DOCTORA L T H E S I S
Department of Health Sciences Division of Health and Rehabilitation
Patient Participation in and Treatment Effects of
Multimodal Rehabilitation and the Web Behaviour
Change Program for Activity
Catharina Nordin
ISSN 1402-1544ISBN 978-91-7583-618-8 (print) ISBN 978-91-7583-619-5 (pdf) Luleå University of Technology 2016
Cathar ina Nor din P atient P ar ticipation in and T
reatment Effects of Multimodal Rehabilitation and the
W eb Beha viour Change Pr og ram for Acti vity
Physiotherapy
Patient participation in and treatment effects of
multimodal rehabilitation and the web Behaviour
Change Program for Activity
Catharina Nordin
Division of Health and Rehabilitation,
Department of Health Sciences,
Luleå University of Technology,
Sweden.
June 2016
Printed by Luleå University of Technology, Graphic Production 2016 ISSN 1402-1544 ISBN 978-91-7583-618-8 (print) ISBN 978-91-7583-619-5 (pdf) Luleå 2016 www.ltu.se
The doctoral thesis
Patient participation in and treatment effects of
multimodal rehabilitation and the web Behaviour
Change Program for Activity
Catharina Nordin
was performed in a co-operation between Luleå University of Technology and
the County Council of Norrbotten, and was financed by the Research project
REHSAM (REHabilitering och SAMordning), a co-operation between the
Swedish Social Insurance Agency, the Ministry of Health and Social Affairs, the
Swedish Association of Local Authorities and Regions, and the Vårdal
Foundation.
CONTENTS
ABSTRACT
1
ORIGINAL PAPERS
3
PREFACE
5
INTRODUCTION
6
BACKGROUND
7
Physiotherapy perspectives in pain rehabilitation 7
Patient participation 7
Patient-centered medicine 8 Social cognitive theory and self-efficacy 14 Coping strategies and pain catastrophizing 15 Persistent musculoskeletal pain 16 Multimodal rehabilitation 16 Web-based interventions for pain management 17
RATIONALE
19
THE AIMS
20
METHODS
21
Study design 21
Study context 23
Participants, selection, and procedure 26
Data collection 27
Data analysis 30
Ethical considerations 31
FINDINGS
33
Experiences of patient participation prior to and within MMR
(I, II) 33
Experiences of patient participation within MMR in combination with the web-BCPA (III) 36 Study participation and follow-up of study IV 39 Adherence, feasibility, and satisfaction with MMR and the
Treatment effects of MMR in combination with the
web-BCPA (IV) 41
DISCUSSION
48
Being confirmed – a key component to patient participation 48 Patients’ emotional and cognitive resources and restrictions
in patient participation 49 Participation and adherence of MMR and the web-BCPA 51 Treatment effects of MMR in combination
with the web-BCPA 52
METHODOLOGICAL CONSIDERATIONS
55
CONCLUSIONS
58
CLINICAL IMPLICATIONS
59
FURTHER RESEARCH
60
SVENSK POPULÄRVENSKAPLIG SAMMANFATTNING
61
ACKNOWLEDGEMENTS
65
REFERENCES
66
ʶ
ʶʶ
Paper III
Paper IV
ABSTRACT
The overall aim was to explore experiences of patient participation in pain rehabilitation among patients with persistent musculoskeletal pain, and investigate effects of multimodal rehabilitation (MMR) and a self-guided web-based intervention. Qualitative interviews were conducted with women and men (between 23 to 60 years) with persistent musculoskeletal pain. Their experiences of patient participation prior to MMR, within MMR, and within MMR in combination with the web Behaviour Change Program for Activity (web-BCPA) were analysed with qualitative content analysis (study I – III). A randomized controlled trial with two intervention arms: 1) MMR in combination with the web-BCPA (MMR+WEB), and 2) MMR, was performed in the primary healthcare to investigate treatment effects of pain intensity (Visual Analogue Scale), self-efficacy to control pain and other symptoms (Arthritis Self-Efficacy Scale), general self-efficacy (General Self-Efficacy Scale), coping (Two-item Coping Strategies Questionnaire), and patient participation. Adherence, feasibility and satisfaction with treatment were also evaluated. The patients were 85 women and 14 men (mean age 43 years) with persistent musculoskeletal pain for 6.5 years (m) (study IV).
The findings showed that patient participation can be understood as complex and
individualized (I – III). Patients’ emotional and cognitive resources and restrictions, as well as healthcare professionals’ attitudes and behaviours were important to patient participation (I, II, III). Experiences of patient participation prior to MMR indicated a search for recognition and an alienation from the healthcare system (I). Patients experienced satisfying patient participation within MMR (II) and within MMR in combination with the web-BCPA (III). Patient participation was to take part in a structured and flexible rehabilitation framework characterized by co-operation with healthcare professionals (II, III), and solitary work in the web-BCPA (III). Being confirmed in the interaction with healthcare professionals in MMR (II, III), and in interaction with the web-BCPA (III) was fundamental to patient participation. Being confirmed included to be recognized as a patient and as a person (II, III), as well as to perceive trustworthiness and to be able to identify one-self in the rehabilitation (III).
Situations of mistrust and disrespect in contacts with the healthcare professionals were experienced as restrained patient participation (I, II, III). Patient participation included various experiences of knowledge and insights: the patients’ knowledge not being acknowledged (I), experiencing a lack of knowledge (II), and experiences of acquiring knowledge and insights (III). Behaviour change was included in patients’ experiences of patient participation (III).
Further, the findings showed that MMR in combination with the web-BCPA decreased patients’ catastrophic thinking about their pain (p = .003) over time, compared to MMR (IV). Also, patients in the MMR+WEB group were more satisfied with their multimodal
rehabilitation, at 4 (p = .000) and 12 months (p = .003) (IV).There were no differences between the MMR+WEB group and the MMR group regarding the other six subscales of the Two-item Coping Strategies Questionnaire. Nor were there any differences between the groups for pain intensity, self-efficacy, and patient participation. However, there were significant decrease of average pain (p = .000) over time in the whole study group
between 0 to 1142 minutes, and the patients opened in average 5.1 modules out of eight (IV). Patients rated feasibility and satisfaction with the web-BCPA acceptable to excellent (62 to 93 / 100). Due to the large variation of time spent in the web-BCPA a sub-group analysis of lower (LQ) and upper quartile (UQ) of time spent was performed. The study groups were small (fourteen patients in each group) but the results showed a trend that the UQ had higher scores regarding web-BCPA feasibility and satisfaction, and LQ had lower scores.
In conclusion, patients’ emotions and cognitions were in focus in patient participation. Experiences of patient participation prior to MMR were understood as a search for recognition in the healthcare system. In contrast, patients experienced satisfying patient participation and being confirmed within MMR and within MMR in combination with the web-BCPA. Patients in MMR in combination with the self-guided web-BCPA decreased their catastrophic thinking about pain. Also, they were more satisfied with their multimodal rehabilitation.
ORIGINAL PAPERS
This doctoral thesis is based on the following papers, which will be referred to in the text by the Roman numeral listing:
ȱ. Nordin, C., Fjellman-Wiklund, A., & Gard, G. (2014). In search of recognition: patients’ experiences of patient participation prior to multimodal pain rehabilitation. European Journal
of Physiotherapy, 16: 49–57.
ȱȱ. Nordin, C., Gard, G., & Fjellman-Wiklund, A. (2013). Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation. Journal of
Rehabilitation Medicine, 45, 580-586.
III. Nordin, C., Michaelson, P., Eriksson, M. K., & Gard, G. It’s about me: Experiences of patient participation in multimodal rehabilitation in combination with the web Behaviour Change Program for Activity (web-BCPA). Submitted.
IV. Nordin, C., Michaelson, P., Gard, G., & Eriksson, M. K. Effects of the web Behaviour Change Program for Activity and multimodal pain rehabilitation: Randomized controlled trial. Submitted.
PREFACE
I had worked as a physiotherapist in the primary healthcare for many years when we introduced team-rehabilitation (later defined as multimodal rehabilitation) for patients with persistent musculoskeletal pain at the healthcare center. This was the start of my journey towards a deepened understanding of patient participation. A concept I had practiced in my clinical work with patients without knowing its complexity.
My intuition was that I connected well with most patients, focusing on the meeting, trying to understand each patient, as well as giving satisfying explanations for symptoms and doing my best to provide appropriate treatment. To me team-rehabilitation opened a new arena for patient participation. I found myself as one healthcare professional, among others, together with the patient at team-conference meetings, with opportunities to reflect on patient participation in many interpersonal interactions. I became aware of the various ways there were to communicate and to meet with a patient. It made me wonder what is participation in healthcare, and how we, the healthcare professionals, can understand what patient
participation is like for each patient.
My interest was the starting point of the research into patient participation, and the reason I have focused on the patient’s perspective.
INTRODUCTION
The focus of this doctoral thesis was to explore patients’ experiences of patient participation in, and to investigate effects of, rehabilitation for musculoskeletal persistent pain in primary healthcare. Patient participation is a global concept that everybody recognizes in its overall meaning, but may have various implications for different people. Based on my clinical experiences as a physiotherapist and on the existing research of patient participation my beliefs are that the patients’ experiences of patient participation are important for
rehabilitation adherence and outcomes. To deepen the understanding and capture the diversity of the patients’ experiences of patient participation in pain rehabilitation I have used a qualitative approach in three of the studies. Patients with persistent pain in multimodal rehabilitation (MMR) were interviewed about their experiences prior to and within the rehabilitation. Further, patients with persistent pain in a treatment combination of MMR and a self-guided web-based intervention for pain management have been interviewed about their experiences of patient participation. Qualitative content analysis was used to describe the experiences of patient participation in a structured way. By using quantitative methods in one study, treatment effects of MMR in combination with a self-guided web-based intervention on pain intensity, self-efficacy, coping, and patient participation were studied.
BACKGROUND
Physiotherapy perspectives in pain rehabilitation
Musculoskeletal pain is experienced as discomfort in the body, and often related to limitations to use the body, which entail that patients with musculoskeletal pain often consult with a physiotherapist for explanations of symptoms and guidance of self-care, as well as for participating in rehabilitation (Breivik et al., 2006). Physiotherapy focuses on the patient’s need to develop, maintain, and restore maximum movement and functional ability, as well as to overcome participatory restrictions throughout the lifespan. Movements are the core in physiotherapy and essential to health and well-being (Broberg & Thyni-Lenné, 2010; World Confederation for Physical Therapy, 2011). Health and well-being are explained from a holistic view, as complex and dynamic processes where biological, emotional, cognitive, and social factors interact (Broberg & Tyni-Lenné, 2009; WHO, 2001). Physiotherapy, as a profession and as a science, emphasizes the patient’s active participation in treatment and decision making (World Confederation for Physical Therapy, 2011). In line, with the International Classification of Functioning, Disability and Health (ICF), physiotherapy emphasizes the interpersonal interactions and relationships with the patient, as well as with other healthcare professionals and other persons significant to the patient (World
Confederation for Physiotherapy, 2011). High quality patient – physiotherapy interaction has been found to correlate to treatment effects of pain and disability, as well as physical and mental health (Hall et al., 2010). The interactions are known to improve by the
physiotherapists’ sensitivity to identify and acknowledge the patients’ emotions and body language (Gard & Gyllensten, 2000). A close interaction between the patient and the physiotherapist is needed to develop a mutual understanding, determine needs and to formulate goals in the rehabilitation (World Confederation for Physiotherapy, 2011; Broberg & Tyni-Lenné, 2010). The physiotherapy process in patients’ behaviour change has been described as a reasoning process with focus on the patient’s prioritized activity-related behaviour. Activity-related behaviour as a concept encompasses the patient’s movements, thoughts, and emotions that are needed to perform a specific task and that are affected by both physical and social context (Elvén et al., 2015). Physiotherapists interact with patients both individually and within interdisciplinary rehabilitation (World Confederation for Physical Therapy, 2011).
Patient participation
Patient participation is a complex concept with many dimensions (Cahill, 1996; Eldh et al., 2010; Heinemann et al., 2010; Longtin et al., 2010). It may include all levels of the healthcare system, and the connotation of patient participation differs with perspective (Eldh et al., 2010; Heinemann et al., 2010). From a patient’s perspective patient participation is applied to various areas of healthcare, such as the attending of treatments, decision-making, and self-care (Cahill, 1996; Eldh et al., 2010; Longtin et al., 2010). A fundamental definition of patient participation is to take part in and to be involved in one’s own healthcare (Government Offices of Sweden, 1982; Cahill, 1996; World Health Organisation (WHO), 2001; Eldh et al., 2010; Longtin et al., 2010; The Swedish Agency for Health and Care Services Analyis, 2012). Further, frequent attributes of patient participation that has been reported are the
individualized patient –healthcare professional interaction which is built on communication and where the healthcare professional surrenders power and/or control to the patient, and the patient is engaged to some extent in their healthcare process (Cahill, 1996; Frosch et al., 1999; Mead & Bower, 2000; Stewart et al., 2003; Street et al., 2009). However, many patients wish to be more involved in their healthcare (Little et al., 2001; Bastiaens et al., 2007).
Patient-centered medicine was introduced by Moira Stewart in the 1970s, as a contrast to disease-centered medicine which was based on the biomedical model of understanding illness through medical expertise. Patient-centered medicine had the patient – healthcare professional interaction in focus (Stewart et al., 2003; Illingworth, 2010), and with time it has been developed into a theoretical framework and a clinical method (Mead & Bower, 2000; Stewart et al., 2003; Illingworth, 2010; Hudon et al., 2012). Dimensions of patient-centered medicine have been found to associate with treatment adherence and results, as well as with health outcomes (Stewart, 1995; Stewart et al., 2000; Alamo et al., 2002; Robinson et al, 2008; Dibbelt et al., 2009; Dillon., 2012). Today, patient-centered medicine has been acknowledged as one key element of high-quality healthcare (Robinson et al., 2008; Epstein & Street, 2011; The Swedish Agency for Health and Care Services Analysis, 2012; Government Offices of Sweden, 2013).
Patient-centered medicine
A variety of terms are used interchangeably to express the idea of patient-centered medicine: patient-, person-, client-, individual-/-centred, - centredness, -oriented, -focused, -directed/-medicine, -care (Slater, 2006; Leplege et al., 2007; Morgan & Yoder, 2012). Patient-centered medicine, and person-centered care or person-centredness, are most recurrent. The suffix – centered, or -centredness indicates how the patient or person is in the midpoint of
consideration in their healthcare (Slater, 2006). Although, the different concepts of patient-centered medicine have been defined to be like surrogate terms with many attributes in common (Slater, 2006; McCormack et al., 2010; Morgan & Yoder, 2012), there is a debate about which concept to use. While patient-centered is described as visited-based, meaning that the focus is on the communication in the specific patient – healthcare consultation, person-centered emphasize the long-standing relationship over time that provides accumulated knowledge of the patient and the forming of partnership (Ekman et al., 2011; Starfield, 2011). Mead and Bower (2000) included “to meet the patient over time” as an important aspect of patient-centered medicine, together with forming the patient - healthcare professional relationship (Mead & Bower, 2000; Stewart et al., 2003; Hudon et al., 2012). The using of the term “person” instead of “patient” have been considered significant since this indicates the shift away from the patient as a passive part to being more involved in decision-making (Ekman et al., 2011). “Person” defines a human being, which remains an individual, while the term “patient” immediately recognize a person who is sick and in need of medical treatment (Slater, 2006). In addition, the legal aspect of using person or patient has been considered. A person is legally responsible for his own acts and behaviours, which suggests an increased subjectivity and that the individual’s rights are taken into account in the healthcare situation (Leplege et al., 2007; Ekman et al., 2011). However, the person as a patient has a legal status in the Swedish healthcare system (Government Offices of Sweden,
1982), which may be important to consider. The patient’s autonomy, integrity, and equality is in focus (Government Offices of Sweden, 1982), and the patient as a unique person with motivation to participate in decisions about their own healthcare is emphasized (Governments Offices of Sweden, 2013).
In this doctoral thesis I have chosen to use the term patient-centered medicine, and I will define the concept by integrating three models of patient-centered medicine/care (Stewart et al. 2003, Mead & Bower, 2010, Hudon et al., 2012), and three models of person-centered care/person-centredness (Slater, 2006; Leplege et al., 2007; Morgan & Yoder, 2012). Table 1 show each model with key components.
The text below represents my consideration of the content in these six models.
The biopsychosocial perspective
The biopsychosocial perspective (Mead & Bower, 2000; Leplege et al., 2007) and the holistic approach (Leplege et al., 2007; Morgan & Yoder, 2012) have been emphasized in patient-centered medicine in order to acknowledge the consequences of living with disease, as well as to broaden the understanding of illness. The whole person means the biological,
psychological, social, and spiritual aspects of an individual (Morgan & Yoder, 2012). Mead & Bower (2000) declared that the biopsychosocial perspective provides for explanations for illness when no pathology or medical parameters are found. In addition, the biopsychosocial perspective supports a healthcare professional’s willingness to become involved in all aspects of the patient’s health problem, not just their biomedical problems. According to Stewart et al. (2003) the biopsychosocial perspective is fundamental in patient-centered medicine, even though it is not represented with a component of its own.
Exploring the disease, the illness experience, and understanding the patient as a person
The distinction between disease, which is the diagnosed condition, and the patient’s illness experience - feelings, ideas, function, and expectations – is emphasized by Stewart et al. (2003). Both the disease and the illness experience need to be explored in order to fully understand a patient’s situation (Stewart et al., 2003; Leplege et al., 2007). Hudon et al. (2012) emphasized the importance of having the illness experience legitimized by the healthcare professionals, by acknowledging the patients’ symptoms, as well as their struggle, grief and uncertainty about the future (Hudon et al., 2012). To understand the illness experience healthcare professionals need to start from the patient’s situation, understand the patient as a whole person and to be aware of the unique social and developmental context in which a patient lives (Mead & Bower, 2000; Stewart et al., 2003; Slater, 2006; Leplege et al., 2007; Hudon et al., 2012; Morgan & Yoder, 2012). To also identify a person’s strengths and resources, and not only the restrictions, was highlighted by Slater (2006). The person’s emotional and cognitive needs (Slater, 2006; Leplege et al., 2007), as well as the person’s values (Slater, 2007) need to be recognized to understand the present life world of the person (Slater, 2006; Leplege et al., 2007). Information and knowledge about the patient as a person is accumulated over time and is necessary to individualize healthcare, as well as to help the patient to take control and to make decisions (Mead & Bower, 2000; Stewart et al., 2003; Leplege et al., 2007; Morgan & Yoder, 2012). In cases with severe and cognitive disease, family members or significant others narratives can ensure that the personhood is
acknowledged (Slater, 2006). The understanding of the patient as a whole person have been found to associate with adherence to treatment, patient satisfaction and improved health (Safran et al., 1998). Exploring the patient’s illness experience increased a patient’s trust in their healthcare professionals (Fiscella et al., 2004), and Larsson et al. (2007) found that satisfying patient participation involved the patient being confirmed and acknowledged as a person.
Shared decision making through establishing common ground and acknowledging the patient’s expertise
Morgan and Yoder (2012) emphasized that the patient’s right and competence to make decisions about their own care must be respected, and that participating in such decisions empowered the patient (Leplege et al., 2007; Morgan & Yoder, 2012). The healthcare professionals need to acknowledge the patient’s expertise of their own lives, and believe in the patient’s capacity and resources to manage their own situation (Mead & Bower, 2000; Hudon et al., 2012). Stewart et al. (2003) emphasized that the patient and the healthcare professional need to establish common ground to consider the patient’s condition and needs for healthcare. In the process of finding common ground, both the patient’s point of view, as well as the healthcare professional’s point of view need to be taken into consideration. The focus is on mutuality in planning and prioritizing treatment, decision making, and setting goals, but the healthcare professionals’ sensitivity to timing and individuality is important (Stewart et al., 2003). The consequences of patient – healthcare professional mutuality in decision-making were acknowledged by Mead and Bower (2000) as a gap in medical knowledge between the patient and the healthcare professionals which implied an asymmetrical co-operation. They wanted a shift from the dominance of the healthcare professionals’ medical skills and knowledge, to the recognition of the patient’s needs and preferences (Mead & Bower, 2000). Slater (2006) and Leplege et al. (2007) emphasized that cognitive impairment may reduce the person’s ability to make choices, but that each person’s reflections on the available choices must be recognized. Decisions about healthcare must be made with respect for the person, not just a patient in need, and reflect healthcare
professional’s ethical standards of autonomy, dignity and privacy of the person (Slater, 2006). Gyllensten et al. (1999) found that satisfying patient-healthcare professional interaction involves health professionals establishing common ground in the interaction, through sensitivity, confidence, and professional expertise. Robinson et al. (2008) demonstrated that having respect and understanding for the patient’s point of view was strongly correlated to adherence with treatment.
Developing an ongoing therapeutic patient – healthcare professional relationship
To develop a strong patient – healthcare professional relationship is important in patient-centered medicine (Mead & Bower, 2000; Stewart et al., 2003; Slater (2006); Leplege et al., 2007; Hudon et al., 2012; Morgan & Yoder, 2012). For strong patient – healthcare
professional interaction, there must be a readiness to form a therapeutic relationship built on respect, compassion, empathy, support, trust, continuity and stability (Mead & Bower, 2000; Stewart et al., 2003; Slater 2006; Leplege et al., 2007; Hudon et al., 2012; Morgan & Yoder, 2012). Such a relationship develops over time (Stewart et al., 2003; Hudon et al., 2012), and the healthcare professional needs to adjust their role in the relationship to the patient’s own role preference and capacities (Hudon et al., 2012). The relationship is non-judgemental and not one of power (Slater, 2006), and its purpose is to help the patient and to enhance their self-efficacy (Stewart et al., 2003). A negative attitude and behaviour from the healthcare professionals, together with lack of empathy and sensitivity, have been found to reduce the patient’s self-efficacy in the patient – healthcare professional interaction (Waddell & Burton, 2005; Larsson et al., 2011). Safran et al. (1998) demonstrated that patients’ trust in their
healthcare professionals was associated with adherence to treatment, patient satisfaction and improved health.
Acknowledging the influence of the healthcare professional’s subjectivity
Mead and Bower (2000) presented the healthcare professional-as-a-person dimension in patient-centered medicine, to point out the influence of a healthcare professional’s personal qualities and subjectivity in the patient – healthcare professional interaction. In patient-centered medicine both the patient and the healthcare professional influence each other all the time and the healthcare professional’s subjectivity should not be disregarded (Mead & Bower, 2000). Finset (2012) has also acknowledged the influence of both healthcare professionals’ and patients’ emotional and cognitive status and personal qualities in the patient – healthcare professional interaction.
Health promotion and participation in everyday life
Prevention and health promotion have been identified as a component in patient-centered medicine by Stewart et al. (2003). The patient’s participation in health promotion and disease prevention may be more successful in patient-centered medicine, by respect and
understanding of the patient’s world, empowering the patient, and using the patient – healthcare professional relationship as a facilitator (Mead & Bower, 2000; Stewart et al., 2003; Hudon et al., 2012; Morgan & Yoder, 2012). The patient’s knowledge, beliefs, and self-efficacy in relation to health and illness, may influence the effects of health promotion and disease prevention (Stewart et al., 2003). Leplege et al. (2007) emphasized that a patient may have difficulties in everyday life and that interventions should have a subjectively perceived significance and focus on activities of daily living in real life. In addition, environmental restrictions to participate must be acknowledged (Leplege et al., 2007).
Providing advocacy, realism, and hope into the patient’s healthcare
Hudon et al. (2012) identified the importance of providing advocacy for the patient in the healthcare system dimension, which involves the healthcare professional as a co-ordinator and guide for the patient through the healthcare system. Referral to clinical examinations and treatments, as well as to support groups and other community-based services, are included in this dimension. In addition, the healthcare professional acts as a defender of the patient’s interest and safety in the healthcare system (Hudon et al., 2012). Stewart et al. (2003) consider realism and responsiveness to changes into patient-centered medicine, for example personal and economical resource distribution and advances in medical research. The health
professional’s awareness of one’s own ability, effective inter- and multi-professional teamwork, as well as time and timing, were important and may influence the patients’ opportunities to participate (Stewart et al., 2003). Hudon et al. (2012) emphasized that the healthcare professionals give the patient hope and support, as well as options for the future.
In summary, I find that patient-centered medicine focus on the patient – healthcare professional interaction based on a biopsychosocial foundation. Healthcare professionals’ expertise includes the understanding of the patient as unique person, as well as of their diseases and illness experiences. Further, patient-centered medicine emphasize the healthcare
professionals’ sensitivity and readiness to form a therapeutic relationship based on trust and respect to enhance the patient’s self-efficacy to participate in decision-making and self-care. This is in line with the ICF (WHO, 2001) statements that the healthcare system and the healthcare professionals’ attitudes, behaviour, and support influence an individual’s ability to function. Further, social interactions and relationships, communication and dialogue, applying knowledge, and making decisions, are classified by ICF as participation components that influence health. Thereby I consider that patient participation can be understood as a social concept and I find the social cognitive theory relevant to my research.
Social cognitive theory and self-efficacy
The social cognitive theory started as the social learning theory, but as the focus was on human cognitions in the theory, the term was changed. Social cognitive theory stipulates that human learning is most effective in social contexts (Bandura, 2001; Bandura, 2004), and has become one of the most influential theories of learning and development, as well as the predecessor to cognitive behavioural therapy (CBT). Social cognitive theory was
distinguished from traditional behaviourism by the emphasis on cognitive processes. Bandura stated that acquiring new information did not always lead to changed behaviour.
Observational modelling, where individuals may learn new behaviour by watching significant other people behave, as well as by listening to verbal instructions of descriptions and
explanations of behaviour were demonstrated to have positive influence. Also, internal thoughts and cognitions, self-reflection and self-regulatory processes were acknowledged to reinforce and modify learning and behaviour (Bandura, 2004). An individual’s self-efficacy beliefs have become a significant component in the social cognitive theory, as they influence thoughts, cognitions, motivation, behaviour and actions, as well as an individual’s
opportunities to learn (Bandura et al., 1977; Bandura, 2001; Bandura, 2004). Self-efficacy can be defined as an individual’s beliefs in their capabilities to accomplish a goal-related task, and is developed throughout the lifespan by acquiring new skills, experiences, and understanding. An individual judge their efficacy mostly through performance outcomes (Bandura, 1977), and there is a positive relationship between self-efficacy and behavioural changes (Bandura et al., 1977). Further, performing well in one task will increase self-efficacy to achieve similar tasks, and the individual is likely to put in more effort and improve their results. Experiencing a failure in performance may reduce self-efficacy and result in the avoidance of challenging tasks (Bandura, 1977).
In line with both patient-centered medicine and social cognitive theory a patient’s self-efficacy beliefs may be necessary prerequisites to patient participation. The healthcare professionals’ attitudes and behaviour may influence the patient’s self-efficacy (Waddell & Burton, 2005; Larsson et al., 2011). An individual’s self-efficacy is also influenced by the individual’s perceptions of emotions and bodily sensations, while feeling more at ease with a task results in higher self-efficacy beliefs. In contrast, feeling insecure before performing a task may reduce self-efficacy beliefs in similar situations in the future. Receiving verbal encouragement from others when performing, or witnessing an individual similar to one-self successfully performing a task, may increase efficacy (Bandura, 1977). Higher self-efficacy has been found to mediate a positive treatment outcome (Turner et al., 2007; Börsbo
et al., 2010; Costa et al., 2011), and increase the use of more active coping strategies, as well as increase self-care (Bandura, 2004; Jensen, Nielson, et al., 2003).
Coping strategies and pain catastrophizing
In pain rehabilitation the individual’s psychological factors are important to consider (Linton, 2000; Jensen, Nielson, et al., 2003; Linton & Shaw, 2011). A patient’s negative emotions and cognitions may be involved in the transition from acute to persistent musculoskeletal pain (Boersma & Linton, 2002), and affect the opportunities to recover from pain conditions (Linton & Shaw, 2011). The pain experience includes emotions, cognitions, and behaviour. Emotions of pain involve feelings of discomfort and the initial awareness of a noxious stimulus. Cognitive processes include thoughts about the pain, the appraisal and interpretation of the pain, which determine the actions and behaviours in relation to that pain (Folkman & Moskowitz, 2004; Linton & Shaw, 2011). Such cognitive processes are often referred to as coping strategies (Rosentiel & Keefe, 1983; Quartana et al., 2009; Linton & Shaw, 2011). Coping strategies involve the complex processes of emotions, thoughts and actions that an individual use in all situations in life, to manage internal and external demands that are appraised as stressful. Coping involves the person and the environment, and the relation between, and coping skills develop over the lifespan (Folkman & Moskowitz, 2004). In general, coping strategies have been described as problem-focused coping, which involves addressing the problem causing distress, and emotion-focused coping, which aim to ameliorate the negative emotions caused by the distress (Folkman & Moskowitz, 2004).
Pain catastrophizing describes a mal-adaptive cognitive strategy in relation to pain, which may have a negative impact on treatment outcomes and an individual’s functioning (Linton, 2000; Jensen, Nielson, et al., 2003; Quartana et al., 2009; Börsbo et al., 2010; Linton & Shaw, 2011; Miles et al., 2011). Pain catastrophizing include negative feelings about pain which may fuel negative thinking about pain, and can lead to a cognitive trap with exaggerated and irrational thinking about their pain (Linton & Shaw, 2011). There are different domains of catastrophizing: rumination, magnification, and helplessness (Sullivan et al., 2001; Craner et al., 2016). Rumination and magnification correspond to a primary appraisal of the pain sensation and evaluate it as threatening, and helplessness reflect the individual’s perception of not being able to cope with the pain (Sullivan et al., 2001). Rosentiel & Keefe (1983) defined the helplessness dimension of catastrophizing, the individual’s pessimism about the ability to cope with pain, with a set of items in the Coping Strategies Questionnaire (CSQ) (Rosentiel & Keefe, 1983; Quartana et al., 2009). Bandura stated that helplessness occurs when the
individual give up to carry out actions due to beliefs that the action will be inefficient or have no impact, as well as beliefs of punishment. To overcome helplessness, individuals must little by little engage in experiences that build confidence and support self-efficacy (Bandura et al., 1977; Bandura, 2004). Higher pain catastrophizing has been found to associate with lower self-efficacy (Shelby et al., 2008), as well as to other negative health conditions, such as depression, anxiety, negative mood and worry (Quartana et al., 2009). In addition, pain catastrophizing has been found to affect how patients perceive and interpret healthcare professionals’ information of the biopsychosocial perspective of pain (Overmeer & Boersma,
2016). Also, pain catastrophizing has been found to involve insecurity, dependency and support seeking in interpersonal interactions (Lackner et al., 2004; McWilliams et al., 2007).
Persistent musculoskeletal pain
Persistent pain is defined as pain that has lasted past normal tissue healing time (International Association for the Study of Pain, 1986), and with duration of at least three months, or recurrent episodes of pain (The Swedish Council on Health Technology Assessment, 2010). The biopsychosocial model of health explains persistent pain as a complex and dynamic process where biological, emotional, cognitive and social factors interact, and offers an understanding of the development and prediction of persistent pain (Bickenbach et al., 1999; Linton, 2000; WHO, 2001; Boersma & Linton, 2002; Waddell & Burton, 2005; Gatchel et al., 2007).
Living with persistent pain may include experiences of social withdrawal due to physical and psychological fatigue, and problems to cope with daily life (Werner & Melterud, 2003; Sallinen et al., 2011; Cedraschi et al., 2012; Dow et al., 2012; Bunzli et al., 2013). Patients with persistent musculoskeletal pain often need to seek healthcare on a regularly basis (Breivik et al., 2006). When seeking a healthcare professional, patients usually have
expectations of the encounter (Stewart et al., 2003), such as to receive an explanation for the symptoms and to have their disorder confirmed by the healthcare professionals (Werner & Melterud, 2003; Verbeek et al., 2004; McDermott et al. 2011; Stenberg et al., 2012). In addition they may have their own hypothesis about their problems (Stewart et al., 2003), and wish for opportunities to actively participate in the communication with the healthcare professionals (Persson et al., 2011). However, patients often perceive persistent pain as an “invisible” condition and they find it difficult to communicate their pain with healthcare professionals and others, as well as to be acknowledged as patients (Dow et al., 2012). Patients may experience mistrust and dismissal from the healthcare professionals regarding their pain (Werner & Melterud, 2003; Breivik et al., 2006), as well as lack of involvement in their rehabilitation process (Melander Wikman et al., 2006).
I consider that rehabilitation of persistent musculoskeletal pain need to be based on a biopsychosocial explanation of pain, and include the strengthening of the individual’s intrinsic resources, for example self-efficacy, to increase participation in healthcare and life, and to enhance self-care. Multimodal rehabilitation and web-based interventions for pain management are treatments with potential to fulfil such attributes.
Multimodal rehabilitation
In accordance with the biopsychosocial model and cognitive behaviour theory principles, effective interdisciplinary and multi-professional treatment, such as multimodal rehabilitation (MMR) for persistent pain, has been developed (Guzman et al., 2001; Gatchel et al., 2008; The Swedish Council on Health Technology Assessment, 2010; The National Board of Health and Welfare, 2011). The treatment content in MMR can vary, but includes at least a physical (body exercises) and a psychosocial (psychological, social, or occupational) component (Guzman et al., 2001; Scascighini et al., 2008). The patient and the team of healthcare
professionals, co-ordinate the interventions towards a mutual goal with focus on participation in daily life and/or work. The patient’s active participation in treatment, rehabilitation planning and decision making are emphasized (The Swedish Council on Health Technology Assessment, 2010; The National Board of Health and Welfare, 2011; Swedish Association of Local Authorities and Regions, 2012; Hållstam et al., 2015). Psychological factors, such as a patient’s motivation and self-efficacy, need to be considered in MMR. In Sweden, multimodal rehabilitation is provided within primary healthcare as well as in the specialized healthcare. Patients with complex pain conditions, in combination with moderate psychological symptoms are treated at primary healthcare centres (The National Board of Health and Welfare, 2011).
MMR has been reported to reduce pain intensity and improve functioning (Guzman et al., 2001; Sjöström et al., 2013; Kamper et al., 2015), as well as to reduce social costs with fewer days of sick leave (Busch et al., 2011), compared to standard treatment. However, some reports have demonstrated ambiguous and mixed results (Guzman et al., 2001; Kääpä et al., 2006).
Web-based interventions for pain management
Web-based interventions for pain management, modelled on behavioural theory literature and effective face-to-face treatment (e.g. cognitive behavioural therapy), have been developed (Barak et al., 2009; Macea et al., 2010; Rini et al., 2012; Eccleston et al., 2014). Such interventions have been suggested to increase patient participation by enabling patients to play a more active role in their rehabilitation (Forkner-Dunn et al., 2003; Eysenbach, 2008; Murray et al., 2010; Samoocha et al., 2010; Rini et al., 2012).
A web-based intervention was defined by Barak et al (2009):
“a primarily self-guided intervention programme that is executed by means of a prescriptive online programme operated through a website and used by consumers seeking health- and mental-health related assistance. The intervention programme itself attempts to create positive change and or improve/enhance knowledge, awareness, and understanding via the provision of sound health-related material and use of interactive Web-based components”
The web-based intervention includes program content, use of multimedia, interactive online activities, guidance and supportive feedback (Barak et al., 2009). A therapist-guided (human-supported) intervention have active involvement of a healthcare professional which deliver motivational messages, assist in problem solving, provide feedback, or follow-up to maximize adherence. In self-guided interventions the users have no therapist support, but there may be interactive tools for symptom monitoring, use of skills, and online assessments (Barak et al., 2009; Rini et al., 2012).
Web-based interventions for pain management based on cognitive behavioural therapy show promising treatment effects regarding pain and physical and psychological functioning (Macea et al., 2012; Eccleston et al., 2014; Buhrman et al., 2016). In addition, web-based interventions may have a positive impact on mediators of behaviour change, for example
self-efficacy (Wantland et al., 2004; Murray, 2012). However, most studies on web-based interventions had participants recruited from waiting lists and/or advertising, and evaluations of programs integrated in clinical practice are lacking (Macea et al., 2010; Rini et al., 2012; Eccleston et al., 2014). In addition, high rates of drop-outs and non-usage attrition have been reported (Eysenbach, 2005; Macea et al., 2010; Bossen et al., 2013; Ludden et al., 2015). It has been demonstrated that characteristics of the user, such as motivation, symptom panorama, and education level, as well as characteristics of the web-based intervention, the flexibility of the program and how it is connected to specific personal needs of different persons, influence web-adherence (Bossen et al., 2013; Ludden et al., 2015). Further research on feasibility of web-based interventions are needed (Eccleston et al., 2014), and there are few studies on patients’ participation in web-based interventions. Samoocha et al. (2010) have evaluated components often linked to patient participation, such as self-efficacy, mastery, perceived control, perceived competence, and involvement in the decision-making process, in order to investigate web-based interventions potential to increase patient empowerment compared with usual care. They found positive but small effects in favour of web-based interventions (Samoocha et al., 2010).
RATIONALE
Patient participation is a concept frequently used to describe the patient’s opportunities to take part or to be involved in their healthcare. Patient-centered medicine provides a model of patient participation, which has been recognized as a key element of high-quality healthcare. Patient-centered medicine is based on a biopsychosocial perspective of health and focuses on the patient – healthcare professional interaction. The interaction is characterized by forming a therapeutic relationship and shared decision making, in which both the patient’s and the healthcare professional’s competence and personal qualities are important. The patient’s experiences of illness, and their uniqueness as a person are in focus. In physiotherapy, as a profession and as a science, the patient – physiotherapy interaction is integrated in the physiotherapy process. Although, patient participation is known to influence treatment adherence and results, as well as patient health outcomes from treatment, yet patients have reported a lack of involvement, as well as experiences of mistrust and dismissal in interactions with healthcare professionals.
Treatment for persistent musculoskeletal pain, such as MMR and web-based interventions, need to be based on a biopsychosocial model and to have a cognitive behaviour approach in treatments. In MMR, patient participation and the patient’s opportunities to interact with the healthcare professionals in setting treatment goals, rehabilitation planning, and decision making, is emphasized. However, there is little knowledge about the patients’ experiences of patient participation within their rehabilitation, as well as about their experiences of patient participation prior to MMR. Having treatment by a self-guided web-based intervention for pain management may entail different experiences of patient participation. The patient’s interaction is with the web-based intervention, instead of with healthcare professionals. There is a lack of research of patients’ experiences of patient participation in web-based
interventions. Exploring patients’ experiences of patient participation prior to MMR, within MMR, and within MMR in combination with a self-guided web-based intervention, may increase knowledge of patient participation and provide insights for healthcare professionals treating patients with persistent pain, as well as for providers of web-based interventions.
The effects of web-based interventions for pain management are mostly based on studies with optional participation, and there is a need to investigate effects of web-based interventions integrated in clinical practice. MMR and web-based interventions focus on supporting a patient’s behaviour change in relation to pain, which may include to control pain and to cope with the pain in daily life and work. Self-efficacy and catastrophizing are known to influence both patient participation and treatment outcomes. By using quantitative methods in one study, effects of MMR in combination with a self-guided web-based intervention on pain intensity, self-efficacy, and coping were investigated. In addition, efforts were made to quantitatively evaluate patient participation in the rehabilitation. The patient’s beliefs of own responsibility to manage their health condition, and self-efficacy to play an active role in the rehabilitation were in focus. This was a challenge since valid and reliable instruments to assess patient participation and/or patient-centered medicine have not yet been presented (Epstein et al, 2005; Hudon et al, 2011).
THE AIMS
The overall aim of this doctoral thesis was to explore experiences of patient participation in pain rehabilitation among patients with persistent pain, and investigate effects of multimodal rehabilitation and a self-guided web-based intervention.
The specific aims were:
to explore patients’ experiences of patient participation prior to
multimodal rehabilitation.
to explore patients’ experiences of patient participation within
multimodal rehabilitation.
to explore patient’s experiences of patient participation within
multimodal rehabilitation in combination with a self-guided web-based intervention.
to investigate web-based program adherence and feasibility, as well as
treatment satisfaction in multimodal rehabilitation in combination with a self-guided web-based intervention.
to investigate effects of multimodal rehabilitation in combination with a
self-guided web-based intervention on pain intensity, self-efficacy, coping, and patient participation.
METHODS
Study design
This doctoral thesis consists of four studies. In study I, II, and III qualitative research design was used to explore the diversity of patients’ experiences of patient participation (Öhman, 2005; Carter et al., 2011). In study IV, an RCT-design with two intervention arms: 1) multimodal rehabilitation in combination with the web Behaviour Change Program for Activity (web-BCPA) (MMR+WEB), and 2) multimodal rehabilitation (MMR), with follow-ups at 4 and 12 months, was performed to investigate treatment effects of the web-BCPA.
Table 2 demonstrate an overview of participants, study design, inclusion criteria, data collection, and data analysis.
Table 2. Overview of participants, study design, inclusion criteria, data collection, and
data analysis of the studies included in this doctoral thesis.
Study I and II Study III Study IV
Participants 14 women, 3 men (mean age 46 years)
15 women, 4 men (mean age 45 years)
84 women, 15 men (mean age 43 years)
Study design
Qualitative study Qualitative study RCT with two intervention arms: 1) MMR+WEB aand 2) MMRb
Inclusion criteria
MMR in accordance with the Rehabilitation Warrantyc
MMR in accordance with the Rehabilitation Warrantyc
ÖMPSQd work ability of at least
25 percent
familiar with written and spoken Swedish having access to
computer and internet having spent 15
minutes per module in at least five out of eight modules in the web-BCPAe
MMR in accordance with the Rehabilitation Warrantyc
ÖMPSQd work ability of at least
25 percent
familiar with written and spoken Swedish having access to
computer and internet
Data collection Qualitative interviews Data collected in 2010 Qualitative interviews Data collected in 2012 -2014 Self-administered questionnaire at baseline, 4 and 12 months. Data collected in 2011 -2015 Data analysis
Qualitative content analysis Qualitative content analysis Between-group analysis with non-parametric statistics (Mann-Whitney U test and chi-square test (Pearson), and parametric statistics (Repeated measures ANOVA and independant-samples T-test). Internal consistency analysis of scales with Chronbach’s alpha. a Multimodal rehabilitation in combination with the web Behaviour Change Program for Activity bMulitimodal rehabilitation
c The Rehabilitation warranty is for persons aged between 18 and 63 years with persistent or recurrent
musculoskeletal pain in the back, neck, shoulder and/or generalized pain with a duration of at least three months. MMR must comprise rehabilitation equal two to three times a week for six to eight weeks, and with the inclusion of physician and at least two healthcare professionals of different occupations.
d
Örebro Musculoskeletal Pain Screening Questionnaire. indicating psychosocial factors with an estimated risk of long-lasting pain and future disability (Boersma & Linton, 2002).
e
Study context
Traditional healthcare (I)
In-patient and out-patient healthcare for pain, at public and private primary healthcare centres and specialized healthcare units in Norrbotten.
Multimodal rehabilitation (MMR) (II - IV)
The MMR was characterized by synchronized treatments based on a biopsychosocial perspective of pain, and with the patient in focus. The MMR included treatments from physician, and at least two healthcare professionals of different occupation (e.g. nurse, occupational therapist, physiotherapist, psychologist or psychosocial counsellor). The healthcare professionals worked according to a cognitive approach for behaviour change (II – IV). In addition, the patient and the healthcare professionals were supported by a
rehabilitation coordinator in rehabilitation planning and in dialogue with the Swedish Social Insurance Agency (SSIA) (III, IV). The patient and the healthcare professionals met at team-conference meetings to draw up an individualized rehabilitation plan, which included identification of the patient’s resources and restrictions, formulation of goals, planning of treatments, as well as dates for follow-up. The goals with the MMR were to increase activity and/or participation in everyday life and/or work. The plan was documented by a standard form in the patient’s medical journal, and printed out to the patient (III, IV). The patients had the opportunities to invite significant others (a relative, an employer, an administrator from the SSIA or the Employment Service) to co-operate in the rehabilitation planning. Mutual decision-making and a patient’s active participation in MMR treatments and planning were in focus.
The minimum amount of treatments in MMR was specified to two to three times a week for six to eight weeks, including home exercises. The treatments were individual and/or in group sessions. In MMR physical activity (individualized exercise program, warm-water exercise, basic body awareness therapy), acupuncture, transcutaneous electric nerve stimulation (TENS) and manual therapy could be given by physiotherapists. Ergonomics, activity planning, and functional training were provided by occupational therapists. Psychologists and psychosocial counsellors were responsible for counselling treatment (II – IV). Counselling could also be provided for by healthcare professionals (nurse, occupational therapist, or physiotherapist) trained in cognitive behaviour therapy principles (III - IV). The physicians prescribed pharmacological treatment, wrote medical certificates and referrals. Patient education, relaxation, mindfulness, and testing disability aids were carried out by healthcare professionals of various occupations. The MMR treatment period was adjusted to the patient’s needs and progress. The healthcare centres were responsible for a patient’s medical
rehabilitation to progress in health, but not principally in charge of the work rehabilitation (II – IV).
The web Behaviour Change Program for Activity (web-BCPA) (III, IV)
The web Behaviour Change Program for Activity (web-BCPA) was administrated via the Livanda website, and was a modified version of the Livanda web-based program To manage
face-to-face cognitive behavioural therapy, and has been developed by psychologists of the Livanda company. In co-operation with the founders of Livanda, the To manage pain – program was revised into the web-BCPA with the aim to fit patients at an early stage of persistent pain. The web-BCPA aims to increase patients’ physical and cognitive activity in the rehabilitation, and to encourage physical activity and activity in everyday life and work. The patients self-guided the web-BCPA, without therapist guidance, and had freedom to choose from the program content. They had access to the program in their own environment twenty-four seven, for 16 weeks. Without patients’ active work in the web-BCPA for 20 minutes, they were automatically logged out. The web-BCPA firstly contained an overall introduction to cognitive behaviour therapy principles, information of the content and format of the entire program, as well as general advice on how to work in the web-BCPA (for example, to start with the reading of the texts and then to spend time on the assignments). The web-BCPA consisted of eight modules: 1) pain, 2) activity, 3) behaviour, 4) stress and thoughts, 5) sleep and negative thoughts, 6) communication and self-esteem, 7) solutions, and 8) maintenance and progress, which were delivered to the patient one module per week during the first eight weeks. The modules contained information, assignments and exercises,
assimilated via educational texts, videos, and writing tasks. Each module contained 10 to 15 shorter web pages of information and 10 to 15 pages of assignments and exercises (Table 3). Further, the assignments were interactive with the user and included tests and self-developed plans of action which included to map out resources and restrictions, to set goals and estimate goal achievement, to plan activities, and to follow up results. Help-texts with specific how to do instructions, as well as examples of goals and activities, were available to all assignments. The assignments life goals and values, activity scheduling, and planning behaviour change were examples of self-developed actions plans. Exercises were e.g. relaxation and body awareness exercises, with a duration of 10 to 30 minutes per session. In addition, the patients may have chosen any physical activity as part of the planning activity assignment. Assignments and exercises were constructed as a progression in cognitive skill building with each module. The patients chose their utilization of the web-BCPA freely, except for a well-being test which was mandatory to fill in to get access to modules 2 to 8. The well-being test measured harmony (as contrast to anxiety), energy level, optimism (as contrast to depression), and decisiveness. Data from the well-being test and the assignments were saved as summaries, which the patients could review to monitor progress. All texts and assignments could be printed out. With the patient’s choice a complementary well-being advice was sent to a patient’s e-mail box. In addition, the program included a CD with relaxation exercises, which was sent to their home address.
Table 3. Content of the web Behaviour Change Program for Activity (web-BCPA).
Module Educational texts Assignments and exercises 1.Pain Pain mechanism – anatomy
and physiology Persistent pain
Pain in the neck, back and shoulder
Life goals and values – health Activity scheduling
2.Activity Pain mechanism – thoughts, interpretation, behaviour Pain and physical activity Life balance
Ergonomics in everyday life Resting positions
Well-being test
Life goals and values – work, and leisure Daily exercise level test
Short exercise program Relaxation – breathing exercises Basic Body Awareness exercises
3.Behaviour Pain and learning behaviour Pacing
An active sick-leave
Well-being test
Life goals and values – close relationships, family, social relationships, and personal development
Planning activity
Planning behaviour change Body scan - applied relaxation Basic Body Awareness exercises
4.Stress and thoughts Accepting thoughts Stress and stress management
Well-being test
Planning behaviour change Stress test
Body scan – conditioned relaxation Basic Body Awareness exercises
5.Sleep and negative thoughts
Negative and automatic thoughts
Sleep, sleep hygiene and sleep disorders
Well-being test
Challenging negative automatic thinking styles
Sleep test
Body scan – conditioned relaxation Basic Body Awareness exercises
6.Communication and self-esteem
Communication skills Conflict resolution methods Self-esteem and self-confidence
Participation in healthcare
Well-being test
Effective communication training Setting limits
Dealing with difficult emotions Planning behaviour change Basic Body Awareness exercises
7.Solutions Problem solving methods in relationships
Problem solving traps
Well-being test
Problem solving practices Planning behaviour change Basic Body Awareness exercises
8.Maintenance and progress
Setbacks and relapses prevention
Maintenance
Well-being test
Planning behaviour change Maintenance plan and strategies Basic Body Awareness exercises
Participants, selection, and procedure
Inclusion- and exclusion criteria study I - IV
Participants were recruited from the primary healthcare in the Norrbotten County Council, Sweden. Participants eligible to study I - IV were in accordance with the guidelines of the Swedish Rehabilitation Warranty (Swedish Association of Local Authorities and Regions, 2012): between 18 to 63 years and with persistent or recurrent musculoskeletal pain in the back, neck, shoulder, and/or generalized pain with duration of at least three months. Further inclusion criteria in study I and II were that the participants had fulfilled MMR equal two to three times a week for six to eight weeks, and with the inclusion of physician and at least two healthcare professionals of different occupations, in accordance with the Swedish
Rehabilitation Warranty (Swedish Association of Local Authorities and Regions, 2012). Participants in study III and IV were selected on the medical evaluation that MMR in accordance with the Rehabilitation Warranty was needed. Additional inclusion criteria to study III and IV were: Örebro Musculoskeletal Pain Screening Questionnaire (ÖMPS4 , indicating psychosocial factors with an estimated risk of long-lasting pain and future
disability (Boersma & Linton, 2002), work ability of at least 25 percent, familiar with written and spoken Swedish, and having access to computer and internet. Exclusions criteria to study III and IV were: reduced cognitive ability, current abuse of alcohol or drugs, in need of other healthcare, and/or pregnancy. In study III participants with at least 15 minutes per module in five of eight modules in the web-BCPA were selected (Table 2).
Study I and II
The participants were patients that had completed MMR between September 2006 and May 2010 at one healthcare centre in Norrbotten. They were identified through a keyword for MMR in the registration of patient at the healthcare center. In total, there were 24 persons that fulfilled inclusion according to the Swedish Rehabilitation Warranty. They were provided with written information about the study and about an up-coming contact by telephone when they were to be asked for consent to participate. Seven persons declined participation. Seventeen agreed to participate and at time for the interview, the participants gave their written consent before they were interviewed. Background data (marital status, children, pain duration and localization, sick-leave) at time for the multimodal rehabilitation period was obtained from the patient records.
Fourteen women and 3 men between 23 to 59 years (mean age 46 years), and with persistent musculoskeletal pain in the back, neck, shoulder, and/or generalized pain for 2 to 30 years participated in study I and II. The majority of the participants were married or cohabit and had children in the household. One participant worked full-time when starting the rehabilitation. All others were on sick-leave ranging from at least one year to more than five years.
Study III
At time for the 4 months’ follow-up in the RCT (IV), eligible participants were informed about the interview study by the rehabilitation coordinator. Twenty-two out of 34 persons gave their oral consent to be contacted by the researcher for more details about the study. Finally, 19 participants from nine different healthcare centres agreed to participate and gave their written consent at time for the interview.
Fifteen women and four men between 27 to 60 years (mean age 45 years), and with persistent musculoskeletal pain in the back, neck, shoulder, and/or generalized pain for 5 months to 13 years (mean 7.5 years) participated in study III. Participants rated average pain intensity 67 (m) / 100 on the VAS, and had ÖMPSQ score of 130 (m). The majority were married or cohabit and about 50 percent had children in the household. The participants’ educational
level varied from elementary (1-9 years) to university education \HDUV About 60
percent had permanent employment and 12 (63 %) out of 19 were on sick-leave partly or full-time. The participants had in average spent 445 (m) minutes in the web-BCPA (range 88 to 841 minutes), and 13 (68%) persons had used all eight modules.
Study IV
Participants were recruited from 17 healthcare centres in Norrbotten. The rehabilitation coordinator at each healthcare centre selected the participants according to inclusion- and exclusion criteria, and provided oral and written information about the study. Once informed consent was obtained the participants filled in the baseline questionnaire, and were then randomized by numbered opaque envelopes to either MMR+WEB or MMR intervention. An independent statistician provided the allocation sequences by computer generated random number sequences for each healthcare centre and stratified for sex before inclusion of participants started.
Ninety-nine persons (85 women and 14 men) with a mean age of 43 (m) years participated in the study. They had pain duration for about 6.5 years with an average pain intensity of 65.5 (m) / 100 on the VAS. The participants in the MMR+WEB group had a significant higher ÖMPSQ score (m=136, SD 20, p=.01) than the MMR group (m=125, SD 24), and both groups had a self-rated overall health state of 46 / 100 on EuroQol VAS. A majority of the
participants was married or cohabit and about 50 percent had children in the household. The educational level was higher in the MMR+WEB group with 31 percent of the participants having university degree, compared to 20 percent in the MMR group. About 70 percent in the MMR+WEB group and about 60 percent in the MMR group had a permanent employment. Two third of the participants were on sick-leave partly or full-time.
Data collection
Study I and II
Data was collected from qualitative interviews, with the main purpose of exploring the patients’ experiences of patient participation in multimodal rehabilitation. The interviews were conducted in September to November 2010. Each participant was interviewed once, four months to three years after the end of the rehabilitation period. One participant was
interviewed at home due to their health conditions, and the others interviews took place at a conference-room at the local hospital. The interviews lasted between 50 to 80 minutes.
The interview began with an open question, “Please, tell me what patient participation is like for you?” The interviewer then continued with questions about the participant’s experiences of this in a multimodal pain rehabilitation context, using a semi-structured interview guide. Participants were allowed to talk about any dimensions they found important in the topic and to interpret the questions in their own way (Kvale, 1996). The narratives were rich and experiences of patient participation before the multimodal rehabilitation was highlighted, as a way to compare and clarify their perceptions of patient participation within the multimodal pain rehabilitation. All this data was found relevant for obtaining a deeper understanding of patient participation. Thus, it became important that all participants were given opportunity to express all kinds of earlier experiences of patient participation. This was ensured by adding questions to the interview guide. Questions that were used to collect data in Study I and Study II are presented in Table 4. In addition, some sequential questions were used to follow-up the patients’ answers, for example, “What do you think facilitates patient participation?” and “What do you think restricts patient participation?” All interviews were digitally recorded using an Mp3-recorder.
Table 4. Interview guide for study I and II – Experiences of patient participation prior to
and within multimodal rehabilitation.
Please, tell me what patient participation is like for you?
Can you tell me about your earlier experiences of patient participation before entering the multimodal rehabilitation?
x Please, tell me about a situation when you really participated in your healthcare? x Please, tell me about a situation when you did not participate in your healthcare? x Can you describe when participation in your healthcare was particularly important? x Can you mention a situation when the lack of participation was important for your
healthcare?
Can you tell me about your experiences of patient participation in the multimodal rehabilitation at the healthcare centre?
x Please, tell me about a situation when you really participated in your rehabilitation? x Please, tell me about a situation when you did not participate in your rehabilitation? x Can you describe when participation in your rehabilitation was particularly important? x Can you mention a situation when the lack of participation was important for your
rehabilitation?
Study III
Data was collected from qualitative interviews with the main purpose to explore patients’ experiences of patient participation in MMR in combination with the web-BCPA. The interviews were conducted in April 2012 to October 2014, at various healthcare centres and at a conference-room at the County council building in Norrbotten. One participant was
