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Intimate Relationships and Chronic Illness: A Literature Review for Counsellors and Couple Therapists

Authors:
  • Relationships Australia SA
  • Relationships Australia South Australia

Abstract

Emerging evidence suggests a bi-directional dynamic between chronic illness and intimate relationships. Moreover, the quality of this relationship affects the capacity of the affected person to manage their illness. Literature directed towards health professionals encourages them to incorporate interventions which account for such factors, so that support service users can better manage their illness and treatment program. There are, however, scarce reports to inform counsellors and couple therapists working with this presentation. In this paper, we outline findings from a scoping literature review which explored published reports on the interplay between chronic illness and relationships; how best to develop and evaluate programs which focus on this intersection; and the potential role of counsellors and couple therapists in supporting clients affected by chronic illness.
Intimate Relationships and Chronic Illness: A literature
review for counsellors and couple therapists
pacja.org.au /
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Rebecca M. Gray, PhD, Relationships Australia New South Wales; Toby Newton-John, PhD, University of
Technology Sydney; Jamie Lee, PhD; Claire Ralfs, PhD, Relationships Australia South Australia
Introduction
This paper reports on findings from a scoping literature review conducted on chronic physical illness and intimate
relationships, with a view to presenting a set of clinical implications for counsellors and couple therapists. Of
course, working with counselling and couple therapy clients in ways that account for their physical health and
wellbeing is not a new idea. A Holistic approach, for example, incorporates clients’ physical, emotional,
psychological and spiritual aspects, a concept which has gained increasing momentum in the past twenty years.
Authors have also suggested factoring social relationships into health policy (Umberson & Montez, 2010).
Empirical research for the health sector indicates improved health outcomes for clients, when this multi-factorial
approach is adopted (Anglemyer, Horvath & Rutherford, 2013; Badr & Krebs, 2013; Maller, Townsend, Pryor,
Brown, & St Leger, 2005; McGill & Felton, 2007). Some research, for example, has explored the relationship
between family functioning and health (Garcia-Huidobro, Puschel & Soto, 2012). It is also a recommended
approach when working with culturally diverse communities, such as, refugees (Watters, 2001), migrants
(Ogunsiji, 2009) and people from South East Asian countries (Chou, 2009). When working with Indigenous
communities, both within Australia and internationally, it is considered particularly appropriate, as it aligns with
traditional ways of understanding health and wellbeing, and best clinical practice accordingly (Adrian, 2009;
Couzos & Murray, 2008; Hunter, Logan, Barton & Goulet, 2004). Indeed, the co-involvement of partners and
family members in the care of the affected person is proven to improve health-related outcomes (Myer, et al.,
2014; Remien, et al., 2005).
Despite these advances, the extent to which Australian counsellors and couple therapists are adopting a more
holistic approach is unreported, as is their level of awareness for clients’ physical health issues, and how these
affect their clients’ intimate relationships. In contrast to the health and medical literature, publications which
target counselling and therapy include very little to guide professionals working with clients affected by chronic
physical illness. The need to collate and summarise what is known is pressing. This paper outlines the findings
of our review which informed a three year, multi-state, cross-agency study, and explored the interplay between
relationships and chronic pain, and then relationships and chronic illness more broadly. The findings of the study
were used to develop a set of freely available resources for those with a chronic illness, their partners, and their
counsellors or couple therapists (www.humankind-relationships.com.au). In what follows, we describe the
background to the literature review, review methods and key findings, in order to discuss the potential role of
counsellors and couple therapists working with clients affected by chronic illness.
Background
This review is the product of a three-phase study. Phase One, explored the interplay between chronic pain and
relationship function; Phase Two, explored the interplay between chronic illness and relationship function, more
broadly; and the final phase, explored the relationship dynamics between couples attending RANSW and
affected by chronic pain. This background aims to contextualise our review findings.
Phase One: In 2012, Relationships Australia New South Wales was approached by Dr Toby Newton-John, a
Clinical Psychologist specialising in chronic pain, to collaborate on research about intimate relationships and
chronic pain. Dr. Newton-John has more than twenty years’ experience working in pain clinics and has become
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increasingly interested in the interplay of pain management and intimate relationships, having observed the
dynamics between his clients and their partners. He noted that the clients’ relationship style affects their
treatment adherence.
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue
damage, or experienced in terms of such damage (Merskey & Bogduk, 1994; Treede et al., 2015). Chronic pain
refers to pain that has persisted for longer than three months (Merskey & Bogduk, 1994). This form of pain is
now considered a disease in its own right (Tracey & Bushnell, 2009), rather than just being a symptom of some
other condition, as it is often experienced for many months or years despite attempts to treat it with medications
and other therapies. While the majority of people affected by chronic pain manage their pain, a minority (10%)
are severely affected and even disabled by their condition (Nahin, 2012).
The propensity of the person to manage their pain can be influenced by the style of their intimate relationship
(Leonard, Cano & Johansen, 2006; Meredith, Ownsworth & Strong, 2008). A happy union has been correlated
with improved coping (Taylor, Davis & Zautra, 2013). Moreover, recent research conceptualises pain expressions
as behaviours which aim to elicit empathy and assistance from the caregiver. As such, pain management is
undertaken through communal coping, rather than working with the individual sufferer in isolation (Burns et al.,
2015). Given this correlation, Dr. Newton-John was interested in the prevalence of chronic pain among the
relationship counselling client cohort, as well as the nature of their relationships, and how this is associated with
chronic pain and treatment adherence. In developing this collaborative study, we started with the questions: how
many relationship counselling clients attending RANSW services are affected by chronic pain? And how might
pain specialists and relationships counsellors work together to improve the health and wellbeing of couples
affected by chronic pain?
Phase two: Relationships Australia NSW, with the help of their colleagues at the Relationships Australia National
office, gained funding from Medtronic Philanthropy via their Health Access Grant to support the study. This
funding enabled us to undertake a prevalence survey of relationships counselling clients within New South
Wales. Clients were invited by researchers, over a 12 month period, to take part in a brief telephone
administered study which asked them about their pain levels, and treatment behaviours. Of the 985 who were
invited, 329 took part. Preliminary analysis indicates that Relationships Australia NSW relationships counselling
clients are affected by chronic pain at the same rate, or slightly more often, than the general population (Blyth et
al., 2001). The findings of the prevalence study, and our research methods, will be reported more fully elsewhere
(Ling, Gray, Newton-John & Huntingdon, forthcoming; Newton-John, Gray, Ling, Huntingdon, forthcoming).
More research is needed to establish the interplay between pain and relationship distress, and to verify these
findings. However, the prevalence study provides some evidence of the need for a collaborative approach
between couple therapists and health specialists. The funding body was interested in our findings, and
requested that we expand the study to develop freely available resources to support chronic illness more
generally. To support resource development, Relationships Australia South Australia and Relationships Australia
Victoria were invited to join the NSW team, given their expertise in developing resources for allied health.
At that stage, we conducted a scoping literature review to ascertain published accounts of relationship function
and chronic physical illness to inform resource development. We were able to confirm that, like people living with
chronic pain, chronic illnesses generally present a unique range of challenges, and these challenges are often
mediated by the quality of the person’s intimate relationship. While there is an emerging body of research for
health professionals on these issues, we noted a lack of published research to guide counsellors and couple
therapists. Moreover, preliminary discussions with the Relationships Australia NSW workforce led us to believe
that counsellors who had themselves experienced chronic illness were more likely to note it as a factor with their
clients, but there was less awareness among counsellors who had not experienced a chronic physical illness.
This review, then, outlines the findings that guided this study, and analyses recent published research to
ascertain what is known about the ways in which chronic illness affects relationships, and how relationships
affect the clients’ ability to manage their illness, in order to discuss practice implications for counsellors and
couple therapists.
Method: Scoping Literature Review
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Literature searches were undertaken throughout the overarching studies, that is: 1) the pain prevalence study; 2)
the chronic illness review stage, when developing the Humankind website; and 3) the relationship dynamics
study. Therefore, reviews were periodic, iterative and ongoing. We conducted a search and review during each
phase: to ascertain the knowledge about the topic at hand; to design the research project and inform the ethics
application; to explore emerging themes from client and professional consultation; and to curate the information
for this paper. This article draws upon all these searches, however, focuses primarily on the main scoping
literature review we undertook in development of the website, and aims to provide an overview of current
knowledge.
Unlike a meta-analysis or systematic literature review, which uses a chronological process that aims to
categorise the sourced papers through quality criteria, a scoping literature review, as defined by Arksey &
O’Malley (2005), is an iterative process that usually follows these steps:
1) Identify the research question;
2) Find relevant articles, through the usual means;
3) Select papers that are relevant to the questions;
4) Chart the data, (information on and from the relevant studies);
5) Collate, summarise and report on the results;
6) Consult stakeholders to verify the findings, or provide insights as to what the report failed
to highlight.
We chose this method because we wanted to examine the extent, range and nature of the research activity. It is
particularly useful for mapping fields of study, and for summarising and disseminating research findings for
practitioners and policy makers. In identifying gaps in the existing evidence base, we are also able to generate
some conclusions as to the overall state of the research activity on this particular area (Arksey & O’Malley,
2005). This method is well suited to professionals needing to synthesise knowledge to inform exploratory
research questions aimed at mapping key concepts and, like other literature review methods, identifying gaps in
research (Colquhoun et al., 2014).
A wide and comprehensive search of academic and scientific databases ( Arts & Humanities Citation Index; BMJ
Journals Online; Psychological and Behavioral Sciences Collection; PsycINFO; PubMed; Social Science Citation
Index) was undertaken using the key words: “chronic ill*”; “chronic condition”; “chronic pain”; “chronic disease”;
“intimate”; “partner”; “spouse”; “relationship”; “intervention”; “treatment”; “couple therapy”; “marital therapy”;
“marriage guidance”; and “counsel*”, both singularly and in various combinations. The search was augmented
by reviewing the bibliographies of related articles, and by following the “cited by” reference directions. This
yielded a modest literature from which online abstract and bibliographic information was used to select articles
that met the inclusion criteria of: 1) those published within a 16 year timeframe from 2000 onwards; and 2) those
directly exploring the impact according to one or more of the domains listed above. Key seminal texts meeting
this criterion but published prior to 2000 were also included in this review, where the information was deemed
relevant and pertinent, and not subject to an outdated paradigm.
A Note on Language
Throughout published reports, terms for intimate relationships, such as ‘spouse’ and ‘partner’, are used
interchangeably. We note the heteronormative implications of using ‘spouse’, where marriage equality is
currently denied to people in same sex relationships in Australia and many of the countries where research has
been undertaken, as indicated below. We also note the assumptions placed on binary relationship constellations.
We have adopted the term ‘partner’ throughout, as this does not affect the findings of the review.
Findings
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There are five main areas of published research on chronic physical illness and intimate relationship dynamics,
and these are: 1) the various ways in which health status is affected by intimate relationships; 2) the ways in
which caring for someone with a chronic illness affects the partner; 3) how the style of the intimate relationship
affects the management of a chronic illness; 4) recommendations for potential programs and interventions that
address this issue; and 5) suggestions for future interventions and research.
Theme One: The Interplay of Intimate Relationships and Health Status
Health related research shows that negative aspects of relationship functioning have indirect influences on
health, through depression and compromised health behaviours, and direct influences on physiological
mechanisms, such as, cardiovascular, endocrine and immune function (Martire, Schulz, Helgeson, Small &
Saghafi, 2010). There are particular implications for those individuals living with chronic illness (Kiecolt-Glaser &
Newton, 2001; Martire et al., 2010). For example, relationship strain puts women with heart disease at greater
risk of recurrent coronary events (Orth-Gomer et al., 2000), or increased risk of mortality in end-stage renal
disease (Kimmel et al., 2000). Conversely, relationship quality has been linked to a whole set of positive health
outcomes, such as, lower blood pressure in clients with hypertension (Baker et al., 1999); improved survival rates
for those with congestive heart failure (Rohrbaugh, Shoham & Coyne, 2006), and breast cancer (Weihs, Enright
& Simmens, 2008).
The general quality of the relationship may affect the client’s interpretation of their partner’s behaviours, and
therefore the impact of those behaviours on health (Kiecolt-Glaser & Newton, 2001). Indeed, there are many
factors associated with relationship style and health status, and recurring themes in the research literature
highlights links with gender. In studies of cardiovascular disease, for example, female clients show stronger
linkages between relationship distress and outcomes such as hospital stays or survival rates, than male clients
(Coyne et al., 2001; Kulik & Mahler, 2006). Therefore, it may be useful to examine gender-linked traits, such as
unmitigated agency or communion (Hegeleson & Lepore, 2004) as moderators. Unmitigated agency is a focus
on the self to the exclusion of others, and unmitigated communion is an inclusion of others to the exclusion of the
self, both of which have been connected to poor health behaviour (Hegelson & Fritz, 2000). Including such
considerations could help us to examine this moderator with all diseases, and to include both opposite sex and
same sex couples (Martire, 2013).
Research indicates the detrimental impact of poor relationship function on health and mental health, for women
in particular. Some research exploring levels of agency and communion within couples has shown that
relationship difficulties correlate with problem behaviour related to poor health outcomes. Health status, then, is
connected to relationship function, and so improving intimate relationships has the potential to improve health
and mental health.
Theme Two: How Chronic Illness Affects Intimate Relationships
Chronic illness impacts the partner of the person living with a chronic illness (Schulz et al., 2009). While chronic
illness is known to impact the whole family, including children and extended family members, the partner is
thought to be most affected, and this may influence ‘patient’ adjustment (Merz et al., 2011). For example, partner
support behaviour and relationship satisfaction are moderating effects for diabetes treatment (Schokker, 2010).
Partners often experience poorer psychological wellbeing, decreased satisfaction in their relationship with the
person living with a chronic illness, and burden associated with providing physical assistance (Martire & Schulz,
2011). Indeed, partners’ own physical health and self-care may be compromised over time (Fredman, Betrand,
Martire, Hochberg, & Harris, 2006; Lee, Colditz, Berkman, & Kawachi, 2003; Schulz et al., 2009), relationship
satisfaction is affected (Geisser, Cano, & Leonard, 2005) and intimacy disrupted (Boylstein & Hayes, 2012). Over
and above the physical burden of providing care, the negative effects for the partner make sense in light of the
various other implications of living with chronic illness. Examples include: social and leisure activities are often
curtailed, there can be increased financial burden due to the costs of medical treatment and/or a loss of income
due to the inability to maintain occupational functioning, physical intimacy and sexual activity may cease, sleep
can be disrupted for both parties.
Another unfortunate consequence of an ongoing illness is that the partner ’s ability to be supportive may erode
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over time, and their critical and controlling behaviours may increase (Stephens, Martire, Cremeans-Smith,
Druley, & Wojno, 2006). These findings have been observed across the most common chronic conditions
affecting adults including heart disease, chronic pain, rheumatic disease, cancer and diabetes (Fisher, Chesla,
Skaff, Mullan, & Kanter, 2002; Schmaling & Sher, 2000). A developmental-contextual model provides a
framework for understanding how couples coping with chronic illness may together appraise and cope with
illness, and for determining when partner involvement is beneficial or harmful to both the person living with a
chronic illness and partner adjustment (Berg & Upchurch, 2007).
As such, Martire (2013) suggests developing physical health interventions which account for intimate relationship
dynamics, and suggests identifying and targeting moderators of relationship health linkages. For example, in
some couples, the client’s symptoms have little negative impact on the partner, whereas in other couples the
partner’s emotional wellbeing is essentially a barometer for how the client is feeling. In research conducted on
pain manifestations and relationship dynamics, Cano and Williams (2010) reconceptualise pain as an emotional
disclosure, and suggest that both partners’ distress is implicated in the disclosure and response patterns (Cano,
Leong, Williams, May & Lutz, 2012). More specifically, moderators may tell us who would benefit most from an
intervention. Indeed, individuals with low marital satisfaction may experience greater benefits from an
intervention than those with high levels of relationship satisfaction (Martire, 2013).
Published reports, then, indicate that chronic illness has a negative impact on the well partner. As pointed out by
Martire and colleagues (2010), while there is a known link between partner behaviours and patient illness
management, more rigorous research is needed to understand the partners’ role. Given that the ability of the
carer to care can be eroded over time, it is possible that supporting the carer to manage this work would also be
of benefit to the person living with a chronic illness, as well as the carer themselves. While not all partners will
be adversely affected by their partner’s illness, identifying these cases could enable a more effective and client-
centred response. Research aimed at identifying factors that explain these between-couple differences could be
used to tailor interventions.
Theme Three: How the Style of Intimate Relationships Affect Illness Management
Long-term outcomes, such as recurrent health events, hospitalisations and survival, are also affected by the
quality of the person’s relationship (Kimmel et al., 2000; Orth-Gomer et al., 2000; Rohrbaugh, Shoham, & Coyne,
2006). Other couple characteristics, with consistent effects on the management of chronic illness, include
conflict, criticism, and a lack of congruence between client and partner in disease beliefs and expectations
(Fisher, 2006).
While there is a known link between partner behaviours and client illness management (Johnson et al., 2013),
more research is needed to understand the partners’ role. Johansson and colleagues, for example, provided a
detailed account of couples affected by dementia, and how mealtimes were managed, and how this progressed
over time as the disease worsened (Johansson, Björklund, Sidenvall & Christensson, 2014). More detailed
information like this is needed about what people living with a chronic illness and their partners do, and how this
plays out in clients’ daily lives and practices. Another relatively unexplored factor is parasympathetic activation.
This is when interactions affect heart rate variability (HRV), and is believed to reflect an individual’s efforts to
regulate emotion. Over time, negative interactions may reduce resting HRV, an indicator of self-regulatory
capacity, and increase the risk of cardiovascular morbidity and mortality (Butler, Wilhelm & Gross, 2006).
Authors suggest that associations be studied with repeated measures designs, in which both partners are
assessed daily or throughout the day. This would allow for addressing questions regarding the within-couple
variability. For example, one hypothesis that needs testing: is the client less physically active on days when the
partner is more critical? Or, more physically active? It also extends previous research on couples and chronic
illness that has taken a between-couple approach to analysis. Intensive repeated measurement studies could
reveal the effects of client symptoms on partner mood, support behaviours and physiological responses (Monin
et al., 2010).
Theme Four: Potential Programs and Interventions
An important meta-analysis of couple-oriented interventions for chronic illness found that chronic diseases, such
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as cardiac disease, obesity, and diabetes, which are the leading causes of morbidity and mortality, share
common features, including: being behaviourally driven; influenced by social environment; and negatively
impacting the intimate relationship (Martire, Schulz, Helgeson, Small & Saghafi, 2010). Reflecting these
commonalities, couple oriented behavioural interventions for different conditions share many of the same
features and goals and can, arguably, be evaluated as a group. Reviewed interventions tend to be
multicomponent, with educational and cognitive-behavioural interventions commonly represented. Many went
beyond treating the client and partner as individuals, and included relationship-focused content, such as those
studies which directly explored the effects of relationship functioning on illness management (Martire, et al.,
2010). Associated studies compared couple oriented interventions to usual care or a client-oriented, behavioural
intervention. Meta-analyses of these studies require corroboration, but seem to show that interventions have a
significant but small effect on client depressive symptoms, relationship functioning and pain. There is a lack of
research which includes partner outcomes, but interventions had similar effects despite varying illness
populations and intervention content (Martire, 2013).
In comparison to individual client-oriented approaches, couple interventions may have an advantage in long-term
maintenance of behavioural changes, and addressing the partners’ concerns may protect against the erosion of
their support to the client (Martire, Schulz, Keefe, Rudy & Starz, 2007). Awareness of the reciprocal health effects
in the intimate relationship has led researchers to develop psychosocial or behavioural interventions that include
the partner. One example includes the Integrative Behavioural Couple Therapy model (IBCT) which aims to
improve outcomes for clients presenting with chronic pain in health settings, by increasing partner’s empathy
and emotional acceptance (Cano & Leonard, 2006). The majority of tailored interventions for couples, however,
provide couples with the same materials regardless of their specific needs (Martire, 2013). It is likely that
interventions will be more impactful if tailored to the diverse needs of different couples (Martire, 2013;
Pietromonaco, Uchino & Dunkel Schetter, 2013), and that reach will be increased where interventions work for
multiple chronic conditions (Lorig et al., 1999). In a tailored approach, the amount of targeted support for chronic
illness depends on couple characteristics and could also change over the duration of the interventions. The
potential advantages of tailored interventions include increased participant engagement and increased potency
of the interventions. For example, FAMCON, the family consultation intervention, targets smoking cessation
(Shoham, Rohrbaugh, Trost & Muramoto, 2006). Couples receive up to ten sessions that address the
relationship dynamics which contribute to smoking, such as ironic processes (partners’ inadvertent reinforcement
of smoking) and help couples realign their relationship in ways that are not organised around tobacco use
(Martire, 2013).
Another example, the Ecological Momentary Intervention (EMI), delivered interventions that were tailored in
ways that helped couples practise new skills in their daily lives, thereby improving the chance of long term gains.
EMI uses mobile technology to deliver interventions as clients go about their daily lives, and has been shown to
be effective for a variety of health related behaviours, and psychological and physical symptoms (Heron &
Smyth, 2010). When used for couple applications, it is based on within-couple associations observed through
either pre-intervention Ecological Momentary Assessment (EMA) or a clinical interview with the couple, such as,
data on couple communications and overt behaviours that precede changes in client physical activity. Dyadic
EMI is ideally preceded by sessions with a professional to learn basic concepts and skills, and establish a
working relationship (Martire, 2013).
Theme Five: Recommended Directions for Future Research
The reviewed studies include recommendations for future research, in order to develop a stronger evidence-
base to understand relationship dynamics in chronic illness. For example, more rigorous research is needed to
establish how various other intra- and inter-personal factors, and within couple variability influence, physical
health outcomes (Martire et al., 2010), using larger sample sizes and greater standardisation across studies
(Robles, Slatcher, Trombello & McGinn, 2014).
It is also clear, however, that studies often lack a strong foundation in conceptual models and are rarely
designed to examine mechanisms of change.
Couple interventions. Future research on effective couple interventions needs to focus on the experience and
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outcomes for the partners of people living with a chronic physical illness, and examine mechanisms of change in
couples. Interventions that modify relationship-related mechanisms (partner support) and then measure change
in client functioning, would enhance understanding of how close relationships affect health (Martire, 2013).
Moreover, these interventions could provide critical information about differences between diseases, such as
unique or shared pathways leading to clinical outcomes (Miller, Chen & Cole, 2009; Uchino, 2006), thereby
relationships related health research could also contribute information about diseases and health outcomes. It is
important that future studies compare couple-oriented interventions to client-oriented interventions, rather than
using usual care as the control condition, in order to collect evidence on whether improvements in patient health
are due to changes in dyadic processes, and not only due to changes in patient psychological well-being or
health behaviours (Martire et al., 2007). An additive treatment design could be used, where couple components
are added to a standard intervention. Alternatively, researchers could modify an evidence-based patient
intervention for use with couples, and compare the relative efficacy of two approaches (Martire et al., 2007).
A brief battery of client and partner outcome measures for use across chronic illness populations would promote
greater synthesis of the intervention literature. Important outcome domains include: psychological well-being,
health behaviours, relationship functioning, physiological functioning, quality of life measures, and client illness
symptoms. Specific measures tapping these domains should be identified for inclusion in an outcomes battery. A
cross-disease assessment approach has been adopted with success in the Patient-Reported Outcomes
Measurement Information System (PROMIS; Cella et al., 2007) and the NIH Toolbox (Gershon et al., 2010).
These projects have yielded brief measures of psychological, physical, and social health functioning for use in
clinical trial research, and are useful for developing cross-disease outcomes battery for couple oriented
interventions (Martire, 2013). Similarly, measures which examine clients’ quality of life, such as the SF 36 and
the Euroqol 5 (Picavet & Hoeymans, 2004) have been informative for tracking bidirectional effect of pain, health
status and quality of life.
Discussion
Findings indicate that chronic physical illness places a strain on the majority of intimate relationships. The
interplay between chronic illness and relationship function is dynamic and bi-directional, and poor relationships
have a negative effect on health and mental health, in general. For those clients living with a chronic illness,
poor relationship function makes it harder to manage the illness, and the treatment regime. Research also
indicates that many people living with an existing and chronic physical condition can expect to see their illness
worsen, as the negative affect of their relationship intensifies their poor health status. While more research is
needed, it seems that counselling and couple therapy has a role to play in improving health and mental health
conditions, by improving relationship function, especially for those living with a chronic illness. Measuring this
will enhance the knowledge base, and provide more information that can be used to benefit clients and their
carers.
The research exploring unmitigated communion and unmitigated agency suggests there is potential for couple
therapists to use their systemic knowledge and expertise to reduce enmeshment between patients and their
partners. Differentiation might help to counter the detrimental effects on the partners’ physical health, as well as
the couples’ mental health. The research reviewed for this article provides an evidence base for recommending
that chronic illness management be complemented with systemic interventions. This also has the potential to
improve treatment adherence, and the quality of the sufferers’ engagement in their treatment. Given that health
status is affected by relationship function, it is probable that counselling and couple therapy should play a
greater role in allied health services. Counselling and couple therapy may reduce poor health outcomes—where
avoidable—thereby saving health expenditure on treatment costs. This and other savings should be better
articulated in reports of counselling client outcomes for both funding purposes and professional recognition. In
conducting this review, we found little recognition of the ways in which counselling or couple therapy could better
contribute to the health sector.
Couple therapists could also better measure the outcomes of chronic illness interventions using health outcome
measures, and by conducting case analyses to establish changes in treatment adherence. Gaps in research
include partner outcomes, and this is a recommended focus for future research. Incorporating health measures
within couple therapy settings, and collating findings across agencies, will help to establish whether couple
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therapy improves health outcomes for partners and carers of people living with a chronic illness. Studies
collating outcome measures and responses across agencies will contribute to the research literature on
relationship dynamics and chronic illness, and increase knowledge at a sector level. This has the potential to
help overcome the limitations of previous research, which was hampered by small samples.
Significantly, published research has not yet accounted for different types of intimate relationship. The literature
tends to describe long term, married, heterosexual relationships and does not account for differences relating to
de facto arrangements, polyamorous constellations, or same sex couples, where gender differences might be
less pronounced. There is also a lack of information on couples where both are affected by chronic illness.
Having said this, an emerging body of work describes the ways in which chronic illness and health management
interfaces with intimate relationships, and vice versa. Such knowledge has the potential to support counsellors
and couple therapists in raising awareness of chronic illness as a factor for relationship dissatisfaction or
distress, as well as the support needs of partners living with someone affected by a chronic illness.
In conclusion, it is likely that people with an existing and chronic condition, can expect to see their illness
worsen, as the negative affect of their dysfunctional relationship intensifies their poor health status. While there
is a known link between partner behaviours and patient illness management, more research is needed to
understand the partners’ role. In the meantime, counsellors and couple therapists would be wise to ask their
clients questions about the presence of chronic illness, and establish their role in supporting clients to prevent
the illness worsening, so that the relationship can become a site for mutual support and healing. In improving the
relationship dynamics, and therefore health status of the sufferer, couple therapists might also have greater
scope to improve the quality of life of carers.
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... The "my health, our family" study sought to document family life in the context of these blood-borne viruses; namely, to record accounts of what family means to people who have been diagnosed with a stigmatized viral infection, and also what those infections mean to family members (Centre for Social Research in Health, 2017). Conceiving family only in terms of the presence or absence of formal care-giving roles is inadequate to explain the complex and contingent contributions of family support that figure in the everyday and long-term management of these infections (Gray et al., 2017;Hamilton et al., 2018). More attention is required to explore the diverse ways that such contributions intersect with the ways in which these infections continue to be experienced and negotiated in the formation and transitions of family life. ...
... Family support was also found to be critical when undergoing the previously demanding and often incapacitating treatment for HCV (Hopwood & Treloar, 2008;Hopwood et al., 2006). While these studies show that family support can provide significant benefits to people with a chronic illness, this support can be experienced as comforting or stressful, leading to emotional closeness or distance depending on contingent and fluctuating circumstances (Evans & Thomas, 2009;Gallant et al., 2007;Gray et al., 2017;Knafl & Gilliss, 2002;Rosland et al., 2012). This suggests that support is neither given nor received in uniform ways (Willyard et al., 2008). ...
Article
The "my health, our family" research project was established to document stories of what serodiscordance (mixed infection status) means for Australian families affected by HIV, hepatitis B, and/or hepatitis C. A family mapping exercise was developed for the start of interviews as a way to conceptualize serodiscordance as a movement of "closeness" and "distance" within the relational networks that participants defined as "family," the outcome of which was originally intended as a guide to explore the contributions of each family member in the in-depth qualitative interviews that followed. Such static representations of family were soon revealed to be inadequate for capturing the contingent, flexible, and multifaceted nature of familial relationality in the management of these infections. In this article, we explore these shifts for the conceptual openness mapping methods facilitate, and the constraints they reveal, for spatializing family relations in ways that heed diverse experiences of serodiscordance.
... We adjusted for potential confounding by age (15-19 year s/20-24 years/25-29 years); sex (male/female); self-reported body weight (overweight/underweight/just about right); any mental or substance disorder in the last 12-months (yes/no); sleep trouble (yes/no); self-reported mental health status (good/fair/poor); and living with a partner or spouse (yes/ no). Previous studies have shown strong correlations between each of the aforementioned variables and the presence of chronic illnesses (independent variable) and suicidal ideation (dependent variable) (Batty et al., 2010;Bernert & Joiner, 2007;Carta et al., 2017;Cullen et al., 1999;Diego De Leo, 2015;Freeman et al., 2017;Gray et al., 2013;Hopman et al., 2009;Till et al., 2017). Additional demographic variables and risk factors were descriptively reported, including race (white/non-white), household income (low/middle/ high), immigrant (yes/no), employment (yes/no), life stress (high/low), physical health (fair or poor/good), alcohol consumption (yes/no), physical activity (yes/no), community belonging (very strong or somewhat strong/very weak or somewhat weak), chronic physical condition (yes/no). ...
Article
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Background: Students who identify with a chronic physical condition are a growing population and their conditions may be associated with poor mental well-being. Aim: To compare suicidal ideation prevalence between Canadian school-attending young adults with and without a chronic physical condition. We hypothesized that students living with a chronic condition have a higher likelihood of experiencing suicidal ideation. Methods: A cross-sectional study was conducted using a nationally representative sample of 2297 Canadian school-attending young adults (ages 15-29 years) from the 2012-13 Canadian Community Health Survey-Mental Health (CCHS-MH). Survey-weighted logistic regression and sensitivity analyses were performed to estimate the likelihood of experiencing suicidal ideation between students with and without a chronic physical condition. Results: Approximately 14.3% (n = 329) students experienced suicidal ideation at some point. Students living with a physical chronic condition demonstrated 1.65 (95% CI: 1.14, 2.39) times higher odds of experiencing suicidal ideation, compared to students not living with a chronic physical condition. Conclusions: Suicide prevention and health promotion are important considerations for campus health providers and administrators when planning services and accommodations for students living with chronic physical conditions.
... Renal disease in patients with heart failure is multi-factorial. Renal function may act as a barometer of cardiac function [13]. ...
Article
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Background: Chronic kidney disease (CKD) is a worldwide public health alarming problem. Although both heart and kidneys are separated by a quite distance within the body and they perform varied functions, there is a close physiological relationship between them. The diseases in the kidneys can trigger a disease in the heart and vice versa. High blood pressure is the most significant risk factor for the development and progression of chronic kidney disease (CKD). Lowering blood pressure is a goal to prevent CKD progress. Chronic abnormalities in cardiac function (e.g., chronic congestive heart fail-ure) causing, chronic kidney disease and anemia appear to act together in a vicious circle in which each condition causes or exacerbates the other pro-gressive chronic kidney disease. Objective: To assess the prevalence of chronic kidney disease in patients with cardiovascular disease at Shebin El-Kom Teaching Hospital and Menoufia University Hospital Cardiology Outpatient Clinic, Menoufia Governorate, Egypt. Methods: This is a cross-sectional study that was conducted in Shebin El-Kom Teaching Hospit-al Cardiology Outpatient Clinic, Menoufia University Cardiology Outpatient Clinic from April 2019 to July 2019. This study included 200 patients with cardiovascular disease or hypertension for more than 6 months. All patients were subjected to detailed history taking, clinical examination, laboratory in-vestigation, echo and abdominal ultrasound. Results: This study included 200 patients with cardiovascular disease or hypertension for more than 6 months, which showed that: 63 (31.5%) were diagnosed as chronic kidney disease, 24 (38%) known to be CKD, 39 (62%) not known diagnosed in our study. Un-controlled hypertension, congestive heart failure, diuretics and ACEI or ARBS with diuretics together are significant risk factors for renal impairment; uncontrolled hypertension and diuretics are the most predictors for renal impairment. Conclusion: Uncontrolled hypertension is the most preventable cause of renal impairment; RAAS not cause renal impairment but lead to decreased GFR in CKD patients. We should be careful with ACEI or ARBS with diuretics or diuretics only and control congestive heart disease to avoid kid-ney injury and chronic cardiorenal.
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Employing a simple approach for coding pain severity, the present study describes self-reported pain in United States adults. Data are included for 8,781 adults who completed the Functioning and Disability Supplement of the 2012 National Health Interview Survey. An internationally piloted pain-severity coding system was used to group participants into five discrete ordered pain categories based on their pain persistence (days with pain in last three months) and bothersomeness (little, lot, somewhere in between): Pain Free and Categories 1(low) to 4(high). It is estimated that 126.1 million adults reported some pain in the previous 3 months, with 25.3 million adults (11.2%) suffering from daily (chronic) pain and 23.4 million (10.3%) reporting "a lot" of pain. Based on the persistence and bothersomenes of their pain, 14.4 million adults (6.4%) were classified as having the highest level of pain, Category 4, with an additional 25.4 million adults (11.3%) experiencing Category 3 pain. Individuals with Category 3 or 4 pain were likely to have worse health status, to use more healthcare, and to suffer from more disability than those with less severe pain. Associations were seen between pain severity and selected demographic variables including race, ethnicity, preferred language, sex and age. United States estimates of pain prevalence are presented using a simple approach for assigning pain severity developed by the Washington Group on Disability Statistics. Concurrent validity is assessed. While this approach is promising, additional work is required to determine the utility of the Washington Group pain categories for pain research or clinical practice. Copyright © 2015 American Pain Society. Published by Elsevier Inc. All rights reserved.
Article
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Abstract CLINICAL QUESTION Does treating the HIV-infected partner in a serodiscordant couple reduce the risk of HIV transmission to the uninfected partner? BOTTOM LINE Compared with serodiscordant couples without treatment, couples in which the infected partner is treated with antiretroviral therapy have a lower risk of HIV transmission.
Article
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Using cross-sectional data from 117 married couples in which one member is diagnosed with Type 2 diabetes, the current study sought to explore a possible indirect association between common dyadic coping and dietary and exercise adherence via the mechanism of patient and spouse reports of diabetes efficacy. Results from the structural equation model analysis indicated common dyadic coping was associated with higher levels of diabetes efficacy for both patients and spouses which, in turn, was then associated with better dietary and exercise adherence for the patient. This model proved a better fit to the data than three plausible alternative models. The bootstrap test of mediation revealed common dyadic coping was indirectly associated with dietary adherence via both patient and spouse diabetes efficacy, but spouse diabetes efficacy was the only mechanism linking common dyadic coping and exercise adherence. This study highlights the importance of exploring the indirect pathways through which general intimate relationship functioning might be associated with Type 2 diabetes outcomes. (PsycINFO Database Record (c) 2013 APA, all rights reserved).
Article
The Communal Coping Model (CCM) characterizes pain catastrophizing as a coping tactic whereby pain expression elicits assistance and empathic responses from others. Married couples (N = 105 couples; one spouse with chronic low back pain) completed electronic daily diary assessments 5 times/day for 14 days. On these diaries, patients reported pain catastrophizing, pain, function, and perceived spouse support, criticism and hostility. Non-patient spouses reported on their support, criticism, and hostility directed toward patients, as well as their observations of patient pain and pain behaviors. Hierarchical linear modeling tested concurrent and lagged (3 hours later) relationships. Principal findings included: a) within-person increases in pain catastrophizing were positively associated with spouse reports of patient pain behavior in concurrent and lagged analyses; b) within-person increases in pain catastrophizing were positively associated with patient perceptions of spouse support, criticism, and hostility in concurrent analyses; c) within-person increases in pain catastrophizing were negatively associated with spouse reports of criticism and hostility in lagged analyses. Spouses reported patient behaviors that were tied to elevated pain catastrophizing, and spouses changed their behavior during and following elevated pain catastrophizing episodes. Pain catastrophizing may affect the interpersonal environment of patients and spouses in ways consistent with the CCM. Pain catastrophizing may represent a coping response by which individuals' pain expression leads to assistance or empathic responses from others. Results of the present study support this Communal Coping Model, which emphasizes interpersonal processes by which pain catastrophizing, pain, pain behavior and responses of significant others are intertwined. Copyright © 2015 American Pain Society. Published by Elsevier Inc. All rights reserved.
Article
Although there is widespread interest in understanding how models of care for delivering antiretroviral therapy (ART) may influence patient outcomes, family-focused approaches have received little attention. In particular, there have been few investigations of whether the co-enrollment of HIV-infected family members may improve adult ART outcomes over time. We examined the association between co-enrollment of HIV-infected family members into care and outcomes of women initiating ART in 12 HIV care and treatment programs across sub-Saharan Africa. Using data from the mother-to-child transmission-(MTCT) Plus Initiative, women starting ART were categorized according to the co-enrollment of an HIV-infected partner and/or HIV-infected child within the same program. Mortality and loss to follow-up were assessed for up to 5 years after women's ART initiation. Of the 2877 women initiating ART included in the analysis, 31% (n = 880) had at least 1 HIV-infected family member enrolled into care at the same program, including 24% (n = 689) who had an HIV-infected male partner, and 10% (n = 295) who had an HIV-infected child co-enrolled. There was no significant difference in the risk of death of women by family co-enrollment status (P = 0.286). However, the risk of loss to follow-up was greatest among women who did not have an HIV-infected family member co-enrolled (19% after 36 months on ART) compared with women who had an HIV-infected family member co-enrolled (3%-8% after 36 months on ART) (P < 0.001). These associations persisted after adjustment for demographic and clinical covariates and were consistent across countries and care programs. These data provide novel evidence for the association between adult outcomes on ART and co-enrollment of HIV-infected family members into care at the same program. Interventions that build on women's family contexts warrant further consideration in both research and policies to promote retention in ART services across sub-Saharan Africa.
Article
Background: As difficulties in performing daily activities occur among persons with dementia, their spouses are also affected. This is also true for mealtimes, yet there is a lack of knowledge and research into how couples manage this situation at home. Objective: The aim of the study was to explore and describe spouses’ experiences of mealtimes in couples in which one partner has dementia. Design, Setting and Participants: Ten spouses were interviewed in their home in respect to their experiences regarding mealtimes when living with a partner diagnosed with dementia. To identify themes across the data set, thematic analysis was conducted. Results: One major theme, Recognizing and managing the range of mealtime change, was identified and showed that depending on where the families were in the dementia process their experienced varied. As progression occurred in the partners disease, routines, responsibilities and relationships were affected within the couple. Strategies the participants used to manage mealtimes at home regarding these problems were highlighted such as getting support from social services, but also strategies they had learnt by themselves. Conclusion: These results generate an insight into what couples face, and their needs for support. Spouses experiences varied which indicates that it is important that support is based on individual needs. Hence, nursing staff should continuously pay attention to couples mealtime situation. Further it increases staff´s knowledge regarding possible solutions on how to involve persons with dementia in mealtime activities and maintain their nutritional intake.
Article
Objectives The scoping review has become increasingly popular as a form of knowledge synthesis. However, a lack of consensus on scoping review terminology, definition, methodology, and reporting limits the potential of this form of synthesis. In this article, we propose recommendations to further advance the field of scoping review methodology. Study Design and Setting We summarize current understanding of scoping review publication rates, terms, definitions, and methods. We propose three recommendations for clarity in term, definition and methodology. Results We recommend adopting the terms “scoping review” or “scoping study” and the use of a proposed definition. Until such time as further guidance is developed, we recommend the use of the methodological steps outlined in the Arksey and O'Malley framework and further enhanced by Levac et al. The development of reporting guidance for the conduct and reporting of scoping reviews is underway. Conclusion Consistency in the proposed domains and methodologies of scoping reviews, along with the development of reporting guidance, will facilitate methodological advancement, reduce confusion, facilitate collaboration and improve knowledge translation of scoping review findings.
Article
There is emerging evidence that couple-oriented behavioral interventions (CIs) for chronic illness yield benefits for patients. However, conceptual and methodological advances are critical for strengthening the impact and evaluation of this treatment approach. First, it would be useful to develop CIs that work for multiple chronic conditions and are tailored to couples’ needs, and that can be delivered in ways that help couples apply new skills to challenges that they encounter in daily life. Second, there is a need for studies that compare CIs to evidence-based, patient-oriented interventions, and that assess mechanisms in ways which improve our understanding of how intimate relationships affect illness management. Finally, new directions in research on marriage and health will yield findings that are important for the next generation of CIs.