Main article

Control perceptions in patients withrheumatoid arthritis: The role ofsocial support

Sarah Ryan, RGN, PhD, MSc1, AB Hassell, MD1, PT Dawes, MD1, and SallyKendall, PhD, BSc, RGN, RHV3

1Staffordshire Rheumatology Centre, Haywood Hospital, Stoke-on-Trent2Faculty of Health and Human Sciences, University of Hertfordshire, Hatfield,Hertfordshire

Abstract

Objective: To identify factors that patients perceive as influencing control in living withrheumatoid arthritis.Method: A sample of 40 patients with rheumatoid arthritis were randomly recruited froman outpatient population and partook in an in depth, qualitative interview by oneresearcher to identify control perceptions. The data were analysed utilizing Colaizzi’sprocedural steps.Results: Four major categories were identified that positively influenced control perceptions:● The reduction of physical symptoms.● Social support matching perceived need.● The provision of information.● The nature of the clinical consultation.Three components were identified in relation to social support:● Remaining involved in family activities.● Ongoing support from family members.● Achieving a balance between support needs and support provision.Conclusion: The categories identified can be influenced by practitioners enabling patientswith RA to obtain perceived control over their condition.

Key words: rheumatoid arthritis, qualitative interview, control perceptions.

Introduction

Rheumatoid arthritis (RA) is a chronic, progressive inflammatory conditionprimarily affecting the joints, causing widespread pain, stiffness and impaired

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function. The impact of the condition has psychological and social consequenceson mood, self-esteem, social relationships and work. Patients with RA are twiceas likely to suffer from depression when compared to the general population(Dickens and Creed, 2001) and it is estimated that one half to two thirds ofpeople with RA experience disrupted leisure activities and limitations in the workarena (Yelin et al., 1987). Patients with RA live with uncertainty regarding dailysymptoms, treatment outcomes and progression of the condition. Thisuncertainty, referred to as a psychological burden by Weiner (1975), is seen inother patients with chronic conditions including stroke patients (Close andProcter, 1999). Patients with more predictable chronic illnesses perceive a greaterlevel of personal control over their health than do patients with RA (Felton andRevenson, 1984).

Control perceptions in rheumatoid arthritis have clinical relevance. Anindividual’s loci of control may not alter the progression of a long-term disease buta perception of control over daily occurrences including pain and stiffness caninfluence mood and adjustment (Affleck et al., 1987). Researchers havedemonstrated that an individual’s perception of control in rheumatoid arthritis canhave a positive effect on well-being (Tennan et al., 1992; Smith et al., 1991;Affleck et al., 1987). Langer (1993) refers to control as the active belief that onehas a choice among responses that are differentially effective in achieving thedesired outcome. This may include an individual using relaxation rather thananalgesia for neck pain.

There are many psychologically based models of health behaviour (Bandura,1977; Rotter, 1966; Rosenstock, 1974) that endorse the viewpoint that theindividual makes a major contribution to health behaviour. Rotter (1966) states thatthe loci of control can be internal (dependent on the individual’s own character orbehaviour), external (dependent on the actions of other people) or viewed as amatter of luck or chance. In many chronic conditions including stroke, epilepsy andend stage renal disease (Close and Procter, 1999; Peterson et al., 1998; White andGrenyer, 1999) the individual’s perception of control is influenced by a combinationof external and internal factors. An external locus of control is often perceivednegatively in respect to health outcomes but in unpredictable chronic conditionseternal influences, including social support and the relationship with health careproviders, can positively influence individuals’ perception of control over their owncondition (Natterlund and Ahlstrom, 1999).

The primary aim of this research was to identify those factors that patientsperceive as being instrumental in enabling them to develop a perception of controlover living with the daily symptoms of the condition thus enabling health careprofessionals to adopt management strategies that have meaning within thepatient’s context.

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Methods

SampleThe sample consisted of 40 patients attending an RA review clinic in an outpatientdepartment over a three month period. The patients were reviewed by one of ateam of rheumatology doctors including one consultant rheumatologist and threespecialist registrars. This clinic caters for patients with the whole spectrum of RAseverity. Only patients with a diagnosis of RA, as determined by therheumatologist in accordance with American Rheumatology Association criteriawere recruited (Arnett et al., 1998).

A convenience sampling technique was employed whereby every secondpatient was approached as they registered for clinic. The approach was made bya research assistant, who gave out the information sheet and obtained consentfrom the participants. Of all the potential participants who were approached,only two declined to take part. Potential participants with a disease duration ofless than four months were excluded as they would have a limited diseaseexperience to reflect on. Ethical approval was obtained from the local researchethics committee.

HermeneuticsA hermeneutical approach was adopted. Hermeneutics is one particular limb ofqualitative methodology. Its major objective is to obtain understanding of thesituation or experience under investigation through a ‘fusion’ (Gadamer, 1975) of allrelevant sources of data including literature review, personal experience of theinterviewer and interview data. The purpose of this approach is not to predict orgenerate theory but to understand what factors influence patients’ perceptions ofcontrol over the daily symptoms of their arthritis by drawing from the participants avivid picture of their experiences regarding arthritis.

The interviewThe 40 participants were interviewed once, in depth, by one researcher. Five pilotinterviews demonstrated the need for a semi-structured interview as participantsfound this a complex area to explore. The aim of the interview, based onhermeneutic principles, was to identify and understand the factors that influenceperceived control over the daily consequences of RA. The questions utilized werenon-directive so that the participants were able to tell their stories in whicheverway they wished (Koch, 1996). The semi-structured interview schedule (Table 1),generated from the researcher’s reading of the literature was reviewed by a panel ofrheumatology health professionals and members of the local arthritis support groupto assess content validity.

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Data analysisIn hermeneutics it is the inquirer’s responsibility to determine the framework foranalysis (Koch, 1996). The first level of analysis commences during the interviewitself and involves attentive reflective listening, thereby generating new questionsfrom the content and nature of the responses. Following completion, the interviewswere audiotaped and transcribed in their entirety utilizing Colaizzi’s (1978)procedural steps (Table 2). From the transcribed data, significant statements relatingto control perception were identified. This enabled clear themes to emerge whichwere classified into categories. To illustrate this process, one recurrent theme thatemerged from all the transcripts was the significance of social support. Eighty ninesignificant statements were identified that directly related to the influence of socialsupport on perceived control. Through exploring the significance of thesestatements, themes arose relating to the components of social support that impactedon control perceptions and enabled a defined category of the nature of social supportto be identified. This method of analysing the data enabled the contextual meaningof the nature of social support to emerge.

Validity was addressed in two ways. Firstly the interview transcripts werereturned to all 40 participants to confirm accuracy (a process referred to as member

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Table 1: The interview schedule

● How are you involved in the management of your arthritis?● Do you feel you can control any aspect of your arthritis?● What methods do you use to control the symptoms, e.g pain?● What factor influences whether you can control your arthritis?● How do you manage your arthritis on a bad day?● At what stage have you experienced control of the daily symptoms? Can you

describe the situation?● How do you know if your condition is improving?

Table 2: Colaizzi’s procedural steps

● Each participant’s verbatim transcript was read to acquire a sense of the whole● Significant statements and phrases pertaining to the experience of control were extracted

from each manuscript● Meanings were formulated from the significant statements. Creative insight was employed at

this stage to move from what the participant said to what they meant and to gainunderstanding from the encounter

● Formulated meanings were then organized into themes. The themes in turn evolved intotheme clusters and eventually categories were formed

● Results were integrated into an exhaustive description from which understanding andmeaning of those factors that influence control perception in living with the daily symptomsof RA were extracted

● The essential structure of the phenomena was formulated● Validation was sought from the study participants

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checking). Secondly, two fellow researchers reviewed eight of the interviewtranscripts to verify that the categories identified reflected the original data.

Results

A total of 40 patients were interviewed, 26 (65%) were female and 14 (35%) weremale. The mean age of the participants was 56.28 years (range 23–72); mean diseaseduration was 11 years (range 5–38) and mean duration of education was 10 years.

Four main categories relating to perceptions of control were identified from theinterview data. These were:

● Social support. ● Reduction in physical symptoms, e.g. pain and stiffness. ● The provision of information. ● The nature of the clinical consultation.

This paper focuses on the role of social support on perceived control. The roleof the other components are discussed in Ryan et al. (2003). The three main aspectsof social support identified from the data were:

● Remaining involved in family activities.● Ongoing support from family members.● Achieving a balance between support needs and support provision.

Family activitiesAll participants stated that it was important to continue to function in instrumentalactivities (cleaning, cooking, financial management and shopping) as well asmaintaining an active role in nurturing activities including making familyarrangements, maintaining family ties and looking after family members:

‘I may be slow but it is important for how I feel about myself to still do all thethings around the house. I know he can do the windows but it is not the same, I wantto do them.’ (P: 29)

‘I need to be in control. I have always looked after the children and with achange in my routine and my husband’s support I can still do so.’ (P: 22)

If participants are unable to perform in either of these role domains then it hada negative effect on self-esteem:

‘I can’t make the children their tea, whereas a normal mum would have the teaready for them.’ (P: 23)

‘When Jack was born, I was unable to lift him or tend to him. My husband, hadto do it and Jack now refers to his dad as his mum and that really hurts.’ (P: 26)

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Ongoing support from family membersParticipants viewed support as being important, not just in response to a specificneed but as an ongoing entity that incorporates both physical and emotional needs:

‘Without his continual support I wouldn’t be able to manage to look after thehouse, he has developed a sixth sense and knows when to help me.’ (P: 8)

‘It helps me to function knowing that the support is there all the time and notjust when I am having a flare up.’ (P: 39)

‘My wife is great; she listens, she understands, she is always there to support me,so is my daughter, somehow it helps you to feel you can do more to control thecondition with their support.’ (P: 35)

Achieving the balance between support need and provisionA discrepancy between need and provision led to some family members becomingover-protective, reducing the individual’s self-autonomy and reinforcing the conceptof powerlessness. In this situation inappropriate support became a form of socialcontrol:

‘They changed me into a disabled person and took all the control away. Itwas as if I didn’t have a mind. I wasn’t allowed to think or do anything, they feltI wouldn’t be able to cope because of the arthritis but I wasn’t even given achance to.’ (P: 15)

‘You would have thought that the arthritis would have affected my brain notmy joints, they all began to make decisions for me, deciding what I would wear, itwas horrible.’ (P: 33)

‘He became over-protective, maybe it was his way of coping but every time Iwent to do anything he would jump up and do it for me, saying he could do it a lotquicker. I know I was slow but I still wanted to be able to control things.’ (P: 4)

It took time for the family unit to adjust to the altered health of one of itsmembers but once all parties had a clear understanding of the level of supportrequired positive adaptation occurred:

‘It does take a lot of negotiating with each other, letting the family know you willask if you need help … but you need time to see if you can do it first, otherwise themore you let people do things for you the more you are losing yourself.’ (P: 5)

‘My husband was frightened at first. I think once we had read the leaflets anddiscussed it all it made it more manageable. I don’t know how I would havemanaged if I had been on my own I couldn’t turn taps on or put the handbrake onin the car.’ (P: 37)

‘We all had to adjust, the whole family had to realize that I couldn’t do all thethings I used to do and that the kitchen was no longer my domain.’ (P: 38)

The family also influenced whether treatment interventions were adhered to:‘I have given up trying to do the exercises I was given. They did help but my

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husband says I haven’t got time to carry them out, not with the children to lookafter.’ (P: 22)

‘Now that she can see how much exercise has helped me she joins in herself, ithas become something that we both enjoy doing together.’ (P: 10)

Discussion

Social support was identified as a major contributing factor positively influencingcontrol perceptions. Social support is regarded as a necessary component to promotephysical, psychological, social and emotional well-being (Wortman and Conway,1985). It involves interactions between individual and social networks to enabletangible and intangible benefits to be exchanged (Blazer, 1982). The functions ofsocial support are shown in Table 3.

Studies have found that patients who receive support from family and friendsexhibit greater self-esteem (Fitzpatrick et al., 1988) and better psychologicaladjustment (Affleck et al., 1987). They report improved life satisfaction(Burckhardt, 1985) and less depression (Revenson and Majerovitz, 1991). This studyidentified an additional role of social support, that of influencing an individual’sperception of control. This function of social support has been identified in studiesof patients with coronary artery disease and muscular dystrophy (Anderson et al.,1995; Natterlund and Ahlstrom, 1999).

The majority of work on perceived control in RA has adopted thepsychologically based approach evident in the many models of health behaviourincluding self-efficacy (Bandara, 1977), the health belief model (Rosenstock, 1974),and the locus of control (Rotter, 1966). All these approaches endorse the viewpointthat the individual makes a major contribution to health behaviour. But behaviourwill not only be influenced by the individual’s response to the situation but also willbe governed by the physical, social, cultural and economic environments in whichthe individual resides and works (Tones, 1991). Consequently, when seeking toinfluence control perceptions it is necessary to address both individual perceptionsand the context in which the individual resides.

Many chronic conditions are characterized by uncertainty in terms ofsymptoms, rehabilitation and outcomes (Close and Procter, 1999; White andGrenyer, 1999). This uncertainty will lead to control perceptions beingchallenged on a regular basis as patients find themselves facing new situations.Rotter’s (1966) locus of control theory, founded on general control expectationsthat develop over time, would be better suited to conditions that have someuniformity in symptom manifestation and outcome. In conditions such as RA anindividual’s control perceptions will be influenced by a multitude of sources ratherthan a single locus.

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The theory of reasoned action (Rutter, 1993) predicts that behaviour will beinfluenced by two factors. Firstly personal beliefs, what the individual regards as theconsequences of a particular action, and, secondly, normative beliefs, the perceptionof others about the particular action. This research demonstrated how powerful thefamily can be in determining whether treatment interventions such as exercise areadhered to. Radojenic et al. (1992) demonstrated that an intervention incorporatingfamily support was more effective in reducing pain than an intervention with thepatient alone.

Although Reisine (1995) found that it was the nurturant activities that weremost valued by patients, the participants in this study valued continuing to functionin both domains. Shaul (1995) identified that problem-focused support from thehealth professional was regarded by women with RA as the most helpful interventionin obtaining a perception of control over their arthritis, with emotional supportacquired from family and friends.

Two theoretical models discuss mechanisms of support, the stress bufferingmodel (Cohen and Wills, 1985), which views support as acting as a protective factorat times of crisis, while the direct effect model proposes that support is beneficialregardless of the amount of stress occurring. Participants in this study favoured thelater model, regarding ongoing support as being an important prerequisite forperceived control over their arthritis. Being able to turn to others for support mayreduce the effects of pain and functional impairment and alleviate the psychologicaldistress associated with them

Inappropriate support was viewed as a form of social control that had negativeconsequences for the individual, leading to feelings of helplessness. Hewlett (1994)identified that spouses of patients with RA often held negative perceptions of theirpartner’s condition. This may result from the exclusion of family members in thestages of care assessment, planning and implementation. Work by Kendall et al.(1999) has shown that carers of patients with epilepsy often feel excluded fromaspects of care management. The health professional may need to act as a mediatorand enable the family to negotiate what support it will provide. This should ensurethat the individual has a meaningful role within the family unit and is able toparticipate in self-management. Phelan et al. (1994) demonstrated that the negative

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Table 3: Functions of social support (Wortman and Conway, 1985)

● Expressing positive affect● Validating beliefs, emotions and actions● Encouraging communication of feeling● Providing information or advice● Providing material aid● Reminding the recipient that he/she is part of a meaningful group

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perceptions of partners could be improved following attendance at an educationprogramme aimed at improving knowledge about the condition.

This research has demonstrated that control perceptions are not static entitiesbut will be influenced by both internal and external factors. Participants oftenperceived that they were in control of their RA until they experienced an alterationto their situation which manifested either in their symptoms, e.g. pain, or in the levelof social support they were receiving. Either of these occurrences could alter theperception of control unfavourably.

This research did not seek to ascertain the family’s perception of factors thatinfluence their control perceptions. This area would warrant further explorationsince discrepancies between the individual and the family in terms of control factorscould adversely affect adaptation

A pragmatic decision was taken to recruit 40 patients. Arcury and Quandt(1998) state that although the sample size is usually estimated in advance, a finalsample size determination is made during the course of the research. It was only afterthe researcher had transcribed and analysed all the data that it was possible to suggestthat saturation had occurred after 30 interviews. Morse (1999) defines saturation asa repetition of discovered information and confirmation of previously collected data.

It is not possible to state how generalizable these findings would be to otherpopulations of RA patients. The participants were able to access a multidisciplinaryteam within a secondary care specialist centre. This system affords patients theopportunity to self-access a range of health professionals which, in itself, will influencetheir control perceptions regarding their care management. It is also not possible tostate the strength and magnitude of the components of social support identified, e.g.are all the components required or does the need for social support to match supportprovision have a greater weighting on control perceptions than the other components?

Conclusion

Social support can influence a patient’s perception of control. Health professionalscan take an active role in this area and ensure that support is discussed in theassessment process and, where indicated, family members are involved in subsequentcare planning and implementation.

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Correspondence should be sent to Sarah Ryan, Haywood Hospital, High Lane, Burslem, Stoke onTrent, ST6 7AG. E-mail: sarah@ryan1350.fsnet.co.uk

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