CPD Prepare for revalidation: read this CPD article and write a reflective account http://revalidation.zone
CONTINUING PROFESSIONAL DEVELOPMENT
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Rheumatoid arthritis multiple choice questionnaire
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Rebekah Richardson’s reflective account on end of life care
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Guidelines on how to write a reflective account
Psychological effects of living with rheumatoid arthritis NS771 Ryan S (2014) Psychological effects of living with rheumatoid arthritis. Nursing Standard. 29, 13, 52-59. Date of submission: August 11 2014; date of acceptance: September 12 2014.
Aims and intended learning outcomes
Abstract
Keywords
This article describes the psychological effects of living with rheumatoid arthritis, including reaction to diagnosis, anxiety and depression, body image, and the effects on work and family. It aims to increase understanding of the psychological implications of living with rheumatoid arthritis, and outline the nurse’s role in helping patients to manage symptoms and maintain psychological wellbeing. After reading this article and completing the time out activities, you should be able to: Identify common emotional reactions to a diagnosis of rheumatoid arthritis. Recognise the main factors associated with depression. Understand the nurse’s role in helping a person with depression. Be aware of the effect rheumatoid arthritis can have on social function, work and family. Outline the nurse’s role in managing fatigue.
Anxiety, body image, depression, family role, fatigue, nursing role, pain, psychological wellbeing, rheumatoid arthritis, self-efficacy, work
Rheumatoid arthritis
Rheumatoid arthritis is a long-term inflammatory condition that can affect physical, psychological and social function. The condition is not curable – although drug therapy can be used to reduce inflammation – and patients often experience daily symptoms of joint pain and stiffness, fatigue and functional limitations. Patients may also experience psychological challenges. This article focuses on the psychological implications of living with rheumatoid arthritis, including reaction to diagnosis, anxiety and depression, body image, sexuality, self-esteem and social role. It aims to explore the role of the nurse in addressing these psychological challenges to optimise the physical and psychological status of each patient.
Author Sarah Ryan Nurse consultant, rheumatology, Haywood Hospital, Staffordshire and Stoke-on-Trent Partnership NHS Trust, Stoke-on-Trent, England. Correspondence to: [email protected]
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Rheumatoid arthritis is a common long-term inflammatory condition that can affect physical, psychological and social wellbeing. Since there is no cure, patients require help and support from healthcare professionals to manage the symptoms, which can affect their everyday function. Rheumatoid arthritis is a systemic, autoimmune, inflammatory condition of the moveable (synovial) joints of the body. It is estimated to affect 580,000 people in England (House of Commons Committee of Public Accounts 2010), with women affected more commonly than men (Symmons et al 2002). Its core symptoms
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present as joint pain, stiffness and swelling as well as fatigue. It can affect physical, psychological and social functioning. Joint deformity can also occur if the inflammatory process is not controlled. Symptoms are not always confined to the joints. Rheumatoid arthritis can cause extra-articular manifestations, including subcutaneous nodules, anaemia, pericarditis and pleural effusions. The cause of rheumatoid arthritis is unknown. A family history of rheumatoid arthritis increases the likelihood of the condition. It appears that exposure to an as-yet-unidentified antigen, in a genetically predisposed individual, can initiate an autoimmune response that leads to joint inflammation. The synovial lining of the joint capsule becomes inflamed and congested with T lymphocytes, B cells, macrophages and plasma cells. This inflammatory response causes proliferation of the synovial membrane, which erodes the bone. This results in altered joint function and, ultimately, joint deformity (Hameed and Akil 2010). There is no single diagnostic test for rheumatoid arthritis, but there are diagnostic criteria to identify patients with the condition (Box 1) (Aletaha et al 2010). The aim of treatment is to suppress the activity (inflammation) of rheumatoid arthritis and to optimise patients’ physical, psychological and social functioning. Disease-modifying anti-rheumatic drugs and biologic agents, which inhibit cytokines, are used to suppress the inflammation and reduce the likelihood of deformities (Box 2). Non-pharmacological interventions are also invaluable in helping patients manage their symptoms on a daily basis; they include exercise, strategies for coping with pain and fatigue, pacing activities, and joint protection.
Psychological wellbeing The World Health Organization (WHO) (2003) refers to psychological wellbeing as a state in which every individual realises his or her own potential, can cope with the usual stresses of life, can work productively and is able to make a contribution to his or her community. There are many ways in which being diagnosed with a long-term condition such as rheumatoid arthritis can challenge wellbeing. First, the individual may need to re-evaluate his or her current and future goals, including whether they
can continue in their preferred employment. Second, the unpredictability of symptoms and the presence of pain and fatigue may lead to daily plans having to be changed. Third, the treatment of rheumatoid arthritis contains aspects of uncertainty – a patient might commence the recommended drug treatment but find it is not effective and additional medication needs to be started. It is not surprising, therefore, that patients with rheumatoid arthritis experience a host of psychological reactions that can range from the shock of diagnosis and initial helplessness, to a sense of being in control. A sense of control can be achieved when patients realise they have the knowledge and behavioural skills to cope with the effects of the condition (Bandura 1977). Complete time out activity 1
Reaction to diagnosis Rheumatoid arthritis has an insidious onset. The patient may feel well one day and may wake the next day to find that joints have become swollen, painful and stiff to move and that these symptoms are accompanied by an overwhelming feeling of tiredness. There is no time for the patient to prepare to cope because
1 Write a list of the factors that contribute to maintaining your own sense of wellbeing. How might the factors you have identified alter if you were diagnosed with a long-term condition?
BOX 1 Diagnostic criteria for rheumatoid arthritis A definite diagnosis of rheumatoid arthritis requires: Confirmed presence of synovitis in at least one joint. Absence of an alternative diagnosis that better explains the symptoms. Achievement of a score of 6 or greater (from a possible 10) from the following: Number and sites of involved joints including hands and feet (score range 0-5). Serological abnormalities: highly positive rheumatoid factor (RF) or highly positive anti-cyclic citrullinated peptide antibody (anti-CCP) (score range 0-3). Evaluated acute phase response (raised C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR)) (score range 0-1). Symptoms lasting more than six weeks (score range of 0-1). (Aletaha et al 2010)
BOX 2 Disease-modifying anti-rheumatic drugs (DMARDs) and biologic agents DMARDs: Azathioprine Ciclosporin Cyclophosphamide Hydroxychloroquine Leflunomide Methotrexate Mycophenolate mofetil Penicillamine Sulfasalazine
Biologic agents: Abatacept Adalimumab Certolizumab pegol Etanercept Golimumab Infliximab Rituximab Tocilizumab
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CPD rheumatology nursing of the quick onset of symptoms. It can be a bewildering process because the symptoms might affect everyday activities and social roles quickly. Obtaining a diagnosis for the condition might provide patients with an initial sense of relief, but when they learn their condition is incurable they may experience a range of emotions, including shock, grief, anger, denial and depression (Hehir et al 2008). Complete time out activity 2 The role of the nurse, following diagnosis of rheumatoid arthritis, is to provide time and space for the patient to discuss his or her feelings and thoughts about the condition and to offer emotional support while the patient attempts to make sense of what is happening (Hehir et al 2008). The patient may feel helpless at this time, and will require information from the nurse about what rheumatoid arthritis is, what the symptoms are, the expectations for the treatment and what can be done to minimise the effect of symptoms while sufficient time is given for the treatment to become effective. Many rheumatology services have nurse-led clinics for newly diagnosed patients, so that patients can access regular emotional and practical support while they come to terms with their diagnosis. Hehir et al (2008) identified that patients often had three main needs after receiving a diagnosis of rheumatoid arthritis. They required emotional time and space to work through feelings of being depressed and frustrated; opportunities to discuss practicalities associated with the treatment of rheumatoid arthritis, including how to take medications; and advice on self-management that explores how to manage symptoms of rheumatoid arthritis, such as pain and fatigue.
Depression
2 Discuss with a colleague the role of the nurse when a patient is given a diagnosis of rheumatoid arthritis. Are there any changes to your practice that should be made?
Anxiety and depression are commonly observed among patients with rheumatoid arthritis, with a higher prevalence than that of the general population (Isik et al 2007). An anxious patient will be worried, tense, and exhibiting signs of avoiding certain behaviours, such as exercise, because of a fear that it may aggravate pain. A patient with symptoms of depression will often display feelings of sadness, helplessness and loss of feelings of pleasure and interest, sometimes to the extent they interfere with daily functioning (Geenen et al 2012). Other symptoms associated with depression are listed in Box 3.
Patients who perceive their rheumatoid arthritis to have serious negative consequences experience higher states of anxiety, whereas patients with a greater number of symptoms experience more severe depression (Graves et al 2009). A large epidemiological study demonstrated that having arthritis of any type significantly increased the odds of developing depression two years later (van’t Land et al 2010). Patients with rheumatoid arthritis who are depressed have a greater risk of illnesses and events such as myocardial infarction (Scherrer et al 2009), have increased mortality (Ang et al 2005), and make greater use of healthcare services (Joyce et al 2009). Many factors, including pain, fatigue and disability, can contribute to the development of depression in rheumatoid arthritis (Dickens et al 2002). In a large-scale study of 22,131 patients with rheumatoid arthritis, pain and fatigue were the best predictors of self-reported depression (Wolfe and Michaud 2009). A survey on the emotional effect of arthritis found that, when arthritis pain was at its worst, 68% of respondents felt depressed and 50% felt helpless (Arthritis Care 2011). Disability can affect mobility and limit the ability to engage in meaningful or valued life activities, and is associated with greater pain, fatigue and work disability (Dickens et al 2002). Depression may also lead to marital conflict and reduce the size of the patient’s social network (Nicassio 2008, Morris et al 2011).
Identifying depression
The provision of psychological support is part of the role of rheumatology nurses, but depression is seldom assessed routinely in outpatient rheumatology clinics (van Eijk-Hustings et al 2012). The apparent reluctance of rheumatology healthcare professionals to adopt an active role in addressing patients’ psychological needs may be attributable to
BOX 3 Symptoms associated with depression Loss of interest in and enjoyment of life. Lack of drive and motivation. Fatigue. Agitation and restlessness. Alteration in appetite. Alteration in sleep pattern. Loss of self-confidence. Feeling worse at a particular time of day, usually mornings. Irritability. Feeling useless or inadequate.
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time constraints, lack of resources, inadequate professional training or the belief that other healthcare professionals should be dealing with psychological issues (Nicassio 2008). Many of the symptoms of depression, including fatigue, sleep disturbance, weight loss and loss of appetite, can arise from physical manifestations of rheumatoid arthritis, as well as from depression. If the patient is not screened for depression, an erroneous assumption might be made that such symptoms are related to heightened disease activity. The healthcare professional may then use pharmacological measures to control the perceived increase in disease activity – an intervention that is unlikely to help the patient with mood symptoms. A count of four out of ten depressive symptoms, present for at least two weeks, with each symptom present every day, is required for a formal diagnosis of depression under the ICD-10 classification system (WHO 2010). The National Institute for Health and Care Excellence (NICE) (2009) recommends that healthcare professionals do not rely solely on a depressive symptom count when assessing a patient with a chronic physical health problem who may have depression. This is because depressive symptoms below this formal threshold for diagnosis may still be distressing and disabling. NICE (2009) recommends that healthcare professionals take into account the degree of functional impairment and/or disability associated with the possible depression and the duration of the episode. A brief self-report instrument, such as the Patient Health Questionnaire (also known as PHQ9), can be completed in a few minutes and has high specificity and sensitivity for detecting depressive disorders (Gilbody et al 2007). The presence of depressive symptoms can also influence treatment outcomes adversely, which provides another reason to identify and treat depression. Patients with persistent depression who were prescribed anti-tumour necrosis factor (anti-TNF) therapy had significantly smaller reductions in disease activity compared with patients without persistent depression who were given the same agents (Hider et al 2009). Complete time out activity 3
Treatments for psychological distress The importance of addressing psychological needs is acknowledged in the NICE (2009) treatment guidelines, which state that people with chronic physical health problems should
be offered psychological interventions such as relaxation, stress management and cognitive coping skills to help them adjust to living with their condition. The nurse’s role is to assess the patient for the presence of depressive symptoms and to offer psychological support if these symptoms are identified. The skills that patients with rheumatoid arthritis value in a nurse include empathy, the ability to listen and the ability to understand the effects of the condition from the individual’s viewpoint (Ryan et al 2013). If the nurse does not have appropriate knowledge and skills in this area, then he or she can direct the patient to relevant services – for example, in the voluntary sector through charities such as MIND – and alert the patient’s GP to the patient’s mood status. Cognitive behavioural therapy (CBT) is recommended as a first-line treatment for mild-to-moderate anxiety and depression (NICE 2009). CBT focuses on how our thoughts (cognitions) can influence our actions. For example, if an individual believes that engaging in exercise will increase pain, he or she is unlikely to undertake any such exercise. The nurse should spend time with the patient exploring the factors that have influenced his or her belief that exercise will increase pain, as well as past experiences of exercise. The nurse should explain the benefits that exercise can bring and demonstrate specific exercises to the patient. If the patient is willing to explore exercise as a treatment option, the nurse might refer the patient to a physiotherapist for supervised exercise to provide motivation and feedback. CBT has been shown to reduce depressive symptoms, anxiety and the effects of disability in patients with rheumatoid arthritis (Sharpe et al 2003). Meditation, biofeedback and relaxation have also been shown to be safe and effective means of reducing psychological distress. Patients attending a meditation-based course designed to increase clarity, calm and wellbeing reported a reduction in stress levels (Pradhan et al 2007). In biofeedback, the patient is made aware of the effect that stress can have on wellbeing. He or she may then be able to identify and control triggers of stress, limiting the effect of potential stressors in future. There is insufficient evidence to support the routine prescription of antidepressants in patients with rheumatoid arthritis (Richards et al 2011). NICE (2009) does not recommend the routine use of antidepressants to treat mild depression in patients with a chronic physical health problem, because the benefit-to-risk
3 What services are available in your area to help patients with anxiety and depression. Consider producing a leaflet or poster to display this information on the ward.
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CPD rheumatology nursing ratio is poor. NICE (2009) recommends that antidepressants should be considered for patients with a history of moderate or severe depression, or with mild depression that persists over time.
Pain and fatigue
4 Using the concept of pacing, what advice would you give to a patient who was swimming once a week for one hour, and who is experiencing increased joint pain and fatigue two days after swimming? 5 List all the ways in which rheumatoid arthritis might affect body image. Write down some questions that would enable an exploration of the potential effect of rheumatoid arthritis on body image during a patient assessment.
Pain and fatigue in patients with rheumatoid arthritis can affect psychological wellbeing (Walsh and McWilliams 2014). Patients need advice on managing these symptoms, since a reduction in their pain and fatigue is likely to improve their mood status too. Pacing is one coping strategy that can help an individual to manage pain and fatigue effectively. Pacing involves reviewing the patient’s daily routine and ensuring periods of rest and activity are spread evenly throughout the day. Planning activities over a week, rather than carrying out too many activities in one day, can help patients conserve energy and reduce pain, as well as giving individuals a sense of control over their situation. Complete time out activity 4 Patients can find it useful to keep a diary of their activities, and recording times in the day when their pain and/or fatigue is heightened. Such a diary can identify associations between their activities and their symptoms. An example of this might be doing three hours of continuous housework and experiencing increased pain and fatigue the next day. This realisation might then lead to patients modifying their behaviour, for example by altering their routine so that they do one hour of housework daily over three days. This in turn might reduce the likelihood of increased pain and fatigue the next day. A group CBT self-management programme for fatigue in rheumatoid arthritis, which included goal setting, exploring the associations between cognitions and behaviour, how to engage in exercise and implement energy conservation, demonstrated a reduction in the
BOX 4 Strategies to manage pain Using splints for inflamed joints, such as a wrist splint. Using hot and cold applications, such as heat or ice packs. Taking prescribed analgesia on a regular basis. Completing stretching and strengthening exercises. Minimising exposure to stress. Performing relaxation techniques, such as deep-breathing exercises, meditation, and tensing and relaxing muscles. Pacing activities – balancing exercises with rest.
effects of fatigue as well as a beneficial effect on depression and feelings of helplessness (Hewlett et al 2011). Regular maintained exercise, employing the principles of pacing, can help patients with rheumatoid arthritis to manage joint stiffness and pain, fatigue and muscle weakness, and maintain joint function. Swimming, walking and cycling are recommended forms of exercise for maintaining joint health because they have low impact on the joints. Other methods of pain management are shown in Box 4.
Body image and sexuality Concerns about body image, including worry about physical changes to the joints such as swelling and deformity, are heightened in people with rheumatoid arthritis, and are associated with a poor quality of life (Jorge et al 2010). Other factors that can have a negative effect on body image and sexuality include self-esteem, physical function, the degree of early morning stiffness and low mood (Josefsson and Gard 2010). Approximately 30% of patients report that arthritis makes them feel less attractive. These feelings are associated with high levels of depression and might lead to patients using avoiding and concealing behaviours to reduce noticeability (Monaghan et al 2007). The hands, feet and knees were the body areas most frequently reported as causing distress (McBain et al 2013). Complete time out activity 5 Patients’ body image should be addressed in the nursing assessment, so that any negative thoughts or concerns about body image can be identified. Patients often report feeling clumsy or slow in movement because of perceptions of heaviness in their limbs, or they find that fatigue affects their speed of movement. The nurse can demonstrate exercises to help with stiffness and to improve joint movement. The patient may often feel that being able to do something beneficial means taking some control of the condition, which can improve self-esteem. Patients with rheumatoid arthritis who have persistent negative body perceptions may benefit from referral to a psychologist. If inflammatory changes are occurring in the hands, the nurse may also refer the patient to the occupational therapist for advice on hand exercises and for splinting. Providing advice on choosing suitable supportive footwear
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may avoid the need for bespoke surgical shoes that reinforce the sense of altered body image in some patients. A surgical opinion may be required if there are structural changes in the hands and feet; surgical treatment may be required to relieve symptoms of pain or to correct deformity. The presence of joint pain and stiffness, fatigue and concerns about body image may all have a negative effect on sexuality. Female patients with rheumatoid arthritis report that their reduced range of movement and muscle strength makes it difficult to find a comfortable position during sexual intercourse (Josefsson and Gard 2010). The nurse should discuss with patients whether their condition is affecting their sexuality and may propose self-management techniques such as planning when sexual intercourse will occur, pacing activities to conserve energy, having a hot bath to relax the joints, taking analgesia or using a pillow to support painful joints.
Self-efficacy Symptoms of rheumatoid arthritis can be influenced by psychosocial factors such as self-efficacy: the belief in one’s ability to carry out a specific behaviour with a desired outcome (Bandura 1977). For example, whether an individual engages in a specific behaviour such as exercise to reduce joint stiffness, will be influenced by the individual’s conviction that he or she has the ability to carry out the exercises. It also depends on the value placed on the intended outcome, in this case, a reduction in joint stiffness. When advocating behavioural change, it is useful to ask patients questions such as: ‘how confident are you at carrying out the exercises we have just discussed on a score of 1 to 10?’ If the patient responds with a score of less than 7, it is unlikely he or she will carry out the exercises. The nurse should then explore what action is necessary to increase the score to more than 7, or whether another intervention would be more beneficial. Self-management programmes with an emphasis on learning behavioural skills, such as exercise, relaxation, joint protection and pacing activities, have been shown to increase self-efficacy (Barlow et al 2009). A Cochrane review of 31 patient education programmes concluded that programmes that offered only information and counselling had no additional benefits over usual care (Riemsma et al 2003). However, programmes that included behavioural skills had a
significant but short-term benefit (less than 12 months) on physical function and psychological status in patients with rheumatoid arthritis, providing an additional benefit to routine care (Riemsma et al 2003).
Effects on partners A diagnosis of a long-term condition such as rheumatoid arthritis has the potential to affect not only individuals with the condition but also partners, resulting in emotions such as anger, guilt, helplessness, feelings of loss, and worry and fear of the future (Matheson et al 2010). Participants in one study described the frustration of seeing partners in pain and being unable to help as well as having to forego enjoyable activities (Matheson et al 2010). Another study identified significant financial, physical and psychological strain on spouses (Jacobi et al 2003). Partners employed coping strategies such as maintaining a positive outlook and planning short recreational activities (Mann and Dieppe 2006). Many couples developed a sense of shared ownership of the illness over time (Mann and Dieppe 2006). Most partners wished to be involved in every aspect of care and to be recognised by healthcare professionals as an essential source of support for the patient. They also identified the need for partner support groups (Matheson et al 2010).
Effects on work Patients often express concerns at the time of their diagnosis about their ability to work. The unpredictability of their symptoms can make it difficult to remain in occupations that have a fixed starting time. Joint stiffness can be heightened in the morning, and patients might find they have to get up two or three hours before starting work to enable their joint stiffness to ease. Occupations and employers that endorse flexitime can make it easier for an individual to manage their symptoms. Part-time work, if available and financially viable, can provide the patient with the opportunity for rest periods throughout the week. It can be challenging for people with rheumatoid arthritis to remain in physically demanding work, such as that involving manual labour, where there is daily stress and repetitive strain on joints and muscles. Patients with continual pain, fatigue,
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CPD rheumatology nursing functional disability or high levels of disease activity often have to leave the workforce (McWilliams et al 2013). Factors that would increase the likelihood of remaining in employment, as identified by patients with rheumatoid arthritis, were increased flexibility from their employer and urgent access to the rheumatology team when their condition became active (National Rheumatoid Arthritis Society 2007). If a patient is experiencing difficulties in his or her current employment, then the nurse can refer to the local vocational rehabilitation officer, so that the patient can access information about possible modifications to work environments or about training schemes leading to alternative employment. Complete time out activity 6
Social support
6 List the effects rheumatoid arthritis might have on the family and consider how the family can support the person with the condition. 7 Now that you have completed the article, you might like to write a reflective account. Guidelines to help you are on page 62.
Social support is a major factor of wellbeing with many functions (Box 5). A diagnosis of rheumatoid arthritis can be a strain on the whole family. Roles within the family unit many have to change and not every family member may be receptive to enforced changes. For example, a mother with rheumatoid arthritis may find it difficult to join in physical activities with her children because of physical discomfort in her joints. The nurse can encourage the patient to discuss how to manage the condition with family members so that they feel included in all decisions and
BOX 5 Functions of social support Emotional support. Encouraging communication of feelings. Expressing positive effect. Physical assistance with everyday tasks. Providing information and advice. Providing material aid. Recreational activity and social commitments. Sexual wellbeing. Validating beliefs, emotions and actions.
BOX 6 Support organisations for patients National Rheumatoid Arthritis Society (www.nras.org.uk) Has information for patients and healthcare professionals on all aspects of rheumatoid arthritis and a telephone helpline. Arthritis Research UK (www.arthritisresearchuk.org) Produces patient information leaflets on rheumatoid arthritis. Arthritis Care (www.arthritiscare.org.uk) Has a range of information on coping with the effects of rheumatoid arthritis. There is also a telephone helpline for patients.
role changes can be negotiated and agreed within the family unit. For example, instead of engaging in physical activities with her children, the mother could spend time with her children, taking them to the cinema or going out for a meal. Problems are likely to occur when the person with rheumatoid arthritis feels guilty that the condition is causing changes in the family, and stops communicating or sharing the management of the condition with the family. It can be rewarding to involve the family in many aspects of management, such as swimming to help maintain joint mobility and reduce joint stiffness, as well as creating a fun occasion for the family. Explaining that having periods of rest balanced with periods of activity will help to reduce pain and fatigue. It should also help the family to understand that rest is an important part of coping with the condition and avoid them perceiving rest as a negative activity. Being married is not in itself associated with better health in rheumatoid arthritis, but being in a well-adjusted or non-distressed marriage is linked with less pain and better functioning (Reese et al 2010). For some patients, support groups can remove the potential for isolation as well as providing information and contacts. The three main support organisations offering resources for people with rheumatoid arthritis are shown in Box 6.
Conclusion A diagnosis of rheumatoid arthritis may affect many aspects of psychological wellbeing including mood, body image and social function. Physical symptoms of rheumatoid arthritis such as pain, fatigue and loss of function can also adversely affect wellbeing. The nurse can support patients from the time of diagnosis throughout their care and management. By helping patients to manage their pain and fatigue, and optimise psychosocial functioning, the nurse can help patients improve their physical and psychological wellbeing. Recognising when the patient is anxious or depressed and referring him or her to the appropriate service enables the individual to access appropriate psychological support, as well as improving his or her response to treatment for rheumatoid arthritis NS Complete time out activity 7
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Hider SL, Tanveer W, Brownfield A, Mattey DL, Packham JC (2009) Depression in RA patients treated with anti-TNF is common and under recognised in the rheumatology clinic. Rheumatology. 48, 9, 1152-1154. House of Commons Committee of Public Accounts (2010) Services for People with Rheumatoid Arthritis. HC46. The Stationery Office, London. Isik A, Koca SS, Ozturk A, Mermi O (2007) Anxiety and depression in patients with rheumatoid arthritis. Clinical Rheumatology. 26, 6, 872-878. Jacobi CE, van den Berg B, Boshuizen HC, Rupp I, Dinant HJ, van den Bos GA (2003) Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients. Rheumatology. 42, 10, 1226-1233. Jorge R, Brumini C, Jones A, Natour J (2010) Body image in patients with rheumatoid arthritis. Modern Rheumatology. 20, 5, 491-495. Josefsson KA, Gard G (2010) Women’s experiences of sexual health when living with rheumatoid arthritis – an explorative qualitative study. BMC Musculoskeletal Disorders. 11, 240. Joyce AT, Smith P, Khandker R, Melin JM, Singh A (2009) Hidden cost of rheumatoid arthritis (RA): estimating cost of comorbid cardiovascular disease and depression among patients with RA. The Journal of Rheumatology. 36, 4, 743-752. Mann C, Dieppe P (2006) Different patterns of illness-related interactions in couples coping with rheumatoid arthritis. Arthritis and Rheumatism. 55, 2, 279-286. Matheson L, Harcourt D, Hewlett S (2010) ‘Your whole life, your whole world, it changes’: partners’ experiences of living
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Riemsma RP, Kirwan JR, Taal E, Rasker JJ (2003) Patient education for adults with rheumatoid arthritis. Cochrane Database of Systematic Reviews. Issue 2, CD003688. Ryan S, Lillie K, Thwaites C, Adams J (2013) What I want clinicians to know’ – experiences of people with arthritis. British Journal of Nursing. 22, 14, 808-812. Scherrer JF, Virgo KS, Zeringue A et al (2009) Depression increases risk of incident myocardial infarction among Veterans Administration patients with rheumatoid arthritis. General Hospital Psychiatry. 31, 4, 353-359. Sharpe L, Sensky T, Timberlake N, Ryan B, Allard S (2003) Long-term efficacy of a cognitive behavioural treatment from a randomized controlled trial for patients recently diagnosed with rheumatoid arthritis. Rheumatology. 42, 3, 435-441. Symmons D, Turner G, Webb R et al (2002) The prevalence of rheumatoid arthritis in the United Kingdom: new estimates for a new century. Rheumatology. 41, 7, 793-800. van Eijk-Hustings Y, van Tubergen A, Boström C et al (2012) EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Annals of the Rheumatic Diseases. 71, 1, 13-19. van’t Land H, Verdurmen J, Ten Have M et al (2010) The association between arthritis and psychiatric disorders; results from a longitudinal population-based study. Journal of Psychosomatic Research. 68, 2, 187-193. Walsh DA, McWilliams DF (2014) Mechanisms, impact and management of pain in rheumatoid arthritis. Nature Reviews Rheumatology. 10, 10, 581-592. Wolfe F, Michaud K (2009) Predicting depression in rheumatoid arthritis: the signal importance of pain extent and fatigue, and comorbidity. Arthritis and Rheumatism. 61, 5, 667-673. World Health Organization (2003) Investing in Mental Health. WHO, Geneva. World Health Organization (2010) The ICD-10 Classification of Mental and Behavioural Disorders: Clinical Descriptions and Diagnostic Guidelines. WHO, Geneva.
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CONTINUING PROFESSIONAL DEVELOPMENT
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Rheumatoid arthritis multiple choice questionnaire
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Rebekah Richardson’s reflective account on end of life care
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Guidelines on how to write a reflective account
Psychological effects of living with rheumatoid arthritis NS771 Ryan S (2014) Psychological effects of living with rheumatoid arthritis. Nursing Standard. 29, 13, 52-59. Date of submission: August 11 2014; date of acceptance: September 12 2014.
Aims and intended learning outcomes
Abstract
Keywords
This article describes the psychological effects of living with rheumatoid arthritis, including reaction to diagnosis, anxiety and depression, body image, and the effects on work and family. It aims to increase understanding of the psychological implications of living with rheumatoid arthritis, and outline the nurse’s role in helping patients to manage symptoms and maintain psychological wellbeing. After reading this article and completing the time out activities, you should be able to: Identify common emotional reactions to a diagnosis of rheumatoid arthritis. Recognise the main factors associated with depression. Understand the nurse’s role in helping a person with depression. Be aware of the effect rheumatoid arthritis can have on social function, work and family. Outline the nurse’s role in managing fatigue.
Anxiety, body image, depression, family role, fatigue, nursing role, pain, psychological wellbeing, rheumatoid arthritis, self-efficacy, work
Rheumatoid arthritis
Rheumatoid arthritis is a long-term inflammatory condition that can affect physical, psychological and social function. The condition is not curable – although drug therapy can be used to reduce inflammation – and patients often experience daily symptoms of joint pain and stiffness, fatigue and functional limitations. Patients may also experience psychological challenges. This article focuses on the psychological implications of living with rheumatoid arthritis, including reaction to diagnosis, anxiety and depression, body image, sexuality, self-esteem and social role. It aims to explore the role of the nurse in addressing these psychological challenges to optimise the physical and psychological status of each patient.
Author Sarah Ryan Nurse consultant, rheumatology, Haywood Hospital, Staffordshire and Stoke-on-Trent Partnership NHS Trust, Stoke-on-Trent, England. Correspondence to: [email protected]
Review All articles are subject to external double-blind peer review and checked for plagiarism using automated software.
Online For related articles visit the archive and search using the keywords above. To write a CPD article: please email [email protected] Guidelines on writing for publication are available at: rcnpublishing.com/r/ author-guidelines
Rheumatoid arthritis is a common long-term inflammatory condition that can affect physical, psychological and social wellbeing. Since there is no cure, patients require help and support from healthcare professionals to manage the symptoms, which can affect their everyday function. Rheumatoid arthritis is a systemic, autoimmune, inflammatory condition of the moveable (synovial) joints of the body. It is estimated to affect 580,000 people in England (House of Commons Committee of Public Accounts 2010), with women affected more commonly than men (Symmons et al 2002). Its core symptoms
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present as joint pain, stiffness and swelling as well as fatigue. It can affect physical, psychological and social functioning. Joint deformity can also occur if the inflammatory process is not controlled. Symptoms are not always confined to the joints. Rheumatoid arthritis can cause extra-articular manifestations, including subcutaneous nodules, anaemia, pericarditis and pleural effusions. The cause of rheumatoid arthritis is unknown. A family history of rheumatoid arthritis increases the likelihood of the condition. It appears that exposure to an as-yet-unidentified antigen, in a genetically predisposed individual, can initiate an autoimmune response that leads to joint inflammation. The synovial lining of the joint capsule becomes inflamed and congested with T lymphocytes, B cells, macrophages and plasma cells. This inflammatory response causes proliferation of the synovial membrane, which erodes the bone. This results in altered joint function and, ultimately, joint deformity (Hameed and Akil 2010). There is no single diagnostic test for rheumatoid arthritis, but there are diagnostic criteria to identify patients with the condition (Box 1) (Aletaha et al 2010). The aim of treatment is to suppress the activity (inflammation) of rheumatoid arthritis and to optimise patients’ physical, psychological and social functioning. Disease-modifying anti-rheumatic drugs and biologic agents, which inhibit cytokines, are used to suppress the inflammation and reduce the likelihood of deformities (Box 2). Non-pharmacological interventions are also invaluable in helping patients manage their symptoms on a daily basis; they include exercise, strategies for coping with pain and fatigue, pacing activities, and joint protection.
Psychological wellbeing The World Health Organization (WHO) (2003) refers to psychological wellbeing as a state in which every individual realises his or her own potential, can cope with the usual stresses of life, can work productively and is able to make a contribution to his or her community. There are many ways in which being diagnosed with a long-term condition such as rheumatoid arthritis can challenge wellbeing. First, the individual may need to re-evaluate his or her current and future goals, including whether they
can continue in their preferred employment. Second, the unpredictability of symptoms and the presence of pain and fatigue may lead to daily plans having to be changed. Third, the treatment of rheumatoid arthritis contains aspects of uncertainty – a patient might commence the recommended drug treatment but find it is not effective and additional medication needs to be started. It is not surprising, therefore, that patients with rheumatoid arthritis experience a host of psychological reactions that can range from the shock of diagnosis and initial helplessness, to a sense of being in control. A sense of control can be achieved when patients realise they have the knowledge and behavioural skills to cope with the effects of the condition (Bandura 1977). Complete time out activity 1
Reaction to diagnosis Rheumatoid arthritis has an insidious onset. The patient may feel well one day and may wake the next day to find that joints have become swollen, painful and stiff to move and that these symptoms are accompanied by an overwhelming feeling of tiredness. There is no time for the patient to prepare to cope because
1 Write a list of the factors that contribute to maintaining your own sense of wellbeing. How might the factors you have identified alter if you were diagnosed with a long-term condition?
BOX 1 Diagnostic criteria for rheumatoid arthritis A definite diagnosis of rheumatoid arthritis requires: Confirmed presence of synovitis in at least one joint. Absence of an alternative diagnosis that better explains the symptoms. Achievement of a score of 6 or greater (from a possible 10) from the following: Number and sites of involved joints including hands and feet (score range 0-5). Serological abnormalities: highly positive rheumatoid factor (RF) or highly positive anti-cyclic citrullinated peptide antibody (anti-CCP) (score range 0-3). Evaluated acute phase response (raised C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR)) (score range 0-1). Symptoms lasting more than six weeks (score range of 0-1). (Aletaha et al 2010)
BOX 2 Disease-modifying anti-rheumatic drugs (DMARDs) and biologic agents DMARDs: Azathioprine Ciclosporin Cyclophosphamide Hydroxychloroquine Leflunomide Methotrexate Mycophenolate mofetil Penicillamine Sulfasalazine
Biologic agents: Abatacept Adalimumab Certolizumab pegol Etanercept Golimumab Infliximab Rituximab Tocilizumab
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CPD rheumatology nursing of the quick onset of symptoms. It can be a bewildering process because the symptoms might affect everyday activities and social roles quickly. Obtaining a diagnosis for the condition might provide patients with an initial sense of relief, but when they learn their condition is incurable they may experience a range of emotions, including shock, grief, anger, denial and depression (Hehir et al 2008). Complete time out activity 2 The role of the nurse, following diagnosis of rheumatoid arthritis, is to provide time and space for the patient to discuss his or her feelings and thoughts about the condition and to offer emotional support while the patient attempts to make sense of what is happening (Hehir et al 2008). The patient may feel helpless at this time, and will require information from the nurse about what rheumatoid arthritis is, what the symptoms are, the expectations for the treatment and what can be done to minimise the effect of symptoms while sufficient time is given for the treatment to become effective. Many rheumatology services have nurse-led clinics for newly diagnosed patients, so that patients can access regular emotional and practical support while they come to terms with their diagnosis. Hehir et al (2008) identified that patients often had three main needs after receiving a diagnosis of rheumatoid arthritis. They required emotional time and space to work through feelings of being depressed and frustrated; opportunities to discuss practicalities associated with the treatment of rheumatoid arthritis, including how to take medications; and advice on self-management that explores how to manage symptoms of rheumatoid arthritis, such as pain and fatigue.
Depression
2 Discuss with a colleague the role of the nurse when a patient is given a diagnosis of rheumatoid arthritis. Are there any changes to your practice that should be made?
Anxiety and depression are commonly observed among patients with rheumatoid arthritis, with a higher prevalence than that of the general population (Isik et al 2007). An anxious patient will be worried, tense, and exhibiting signs of avoiding certain behaviours, such as exercise, because of a fear that it may aggravate pain. A patient with symptoms of depression will often display feelings of sadness, helplessness and loss of feelings of pleasure and interest, sometimes to the extent they interfere with daily functioning (Geenen et al 2012). Other symptoms associated with depression are listed in Box 3.
Patients who perceive their rheumatoid arthritis to have serious negative consequences experience higher states of anxiety, whereas patients with a greater number of symptoms experience more severe depression (Graves et al 2009). A large epidemiological study demonstrated that having arthritis of any type significantly increased the odds of developing depression two years later (van’t Land et al 2010). Patients with rheumatoid arthritis who are depressed have a greater risk of illnesses and events such as myocardial infarction (Scherrer et al 2009), have increased mortality (Ang et al 2005), and make greater use of healthcare services (Joyce et al 2009). Many factors, including pain, fatigue and disability, can contribute to the development of depression in rheumatoid arthritis (Dickens et al 2002). In a large-scale study of 22,131 patients with rheumatoid arthritis, pain and fatigue were the best predictors of self-reported depression (Wolfe and Michaud 2009). A survey on the emotional effect of arthritis found that, when arthritis pain was at its worst, 68% of respondents felt depressed and 50% felt helpless (Arthritis Care 2011). Disability can affect mobility and limit the ability to engage in meaningful or valued life activities, and is associated with greater pain, fatigue and work disability (Dickens et al 2002). Depression may also lead to marital conflict and reduce the size of the patient’s social network (Nicassio 2008, Morris et al 2011).
Identifying depression
The provision of psychological support is part of the role of rheumatology nurses, but depression is seldom assessed routinely in outpatient rheumatology clinics (van Eijk-Hustings et al 2012). The apparent reluctance of rheumatology healthcare professionals to adopt an active role in addressing patients’ psychological needs may be attributable to
BOX 3 Symptoms associated with depression Loss of interest in and enjoyment of life. Lack of drive and motivation. Fatigue. Agitation and restlessness. Alteration in appetite. Alteration in sleep pattern. Loss of self-confidence. Feeling worse at a particular time of day, usually mornings. Irritability. Feeling useless or inadequate.
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time constraints, lack of resources, inadequate professional training or the belief that other healthcare professionals should be dealing with psychological issues (Nicassio 2008). Many of the symptoms of depression, including fatigue, sleep disturbance, weight loss and loss of appetite, can arise from physical manifestations of rheumatoid arthritis, as well as from depression. If the patient is not screened for depression, an erroneous assumption might be made that such symptoms are related to heightened disease activity. The healthcare professional may then use pharmacological measures to control the perceived increase in disease activity – an intervention that is unlikely to help the patient with mood symptoms. A count of four out of ten depressive symptoms, present for at least two weeks, with each symptom present every day, is required for a formal diagnosis of depression under the ICD-10 classification system (WHO 2010). The National Institute for Health and Care Excellence (NICE) (2009) recommends that healthcare professionals do not rely solely on a depressive symptom count when assessing a patient with a chronic physical health problem who may have depression. This is because depressive symptoms below this formal threshold for diagnosis may still be distressing and disabling. NICE (2009) recommends that healthcare professionals take into account the degree of functional impairment and/or disability associated with the possible depression and the duration of the episode. A brief self-report instrument, such as the Patient Health Questionnaire (also known as PHQ9), can be completed in a few minutes and has high specificity and sensitivity for detecting depressive disorders (Gilbody et al 2007). The presence of depressive symptoms can also influence treatment outcomes adversely, which provides another reason to identify and treat depression. Patients with persistent depression who were prescribed anti-tumour necrosis factor (anti-TNF) therapy had significantly smaller reductions in disease activity compared with patients without persistent depression who were given the same agents (Hider et al 2009). Complete time out activity 3
Treatments for psychological distress The importance of addressing psychological needs is acknowledged in the NICE (2009) treatment guidelines, which state that people with chronic physical health problems should
be offered psychological interventions such as relaxation, stress management and cognitive coping skills to help them adjust to living with their condition. The nurse’s role is to assess the patient for the presence of depressive symptoms and to offer psychological support if these symptoms are identified. The skills that patients with rheumatoid arthritis value in a nurse include empathy, the ability to listen and the ability to understand the effects of the condition from the individual’s viewpoint (Ryan et al 2013). If the nurse does not have appropriate knowledge and skills in this area, then he or she can direct the patient to relevant services – for example, in the voluntary sector through charities such as MIND – and alert the patient’s GP to the patient’s mood status. Cognitive behavioural therapy (CBT) is recommended as a first-line treatment for mild-to-moderate anxiety and depression (NICE 2009). CBT focuses on how our thoughts (cognitions) can influence our actions. For example, if an individual believes that engaging in exercise will increase pain, he or she is unlikely to undertake any such exercise. The nurse should spend time with the patient exploring the factors that have influenced his or her belief that exercise will increase pain, as well as past experiences of exercise. The nurse should explain the benefits that exercise can bring and demonstrate specific exercises to the patient. If the patient is willing to explore exercise as a treatment option, the nurse might refer the patient to a physiotherapist for supervised exercise to provide motivation and feedback. CBT has been shown to reduce depressive symptoms, anxiety and the effects of disability in patients with rheumatoid arthritis (Sharpe et al 2003). Meditation, biofeedback and relaxation have also been shown to be safe and effective means of reducing psychological distress. Patients attending a meditation-based course designed to increase clarity, calm and wellbeing reported a reduction in stress levels (Pradhan et al 2007). In biofeedback, the patient is made aware of the effect that stress can have on wellbeing. He or she may then be able to identify and control triggers of stress, limiting the effect of potential stressors in future. There is insufficient evidence to support the routine prescription of antidepressants in patients with rheumatoid arthritis (Richards et al 2011). NICE (2009) does not recommend the routine use of antidepressants to treat mild depression in patients with a chronic physical health problem, because the benefit-to-risk
3 What services are available in your area to help patients with anxiety and depression. Consider producing a leaflet or poster to display this information on the ward.
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CPD rheumatology nursing ratio is poor. NICE (2009) recommends that antidepressants should be considered for patients with a history of moderate or severe depression, or with mild depression that persists over time.
Pain and fatigue
4 Using the concept of pacing, what advice would you give to a patient who was swimming once a week for one hour, and who is experiencing increased joint pain and fatigue two days after swimming? 5 List all the ways in which rheumatoid arthritis might affect body image. Write down some questions that would enable an exploration of the potential effect of rheumatoid arthritis on body image during a patient assessment.
Pain and fatigue in patients with rheumatoid arthritis can affect psychological wellbeing (Walsh and McWilliams 2014). Patients need advice on managing these symptoms, since a reduction in their pain and fatigue is likely to improve their mood status too. Pacing is one coping strategy that can help an individual to manage pain and fatigue effectively. Pacing involves reviewing the patient’s daily routine and ensuring periods of rest and activity are spread evenly throughout the day. Planning activities over a week, rather than carrying out too many activities in one day, can help patients conserve energy and reduce pain, as well as giving individuals a sense of control over their situation. Complete time out activity 4 Patients can find it useful to keep a diary of their activities, and recording times in the day when their pain and/or fatigue is heightened. Such a diary can identify associations between their activities and their symptoms. An example of this might be doing three hours of continuous housework and experiencing increased pain and fatigue the next day. This realisation might then lead to patients modifying their behaviour, for example by altering their routine so that they do one hour of housework daily over three days. This in turn might reduce the likelihood of increased pain and fatigue the next day. A group CBT self-management programme for fatigue in rheumatoid arthritis, which included goal setting, exploring the associations between cognitions and behaviour, how to engage in exercise and implement energy conservation, demonstrated a reduction in the
BOX 4 Strategies to manage pain Using splints for inflamed joints, such as a wrist splint. Using hot and cold applications, such as heat or ice packs. Taking prescribed analgesia on a regular basis. Completing stretching and strengthening exercises. Minimising exposure to stress. Performing relaxation techniques, such as deep-breathing exercises, meditation, and tensing and relaxing muscles. Pacing activities – balancing exercises with rest.
effects of fatigue as well as a beneficial effect on depression and feelings of helplessness (Hewlett et al 2011). Regular maintained exercise, employing the principles of pacing, can help patients with rheumatoid arthritis to manage joint stiffness and pain, fatigue and muscle weakness, and maintain joint function. Swimming, walking and cycling are recommended forms of exercise for maintaining joint health because they have low impact on the joints. Other methods of pain management are shown in Box 4.
Body image and sexuality Concerns about body image, including worry about physical changes to the joints such as swelling and deformity, are heightened in people with rheumatoid arthritis, and are associated with a poor quality of life (Jorge et al 2010). Other factors that can have a negative effect on body image and sexuality include self-esteem, physical function, the degree of early morning stiffness and low mood (Josefsson and Gard 2010). Approximately 30% of patients report that arthritis makes them feel less attractive. These feelings are associated with high levels of depression and might lead to patients using avoiding and concealing behaviours to reduce noticeability (Monaghan et al 2007). The hands, feet and knees were the body areas most frequently reported as causing distress (McBain et al 2013). Complete time out activity 5 Patients’ body image should be addressed in the nursing assessment, so that any negative thoughts or concerns about body image can be identified. Patients often report feeling clumsy or slow in movement because of perceptions of heaviness in their limbs, or they find that fatigue affects their speed of movement. The nurse can demonstrate exercises to help with stiffness and to improve joint movement. The patient may often feel that being able to do something beneficial means taking some control of the condition, which can improve self-esteem. Patients with rheumatoid arthritis who have persistent negative body perceptions may benefit from referral to a psychologist. If inflammatory changes are occurring in the hands, the nurse may also refer the patient to the occupational therapist for advice on hand exercises and for splinting. Providing advice on choosing suitable supportive footwear
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may avoid the need for bespoke surgical shoes that reinforce the sense of altered body image in some patients. A surgical opinion may be required if there are structural changes in the hands and feet; surgical treatment may be required to relieve symptoms of pain or to correct deformity. The presence of joint pain and stiffness, fatigue and concerns about body image may all have a negative effect on sexuality. Female patients with rheumatoid arthritis report that their reduced range of movement and muscle strength makes it difficult to find a comfortable position during sexual intercourse (Josefsson and Gard 2010). The nurse should discuss with patients whether their condition is affecting their sexuality and may propose self-management techniques such as planning when sexual intercourse will occur, pacing activities to conserve energy, having a hot bath to relax the joints, taking analgesia or using a pillow to support painful joints.
Self-efficacy Symptoms of rheumatoid arthritis can be influenced by psychosocial factors such as self-efficacy: the belief in one’s ability to carry out a specific behaviour with a desired outcome (Bandura 1977). For example, whether an individual engages in a specific behaviour such as exercise to reduce joint stiffness, will be influenced by the individual’s conviction that he or she has the ability to carry out the exercises. It also depends on the value placed on the intended outcome, in this case, a reduction in joint stiffness. When advocating behavioural change, it is useful to ask patients questions such as: ‘how confident are you at carrying out the exercises we have just discussed on a score of 1 to 10?’ If the patient responds with a score of less than 7, it is unlikely he or she will carry out the exercises. The nurse should then explore what action is necessary to increase the score to more than 7, or whether another intervention would be more beneficial. Self-management programmes with an emphasis on learning behavioural skills, such as exercise, relaxation, joint protection and pacing activities, have been shown to increase self-efficacy (Barlow et al 2009). A Cochrane review of 31 patient education programmes concluded that programmes that offered only information and counselling had no additional benefits over usual care (Riemsma et al 2003). However, programmes that included behavioural skills had a
significant but short-term benefit (less than 12 months) on physical function and psychological status in patients with rheumatoid arthritis, providing an additional benefit to routine care (Riemsma et al 2003).
Effects on partners A diagnosis of a long-term condition such as rheumatoid arthritis has the potential to affect not only individuals with the condition but also partners, resulting in emotions such as anger, guilt, helplessness, feelings of loss, and worry and fear of the future (Matheson et al 2010). Participants in one study described the frustration of seeing partners in pain and being unable to help as well as having to forego enjoyable activities (Matheson et al 2010). Another study identified significant financial, physical and psychological strain on spouses (Jacobi et al 2003). Partners employed coping strategies such as maintaining a positive outlook and planning short recreational activities (Mann and Dieppe 2006). Many couples developed a sense of shared ownership of the illness over time (Mann and Dieppe 2006). Most partners wished to be involved in every aspect of care and to be recognised by healthcare professionals as an essential source of support for the patient. They also identified the need for partner support groups (Matheson et al 2010).
Effects on work Patients often express concerns at the time of their diagnosis about their ability to work. The unpredictability of their symptoms can make it difficult to remain in occupations that have a fixed starting time. Joint stiffness can be heightened in the morning, and patients might find they have to get up two or three hours before starting work to enable their joint stiffness to ease. Occupations and employers that endorse flexitime can make it easier for an individual to manage their symptoms. Part-time work, if available and financially viable, can provide the patient with the opportunity for rest periods throughout the week. It can be challenging for people with rheumatoid arthritis to remain in physically demanding work, such as that involving manual labour, where there is daily stress and repetitive strain on joints and muscles. Patients with continual pain, fatigue,
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CPD rheumatology nursing functional disability or high levels of disease activity often have to leave the workforce (McWilliams et al 2013). Factors that would increase the likelihood of remaining in employment, as identified by patients with rheumatoid arthritis, were increased flexibility from their employer and urgent access to the rheumatology team when their condition became active (National Rheumatoid Arthritis Society 2007). If a patient is experiencing difficulties in his or her current employment, then the nurse can refer to the local vocational rehabilitation officer, so that the patient can access information about possible modifications to work environments or about training schemes leading to alternative employment. Complete time out activity 6
Social support
6 List the effects rheumatoid arthritis might have on the family and consider how the family can support the person with the condition. 7 Now that you have completed the article, you might like to write a reflective account. Guidelines to help you are on page 62.
Social support is a major factor of wellbeing with many functions (Box 5). A diagnosis of rheumatoid arthritis can be a strain on the whole family. Roles within the family unit many have to change and not every family member may be receptive to enforced changes. For example, a mother with rheumatoid arthritis may find it difficult to join in physical activities with her children because of physical discomfort in her joints. The nurse can encourage the patient to discuss how to manage the condition with family members so that they feel included in all decisions and
BOX 5 Functions of social support Emotional support. Encouraging communication of feelings. Expressing positive effect. Physical assistance with everyday tasks. Providing information and advice. Providing material aid. Recreational activity and social commitments. Sexual wellbeing. Validating beliefs, emotions and actions.
BOX 6 Support organisations for patients National Rheumatoid Arthritis Society (www.nras.org.uk) Has information for patients and healthcare professionals on all aspects of rheumatoid arthritis and a telephone helpline. Arthritis Research UK (www.arthritisresearchuk.org) Produces patient information leaflets on rheumatoid arthritis. Arthritis Care (www.arthritiscare.org.uk) Has a range of information on coping with the effects of rheumatoid arthritis. There is also a telephone helpline for patients.
role changes can be negotiated and agreed within the family unit. For example, instead of engaging in physical activities with her children, the mother could spend time with her children, taking them to the cinema or going out for a meal. Problems are likely to occur when the person with rheumatoid arthritis feels guilty that the condition is causing changes in the family, and stops communicating or sharing the management of the condition with the family. It can be rewarding to involve the family in many aspects of management, such as swimming to help maintain joint mobility and reduce joint stiffness, as well as creating a fun occasion for the family. Explaining that having periods of rest balanced with periods of activity will help to reduce pain and fatigue. It should also help the family to understand that rest is an important part of coping with the condition and avoid them perceiving rest as a negative activity. Being married is not in itself associated with better health in rheumatoid arthritis, but being in a well-adjusted or non-distressed marriage is linked with less pain and better functioning (Reese et al 2010). For some patients, support groups can remove the potential for isolation as well as providing information and contacts. The three main support organisations offering resources for people with rheumatoid arthritis are shown in Box 6.
Conclusion A diagnosis of rheumatoid arthritis may affect many aspects of psychological wellbeing including mood, body image and social function. Physical symptoms of rheumatoid arthritis such as pain, fatigue and loss of function can also adversely affect wellbeing. The nurse can support patients from the time of diagnosis throughout their care and management. By helping patients to manage their pain and fatigue, and optimise psychosocial functioning, the nurse can help patients improve their physical and psychological wellbeing. Recognising when the patient is anxious or depressed and referring him or her to the appropriate service enables the individual to access appropriate psychological support, as well as improving his or her response to treatment for rheumatoid arthritis NS Complete time out activity 7
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