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Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800"
Involvement of Family and Friends in Pain
Management Interventions
Lucinda Mawdsley1, Dr Hannah Twiddy1 & Melissa Longworth1
Abstract
Context/Background: Chronic pain (CP) is a major public health concern affecting
7.8 million people in the UK alone.1 Family members and close friends play an
important role in supporting those with CP. Previous research demonstrates that it is
not solely the individual diagnosed with CP that is affected, but also significant others
such as family and friends (F&F).
Objectives: The current study will consider the role of F&F in supporting
individuals with CP to adjust to life with pain, and aims to demonstrate the
importance of their involvement on a pain management programme (PMP).
Method: A new F&F session was added to a well-established PMP based at the
Walton Centre NHS Foundation Trust in Liverpool, UK. A mixed methods
questionnaire-based service evaluation was conducted over a period of six months to
determine the usefulness and value of F&F involvement on a PMP from the
perspective of patients and their F&F.
Results: Quantitative data highlighted positive perceptions of the session, with
65.4% of participants rating the session content as ‘very good’ and 71% rating session
usefulness as ‘very good’. A thematic analysis further revealed high satisfaction levels
in how the session improved understanding of self-management approaches (42.2%),
communication techniques (22.8%) and satisfaction reported by patients around
having a F&F present on the programme (13.3%).
Conclusions: The inclusion of significant others on a PMP was shown to be a
valuable addition to the established group programme. It is valued both by patients,
and F&F alike, and is in line with previous findings that carer inclusion can be crucial
in supporting the development of self-management strategies and support.
Limitations of the study include its cross-sectional design and variation of session
delivery.
Key words
Chronic Pain, Family and Friends, Pain Management, Intervention, PMP
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
13
Introduction
Chronic Pain
!
Chronic pain (CP) is a major public health concern affecting 7.8 million people in the
UK alone1. CP is defined as prolonged and persistent pain lasting at least 3 months in
duration.2 While an acute pain response to noxious stimuli has a vital protective
function, CP conditions constitute a tremendous source of unnecessary suffering.3
The extent of chronic pain poses a significant economic burden on patients and the
systems around them, including societies, health care services and families.4
CP is a condition that has high comorbidity with depression and other mental health
difficulties.5 Pain itself is shaped by a host of psychological factors, and how
individuals react to the physiological aspects of pain is shaped and influenced by
their previous experience.6 Psychological effects may include fatigue, depression and
anxiety.7 Social withdrawal and isolation further contribute to the negative
experience of CP. The complex effects of living with CP have been well documented in
the literature and can be understood within a biopsychosocial framework. Along with
the personal and social consequences of CP, individuals often report receiving a
multitude of negative attitudes and distrust from health care providers, colleagues,
family members and acquaintances.8
!
Pain Management Programmes
A PMP is a psychologically-based rehabilitative intervention for people with CP
which remains unresolved by other treatments currently available. PMPs are well-
established interventions for individuals with notable pain-related distress and
reduced quality of life (QoL). It is delivered in a group setting by an interdisciplinary
team of experienced health care professionals working closely with patients.2 A PMP
provides a secure environment for patients to learn about CP from an experienced
multidisciplinary team of professionals in order to understand the links between CP
and the subsequent impact pain has on various aspects of life. Being in a group
setting with others experiencing CP is greatly beneficial to patients and results in a
collaborative learning environment between patients and professionals.
The role of carers in Chronic Pain
Although CP has significant consequences for the individual affected, its impact also
affects those in their immediate social sphere; typically family members and close
friends. The experience of CP is all-encompassing, affecting all aspects of life as seen
in other chronic conditions.9 Previous research has noted value in examining the
interaction between an individual’s response to their condition and the social
relationships that they inhabit in their environment.10 The family environment
encompasses a range of variables including individual parent behaviours, dyadic
interactions between family members and the broader family system including
socioeconomic conditions, family structure, functioning and culture.11 Family
members and close friends therefore have a vital role in supporting individuals with
their self-management of CP. It has been noted that the spouse of the CP patient has
an important influence on patient coping and adjustment to life with pain. 12 13 14 15 In
keeping with this, research has looked at spouse-assisted training in pain coping
skills.16
!
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
14
CP can cause significant limitations on family life and social roles,17 and can result in
role shifts within the family.18 For example, physical implications posed by CP mean
that activity such as household chores, childcare, leisure activities and work become
troublesome. Restructuring of familial roles occurs to compensate for the
responsibilities that the individual with CP once took care of. This can include
children taking on caring roles and responsibilities that were previously shouldered
by a parent. Such role restructuring may have implications for self-identity. The roles
and patterns of activity within a family are often well-established and disruption
brought about by CP can cause frustration and distress for all involved as adjusting to
and accepting new roles and relationship dynamics can cause unease in F&F
relationships. Relatives of individuals with CP have reported feeling powerless,
alienated, emotionally distressed and isolated.19 Previous research looking at the
experience of partners of people living with CP has also highlighted themes of family
loss, life changes, the emotional impact of pain and consequences for future plans
that couples or families may have once made together.19 Furthermore, the invisibility
of CP can lead to discrepancies between patients’ and spouses’ appraisals of pain
severity and this may lead to patients feeling disbelieved and misunderstood by their
spouse and close others.20 Increased caring responsibility can place demands on
individuals struggling to adjust to the changes brought about by CP and this can place
significant burden on those individuals placed in the caring role. Burden of care is a
complex construct that is usually defined by its impact and consequences on
caregivers.21 22 Such tensions may cause significant others to be a potentially
detrimental source of support rather than an aid to rehabilitation through promoting
quality of life (QoL) and functioning.21
Many theories have proposed as frameworks to understanding the role of the family
in mediating pain responses. Expressed Emotions (EE) theory23 describes how highly
hostile and critical family environments may interact with an individual’s
vulnerability to stress to exacerbate and maintain a variety of conditions. It has been
suggested that this theory could be extended to CP, with spouse criticism or hostility
aggravating and maintaining CP intensity or pain behaviours.24 According to
interpersonal models, 25 spouses of individuals with CP may become frustrated when
pain does not improve and when adverse lifestyle changes become seemingly long-
lasting.26 Witnessing pain talk and/or pain behaviour may then elicit a negative
response from spouses towards the individual with CP.27 These negative responses
may have a detrimental effect on patient and spouse well-being. Some research has
looked to attachment theory 28 to explain the family-pain interplay. In a study where
individuals with CP completed measures of self-reported attachment style, perceived
spouse responses, and pain-related criterion variables, it was found that secure
attachment was inversely associated with self-reported pain behaviours, pain
intensity, disability, depressive symptoms and perceived negative spousal responses.
Fearful and preoccupied attachment scores were positively associated with these
variables.29
The dynamic interplay between the social environment and psychosocial
adjustment30 means it is important to consider the wider impact of CP when
providing pain management interventions and to recognise the interface between
condition management and family life.31 Significant others may play a mediating role
in pain outcomes and patient support and it is becoming increasingly acknowledged
that involving partners or significant others in pain management and taking
psychosocial factors (including spousal response to development and maintenance of
pain) into account are important elements in management of pain.32 Involving
significant others in pain management interventions may increase the likelihood that
the social environment will foster behaviour change and persistence with
management techniques.33 This is especially important since lifestyle changes
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
15
brought about by CP may undermine support and may increase unhelpful spousal
responses.27 The complexity of these dyadic interactions must be taken into account
when delivering pain management interventions,15 as offering education and support
for family members may aid positive responses to pain interventions. Therefore, the
influence of spouses and significant others is an important aspect of pain
management that must not be overlooked.21
Content for the addition of a Family and Friends afternoon on the PMP
!
CP can therefore cause families to be faced with significant challenges.16 Pain
management interventions should consider the wider impact of CP and the
significant lifestyle alterations CP brings about, not just to individuals diagnosed, but
also to those in the individual’s immediate social sphere. Systemic work involving
F&F may therefore be important in assisting with rehabilitation.
Cognitive behavioural interventions can change patient beliefs around pain and this
suggests that the beliefs of spouses and F&F are also amenable to change.34 In the
context of evidence surrounding the importance of including significant others in CP
rehabilitation the PMP team at the Walton Centre, Liverpool, added a F&F afternoon
to an established PMP. This afternoon aimed to introduce F&F to the philosophy of a
PMP and its core themes in order to help establish understanding of CP (vs. acute
pain) and appropriate support and communication between the individual with CP
and significant others. The potential social stigma faced by individuals with ‘unseen’
health complaints21 and their families is also explored.
Study aims
!
The aim of this study was to assess the perceived effectiveness and value of adding a
F&F session to an established, structured PMP from the perspective of patients and
their F&F. A second aim was to add to the current literature published in this area
and highlight important findings.
Methods
Participants
Participants included a mixture of patients and their F&F who attended the F&F
session on a 16 day PMP during the six-month period that data collection took place.
The average age of those attending the programme was 46.3 years (47.83 years for
females and 46.87 years for males) and of the total 720 patients, 497 were female and
223 were male.
Materials
Data was collected anonymously using a questionnaire design (see Appendix A).
Participation in the service evaluation was voluntary and all attendees of the F&F
session of a 16 day PMP during the six-month data collection period had the
opportunity to take part.
Design
The study was a mixed method questionnaire-based service evaluation, taking place
over a period of six months. The questionnaire looked at ratings of various aspects of
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
16
the session including content, speed and usefulness alongside what was rated to be
the most and least useful parts of the session.
Procedure
A F&F session was added to the Walton Centre’s established PMP. This session
occurred on the 8th day of a 16 day PMP and lasted approximately 2.5 hours with one
15 minute break half way through. F&F sessions were facilitated by a Clinical
Psychologist, a Physiotherapist and an Occupational Therapist who specialised in CP;
reflecting the interdisciplinary approach of a PMP. Each discipline outlined core
themes from their speciality regarding the impact of CP on an individual’s life and the
role of management approaches in these areas (See Table 1).
Table 1 – Key Areas Addressed in the PMP Family & Friends Session
Discipline
Clinical Psychology
The Clinical Psychologist involved in the session has an
overarching aim to explore and develop family, friends
and patients’ understanding of the impact of chronic pain
alongside acceptance of living with pain. The second
main focus is on communication and improvement of
techniques between patients and their F&F.
Occupational Therapy
The Occupational Therapist has the aim of exploring the
varied and widespread impact that pain can have on
functioning, lifestyle, activity and roles. They introduce
ideas and techniques discussed on the programme,
including the concepts of target setting, activity pacing
and the use of mindfulness techniques. This provides
information to allow F&F to support the patient during
the programme and in the future. It also highlights the
emphasis of returning to activity that is realistic and
valued by the individual.
Physiotherapy
The Physiotherapist highlights the differences between
types of pain and the impact of pain on physical
functioning. They explore past management of pain and
the importance of a gradual increase in activity
throughout the programme to improve mobility and
quality of life, despite pain.
Results
The final study sample included 179 participants, 96 of which were patients on the
PMP, 74 were family members, 3 were friends and 6 were unspecified. Both
quantitative and qualitative data was collected to assess the perceived usefulness and
value of the F&F sessions on the PMP and to further highlight individual satisfaction
and suggestions.
Quantitative Data
Results highlighted that 65.4% of participants rated the session content as ‘very good’
(score 5 on the Likert scale), 48% rated the speed of delivery as ‘very good’ and 71%
rated usefulness of the sessions as ‘very good’. No participants rated the content,
speed or usefulness as ‘poor’ or ‘very poor’ (see Table 2 for an outline of percentage
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
17
ratings from the Likert scale of satisfaction).
Qualitative Data
A thematic analysis of open-ended satisfaction questions showed how participants
rated the most useful aspects covered to be improving understanding of self-
management approaches to chronic pain (42.2%), communication techniques
(22.8%) and the presence of a F&F (13.3%). Alternatively, the least useful aspects
were reported to be the group setting itself (28.6%), improving understanding of self-
management approaches to chronic pain (28.6%) and the shortness of the session
length (16.7%).
Table 2 - Percentage Rating of Content, Speed and Usefulness of the PMP Family & Friends Session
Content (%)
N = 176
Speed (%)
N = 176
Usefulness (%)
N = 176
Very Poor
(1)
0
0
0
Poor (2)
0
0
0
Okay (3)
3.91
7.26
4.47
Good (4)
29.1
42.5
22.9
Very Good
(5)
65.4
48
70.95
!
!
Discussion
In line with the aim of this article, the authors believe that the results demonstrate
the potential effectiveness of a F&F session as part of a PMP for patients, family and
friends. Specifically, the majority of participants selected ‘very good’ in all three
satisfaction areas (content, speed and usefulness, as highlighted in Table 2). The
interpretation of these results is that those involved found the content of the group
and applicability to be relevant, the speed of delivery to be at an appropriate pace and
the usefulness to daily life to be at a high level. Qualitative data further revealed how
participants found the session to be of particular use. These findings together are
consistent with the increasing acknowledgement within the literature that involving
significant others in the management of CP is important.32
Group aspects that were reported to be less useful were also explored and recorded.
One common theme included the group setting itself, with participants reporting the
environment to be too large and noisy. A number of participants reported feeling
uncomfortable expressing their feelings within the group space, while others
expressed how they would have liked the session to be longer in duration. It would
therefore be important within future groups to address these factors by considering
appropriate group numbers, group location and the length of the session. The third
theme highlighted that a number of participants reported that their understanding of
self-management approaches to chronic pain did not improve, due to already
acquiring a good level of understanding. This was therefore rated as a least useful
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
18
aspect of the session. As this was reported to be very useful for some of the group and
less useful by others, it would be helpful to explore further other potential factors that
may underpin this varied finding, while tailoring content to various levels of current
understanding.
The above results highlight important key components and areas of focus for future
sessions. It is clear that F&F inclusion can benefit new and established PMPs due to
the perceived value reported by CP patients and F&F. This inclusion has the further
potential to improve patient programme experience, increase perceived social
support and even offer indirect support to F&F. Participants also felt their
communication abilities improved from attending the session, which will likely add
to their perceived level of support from others.
To explore usefulness and patient satisfaction of a F&F session, future studies would
benefit from implementing a longitudinal study design to capture how these
outcomes may change over time. More specifically, conducting a longitudinal study
may highlight the likelihood of behaviour change and persistence with management
techniques in patients and F&F, as proposed previously.33 As the current study
featured a cross-sectional design, this information cannot be derived. Similarly,
exploring group expectations prior to the session may allow services to either
accommodate for or modify these to encourage positive outcomes and satisfaction in
all areas. Secondly, as sessions were facilitated by different team members, this
potentially led to variance in delivery and consequential feedback. To account for this
variance, additional statistical tests should be run on larger sets of data to explore if
this relationship moderates changes in satisfaction or group outcomes. Thirdly,
outcomes were based on session satisfaction only and it may be of benefit to
incorporate health-related and psychosocial outcomes in future research. These
scores alongside satisfaction feedback will encourage understanding of other
potential moderating factors and more varied outcomes, including changes in
emotional distress, feelings of being powerless and being isolated as identified
previously.19 Incorporation of an objective measure of expressed emotion such as the
Camberwell Family Interview35 may add rich data around whether or not F&F would
perceive the session as useful or not, depending on family environment and
involvement. Finally, F&F sessions could similarly be incorporated into individual
rehabilitation settings to promote similar outcomes.
Future implications
Analysis of both quantitative and qualitative data in the current sample highlights
how the management of CP in services could be improved by the addition of F&F
involvement. Not only did this serve to educate individuals around effective
management of pain in this sample, further reported benefits included perceived
social support through F&F attendance and improvement in communication abilities.
This has potential to positively influence long-term outcomes as F&F would feel
more confident in their ability to support their loved one in a variety of situations,
increasing feelings of efficacy and control in both patients and those around them.
This should be taken into account when developing interventions for individuals with
CP in the future, whether group based or individually tailored, in order to improve
perceived support, understanding and overall outcomes.
Conclusions
In conclusion, the F&F session delivered at the Walton Centre, Liverpool was
reported to be a valuable component of the PMP which was consistent across both
Journal of Observational Pain Medicine – Volume 1, Number 5 (2015) ISSN 2047-0800
19
PMP patients and their F&F alike. This corroborates with previous findings that carer
inclusion can be crucial in the development of self-management strategies. Further
exploration into ways of improving the group session and addressing aspects deemed
to be less helpful may further improve the experience of future patients and F&F.
Overall, the influence of spouses and significant others is an important part of pain
management that could be a beneficial addition to PMPs.
Acknowledgements
The authors would like to thank all members of the Pain Management Programme
team at the Walton Centre NHS Foundation Trust, Liverpool UK.
Conflict of interest disclosures
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article. Disclaimers and conflict of interest policies are found at: http://bit.ly/1wqiOcl
Article submission and acceptance
Date of Receipt: 10.11.2015 Date of Acceptance: 20.05.2016
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Corresponding Author:
Hannah"Twiddy,"Pain"Management"Programme,"The"Walton"
Centre"NHS"Foundation"Trust,"Jubilee"House,"Longmoor"Lane,"
Fazakerley,"Liverpool"L9"7LJ,"UK."
Email:"Hannah.twiddy@thewaltoncentre.nhs.uk
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