PEDro = 8 SCI  12 months CGs: 57 CRs: 53.4
12.7 CGs: CRs: 41:16 CGs: 9:48 Spouse: 38 Parent: 2 Child: 3
CRs: 57 50.7
14.3 Others: 14
Sturkenboom 2014 PD 6 (4 –10) years CRs: 124 CRs: 71 (633–76)† CGs: CRs: 78:46 CGs: Spouse: 103
PEDro = 7 CGs: 117 67 (57–73) 37:80
Tielemans 2015 PEDro = 8 Stroke 15.6 months CRs: 58 CRs: 55.2
8.9 CGs: CRs: 26:32 CGs: NR
CGs: 28 57.2
7.8 14:14
vanGroenestijn 2015 ALS NR CRs: 6 CRS: 57.4
50.9 CGs: M: 6* Spouse: 4
PEDro = 8 CGs: 4 57.3
46.2
Whitlatch 2017 PEDro = 6 Dementia Early stage CRs: 84 CRs: 72.8
9.3 CGs: CRs: 40:44 CGs: Spouse: 65 Child: 15 Other
CGs: 84 67
11.8 27:57 Relative: 4
Non-RCTs (n = 11)
Banningh 2008, 2011a, 2013, MCI NR 2008 CRs: 2008 CRs: 68.7
7.9 2008 CRs: 10:13 CGs: 2008 Spouse: 21 Sibling: 1 Close
2011b D & B = 20 23 CGs:23 CGs:70.4
6.8 11:12 Friend: 1
2011a, 2011a, 2013 CRs: 70.5
7 2011a, 2013 CRs: 2011a, 2013 Spouse: 53 Child/
2013 CRs: CGs: 69.4
8.2 34:29 CGs: 22:36 Sibling: 5
63 CGs: 58
2011b 2011b 69.9
7.3* 2011b 27:20* 2011b NR
CRs: 47
CGs: 47
Cash 2016 D & B = 18 PD NR CRs: 34 65.6
7.6* 53.8% 46.2%* NR
CGs: 18
Chew 2015 D & B = 14 Dementia NR 55* 79
6.3* 30:25* NR
Kreutzer 2010 D & B = 13 ABI 2.5 (1-15) years CRs: 76 CRs: 43.2
4.8 CGS: CRs: 46:30 CGs: Spouse: 39 Parent: 26 Others: 11
CGs: 76 50.9
3.4 23:53
Lu 2013 D & B = 15 MCI NR CRs: 12 CRs: 69.2
8 CGs: CRs: 7:3 CGs: 3:7 NR
CGs: 12 66
10.6
Nelson 2011 D & B = 14 PD NR CRs: 13 CRs: 73.8z CGs: 73.4z CRs: 13:0 CGs: 0:7 Spouse: 7
CGs: 7
Paller 2015 D & B = 13 Dementia, NR CRs: 17 CRs: 72z CGs: 62.5z CRs: 12:5 CGs: 4:16 Spouse: 13 Child: 6 Parent: 1
Stroke, & MCI CGs: 20
Stockwell-Smith 2018 D & Dementia Early stage CRs: 45 CRs: 77.2
7.7 CGs: CRs: 30:14 CGs: 7:37 Spouse: 32 Child: 6 Others:7
B = 18 CGs: 45 68.9
10.9
Terrill 2018 D & B = 15 Stroke 2.9 years CRs: 11 CRs: 56
18.1 CGs: CRs: 5:6 CGs: 6:5 Spouse: 11
CGs: 11 55.9
16.6
Ward 2016 D & B = 15 Stroke NR CRs: 48 CRs: 66
11.6 CGs: CRs: 31:17 CGs: 7:27 NR
CGs: 34 62.8
15
Williams 2018 D & B = 13 Dementia Early stage CRs: 24 CRs: 80.3
7 CGs: CRs: 11:5 CGs: 5:11 Spouse: 16
CGs: 24 77.4
9.6

RCT – Randomized control trial; non-RCT – non-randomized control trial; NR – not reported; M:F – male : female, CR – care-recipient; CG – caregiver; SD – standard deviation;
ABI – Acquired brain injury; AD – Alzheimer’s disease; ALS – Amyotrophic lateral sclerosis; MCI – Mild cognitive impairment; PD – Parkinson’s disease; SCI – spinal cord
injury; D&B – Downs and Black Scale.
†
Median (IQR) reported.
*
not separated by CR or CG status.
z
SD not reported.

America (n = 14, 52%) [44–57] and Europe (n = 9, 33%) [58–72]. Two progressive CNCs, including Alzheimer’s disease/dementia
studies each were carried out in Asia [73,74] and in Australia [46,47,50,52,55,56,58–62,64–69,73,75], PD [45,48,70] and amyo-
[75,76]. Most of the studies were published within the last 10 trophic lateral sclerosis [72]. The other studies (n = 10, 37%)
years. Of the 27 studies, 17 (63%) targeted dyads affected by targeted dyads affected by sudden-onset conditions, including
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803 793

stroke [49,51,54,63,71,74,76], acute brain injury [44,57], and spinal
cord injury [53].
Across the studies, the sample size of care-recipients ranged
between 5 [52] and 124 [70], while the sample size of caregivers
ranged between 4 [72] and 117 [70]. The mean age of the care-
recipients ranged between 43 [44,57] and 80 [56] years, while the
mean age of the caregivers ranged between 46 [44] and 77 [56]
years. Of the 27 studies, eight studies did not identify the
relationship between caregivers and care-recipients
[45,47,51,59,63,71,73,76], five studies included only spouse/
partner dyads [48,49,54,65,72], and 16 studies included mixed
dyads, predominantly spouse and adult child dyads.
3.2. Description of interventions, outcomes and methods of data
analysis
Table 2 summarizes the intervention characteristics, outcomes
and methods of data analysis. As shown in the table, most of the
interventions (n = 14, 52%) included a combination of education
and coaching/counselling components and were delivered face-to-
face (n = 22, 82%). Four studies used a mixed mode of delivery (i.e.,
face-to-face and telephone [53,63], face-to-face and postal mail
[49]) or workbook and telephone [54]. Only one intervention was
delivered online [74]. Most interventions involved 10 sessions;
however, the number of sessions ranged between five [57,63] and
20 [52], and session-length varied between 15 [74] and 240 min
[65].
Dyads were involved in the intervention in one of two ways:
partner-assist or active involvement. In the first method, which
was used in five studies (23%), care-recipients were the primary
focus of the intervention, and caregivers played a supportive role,
providing assistance to enable the care-recipient carry out
intervention activities [47,48,63,66,74]. The second method, used
in the remaining 22 studies, involved both caregivers and care-
recipients as active participants (e.g., by addressing both partners’
needs and goals, and enhancing dyadic functioning). In four of
these studies, caregivers and care-recipients participated in
separate sessions and received individually tailored intervention

Table 2
Description of interventions.

Ref. Main Intervention Components Partner involvement Methods used to Intervention outcomes
analyze changes in
Session Intervention Delivery Care-recipient Caregiver
outcomes
duration duration mode

Education
Kim 2013 15-20min 9 weekly Online Partner-assist - CG Mann–Whitney U- " regular exercise, fruit and "CG mastery*
sessions had access to the tests and Chi- vegetable consumption, sense
same online square tests of control and health
program and motivation*;
supported the $ medication adherence,
lifestyle changes of smoking, alcohol
the CR consumption, or blood
chemistry,
Robinson- NR 6 weeks Face to face Active participation Repeated measured " coping, quality of life, and " positive coping*;
Smith 2016 –joint sessions with ANOVA depression* $ total coping or depression
the same
information, &
intervention
materials
Chew 2015 3hrs 8 weekly Face to face Active participation Wilcoxon signed- " demands of care and social $ CG burden,
sessions - addressed CG and rank test and impact, confidence and
CRs individually set Spearman rank control over the situation,
goals correlation executive visual attention and
coefficients task switching*;
$ Cognition, function or
quality of life.
Lowery 2013 12 NR Face to face Partner assist - ANCOVA and $ behavioural or " CG burden; $ mental health
sessions program was Binary logistic psychological symptoms of or distress
tailored to the CRs regression dementia
abilities
Lu 2013 55- Bi-weekly Face to face Partner-assist - CGs Cohen’s d measure " meaningful activity " CG burden, perception of
70min sessions provided support to of effect size performance and satisfaction, CRs' awareness of functional
over 12 the CRs to carry out awareness of functional ability
weeks intervention ability, satisfaction with
strategies communication, physical
function, cognitive function
and verbal fluency,
depression, general health,
and quality of life;
# perceived family support
Paller 2015 90min 8 weekly Face to face Active participation MANOVA and " quality of life, depression," quality of life and
sessions –joint sessions with paired sample and executive visual depression; $ sleep quality,
the same t tests attention*; anxiety, executive visual
information, & $ sleep quality, anxiety, taskattention, task switching,
intervention switching or cognitive cognitive function, extent of
materials function CR behaviour and CG distress,
activities of daily living or CG
health
Terrill 2018 NR 8 weeks Workbook Active participation descriptive Recruitment and enrollment rates were adequate, retention
and - individual and joint statistics were used was excellent, high perceived benefit, positive effects, and
telephone activities without methods of satisfaction with the intervention across all participants
inference
794 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803

Table 2 (Continued)
Ref. Main Intervention Components Partner involvement Methods used to Intervention outcomes
analyze changes in
Session Intervention Delivery Care-recipient Caregiver
outcomes
duration duration mode

Education and Coaching/counseling

Backhaus 2010 2 hrs 12 weeks Face to face Active participation ANCOVA and paired " self-efficacy*, $ " self-efficacy*,
–joint sessions with sample psychological distress $ psychological distress
the same t tests
information, &
intervention
materials
Banningh 2008/ 2 hrs 10 weeks Face to face Active participation multivariate 2008 2008
2011a,b/ 2013 – individual and repeated measure " acceptance of memory " alertness of CRs' memory
joint sessions analysis problems, satisfaction with problems*;
(linear mixed partner relationship, and $ burden, distress, general
model) report of less memory wellbeing, acceptance,
problems*; helplessness, or satisfaction
$ cognition, distress, general with the partner relationship
wellbeing, or helplessness
2011a/2013 2011a/2013
" acceptance of memory $ sense of competence,
problems*; distress, general well-being,
$ distress or general acceptance, helplessness,
wellbeing awareness of CRs' memory,
mood, and behavioural
problems, or extent CGs are
affected by the observed
behavioral problems
2011b 2011b
" acceptance of memory " sense of competence;
problems maintained; insight # helplessness and wellbeing
into cognitive decline; #
helplessness and wellbeing
Cash 2016 90 min and 9 weeks Face to face Active participation repeated measures " depression symptoms, " mindfulness*
1
/2 day –joint sessions with ANOVA and one- mental flexibility and
retreat for the same way ANOVA semantic fluency, complex
4hrs information, & attention and sequencing
intervention ability, emotional functioning,
materials and cognitive functioning*
Graff 2006/ 1hr 10 weeks Face to face Active participation ANCOVA " function in daily life, quality " sense of competence, quality
2007 – individual and of life, health status and of life, health status, mood and
joint sessions mood* sense of control*;
$ positive or negative affect
Johnston 2007 NR 5 weeks Face to face Partner-assist – CG One-way ANOVA " recovery from disability, $ distress, perceived control
& provided support to and repeated confidence in recovery*;
telephone the CR to carry out measures ANOVA $ distress, satisfaction with
intervention care, or perceived control
strategies
Nelson 2011 1.5-2 hrs 6 weeks Face to face Partner-assist - CGs Friedman’s analysis # fatigue*; $ quality of life, self-efficacy, depression, pain,
provided support to of variance exercise, or self-rated health status
the CRs to carry out (analysis was combined for CRs & CGs)
intervention
strategies
Prick 2015/ 1hr 12 weeks Face to face Active participation Generalized " attention*; # depression, and general
2016/2017 – individual and estimating # depression, behavioural health*
joint goals equations problems*;
addressed $ mood, physical health,
memory or executive function
1
Schmitter- /2 day 12 months Face to face Active participation ANCOVA and " performance based $ coping, quality of life or
Edgecombe workshop; – joint sessions with ANOVA measures of everyday depressive symptoms
2014 2 hr bi- the same functioning (medication
weekly information, & management & bill paying)
sessions intervention and memory)*;
materials $ questionnaire based
measures of everyday
functioning (activities of daily
living) quality of life,
depression, or coping
Stockwell- 60-90min 7 sessions Face to face Active participation MANCOVA " service uptake (support " service uptake (support
Smith 2018 – individual and group, and education/ group, and education/
joint sessions information services only); information services only);
$ other dimensions of service $ other dimensions of service
uptake or self-efficacy uptake or self-efficacy
Sturkenboom 45-60 min 10-16 Face to face Active participation Repeated measure " performance on prioritized " Quality of life*;
2014 sessions over – individual and analysis activities, satisfaction with $ burden, amount of care,
12 weeks joint goals (linear mixed performance on prioritized proactive coping skills, or
addressed model) activities*; depression
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803 795

Table 2 (Continued)
Ref. Main Intervention Components Partner involvement Methods used to Intervention outcomes
analyze changes in
Session Intervention Delivery Care-recipient Caregiver
outcomes
duration duration mode

$ fatigue, proactive coping

skills, mood, health related
quality of life or overall quality
of life
Ward 2016 2-3hrs 12 weeks Face to face Active participation Repeated measure " depression, post- treatment " depression, anxiety and CG
– individual and analysis and at 1-month*; $ burden at 1-month and 6-
joint sessions (linear mixed depression at 6-months; months*;
model) " anxiety at 1-month*; $ post-treatment
$ anxiety post-treatment or
6-months
Whitlatch 2017 40-195 min 6 weeks Face to face Active participation Paired samples t- " IADLs, PADLs, and " reports of service use, dyadic
– individual and tests socioemotional tasks assigned relationship functioning*; $
joint sessions to the caregiver*; reports of affect
" IADLs and socioemotional
tasks assigned to family
members or friends, and IADLs
and PADLs tasks assigned to
service providers*;
$ reports of affect
Williams 2018 Weekly 10 weeks Face to face Active participation Repeated Measures " ratio of social to unsocial " ratio of disabling to
sessions – individual and ANCOVA and communication* facilitative behaviours;
joint sessions MANCOVA disabling communication*;
$ facilitative behaviour
Coaching/counseling and Support
Logsdon 2010 90min 9 weekly Face to face Active participation Multivariate " overall quality of life, $ overall quality of life
sessions – individual and general linear depression scores*
joint sessions models $ health-related quality of life
Laakkonen 4hrs 8 weekly Face to face Active participation Generalized " Cognition at 9 months*; " quality of life (physical
2016 sessions - individual sessions estimating $ Quality of life or use and component) at 3 months;
(CRs and CGs equations costs of health and social $ quality of life (physical or
received the services. mental component), sense of
intervention competence, PMS scores at 9
concurrently in months, or use and costs of
separate groups) health and social services at
24 months.
Education, Coaching/counseling and Support
Kreutzer 2010 2 hrs Bi- Face to face Active participation Chi square and 71% rated the program as very 89% rated the program as very
weekly – individual goals Pearson Product- helpful, 85% agreed that their helpful, 92% agreed that their
sessions addressed Moment individual goals were met individual goals were met
over 10 correlational
weeks analyses; Paired
samples t-test; and
repeated measures
mixed-effects
models
Ostwald 2013 70 min 16 visits Face to face & Active participation Repeated measures " health status and cognition*; " health status, cognition;
over 12 mail –joint sessions with analysis with linear $ depression, stress or impact mobilizing family support and
months the same mixed models acquiring social support; $
information, & depression, stress or CG
intervention burden
materials
Schulz 2009 60-90min 12 Face to face & Active participation Multivariate " health symptoms and " depression, burden, health
sessions telephone - individually ANOVA depression only when the symptom, and social
over 6 tailored intervention dyad was used as the unit of integration*
months components analysis*
Tielemans 2015 2 hrs 6 weekly Face to face Active participation Linear mixed $ proactive coping, " proactive coping*;
sessions –joint sessions with modelling participation restriction, $ participation restriction,
and 1 the same general self-efficacy, health general self-efficacy,
booster information, & related quality of life, frequency of and satisfaction
session intervention frequency of and satisfaction with participation in
in week materials with participation in vocational, social and leisure
10 vocational, social and leisure activities, emotional
activities, emotional functioning, or CG burden
functioning, or subjective
wellbeing
vanGroenestijn 1hr 5-10 Face to face Active participation Maximum " mental quality of life*; " mental quality of life and CG
2015 sessions – individual and likelihood $ psychological distress strain*; $ psychological
over 16 joint sessions estimation using distress
weeks linear mixed effects
models

" indicates improvement in outcome measure; # indicates worsening of outcome measure; $ indicates no increase or decrease in outcome, * indicates statistically significant
difference p < 0.05, NR indicates not reported.
796 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803
components [53,57,65,73]. In seven studies, caregivers and care-
recipients participated in joint sessions (both partners together)
and received the same information and intervention materials
[44,45,49–52,71]. The other 11 studies included a combination of
individual (caregiver/care-recipient alone) and joint (both partners
together) sessions/activities [46,54–56,58–62,64,67–70,72,75,76].
Five broad categories of outcomes were identified: symptoms
(e.g., cognition, depression, psychological distress) (n = 23) [44–
54,58–70,72–76]; general health perceptions (e.g., perceptions of
physical health, use and cost of health care services) (n = 10) [47–
49,53,54,58–60,63,64,67–69,71,75]; functional status (e.g., basic
and instrumental activities of daily living, physical function) (n = 9)
[45,47,49,52,61–63,70,71,73]; quality of life (e.g. health-related
quality of life; participation restriction) (n = 17) [45–48,50–
52,54,55,61,62,65,66,70–73,75]; and individual characteristics
(e.g., self-efficacy, motivation, health behaviour) (n = 20)
[44,48,49,51,59,60,63,64,70,71,73–75]. The majority of the studies
included 2 outcome categories (n = 23).
Nearly half of the studies (44%) analyzed changes in outcomes
using various forms of analysis of variance [44,45,48,50–53,61–
63,66,75,77], while seven studies (26%) conducted linear mixed
models analysis [46,65,67–72,76]. The remaining studies used a
combination of other tests including Mann–Whitney U-tests and
Chi-square tests (n = 1) [74], Wilcoxon signed-rank test and
Spearman rank correlation coefficients (n = 1) [73], Cohen’s d
(n = 1) [47], and paired samples t-test (n = 1) [55]. One pilot study
did not use any inferential statistics [54]. One study used a
combination of Chi-square and Pearson product-moment correla-
tional analyses, paired samples t-test, and repeated measures
mixed-effects models [57]. No studies used dyadic analytical
procedures (e.g., Cook and Kenny’s Actor-Partner Interdependent
Model (APIM) [78]).
3.3. Theory/Models and behaviour change techniques
Table 3 provides a summary of the theoretical frameworks and
BCTs used across the studies. Eleven out of 27 studies (41%) stated a
theory/model as the basis for the intervention. Of the 11 studies
that stated a theory/model, three studies used the Stress and Coping
Table 3
Theoretical frameworks, constructs and behaviour change techniques used across studies categorized as explicitly theory-based, using individual theoretical constructs and
having some conceptual basis.
Ref. Theoretical framework
Explicitly-theory based
Nelson 2011 Social Cognitive Theory
Ostwald 2013 Stress and Coping Model
Robinson-Smith 2016 Dyadic Coping Model
Stockwell-Smith 2018 Social Cognitive Theory
Tielemans 2015 Health Action Process Approach and Proactive
Coping Theory
Model [49,51,72], two studies used Bandura’s Social Cognitive
Theory [48,75], three studies used the Prevention Framework [55],
Broaden and Build Theory [54], or Family Systems Theory [57]. The
remaining three studies used a combination of theories: the
Gerontological Theory and Model of Human Occupation [47]; Person-
centered Theory and Theory of Language Function [56]; and Health
Action Process Approach and Proactive Coping Theory [71].
Importantly, the majority of these theoretical frameworks focus
on individual-level characteristics, such as knowledge, beliefs and
attitudes that influence behaviour.
The level of theory application varied across the 27 studies
included in this review. Inter-coder agreement for level of theory
application was 82%, (k = .7), indicating substantial agreement. Six
studies (22%) were classified as explicitly theory-based
[48,49,51,71,72,75]. These studies included a direct measure of
at least one construct from the theory as an outcome. For instance,
Stockwell-Smith and colleagues [75] measured self-efficacy as a
key intervention outcome using the Self-Efficacy Questionnaire
[79]. Five studies (19%) had some conceptual basis [47,54–57], and
16 studies (59%) used individual theoretical constructs without
positioning them within a specific theoretical framework [44–
46,50,52,53,58–70,73,74,76]. Across all studies, theoretical con-
structs ranged from coping as the least common (n = 4) to self-
efficacy as the most common (n = 15). Overall, none of the studies
included in this review targeted all of the relevant theoretical
constructs specified within the theories used. No significant
relationship was found between sudden onset (i.e., stroke,
traumatic brain injury, and spinal cord injury) vs. progressive
categories of CNCs (i.e., Parkinson’s disease, dementia, and
amyotrophic lateral sclerosis) for level of theory application (X2
(2, N = 27) = 2.9, p = 0.23).
Across all studies, 163 BCTs, representing 32 (34%) out of a
possible 93 BCTs listed in the Taxonomy v1, were identified. The
mean number of BCTs per study was 6
3.3, with a range between
two [46] and 17 [71]. There were no significant differences in the
number of BCTs implemented between the sudden-onset and
progressive categories of CNCs (t25 = 0.84, p = 0.41). Additionally,
there was no significant difference in the number of BCTs
implemented in interventions categorized as explicitly theory-
Key theoretical constructs Behaviour change techniques
Self-efficacy 1.1 Goal setting behaviour
Vicarious capability 1.4 Action planning
9.1 Credible source
Coping 1.2 Problem solving
Perceived stress 3.1 Social support unspecified
4.1 Instruction on how to perform behaviour
4.2 Information about antecedents
7.1 Prompts and cues
9.1 Credible source
Self-efficacy 3.3 Social support emotional
Coping 4.1 Instruction on how to perform behaviour
9.1 Credible source
Self-efficacy 1.2 Problem solving
3.1 Social support unspecified
5.1 Information about health consequences
Self-efficacy 1.2 Problem solving
Coping 1.3 Goal setting outcome
Risk perceptions 1.4 Action planning
Outcome expectancies 1.6 Discrepancy between current behaviour and goal
1.7 Review outcome goals
2.3 Self-monitoring of behaviour
2.7 Feedback on outcome of behaviour
3.1 Social support unspecified
3.2 Social support practical
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803 797

Table 3 (Continued)
Ref. Theoretical framework Key theoretical constructs Behaviour change techniques

3.3 Social support emotional

5.1 Information about health consequences
5.2 Salience of consequences
5.3 Information about social and environmental
consequences
6.2 Social comparison
8.1 Behavioural practice/rehearsal
9.1 Credible source
12.5 Adding objects to the environment
vanGroenestijn 2015 Stress and Coping Model Perceived stress 4.1 Instruction on how to perform behaviour
5.1 Information about health consequences 9.1
Credible source
Individual theoretical constructs
Backhaus 2010 NR Self-efficacy 1.2 Problem solving
Perceived stress 4.1 Instruction on how to perform behaviour
4.2 Information about antecedents
Banningh 2008/2011a,b/ 2013 NR Self-efficacy 2.3 Self-monitoring of behaviour
Perceived stress 2.4 Self-monitoring of outcome of behaviour
4.1 Instruction on how to perform behaviour
4.2 Information about antecedents
5.4 Monitoring of emotional consequences
8.1 Behavioural practice
Cash 2016 NR Self-efficacy 4.1 Instruction on how to perform behaviour
4.2 Information about antecedents
8.1 Behavioural practice/rehearsal
8.3 Habit formation
Chew 2015 NR Perceived stress 1.3 Goal setting outcome
2.7 Feedback on outcomes of behaviour
8.1 Behavioural practice
8.3 Habit formation
15.3 Focus on past success
Graff 2006/2007 NR Perceived Competence 1.1 Goal setting outcome
3.2 Social support practical
3.3 Social support emotional
4.1 Instruction on how to perform behaviour
9.1 Credible source
Johnston 2007 NR Self-efficacy 3.1 Social support unspecified
3.3 Social support emotional
4.1 Instruction on how to perform behaviour
5.1 Information about health consequences
8.1 Behavioural practice
15.1 Verbal persuasion about capability
Kim 2013 NR Self-efficacy 2.2 Feedback on behaviour
3.2 Social support practical
4.2 Information about antecedents
9.1 Credible source
Laakkonen 2016 NR Self-efficacy 1.3 Goal setting outcome
3.1 Social support unspecified
3.3 Social support emotional
8.1 Behavioural practice
9.1 Credible source
Logsdon 2010 NR Perceived stress 3.1 Social support unspecified
9.1 Credible source
Lowery 2013 NR Perceived stress 1.4 Action planning
Self-efficacy 2.3 Self-monitoring of behaviour
2.6 Biofeedback
3.1 Social support unspecified
8.1 Behavioural practice/rehearsal
8.7 Graded tasks
9.1 Credible source
Paller 2015 NR Self-efficacy 1.4 Action planning
2.3 Self-monitoring of behaviour
4.1 Instruction on how to perform behaviour
8.1 Behavioural practice/rehearsal
8.3 Habit formation
8.7 Graded tasks
Prick 2015/ 2016/2017 NR Self-efficacy 1.1 Goal setting behaviour
Perceived stress 1.4 Action planning
2.3 Self-monitoring of behaviour
3.1 Social support unspecified
3.2 Social support practical
4.1 Instruction on how to perform behaviour
5.1 Information about health consequences
6.1 Demonstration of behaviour
7.1 Prompts and cues
8.1 Behavioural practice/ rehearsal
8.7 Graded tasks
798 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803

Table 3 (Continued)
Ref. Theoretical framework Key theoretical constructs Behaviour change techniques

9.1 Credible source

12.5 Adding objects to the environment
Schmitter-Edgecombe 2014 NR Self-efficacy 1.2 Problem solving
Vicarious capability 1.3 Goal setting outcome
1.4 Action planning
2.1 Monitoring of behaviour by others without
feedback
2.3 Self-monitoring of behaviour
3.1 Social support unspecified
4.1 Instruction on how to perform behaviour
6.1 Demonstration of behaviour
6.2 Social comparison
8.1 Behavioural practice/rehearsal
9.1 Credible source
Schulz 2009 NR Coping 1.2 Problem solving
3.1 Social support unspecified
4.1 Instruction on how to perform behaviour
5.1 Information about health consequences
8.1 Behavioural practice/rehearsal
9.1 Credible source
Sturkenboom 2014 NR Perceived competence 1.3 Goal setting outcome
1.7 Review outcome goals
4.1 Instruction on how to perform behaviour
9.1 Credible source
Ward 2016 NR Perceived stress 1.2 Problem solving
1.3 Goal setting outcome
1.7 Review outcome
goals
2.3 Self-monitoring of behaviour
8.1 Behavioural practice/rehearsal
9.1 Credible source
12.5 Adding objects to the environment
Some conceptual basis
Lu 2013 Gerontological Theory, and the Model of Human NR 1.1 Goal setting behaviour
Occupation 1.2 Problem solving
1.5 Review behavioural goals
3.1 Social support unspecified
8.1 Behavioural practice/rehearsal
9.1 Credible source
Kreutzer 2010 Family Systems Theory NR 1.1 Goal setting behaviour
1.2 Problem solving
1.3 Goal setting outcome
3.3 Social support emotional
4.1 Instruction on how to perform behaviour
5.3 Information about social and emotional
consequences
8.1 Behavioural practice
9.1 Credible source
Terrill 2018 Broaden and Build Theory NR 1.4 Action planning
1.6 Discrepancy between current behaviour and goal
2.3 Self-monitoring of behaviour
4.1 Instruction on how to perform behaviour
6.1 Demonstration of behaviour
8.1 Behavioural practice/rehearsal
12.5 Adding objects to the environment
Whitlatch 2017 Prevention Framework NR 1.1 Goal setting behaviour
1.3 Goal setting outcome
1.7 Review of outcome goals
4.1 Instruction on how to perform behaviour
5.1 Information about health consequences
6.1 Demonstration of behaviour
9.1 Credible source
12.5 Adding objects to the environment
Williams 2018 Person-centered Theory and Theory of Language NR 1.2 problem solving
Function 4.1 instruction on how to perform behaviour
6.1 Demonstration of behaviour
8.1 Behavioural practice/rehearsal

" indicates improvement in outcome measure; # indicates worsening of outcome measure; $ indicates no increase or decrease in outcome, * indicates statistically significant
difference p < 0.05, NR indicates not reported.
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803
based, having some conceptual basis, and individual theoretical
constructs (F(2,24) = 0.04, p = 0.96). The most commonly used BCTs
across all studies included 9.1. Credible source (18, 67%), 4.1.
Instruction on how to perform the behaviour (17, 63%), and 8.1.
Behavioural practice/rehearsal (16, 59%). At least one BCT was
identified in 10 (62.5%) out of the possible 16 BCT hierarchies. No
BCTs were identified in the following hierarchies: 10. Reward and
threat, 11. Regulation, 13. Identity, 14. Scheduled consequences, 15.
Self-belief, or 16. Covert learning.
3.4. Relationship between the quality of studies and behaviour change
techniques (BCTs)
The overall quality of the 27 studies is presented in Table 1.
Inter-coder agreement for quality assessment was 93%, (.9),
indicating excellent agreement. For the RCTs, the mean PEDro
score was 7.5
2.3, (range: 6-9) with seven studies rated as
excellent, eight rated as good, and one rated as fair. For the non-
RCTs, the mean modified Downs and Black checklist score was
12.1
6.9, (range: 13–21), with four studies rated as good, five
rated as fair, and five rated as poor. Across all the studies, the
common areas of weakness were blinding of participants,
therapists and assessors, and potential for selection and reporting
bias. There was no significant relationship between the study
quality and the number of BCTs used for RCTs (rs = 0.20; p = 0.56) or
non-RCTs (rs = -0.16; p = 0.63).
4. Discussion and conclusion
4.1. Discussion
The primary purpose of this systematic review was to use
reliable classification systems to identify the level of theory
application and behaviour change techniques implemented in
dyadic health interventions targeting people with CNCs and their
caregivers. Twenty-seven studies with 1394 people with CNCs and
1241 caregivers were retrieved and reviewed. Overall, the
interventions were either uninformed by theory or did not report
a theoretical basis. However, all of the interventions utilized at
least two BCTs, particularly techniques related to intervention
implementation, knowledge, and skill development. Given the
wide variability in types of outcomes and measures used across the
studies, the efficacy of dyadic health interventions for CNCs was
not evaluated in relation to the use of theories or BCTs;
nonetheless, future research in this area holds significant potential
for the design of successful interventions. A wide range of
intervention components were included, and these were generally
delivered face-to-face in specialized clinical and community
settings. Below we summarise specific findings and make
recommendations for future work to advance the field of dyadic
health interventions for CNCs.
4.1.1. The use of theories and Behaviour Change Techniques (BCTs)
Despite evidence that theoretically-grounded interventions are
more effective than those without a theory base [20,21], there was
limited reporting of theory in the studies included in this review.
Specifically, more than half of the studies (16, 59%) did not mention
theory, and only 22% were explicitly theory-based. This finding is
comparable to earlier reviews of general health interventions
(23%–36%) [21,39], but lower than more recent reviews of health
interventions for older adults (64%) [80] and those with chronic
physical conditions (72%) [81]. The variability in theory application
across studies may account for poor theoretical descriptions,
rather than a lack of use. Using the framework set out by Davies
et al. [39], unless a theory was specifically mentioned and one or
more constructs of the theory were used to develop study
799
hypotheses, a study could not be coded as explicitly theory-based.
Therefore, it is possible that more studies had an unreported
theoretical basis. For instance, Backhaus et al. [44] did not mention
a theoretical basis for their intervention, yet the intervention
targeted self-efficacy and included a measure of this construct as a
study outcome. This finding supports the need to improve the
reporting of theoretical basis in order to more clearly determine
the role of theory in dyadic health interventions for CNCs, a
recommendation echoed by other researchers [82,83]. Given that
low self-efficacy is a common barrier to initiation and maintenance
of a number of health behaviours among people with chronic
health conditions [84,85] and caregivers [86], it was not surprising
that most studies targeted this construct. Nevertheless, none of
the studies targeted all of the constructs specified within the
theories used, or tested the theory, limiting our understanding of
which theoretical constructs are the strongest predictors of
dyadic health behaviours, or are most important to target in
specific disease contexts. There is therefore an urgent need for
future studies to examine important constructs that can be
targeted in dyadic health interventions for people with CNCs and
their caregivers. Tools such as the Theoretical Domains Framework
and the [87,88] and the Behaviour Change Wheel [89] may provide
a systematic and theoretical basis for such as initiative. Together,
these tools can facilitate a comprehensive assessment of the
factors that are likely to influence dyads’ target behaviour, and
the selection of appropriate intervention options to promote
behaviour change.
It was interesting to note that interventions in this review were
typically informed by theories that aim to alter an individual’s
health behaviour. These studies included tailored intervention
components to support individual needs within the dyadic context.
Although tailoring theories to suit the context is common, by
implementing theories in this manner, researchers are failing to
account for the interdependence and mutuality between care-
recipients and their caregivers [90–92]. Integrating dyadic
processes into these theories (e.g., Howland et al. [93],), or
applying theoretical approaches developed explicitly for dyads
(e.g., Fitzsimons et al. [94],), may help to address this issue. It can
be argued that theory should be chosen based on the behaviour
targeted as well as the level(s) of change [89], and therefore, it is
possible that theories focused at the individual level may still be
appropriate. However, if these theories are being applied in a
dyadic setting, researchers need to carefully consider the impact of
intervention context in the design and evaluation of dyadic
interventions. This is particularly important as nearly all the
studies involved active participation of both partners, providing
individual or joint sessions, and a combination thereof. Amidst
calls for dyadic health interventions to emphasize the interactive
influence of partners in social roles such as caregivers and care-
recipients [95–97], this represents a paradigm shift in conceptual-
ization of such interventions. From early reviews of dyadic health
interventions, which reported caregiver involvement in a support-
ive/assistive capacity without addressing their needs [98], to
several studies in this review that focused on collaboration
between partners. Notably, what is missing in most studies is the
theoretical rationale for providing individual, joint or combined
sessions. It is possible that logistical challenges involved with
trying to recruit and retain dyads required flexibility in imple-
mentation structure for scheduling convenience [99]. Another
possibility is that this strategy allowed for more in-depth tailoring
of the intervention to the unique challenges and issues experi-
enced by caregivers vs. care-recipients, for example, Laakkonen
et al., [65] and vanGorenestijn et al., [72]. These possibilities
highlight the complexity of implementing dyadic health inter-
ventions [99]. Providing a theoretical rationale and evaluating the
implications of targeting the individual, as well as the partnership,
800 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803
hold significant potential for improving the design and implemen-
tation of dyadic health interventions.
On average, six BCTs were reported across the interventions in
this study. The most commonly identified techniques were: 9.1.
Credible source, 4.1. Instruction on how to perform the behaviour,
and 8.1. Behavioural practice/rehearsal. As this is the first review
undertaken in this population, direct comparison with other
studies is difficult. Previous researchers have reported these same
BCTs as those most commonly used in studies targeting self-
management behaviours in individuals with other chronic health
conditions [100–102]. However, BCTs in the following hierarchies:
feedback and monitoring (e.g., self-monitoring), and goals and
planning (e.g. goal setting, problem solving and action planning)
were only identified in about 20–30% of articles within this review.
This is an important finding, as previous studies have emphasized
the importance of self-monitoring and goals and planning for
initiation and maintenance of health behaviours among other
populations (e.g., older adults [80], people with arthritis [103]
spinal cord injuries [101], and cancer survivors [100,104]). For
instance, BCTs related to goals and planning were used in
approximately 50% of the studies targeting people with spinal
cord injuries [101], while self-monitoring was used in more than
60% of the studies targeting cancer survivors [100] and people with
arthritis [103]. This finding suggests that the BCTs with strong
support in health interventions for other populations are not being
applied to the same degree in dyadic health interventions for CNCs.
In addition, these findings highlight a critical opportunity to
develop novel interventions that incorporate under-utilized BCTs
such as 1.7. Review outcome goals, 15.1 Verbal persuasion about
capability, and 15.3. Focus on past success.
Importantly, studies included in this review did not identify
which specific BCTs were targeting which theoretical construct(s)
within the interventions, limiting our understanding of why some
BCTs were selected. Indeed, when the results of both theory
application and use of BCTs were considered together, it appears
that the BCTs may be implicitly incorporated within the
interventions simply due to the intervention design and delivery
mode, rather than by active selection. For instance, interventions in
this review were typically delivered by a licensed health
professional. By nature, such interventions are likely to include
‘instruction from a credible source’, which was the most commonly
identified BCT. Previous studies have shown that some health
professionals do not feel sufficiently trained to optimize BCTs
during intervention delivery [105,106], thus, the lack of certain
evidence-based BCTs is not surprising. The finding suggests the
need for researchers developing complex interventions to provide
appropriate training in BCTs that require resources to deliver,
particularly those associated with ‘goals and planning’. Overall, the
findings underscore a critical opportunity for future dyadic health
interventions to provide a more comprehensive report of the BCTs
used including how, why and when the BCTs were implemented,
and which theoretical constructs were targeted by which BCTs.
Providing this information will improve the knowledge base
regarding theory-based dyadic interventions. Again, the Behaviour
Change Wheel [89] and the BCT Taxonomy v1 [29] can provide a
lens through which various BCTs can be matched to intervention
content for implementing effective change.
4.1.2. Characteristics of the included studies and interventions
Studies in our review focused on people with sudden-onset or
progressive CNCs. No studies included adults with stable or
intermittent conditions. In particular, 75% of the included research
samples (n = 1046) were adults with dementia or stroke. Given the
high prevalence of these conditions [107], this finding is not
surprising. Nonetheless, adults with epilepsy and their caregivers,
for example, also experience symptomatic and functional
limitations, as well as psychological distress and reduced quality
of life [108]. Thus, there is need for studies that include
participants with other common CNCs to help facilitate translation
of dyadic health interventions into practice settings.
Although the studies were conducted within the past 10 years,
the majority of the interventions were delivered through face-to-
face sessions in specialized clinical and community settings. Only
one study was delivered online [74], while three studies used a
combination of technology and other delivery strategies (i.e., face-
to-face or print) [53,54,63]. This finding was unexpected,
considering the technological advancements that have occurred
in the past few decades, and the demonstrated utility of technology
for improving efficiency and reach of health interventions [109].
Technology-based modalities including the Internet and mobile
devices provide exciting opportunities to develop more precisely
tailored interventions to promote behaviour change. For instance,
mobile technologies can be used to ensure active participation for
both members of the dyad by texting health promotion messages
or videos (mHealth) that target specific care-recipient or caregiver
health priorities [109–111]. A disadvantage of telehealth inter-
ventions is that some people with CNCs and their caregivers may
be restricted or require adaptations to use these methods [112].
Even so, given that these groups have cited transportation
difficulties as barriers to accessing health programs and services
[85,111,113], future research should consider innovative and cost-
effective technology-based approaches to promote widespread
dissemination of dyadic health interventions. Several researchers
have repeatedly emphasized the need for health interventions to
reflect the advances in technologies [114,115] and our findings
echo these recommendations.
Finally, none of the studies included in this review used dyadic
analysis (e.g., APIM) [78]. The APIM is a framework for collecting
and analysing dyadic data. This analytical model is based on the
idea that, in an interacting relationship, an individual’s behaviour
is affected not only by his or her own characteristics (actor effects),
but also by the other person’s characteristics (partner effects) and
the individual’s perceptions of that other person. Given that dyads
are non-independent and health behaviours are concordant among
partners [96,116], dyadic analysis would enable researchers to
account for the correlation between partners in their health
behaviour, while treating them as nested within a dyad. Therefore,
such analysis should be considered in future dyadic health
interventions for CNCs to promote increased understanding of
possible actor and partner effects.
4.1.3. Strengths and limitations
To our knowledge, this is the first study to examine theory and
BCTs utilized in dyadic health interventions for CNCs. Further, this
study involved robust and replicable search, screening and coding
procedures, and followed recommendations by Moher and
colleagues [30]. However, this review has several limitations that
warrant consideration.
First, there is a possibility that studies that should have been
included in the review were omitted. We attempted to minimize
this risk by working with a health sciences librarian to generate
broad search terms and utilizing multiple databases. Second, one
reviewer performed the title/abstract screening, thus not having
the possibility to discuss potential disagreement of relevant
studies with a second reviewer. However, at this stage, exclusions
were only made in cases where it was certain that the record did
not meet the a priori defined criteria. All studies mentioning dyadic
interventions related to CNCs were included for full-text screening.
In addition, there is the possibility of selection bias due to lack
of blinding of the reviewers to the research purposes and the
involvement of the first author in data extraction, coding and
quality assessment processes. We attempted to minimize this risk
 A. Fakolade et al. / Patient Education and Counseling 103 (2020) 788–803
by involving separate members of the research team as second
reviewers during each of these processes, which reduces the
possibility of bias from a single reviewer. We also used standard
scales for quality assessment, which are not based on whether or
not a study includes specific theories or BCTs. Therefore, quality
assessment remained independent of theory or BCT use.
The BCTs coding procedures undertaken in this study relied on
the text present in the intervention descriptions from published
protocols and articles, and other supplementary materials. While
this coding procedure is often used in reviews and captures
intervention content reasonably well [117], it is possible that some
BCTs may have been missed due to incomplete intervention
descriptions.
Finally, we are cautious about making definitive recommen-
dations on the most effective theories and BCTs because many of
the interventions (59%) did not report use of a theory, and those
that did, did not apply the theory extensively. Some studies were
also based on multiple theories. Additionally, there was wide
variability in the number of outcomes and types of measures used
across studies (over 70 outcomes across five broad categories).
Together, these factors limit our ability to make conclusions
regarding the impact of theory on the effectiveness of interven-
tions and necessitated the use of a broader approach to summarize
the available evidence. The results of this review, therefore,
represent a first step in broadly synthesizing the existing evidence
to inform future studies on dyadic health interventions for people
with CNCs.
4.2. Conclusion
This review examined how theory and BCTs are applied in
dyadic health interventions for CNCs. Although the field of dyadic
health research is still in its infancy, the take home message for
researchers is clear: the need for conceptually solid, methodologi-
cally rigorous research that provides clear linkages between
theoretical constructs, BCTs and health outcomes is great.
Researchers need to explore, evaluate and implement theoretical
constructs that are most important for achieving the desired
outcomes for both individuals with CNCs and the partnership.
Some of the necessary work also includes building multidisciplin-
ary collaboration and integrating health technologies into inter-
vention design and delivery to provide more sustainable and
disseminable programs.
4.3. Practice implications
Health professionals and researchers need to begin to
incorporate theoretical techniques that truly target both partners
into dyadic health interventions. This will facilitate clear identifi-
cation of intervention strategies that can benefit each individual
and the partnership. Practical tools have been developed to
support this process and should be incorporated in future research.
Funding
Dr. Fakolade’s work on this project was supported by a Multiple
Sclerosis Society of Canada Post-doctoral Fellowship [EGID 3277].
Ms. Walters was supported by a Masters Studentship Award
from the Social Sciences and Humanities Research Council of
Canada.
Statement of authors’ contribution
AF, ALC and LAP were involved in study conceptualization and
design. AF conducted the searches. AF, AJW and JC were involved in
data extraction, analysis and interpretation. AF drafted the
801
manuscript. ALC and LAP critically revised the manuscript for
important intellectual content. All authors read and approved the
final manuscript.
Declaration of Competing Interest
The authors declare no conflicts of interest.
Acknowledgements
Thank you to Karine Fournier (Head, Reference Services –
Health Sciences Library, University of Ottawa) for assistance with
developing and refining the search strategy.
Appendix A. Supplementary data
Supplementary material related to this article can be found,
in the online version, at doi:https://doi.org/10.1016/j.
pec.2019.10.022.
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