Perceived barriers to the management of foot health in patients with rheumatic conditions

Nina Lansdowne
Angela Brenton-Rule
Matthew Carroll
Keith Rome
Perceived barriers to the management of foot health in patients with rheumatic conditions
10.1186/s13047-015-0071-zR E S E A R C H Open Access
Background: Rheumatic conditions can have a significant impact on the feet and requires effective management. Podiatric involvement in the management of rheumatic conditions has previously been found to be inadequate in a hospital-setting and no study has examined current trends across New Zealand. The aim was to evaluate the perceived barriers of New Zealand podiatrists in the management of rheumatic conditions. Methods: A cross-sectional observational design using a web-based survey. The self-administered survey, comprising of thirteen questions, was made available to podiatrists currently practicing in New Zealand. Results: Fifty-six podiatrists responded and the results demonstrated poor integration of podiatrists into multidisciplinary teams caring for patients with arthritic conditions in New Zealand. Dedicated clinical sessions were seldom offered (16%) and few podiatrists reported being part of an established multidisciplinary team (16%). A poor uptake of clinical guidelines was reported (27%) with limited use of patient reported outcome measures (39%). The majority of podiatrists expressed an interest in professional development for the podiatric management of arthritic conditions (95%). All surveyed podiatrists (100%) agreed that there should be nationally developed clinical guidelines for foot care relating to arthritis. Conclusions: The results suggest that there are barriers in the involvement of podiatrists in the management of people with rheumatic conditions in New Zealand. Future studies may provide an in-depth exploration into these findings to identify and provide solutions to overcome potential barriers.

Background

Rheumatic conditions is a broad term used to describe a range of disorders of the joints and connective tissues including rheumatoid arthritis (RA), gout, systemic sclerosis, psoriatic arthropathy and systemic lupus erythematosus. These diseases are a leading cause of disability in adults [1,2] and a significant burden on the public healthcare system, both in New Zealand [3] and overseas [4]. In 2010, the prevalence of people aged 15 and over with arthritis was 15% in New Zealand [5]. New Zealand has both a public and private healthcare system but despite the notable burden that rheumatic conditions pose on the public healthcare system in New Zealand [3], there is currently a lack of podiatric integration within rheumatology services and an unmet need for podiatric foot care for patients with rheumatic conditions in NZ [6].

The literature is currently dominated by studies focusing predominantly on people with RA. The provision of foot care and education by the podiatrist is necessary as the feet often present as the initial site of involvement in RA. This can lead to foot pain, impairment and functional disability [6]. The podiatrist's role involves the examination, diagnosis, management and education of foot and lower limb disorders [7]. Regular examination, education and the use of appropriate patient reported outcome measures allows for the monitoring of foot health status and changes, and the effectiveness of foot health interventions [7].

Severe physical, psychological and social consequences can be associated with rheumatic conditions. Therefore, a multidisciplinary management approach has been reported to address all aspects of the complex and variable needs of patients living with rheumatic conditions [8]. A multidisciplinary management approach, when effectively coordinated, has the potential to improve health outcomes, minimize waste and service duplication, and provide more accessible and timely care [9]. The investigation of the effectiveness of a multidisciplinary management approach has seen positive outcomes compared to a rheumatologist-centred approach [10].

Previous studies have reported an increasing request for specialist foot care services, with a strong support for the integration of podiatrists into the multidisciplinary management team for RA and other rheumatic conditions [6][7][8][9][10][11][12][13]. Although guidelines have been published in the UK [13] and Australia [14] for the role of the podiatrist in the multidisciplinary team, there are no national guidelines in New Zealand. While it may be inferred that podiatric management of patients with rheumatic conditions in New Zealand is similar to overseas practice, this area currently remains unknown. Therefore, the aim was to evaluate the perceived barriers to the management of foot health in patients with rheumatic conditions.

Methods

The study was a cross-sectional observational design using a web-based survey. The survey was anonymous, self-administered and comprised of thirteen questions. Participants were recruited from Podiatry New Zealand (http://www.podiatry.org.nz/) and the Australasian Podiatric Rheumatology Special Interest Group (http://www. aprsig.co.nz/), using purposive sampling. Inclusion criteria were podiatrists that held a current New Zealand registration and excluded podiatrists currently practicing outside New Zealand. An overview of the study was displayed on the homepage of the PNZ and APRSIG websites with a hyperlink to the survey and a consent form. The reported response rate for web-based surveys is 30% [14]. Ethical approval was obtained from the Auckland University of Technology Ethics Committee (AUTEC).

The online software, Survey Monkey® (http://www.surveymonkey.com) was used. This software allows users to self-create surveys and is easy to use with a large set of features. Online surveys have the advantages of time efficiency, reduced cost, automated data collection and an ability to overcome distance barriers in participant data collection [15]. The survey questions were modified from a previous study conducted in Australia [13]. A mixture of dichotomous and nominal-polytomous closeended questions were used, which have been shown to yield a higher percentage of answers, less missing data, and more adequate answers in online surveys [16]. The survey concluded with one ranking scale question. To ensure face and content validity the survey was piloted tested with local podiatrists specialising in rheumatology and by three international experts in the field of podiatric rheumatology. We also attempted to reduce both response and non-response bias by undertaking a number of pilot studies that ensured we used clear language, chose words and phrases with care, avoiding leading questions, providing the appropriate amount of options, reducing the number of questions to 13 and keeping the style of the survey to a minimum.

Questions 1-4 sought to obtain background demographic information on participants regarding sex, location of practice, years of registration and highest level of education (Additional file 1). To give insight into the current involvement of New Zealand podiatrists in the management of patients with rheumatic conditions, questions 5, 6, 7, 10 and 13 enquired into which rheumatic conditions they encountered in their practice, which professions were referring into their practice, whether any dedicated clinical sessions for rheumatic conditions were being offered, whether podiatrists are currently a part of a multidisciplinary management team, and their confidence in managing patients with rheumatic conditions.

To give insight into the use of provisions for the management of rheumatic conditions, questions 8, 9 and 11 enquired into the use of guidelines and outcome measures in practice. Question 12 enquired into the podiatrist's opinion on further education, enabling insight into future research directions. Data analysis was conducted using Statistical Package for Social Science (SPSS) (version 20, SPSS Inc., Chicago, IL) with the primary analysis being descriptive statistics.

Results

Fifty-six podiatrists participated in the study (response rate of 30%). Participants were practicing in 11 New Zealand regions, with the majority of respondents (n = 52, 93%) practicing in the North Island cities of Auckland and Wellington. There were a larger proportion of women (n = 34, 61%) than men (n = 22, 39%). The majority of participants had been registered for more than ten years (n = 20, 36%) or under one year (n = 16, 29%). A further 18% (n = 10) of respondents being registered for one to five years and 16% (n = 9) for six to ten years. Most respondents were qualified with a current Bachelor's degree (n = 45, 80%). Six respondents (11%) held a diploma in podiatry and five (9%) held a Bachelor's degree with Honours. Few participants held a Master's degree (n = 4, 6%) or a Doctorate degree (n = 1, 2%).

Eighty-four percent of participants (n = 45) indicated that general practitioners (GPs) refer people with rheumatic conditions into their clinic, making GPs the most common source of referral ( Figure 1). The majority of participants (n = 53, 95%) reported managing people with RA, OA and gout ( Figure 2). Most respondents did not offer clinical sessions specifically for people with rheumatic conditions (n = 45, 80%) and were not part of an established multidisciplinary team managing patients with rheumatic conditions (n = 45, 80%). Those respondents who were part of a multidisciplinary team (n = 9, 16%) indicated other team members to include orthotists, clinical nurse specialists, rheumatologists, researchers, GPs, other podiatrists, and orthopaedic surgeons. Multidisciplinary teams were identified as being located in a university-based podiatric rheumatology clinic and a hospital-based high-risk foot clinic.

Just over one quarter of surveyed podiatrists indicated that they use clinical practice guidelines or protocols when managing people with rheumatic conditions (n = 15, 27%). A visual analogue foot pain scale was the most common outcome measure, used by 50% (n = 28) of respondents, with 39% (n = 22) of respondents indicating that they did not use any outcome measures in their practice. A low usage of other generic or specific foot outcome measures was reported ( Figure 3). All participants responded  positively when asked if there should be locally developed provisional guidelines for the podiatric management of patients with rheumatic conditions in New Zealand. Over 70% (n = 39) indicated that they would use them in their practice and the remaining participants indicated that they would read over them.

We found a large range of confidence in providing podiatric care for people with rheumatic conditions, ranging from feeling very confident to not feeling confident at all. A greater proportion of respondents felt somewhat confident in providing podiatric care for people with RA (n = 39, 70%), osteoarthritis (n = 36, 66%) and gout (n = 33, 59%). Almost all respondents (n = 53, 95%) indicated that they believe there should be more postgraduate opportunities for professional development in podiatric management of rheumatic conditions.

Discussion

The findings of the study demonstrated that the majority of podiatrists were not involved in a multidisciplinary team managing people with rheumatic conditions. As a result, timely access to podiatric care may be hindered or the opportunity for foot care, for individuals with rheumatic conditions, may be missed. This is of significance as previous research has demonstrated that offering a podiatric service to individuals with rheumatic conditions can result in significant improvements in foot pain and disability [9].

With podiatry being a comparatively recently emerging profession, it may be that other health professionals are unaware of the complete role of the podiatrist and presume that all foot care needs can be fulfilled by other practitioners such as nurses and physiotherapists [17]. Further, it remains unknown how many surveyed podiatrists had actively sought to be part of a multidisciplinary team or recognize its value. Often the terms multidisciplinary versus interdisciplinary teams can incorrectly be used interchangeable. Multidisciplinary team approaches utilize the skills and experience of individuals from different disciplines, with each discipline approaching the patient from their own perspective. Interdisciplinary team approaches integrate separate discipline approaches into a single consultation [18]. The development of integrated podiatry care in New Zealand is reported to be progressing slowly with many unresolved challenges [9]. However, the current New Zealand trend toward integrated family health centres may provide opportunities to form effective multidisciplinary teams and partnerships, such as those reported between GPs and nurses [19,20]. The current study revealed that most New Zealand podiatrists are not offering clinical sessions specifically for patients with rheumatic conditions. Similar findings have been reported in the UK [8] and Australia [13] and emphasize the widely occurring inadequacy in foot health provision for people with rheumatic conditions. It is possible that the lack of specific clinical sessions offered by New Zealand podiatrists is reflective of either an underestimation of the burden of foot involvement in rheumatic conditions, particularly given New Zealand's comparatively small population or there is a lack of skills from podiatrists in managing people with rheumatic conditions. Previous studies have reported patient dissatisfaction with the patient-doctor/rheumatologist relationship, alongside feeling that the seriousness of their foot problems are being overlooked [8,10]. Podiatrists are well placed to provide appropriate foot care and act as gatekeepers to other members of the multidisciplinary team, referring them in a timely manner when disease activity is observed [7,9,12,21]. The provision of rheumatologyspecific clinics may facilitate this relationship.

We found that the majority of podiatrists received most referrals from GPs in comparison to other health professions. This referral tendency has also been found in Australia [13] and may reflect a good working relationship between podiatrists and GPs. The relatively low referral rates from other health professions may also be due to a lack of awareness of the podiatrist's role by other health professionals. This lack of understanding of podiatry has also been documented from the patient's perspective and has contributed to the inadequacies in foot care provision and delays in seeking appropriate foot care [8,11].

The current study demonstrated that only 27% of podiatrists were employing clinical guidelines in their practice when managing the foot. The implementation of clinical guidelines into healthcare practice has seen variable uptake despite evidence of improved patient outcomes [7,12,22]. It is unclear why the majority of New Zealand podiatrists surveyed are not using guidelines in their practice. However, it is becoming increasingly apparent that this is a widespread finding, with only 12% of Australian podiatrists adhering to guidelines [12] with similar findings in the UK [23]. A recent UK-based study also reported mixed impact of clinical guidelines from the podiatrist's perspective, with some reporting their helpfulness in improving clinician and patient confidence in the ongoing care provided and others perceiving that patients would lose confidence in them if they knew they were using guidelines [21]. General barriers to use of clinical guidelines by physicians have also been previously reported including: lack of awareness, familiarity, agreement, self-efficacy, outcome-expectancy, inertia of previous practice and external barriers [24]. It is possible New Zealand podiatrists may feel that guidelines developed outside New Zealand are not readily applicable or they are unaware of any guidelines for people with rheumatic conditions, given the differing health care systems and contexts for which they were originally intended.

Despite the poor uptake of existing clinical guidelines, all podiatrists in the current study agreed that there should be national guidelines. This finding reflects positively on the willingness of New Zealand podiatrists to keep updated with best-practice recommendations. Further, in the current study, 70% of participants said they would use locally developed guideline. These findings are suggestive of a positive response if local guidelines for foot care in arthritis were developed, and warrant further exploration into this area. Further, the positive attitude reflected in the current survey may contribute to helping overcome the potential barriers to guideline use, including lack of time in clinical practice to read guidelines, and the existence of a large range of clinical guidelines with overlapping information [22].

We found inconsistencies in the use of outcome measures in clinical practice. Similar to clinical guidelines, outcome measures are an essential component of evidence-based practice and are of benefit at the population and the patient level [25,26]. Barriers to their implementation in palliative care include time management, education, practitioner motivation, finances, the specificity of the outcome measure and education [26]. With the advent of multidisciplinary teams involved in the care of patients with RA, outcome measures can be of benefit to the whole multidisciplinary team [27]. Although the current finding of 40% of podiatrists not using outcome measures in clinical practice is an important finding, this rate is significantly lower than the 71% of those that are not using outcome measures reported in a recent Australian study [13].

Examining the podiatrists' confidence in patient management has found variable results between different arthritic conditions. Podiatrists surveyed in the UK have previously reported confidence in managing aspects of RA [13]. Other rheumatic conditions have not been examined, however, and the podiatrist's confidence in overall management was reported to be lower than that of other health professionals, including physiotherapists and occupational therapists. This has clinical implications as foot problems can be missed if a practitioner's confidence in assessing the feet in rheumatology is lacking.

We found that almost all podiatrists agreed that there should be more opportunities for professional development in arthritis. A recent UK study demonstrated graduate education in rheumatology to be of value to the podiatrist's general career as well as helping maximize their personal and professional development [28]. Research focusing on GPs also showed increased confidence in managing a majority of musculoskeletal conditions with the provision of ongoing education opportunities [29]. Furthermore, it may also be beneficial to the podiatry profession if further education and training involved not only clinical skills, but also explored elements relating to patient satisfaction, which has been reported as a barrier to foot care delivery [7].

The study has limitations. The number of participants represents only 18% of the New Zealand podiatry workforce, since not all registered podiatrists in New Zealand are members of the New Zealand professional body, Podiatry New Zealand (PNZ) or the Australasian Podiatric Rheumatology Special Interest Group (ASPRIG). Therefore, limiting the generalisability of the results to the wider podiatry profession in New Zealand and worldwide [30,31]. While this research examines the podiatrist perspective and current involvement within a multidisciplinary team, future research is warranted to examine trends in the management of people with rheumatic conditions within an integrated care setting. An examination of the perspectives of other health professionals with regard to podiatrists in this setting would also be of value and may provide some direction toward achieving greater integration of podiatrists in multidisciplinary teams and integrated care settings in New Zealand.

Conclusion

This study has provided the first insight into the perceived barriers of podiatric involvement in the management of rheumatic conditions, providing a foundation and direction for further exploration into this area. It seems that a large opportunity exists for New Zealand podiatrists and the podiatry profession to facilitate integration within a multidisciplinary team setting and develop referral pathways to enable the optimal management of the feet. With the need for further education opportunities recognized by all New Zealand podiatrists and their interest in having locally developed guidelines, now appears to be the time to direct resources into moving this area forward in the hopes of improving rheumatic conditions management for both the patient and clinician.

Figure 1
1Bar graphs indicating which health professionals reportedly refer people with rheumatic conditions to Podiatry.

Figure 2
2Bar graphs indicating which rheumatic conditions are reportedly seen within podiatric practice in New Zealand.

Figure 3
3Bar graphs indicating the use of outcome measures when managing foot health in people with rheumatic conditions.
Additional fileAdditional file 1 Online podiatric survey.Competing interestsThe authors declare that they have no competing interests.Authors' contributions NL was responsible for the original conception of the study and design, acquisition of data, and drafting and revising the manuscript. KR, ABR, MC and NL participated in the design of the study, interpretation of data, and helped to draft the manuscript. NL and KR were responsible for the acquisition of data, data analysis, interpretation of data, and helped to draft the manuscript. All authors read and approved the final manuscript.
Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part I. C G Helmick, D T Felson, R C Lawrence, S Gabriel, R Hirsch, C K Kwoh, Arthritis Rheum. 58Helmick CG, Felson DT, Lawrence RC, Gabriel S, Hirsch R, Kwoh CK, et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part I. Arthritis Rheum. 2008;58:15-25.

Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part II. R C Lawrence, D T Felson, C G Helmick, L M Arnold, H Choi, R A Deyo, Arthritis Rheum. 58Lawrence RC, Felson DT, Helmick CG, Arnold LM, Choi H, Deyo RA, et al. Estimates of the prevalence of arthritis and other rheumatic conditions in the United States. Part II. Arthritis Rheum. 2008;58:26-35.

The burden of rheumatic disorders in general practice: consultation rates for rheumatic disease and the relationship to age, ethnicity, and small-area deprivation. W Taylor, L Smeets, J Hall, K Mcpherson, New Zealand Med J. 1171203Taylor W, Smeets L, Hall J, McPherson K. The burden of rheumatic disorders in general practice: consultation rates for rheumatic disease and the relationship to age, ethnicity, and small-area deprivation. New Zealand Med J. 2004;117:1203.

The burden of musculoskeletal disease -a global perspective. P Brooks, Clin Rheumatol. 25Brooks P. The burden of musculoskeletal disease -a global perspective. Clin Rheumatol. 2006;25:778-81.

The economic cost of arthritis in New Zealand. Arthritis New Zealand, Arthritis New Zealand. The economic cost of arthritis in New Zealand in 2010. (http://www.arthritis.org.nz/).

Clinical audit of foot problems in patients with rheumatoid arthritis treated at Counties Manukau District Health Board. K Rome, P Gow, N Dalbeth, J Chapman, J Foot Ankle Res. 216Rome K, Gow P, Dalbeth N, Chapman J. Clinical audit of foot problems in patients with rheumatoid arthritis treated at Counties Manukau District Health Board, Auckland, New Zealand. J Foot Ankle Res. 2009;2:16.

Guidelines for the management of the foot health problems associated with rheumatoid arthritis. A Williams, S Davies, A Graham, A Dagg, K Longrigg, C Lyons, Musculoskel Care. 9Williams A, Davies S, Graham A, Dagg A, Longrigg K, Lyons C, et al. Guidelines for the management of the foot health problems associated with rheumatoid arthritis. Musculoskel Care. 2011;9:86-92.

Provision of foot health services in rheumatology in the UK. A Redmond, R Waxman, P Helliwell, Rheumatology. 45Redmond A, Waxman R, Helliwell P. Provision of foot health services in rheumatology in the UK. Rheumatology. 2006;45:571-6.

A new podiatry service for patients with arthritis. K Rome, K Erikson, A Ng, P Gow, H Sahid, A Williams, N Z Med J. 126Rome K, Erikson K, Ng A, Gow P, Sahid H, Williams A. A new podiatry service for patients with arthritis. N Z Med J. 2013;126(1370):70-7.

Foot health education for people with rheumatoid arthritis: the practitioner's perspective. A Graham, A Hammond, A Williams, J Foot Ankle Res. 52Graham A, Hammond A, Williams A. Foot health education for people with rheumatoid arthritis: the practitioner's perspective. J Foot Ankle Res. 2012;5:2.

Lessons to be learned: review of a multidisciplinary foot clinic in rheumatology. P Helliwell, Rheumatology. 42Helliwell P. Lessons to be learned: review of a multidisciplinary foot clinic in rheumatology. Rheumatology. 2003;42:1426-7.

Clinical practice guidelines for the foot and ankle in rheumatoid arthritis: a critical appraisal. K Hennessy, J Woodburn, M Steultjens, J Foot Ankle Res. 615Hennessy K, Woodburn J, Steultjens M. Clinical practice guidelines for the foot and ankle in rheumatoid arthritis: a critical appraisal. J Foot Ankle Res. 2013;6:15.

Provision of foot health services for people with rheumatoid arthritis in New South Wales: a web-based survey of local podiatrists. G Hendry, K Gibson, K Pile, L Taylor, V Toit, J Burns, J Foot Ankle Res. 635Hendry G, Gibson K, Pile K, Taylor L, Toit V, Burns J, et al. Provision of foot health services for people with rheumatoid arthritis in New South Wales: a web-based survey of local podiatrists. J Foot Ankle Res. 2013;6:35.

Conducting online surveys. V Sue, L Ritter, Sage PublicationsThousand Oaks, CaliforniaSue V, Ritter L. Conducting online surveys. Thousand Oaks, California: Sage Publications; 2007.

Survey says? A primer on web-based survey design and distribution. A J Oppenheimer, C J Pannucci, S J Kasten, S C Haase, Plast Reconstr Surg. 128Oppenheimer AJ, Pannucci CJ, Kasten SJ, Haase SC. Survey says? A primer on web-based survey design and distribution. Plast Reconstr Surg. 2011;128:299-304.

Open-ended versus close-ended questions in web questionnaires. U Reja, K Manfreda, V Hlebec, V Vehovar, Adv Methodol Stats. 19Reja U, Manfreda K, Hlebec V, Vehovar V. Open-ended versus close-ended questions in web questionnaires. Adv Methodol Stats. 2003;19:159-77.

Perceptions of podiatrists and physiotherapists working together in the musculoskeletal service. A Bridgen, S Smith, Podiatry Now. 11Bridgen A, Smith S. Perceptions of podiatrists and physiotherapists working together in the musculoskeletal service. Podiatry Now. 2008;11:23-30.

Interdisciplinary versus multidisciplinary care teams: do we understand the difference?. R L Jessup, Austral Health Rev. 31Jessup RL. Interdisciplinary versus multidisciplinary care teams: do we understand the difference? Austral Health Rev. 2007;31:330-1.

Integrated care in New Zealand. J Cumming, Int J Integrated Care. 1118Special 10 th Anniversary EditionCumming J. Integrated care in New Zealand. Int J Integrated Care. 2011; 11 (Special 10 th Anniversary Edition): e18.

Teamwork: general practitioners and practice nurses working together in New Zealand. M Finlayson, A Raymont, J Primary Health Care. 4Finlayson M, Raymont A. Teamwork: general practitioners and practice nurses working together in New Zealand. J Primary Health Care. 2012;4:150-5.

Factors influencing the patient with rheumatoid arthritis in their decision to seek podiatry. A Blake, P Mandy, G Stew, Musculoskel Care. 11Blake A, Mandy P, Stew G. Factors influencing the patient with rheumatoid arthritis in their decision to seek podiatry. Musculoskel Care. 2013;11:218-28.

Guidelines for the management of people with foot health problems related to rheumatoid arthritis: a survey of their use in podiatry practice. A Williams, G Graham, S Davies, C Bowen, J Foot Ankle Res. 623Williams A, Graham G, Davies S, Bowen C. Guidelines for the management of people with foot health problems related to rheumatoid arthritis: a survey of their use in podiatry practice. J Foot Ankle Res. 2013;6:23.

Identifying patient-reported outcomes in rheumatoid arthritis: the impact of foot symptoms on self-perceived quality of life. S J Otter, K Lucas, K Springett, A Moore, K Davies, A Young, Musculoskel Care. 10Otter SJ, Lucas K, Springett K, Moore A, Davies K, Young A, et al. Identifying patient-reported outcomes in rheumatoid arthritis: the impact of foot symptoms on self-perceived quality of life. Musculoskel Care. 2012;10:65-75.

Potential benefits, limitations, and harms of clinical guidelines. S Woolf, R Grol, A Hutchinson, M Eccles, J Grimshaw, BMJ. 318Woolf S, Grol R, Hutchinson A, Eccles M, Grimshaw J. Potential benefits, limitations, and harms of clinical guidelines. BMJ. 1999;318:527-30.

Getting ready for patient-reported outcome measures (PROMs) in clinical practice. A Wu, C Synder, Healthc Pap. 11Wu A, Synder C. Getting ready for patient-reported outcome measures (PROMs) in clinical practice. Healthc Pap. 2011;11:48-53.

Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. B Antunes, R Harding, I Higginson, Palliat Med. 28Antunes B, Harding R, Higginson I. Implementing patient-reported outcome measures in palliative care clinical practice: a systematic review of facilitators and barriers. Palliat Med. 2013;28:158-75.

Reducing barriers to interprofessional training: promoting interprofessional cultural competence. E Pecukonis, O Doyle, D Bliss, J Interprofessional Care. 22Pecukonis E, Doyle O, Bliss D. Reducing barriers to interprofessional training: promoting interprofessional cultural competence. J Interprofessional Care. 2008;22:417-28.

Training the next generation of clinical researchers: evaluation of a graduate podiatrist research internship in rheumatology. S Naidoo, C Bowen, N Ardern, A Redmond, J Foot Ankle Res. 615Naidoo S, Bowen C, Ardern N, Redmond A. Training the next generation of clinical researchers: evaluation of a graduate podiatrist research internship in rheumatology. J Foot Ankle Res. 2013;6:15.

Improving the quality of care of musculoskeletal conditions in primary care. C Roberts, A O Adebajo, S Long, Rheumatology. 411Roberts C, Adebajo AO, Long S. Improving the quality of care of musculoskeletal conditions in primary care. Rheumatology. 2002;411:503-8.

Foot pain in rheumatoid arthritis prevalence, risk factors and management: an epidemiological study. S J Otter, K Lucas, K Springett, A Moore, K Davies, L Cheek, Clin Rheumatol. 29Otter SJ, Lucas K, Springett K, Moore A, Davies K, Cheek L, et al. Foot pain in rheumatoid arthritis prevalence, risk factors and management: an epidemiological study. Clin Rheumatol. 2010;29:255-71.

Foot problems in a group of patients with rheumatoid arthritis: an unmet need for foot care. P Borman, F Ayhan, F Tuncay, M Sahin, Open Rheumatology J. 6Borman P, Ayhan F, Tuncay F, Sahin M. Foot problems in a group of patients with rheumatoid arthritis: an unmet need for foot care. Open Rheumatology J. 2012;6:290-5.


EMPIRICAL STUDIES Hope in action * facing cardiac death: A qualitative study of patients with life-threatening disease

Aase Margrethe
PhDSchaufel
Department of Public Health and Primary Health Care
University of Bergen
Bergen, Norway

Department of Heart Disease
Haukeland University Hospital
Bergen, Norway

PhDJan Erik Nordrehaug
Department of Heart Disease
Haukeland University Hospital
Bergen, Norway

Institute of Medicine
University of Bergen
Bergen, Norway

PhDKirsti Malterud
Department of Public Health and Primary Health Care
University of Bergen
Bergen, Norway

Research Unit for General Practice
Uni Health
BergenNorway

EMPIRICAL STUDIES Hope in action * facing cardiac death: A qualitative study of patients with life-threatening disease
10.3402/qhw.v6i1.5917(Accepted: 13 February 2011; Published: 18 March 2011)Heart diseaseexistentialismmortalityhopequalitative researchtrust
Coping with existential challenges is important when struck by serious disease, but apart from cancer and palliative care little is known about how patients deal with such issues and maintain hope. To explore how patients with life-threatening heart disease experience hope when coping with mortality and other existential challenges, we conducted a qualitative study with semi-structured interviews. We made a purposive sample of 11 participants (26Á88 years) who had experienced lifethreatening disease: eight participants with serious heart disease, two with cancer, and one with severe chronic obstructive pulmonary disease. Analysis was by systematic text condensation. The findings showed that hope could enhance coping and diminish existential distress when patients were confronted with mortality and other existential challenges. Hope was observed as three types of dynamic work: to shift perception of mortality from overwhelming horror toward suppression or peaceful acceptance, to foster reconciliation instead of uncertainty when adapting to the new phase of life, and to establish go-ahead spirit instead of resignation as their identity. Meaning of life could, hence, be sustained in spite of serious threats to the persons' future, everyday life, and self-conception. The work of hoping could be supported or disturbed by relationships with family, friends, and health care professionals. Hope can be regarded as an active, dynamic state of existential coping among patients with life-threatening disease. Physicians may support this coping and thereby provide personal growth and alleviation of existential distress by skillfully identifying, acknowledging, and participating in the work of hoping performed by the patient.

Introduction

Coping with existential challenges among patients with life-threatening disease has been increasingly explored concerning cancer and palliative care (Henoch & Danielson, 2009;LeMay & Wilson, 2008). Though existential issues need not result in distress (Blinderman & Cherny, 2005), it is important for health care providers to be able to identify and address these aspects of patients' experiences due to potential negative consequences like anxiety, depression, and loss of will to live (Chochinov et al., 2005;McCoubrie & Davies, 2006) as well as predicting positive outcomes (Vollman, LaMontagne, & Wallston, 2009) and understanding complex decision-making processes (Schaufel, Nordrehaug, & Malterud, 2009). Existential distress is ''the distressed state of an individual confronting their own mortality, and arising from the consequent feelings of powerlessness, futility, meaninglessness, disappointment, remorse, death anxiety and the disruption of personal identity; the experience of life without meaning'' (Kissane, 2000). Physicians who intend to support patients in these states need knowledge and skills that focus on the individual person and narrative understanding (Charon, 2006;Greenhalgh & Hurwitz, 1999;Sundin, Bruce, & Barremo, 2010), enhancing the patient's strong sides (Hollnagel & Malterud, 1995).

Little is known about how cardiac patients are confronted with existential challenges (Selman, Beynon, Higginson, & Harding, 2007) and how they experience hope when exposed to life-threatening heart disease (Davidson, Dracup, Phillips, Daly, & Padilla, 2007a). In a study among terminally ill persons, hope was described as ''a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant'' (Dufault & Martocchio, 1985). Hope is viewed as a central yet complex phenomenon when facing life-threatening disease (Johnson, 2007;McClement & Chochinov, 2008), and the conceptualization and meaning of hope among cardiac patients need further investigation (Davidson et al., 2007a;Kristofferzon, Lofmark, & Carlsson, 2008;Rustoen, Howie, Eidsmo, & Moum, 2005). Based on this knowledge gap and our clinical experience with patients with serious heart disease in hospital (MAS and JEN) and general practice (KM), we chose cardiac patients as our main sources when we wanted to develop knowledge about how people experience hope when confronted with serious disease and mortality.

Objective

We set up a study to explore how hope can be experienced by patients with life-threatening heart disease when coping with mortality and other existential challenges.

Methods

We conducted a qualitative study based on semistructured, individual interviews (Kvale, 1996). Such interviews are suitable to develop knowledge about experiences, compared to, for instance, observational studies where there is no access to what is behind actions and expressions. We chose individual and not group interviews as the topic may be regarded as deeply personal and thereby easier to discuss in a one-to-one setting.

Ethics statement

This study was conducted according to the principles of the Declaration of Helsinki. Ethical approval was obtained from The Regional Committee for Medical Research Ethics (nr 06/1943) and The Norwegian Social Science Data Services (nr 14818). Informed consent was obtained from all participants.

Participants

The first author (MAS) interviewed individuals constituting a purposive sample of 11 participants (six women) aged 26Á88 years, where diversity regarding age, sex, cardiac diagnosis, religion, and education was aimed for. Participants were recruited among patients at a cardiac department handling more than 6000 emergency admissions a year. They had all been struck by life-threatening disease including ventricular arrhythmias, STE-ACS (STelevation acute coronary syndrome), nSTE-ACS (non-ST-elevation acute coronary syndrome), severe mitral valve regurgitation, severe aortic stenosis, severe heart failure (New York Heart Association class IV), dilated cardiomyopathy (ejection fraction 20%), and pulmonary edema. In addition, one participant with metastatic breast cancer, one with lung cancer, and one with severe COPD (chronic obstructive pulmonary disease GOLD stage IV) from the same hospital were chosen to supplement and challenge the cardiac sample. The time between their first experience of the actual disease and the interview varied from 3 days to 11 years.

Data collection

We used semi-structured interviews (16Á71 min) to collect data April 2007 until May 2009 (Kvale, 1996). The interviews took place in the hospital. The questions covered experiences of existential character related to their illness, taking Vetlesen's unalterable fundamental conditions of existence as a starting point (mortality, vulnerability, dependence, existential loneliness, and the fragility of relations) (Vetlesen & Irons, 2009). The participants were asked questions like ''Could you tell me about a situation in your illness trajectory where you faced mortality in a particular way?'' After the first five interviews and preliminary analysis, the interview guide was revised closer to everyday language with questions like ''How has the illness affected you as a human being?'' Interviews were audio-taped, transcribed, and encrypted. Data collection was closed when saturation was achieved and new main issues did not appear in subsequent interviews.

Analysis

The analysis was performed in collaboration by the authors MAS and KM following systematic text condensation (Malterud, 1993). Analysis proceeded through the following stages: (1) reading all the material to obtain an overall impression, bracketing previous preconceptions; (2) identifying units of meaning, representing different aspects of the participants' existential experiences of hope, and coding for these; (3) condensing and abstracting the meaning within each of the coded groups; and (4) summarizing the contents of each code group to generalized descriptions and concepts reflecting the most important aspects of existential experiences of hope reported by the participants. When the main themes were identified after thorough discussion between MAS and KM, the units of meaning were systematically obtained by scrutinizing the text line by line, looking for material that could shed light on the study's objectives. At the last analytical stage (4) we assessed our findings' relevance by comparing them to existing empirical studies and theory on the matter, thereby deciding the need for additional analytical discussion and review. Analysis was done stepwise with new interviews supplementing the sample, and a decision trail (Whitehead, 2004) documented the choices during the analytical process. We used an inductive editing analysis style as described by Crabtree and Miller (1999). Their theories add further perspectives to how the analytical process is conducted, particularly to which extent it is theory-driven, data-driven, or obtains an in-between, editing position like the one we have chosen. This analytical position allows the categories to be developed from the empirical data while at the same time acknowledging that the theoretical framework will influence the patterns identified. Inspired by Vetlesen, our findings reflected different aspects of his unalterable fundamental conditions (Vetlesen & Irons, 2009), but were not organized in a theorydriven template analysis style. Comparison between different patient categories was done after all the interviews had been incorporated into the analysis by extracting the non-cardiac participants' material from the rest. After the differences and similarities had been studied and evaluated, the non-cardiac participants were reintegrated to illustrate these findings.

Findings

Hope could enhance coping and diminish existential distress when patients were confronted with mortality and other existential challenges. Hope was observed as three types of dynamic work: to shift perception of mortality from overwhelming horror toward suppression or peaceful acceptance, to foster reconciliation instead of uncertainty when adapting to the new phase of life, and to establish go-ahead spirit instead of resignation as their identity. Meaning of life could, hence, be sustained in spite of serious threats to the persons' future, everyday life, and self-conception. The work of hoping could be supported or disturbed by relationships with family, friends, and health care professionals.

The cardiac patients normalized their condition to a greater extent than the non-cardiac sources, who seemed to be more intensely confronted with death. However, they all focused on positive aspects of their lives, their abilities, and meaningful relationships when performing the work of hoping. Below we elaborate especially on the findings from the cardiac sample.

Perceiving the realities of death*between overwhelming horror and peaceful acceptance

The experience of hope was described in a variety of ways among participants when confronted with death and mortality. Some of them said that they did not want to admit that their symptoms could be that serious and became overwhelmed when given the diagnosis. One described it like being startled, as if someone had slapped his face. Thoughts and concerns about their children, spouse, and job flashed through their mind. A dawning horror could be experienced as an atmosphere of seriousness filling the room and procedures like urinary tract catheterization being carried out with little information. A woman in her 40s with severe heart failure described it like this:

It was one shock after the other, and they talked about heart transplant, and I had an ICD [implantable cardioverter defibrillator] implanted. And I haven't managed to digest it all yet, because it's been such a short time and I am still working on it. (Megan) As a contrast, quite a few participants stated that they were not anxious nor feeling especially vulnerable or confronted with death even though they had experienced serious and life-threatening heart disease. They chose to think they would have a good prognosis, and viewed death as something natural that would happen to everyone some day. Dying from a heart attack was even perceived to be a good death, described as just turning off the light. Several were spiritual or religious, but did not specifically seek consolation or strength in their faith when coping with illness and mortality. The older participants had a particularly relaxed view on death. They lived from one week to another, not looking far ahead, expressed by a vital woman in her 80s suffering from severe mitral valve leakage: was afraid I might not wake up again, but I've got nothing to lose, so I don't care. Either I will see my [deceased] husband again, or I will meet the angels working on this ward. (Clare) A striking similarity in peaceful acceptance was declared by one of the youngest participants, describing hope in a peculiar way. Being in her 30s and knowing that her cancer disease was terminal, she did not connect her hope to being cured but to a meaningful present: I don't have a hope for a future because I've realized that I don't have a future. And it doesn't hurt to think about it, because what I'm doing is having a good time right now. My hope is not connected to the length of a future, but to the contents of the present. (Angela)
If
Adapting to the new phase of life*between reconciliation and uncertainty

All of our participants with cardiac disease focused on the positive sides of life and everything they could be grateful for. They tried to reconcile themselves with the situation, valuing the level of functioning that they had. Some of them regarded themselves as being fortunate compared to those worse off. Many of them were content with their life as it was, although marked by illness. Similarly, the participants with non-cardiac disease tried to forget about the symptoms and clung to a positive attitude. Maintaining a good spirit and humor was important to them. It was acknowledged as part of life to cope with the different ups and downs and they just had to make the best of it, expressed by this man in his 70s admitted with acute coronary syndrome:

I'll just have to live with it. You cannot keep pondering on it. It's useless. You have to take what comes in this world. There's not much more you can do about it. You could take your precautions, you know, but apart from that there's not much you can do. (Jordan) As a contrast, some struggled with a profound sense of uncertainty. They were afraid how the disease might progress, what the future would be like, and were troubled by death anxiety. Uncertainty was increased by discontinuity and insecurity of not knowing who your physician would be from day to day, and difficulties understanding the messages delivered to them by the physicians. They stated that the most important thing for them to feel secure would have been more information and the experience of being listened to. Struggling with anxiety some lay awake at night, like a man in his 20s with recurrent ventricular tachycardia, afraid of another episode of arrhythmia: I'm very cautious. I don't dare to exercise or push myself, because I'm thinking maybe. . . ( . . .) I've been awake many nights, not being able to sleep. I just seem to be lying there and feel my heart. It's disturbing. (Charles)

Identity as seriously ill*between go-ahead spirit and resignation

Both the participants with heart disease and the ones suffering from non-cardiac illness revealed eagerness and motivation to fight the restrictions of the disease and make life style changes. They wanted to go back to work and handle as much as possible on their own. They identified themselves strongly with being persons that did not give up and forced themselves forward. Some engaged in meaningful hobbies, giving them a sense of achievement. Reaching some of their goals, like being able to perform some tasks at work or be useful to others, was experienced as rewarding and inspiring and made them proud. They valued and revealed their own strengths, like the oldest participant approaching her 90s:

He [the physician] said: ''We've done some investigations. It looks like you're a very strong lady.'' And I heard it when they were performing the thing down here [gastroscopy]. I didn't move a finger. ( . . .) No, I didn't make a single move. And then he told the one next to him: ''This is an exceptionally stable lady.'' (Clare)

On the other hand, some of them faced hopelessness, helplessness, and inadequacy. At some point they doubted that they would recover, and were so ill that they were not able to manage basic tasks like eating, washing themselves, or getting dressed. This was experienced as one of the worst parts of being severely ill both by the cardiac and non-cardiac participants. Some of them literally felt as if their heart was worn out and hope was gone. Asking for help was difficult, as they naturally preferred to be independent. They felt sorry they could no longer do all the things they wanted or had been used to, like this woman with dilated cardiomyopathy:
I

The impact of relationships*between support and concern

Almost everyone in this study pointed to the great importance of spending time with family and friends by whom they felt supported and cared for. Several of them obtained hope and inspiration from knowing and talking to friends or relatives who had survived the same disease and who now lived good lives. Some of the cardiac participants were leaning on the fact that coronary heart disease is common. If others had survived it, so would they. A common hope for the present and for the future was expressed by the spouse of one of the participants suffering from acute coronary syndrome, ventricular tachycardia, and heart failure:

It's actually been almost 8 years now that he's been well. And now he's getting this heart starter. Then we hope everything will be ok this time, too. (Anne) The work of hoping described above could also be challenged and disturbed by relationships. Some of the non-cardiac as well as some cardiac participants said that their disease was just as horrible or even worse for their significant others to cope with. Discussions and interactions could be difficult. Children were a source of inspiration and meaning but could also cause tremendous worries, expressed by a man in his 50s suffering from lung cancer: She [daughter] had read on the Internet, and of course she was worried about her father. It would have been horrible if she wasn't. And she finds it hard to talk about. But what constitutes the difficulty is this: are you gonna die from it?

The feeling of being taken care of by skilled personnel provided the participants with hope. The majority of them displayed a profound trust in the health care professionals, and they got relieved when the physicians said that everything would turn out fine or that together they should do something about it. The opposite was experienced when they felt that the physicians did not know exactly what to do and what illness trajectory to expect. They scrutinized the meaning of the physicians' words in order to find out if they were going to die or if they could be cured. Most of them felt secure and content at the hospital, expressed like this: I'm under total control and assume that they [the physicians] are doing their best. That's how it appears to me. Someone out on the streets might be more exposed than I am as a patient. (Paul)

Discussion

This study has demonstrated how patients with lifethreatening disease may apply hope when coping with mortality, their new life situation, and identity. Below, we discuss the strengths and limitations of the study design and the impact of our findings.

Validity and transferability

The interviews took place in the hospital in which the participants presently received treatment and were performed by an affiliated physician. However, their balanced accounts of both positive and negative aspects of the care received and their personal life make it likely that they disclosed their stories in honest terms. The asymmetrical power relation was somehow reduced by the fact that the interviewer was a woman of young age. Timing of the interviews also had an impact on the data. Several of the participants with acute coronary syndromes, where rapid and effective treatment is available, were interviewed a couple of days after the intervention and gratefully focused on being alive and well treated. Their answers probably illustrated how coronary intervention may instill a placebo effect against existential challenges because of its strong symbolic meaning of technical protection from death.

The theoretically based concepts in the initial interview guide were too complicated for some of the participants. Developing new questions based on their own language made our data collection more tuned to their authentic stories. We did not ask specifically how they experienced hope, but converged around this concept from the various descriptions of participants' challenges as patients.

Applying an inductive bottom-up method, we approached at the meaning, content, and function of the concept ''hope in action,'' which gives our material additional relevance and pragmatic validity compared to other studies. Our goal was not to estimate hope related to a certain point in an illness trajectory, but to develop knowledge about how this can be experienced and enacted when struck by serious disease.

Our participants were mostly suffering from heart disease and recruited from one hospital. However, the fact that their diagnosis, age, and time lived with the disease varied considerably and adds transferability to the material. The accounts of the participants with non-cardiac illness also demonstrated a similar work of hoping to maintain their identity, everyday life, and meaning, although they seemed to normalize their condition to a lesser extent. Thus our findings may be applied in other clinical contexts where an illness is potentially lifethreatening. Our study was, however, carried out in a modern western hospital with only White participants and the majority described themselves as either Christians or non-religious. The results may, therefore, not be transferable to a different cultural and religious setting.

Hope as existential coping

The findings of this study are consistent with previous research demonstrating how cardiac patients may face existential uncertainty (Bremer, Dahlberg, & Sandman, 2009;Jensen & Petersson, 2003), death (Stromberg & Jaarsma, 2008), challenges regarding relations and self-conceptions (Leegaard & Fagermoen, 2008), and yet create a sense of coherence (Antonovsky, 1987;Norekval et al., 2009). We also confirm the importance of different attributes of hope when experiencing lifethreatening disease (Johnson, 2007;Roberts, Johnson, & Keely, 1999) and the association between hope and coping (Felder, 2004;Herth, 1990). Our study adds to previous knowledge by presenting empirically based descriptions of how patients perform a dynamic work of hoping when facing mortality within the curative paradigm of cardiology. It demonstrates how these patients cope with existential challenges by applying hope to fight existential distress, and shows how physicians are in a special position of supporting or disrupting the work of hope among their patients. This can serve as a basis for developing supporting strategies among physicians and other health care professionals. Our study also provides more knowledge about how patients with life-threatening disease perceive their situation and offers guidance to how existential distress can be approached. It deepens our understanding of similarities and differences of experiencing severe heart disease compared to other serious illnesses.

Patients' wish and need to live a normal life and ''false optimism'' about recovery has previously been presented in cancer research (Bertero, Vanhanen, & Appelin, 2008;The, Hak, Koeter, & van Der Wal, 2000). These patients may be viewed by some health care professionals to be in a state of denial, even though they are actually coping with their lifethreatening illness (Wilkinson, 1996). Coping strategies among cardiac patients have been described as avoidance, disavowal, denial, and acceptance (Buetow, Goodyear-Smith, & Coster, 2001). Disavowal in this context can rather be considered a ''healthy denial,'' through which ''patients, who basically understand the threat to their life situations, seek hope through positively reconstructing this threat'' (Buetow et al., 2001). This coping strategy resembles the way our participants reached a state of reconciliation. Learning from the patients about the different elements of hope that are helpful to them and can be nurtured is essential to facilitate coping (Herrestad & Biong, 2010). By understanding the multidimensionality of hope, physicians may contribute to a salutogenic effect helping the patients to create meaning in their new life situation and address important issues of concern:

[A]cknowledging of the changing of life circumstances; restructuring of daily life and expectations; help in dealing with vulnerabilities; information, support and incorporation in care planning; and support to achieve normalization and resolution of uncertainty. (Davidson, Dracup, Phillips, Padilla, & Daly, 2007b) From an existential point of view, the unalterable fundamental conditions of existence offer conceptual tools relevant to health care for perceiving what constitute our lives and our interactions (Aase, Nordrehaug, & Malterud, 2008;Schaufel et al., 2009;Vetlesen & Irons, 2009). These conditions are universal characteristics of human life, comprising certain given phenomena we cannot avoid or escape as human beings. Mortality as an unalterable condition for being human must be acknowledged in health care despite technological advances in order to impart honest information and provide adequate care. Thus, the entire field of cardiology*not only the domain of heart failure*may profit by integrating knowledge from palliative care (Goodlin, 2009) where the different dimensions of human life are dealt with in order to promote the patient's quality and authenticity of life and death.

Conclusions

Hope can be regarded as an active, dynamic state of existential coping among patients with life-threatening disease. Physicians may support this coping and thereby provide personal growth and alleviation of existential distress by skillfully identifying, acknowledging, and participating in the work of hoping performed by the patient. This implies attentive listening and adequate information, as well as helping the patient focus on personal resources, supporting relationships, and meaningful activities.

try to go for a little walk and keep feeling this inadequacy. (. . .) It's hard when you sense that you cannot do what you want. I spent an evening being totally depressed because I'll maybe never

Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917

I don't undergo surgery, the physician said I would have from 4 months to 1 year more to live with the [valve] leakage I have today. He asked if I Hope in action*facing cardiac death Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917
M. A. Schaufel et al. 2 (page number not for citation purpose) Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917
(page number not for citation purpose)
Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917
(page number not for citation purpose) Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917
(page number not for citation purpose) Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917
AcknowledgementsWe would like to thank the patients who participated in this study.Conflict of interest and fundingThis study was funded by the Western Norway Regional Health Authority. The authors have not received any funding or benefits from industry to conduct this study.
If you cannot tolerate that risk, you should never become a physician'': A qualitative study about existential experiences among physicians. M Aase, J E Nordrehaug, K Malterud, Journal of Medical Ethics. 3411Aase, M., Nordrehaug, J. E., & Malterud, K. (2008). If you cannot tolerate that risk, you should never become a physician'': A qualitative study about existential experiences among physicians. Journal of Medical Ethics, 34(11), 767Á 771.

Unraveling the mystery of health: How people manage stress and stay well. A Antonovsky, Jossey-BassSan FranciscoAntonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco: Jossey-Bass.

Receiving a diagnosis of inoperable lung cancer: Patients' perspectives of how it affects their life situation and quality of life. C Bertero, M Vanhanen, G Appelin, Acta Oncologica. 475Bertero, C., Vanhanen, M., & Appelin, G. (2008). Receiving a diagnosis of inoperable lung cancer: Patients' perspectives of how it affects their life situation and quality of life. Acta Oncologica, 47(5), 862Á869.

Existential issues do not necessarily result in existential suffering: Lessons from cancer patients in Israel. C D Blinderman, N I Cherny, Palliative Medicine. 195Blinderman, C. D., & Cherny, N. I. (2005). Existential issues do not necessarily result in existential suffering: Lessons from cancer patients in Israel. Palliative Medicine, 19(5), 371Á380.

To survive outof-hospital cardiac arrest: A search for meaning and coherence. A Bremer, K Dahlberg, L Sandman, Qualitative Health Research. 193Bremer, A., Dahlberg, K., & Sandman, L. (2009). To survive out- of-hospital cardiac arrest: A search for meaning and coher- ence. Qualitative Health Research, 19(3), 323Á338.

Coping strategies in the self-management of chronic heart failure. S Buetow, F Goodyear-Smith, G Coster, Family Practice. 182Buetow, S., Goodyear-Smith, F., & Coster, G. (2001). Coping strategies in the self-management of chronic heart failure. Family Practice, 18(2), 117Á122.

Narrative medicine: Honoring the stories of illness. R Charon, Oxford University PressNew YorkCharon, R. (2006). Narrative medicine: Honoring the stories of illness. New York: Oxford University Press.

Understanding the will to live in patients nearing death. H M Chochinov, T Hack, T Hassard, L J Kristjanson, S Mcclement, M Harlos, Psychosomatics. 461Chochinov, H. M., Hack, T., Hassard, T., Kristjanson, L. J., McClement, S., & Harlos, M. (2005). Understanding the will to live in patients nearing death. Psychosomatics, 46(1), 7Á 10.

B F Crabtree, Miller, Doing qualitative research in primary care: Multiple strategies. W. L.Newbury Park, CASage Publications2nd ed.Crabtree, B. F., & Miller, W. L. (Eds.). (1999). Doing qualitative research in primary care: Multiple strategies (2nd ed.). New- bury Park, CA: Sage Publications.

Preparing for the worst while hoping for the best: The relevance of hope in the heart failure illness trajectory. P M Davidson, K Dracup, J Phillips, J Daly, G Padilla, Journal of Cardiovascular Nursing. 223Davidson, P. M., Dracup, K., Phillips, J., Daly, J., & Padilla, G. (2007a). Preparing for the worst while hoping for the best: The relevance of hope in the heart failure illness trajectory. Journal of Cardiovascular Nursing, 22(3), 159Á165.

Maintaining hope in transition: A theoretical framework to guide interventions for people with heart failure. P M Davidson, K Dracup, J Phillips, G Padilla, J Daly, 58á64, K Dufault, B C Martocchio, Journal of Cardiovascular Nursing. 221Nursing Clinics of North AmericaDavidson, P. M., Dracup, K., Phillips, J., Padilla, G., & Daly, J. (2007b). Maintaining hope in transition: A theoretical framework to guide interventions for people with heart failure. Journal of Cardiovascular Nursing, 22(1), 58Á64. Dufault, K., & Martocchio, B. C. (1985). Symposium on compassionate care and the dying experience. Hope: Its spheres and dimensions. Nursing Clinics of North America, 20(2), 379Á391.

Hope and coping in patients with cancer diagnoses. B E Felder, 320á324, S J Goodlin, Journal of the American College of Cardiology. 274Cancer NursingFelder, B. E. (2004). Hope and coping in patients with cancer diagnoses. Cancer Nursing, 27(4), 320Á324. Goodlin, S. J. (2009). Palliative care in congestive heart failure. Journal of the American College of Cardiology, 54(5), 386Á396.

Narrative based medicine: Why study narrative?. T Greenhalgh, B Hurwitz, 48Á 50British Medical Journal. 3187175Greenhalgh, T., & Hurwitz, B. (1999). Narrative based medicine: Why study narrative? British Medical Journal, 318(7175), 48Á 50.

Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. I Henoch, E Danielson, Psychooncology. 183Henoch, I., & Danielson, E. (2009). Existential concerns among patients with cancer and interventions to meet them: An integrative literature review. Psychooncology, 18(3), 225Á236.

Relational hopes: A study of the lived experience of hope in some patients hospitalized for intentional self-harm. H Herrestad, S Biong, doi: 10.3402/ qhw.v5i1.4651International Journal of Qualitative Studies on Health and Well-Being. 5Herrestad, H., & Biong, S. (2010). Relational hopes: A study of the lived experience of hope in some patients hospitalized for intentional self-harm. International Journal of Qualitative Studies on Health and Well-Being, 5, doi: 10.3402/ qhw.v5i1.4651

Fostering hope in terminally-ill people. K Herth, Journal of Advanced Nursing. 1511Herth, K. (1990). Fostering hope in terminally-ill people. Journal of Advanced Nursing, 15(11), 1250Á1259.

Shifting attention from objective risk factors to patients' self-assessed health resources: A clinical model for general practice. H Hollnagel, K Malterud, Family Practice. 124Hollnagel, H., & Malterud, K. (1995). Shifting attention from objective risk factors to patients' self-assessed health re- sources: A clinical model for general practice. Family Practice, 12(4), 423Á429.

The illness experiences of patients after a first time myocardial infarction. B O Jensen, K Petersson, Patient Education and Counseling. 512Jensen, B. O., & Petersson, K. (2003). The illness experiences of patients after a first time myocardial infarction. Patient Education and Counseling, 51(2), 123Á131.

Hope in terminal illness: An evolutionary concept analysis. S Johnson, International Journal of Palliative Nursing. 139Johnson, S. (2007). Hope in terminal illness: An evolutionary concept analysis. International Journal of Palliative Nursing, 13(9), 451Á459.

Psychospiritual and existential distress. The challenge for palliative care. D W Kissane, Australian Family Physician. 2911Kissane, D. W. (2000). Psychospiritual and existential distress. The challenge for palliative care. Australian Family Physician, 29(11), 1022Á1025.

Managing consequences and finding hope Á Experiences of Swedish women and men 4Á6 months after myocardial infarction. M L Kristofferzon, R Lofmark, M Carlsson, Scandinavian Journal of Caring Sciences. 223Kristofferzon, M. L., Lofmark, R., & Carlsson, M. (2008). Managing consequences and finding hope Á Experiences of Swedish women and men 4Á6 months after myocardial infarction. Scandinavian Journal of Caring Sciences, 22(3), 367Á375.

Interviews: An introduction to qualitative research interviewing. S Kvale, SageThousand Oaks, CAKvale, S. (1996). Interviews: An introduction to qualitative research interviewing. Thousand Oaks, CA: Sage.

Patients' key experiences after coronary artery bypass grafting: A synthesis of qualitative studies. M Leegaard, M S Fagermoen, Scandinavian Journal of Caring Sciences. 224Leegaard, M., & Fagermoen, M. S. (2008). Patients' key experiences after coronary artery bypass grafting: A synthesis of qualitative studies. Scandinavian Journal of Caring Sciences, 22(4), 616Á628.

Treatment of existential distress in life threatening illness: A review of manualized interventions. K Lemay, K G Wilson, Clinical Psychology Review. 283LeMay, K., & Wilson, K. G. (2008). Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review, 28(3), 472Á493.

Shared understanding of the qualitative research process. Guidelines for the medical researcher. K Malterud, Family Practice. 102Malterud, K. (1993). Shared understanding of the qualitative research process. Guidelines for the medical researcher. Family Practice, 10(2), 201Á206.

Hope in advanced cancer patients. S E Mcclement, H M Chochinov, European Journal of Cancer. 448McClement, S. E., & Chochinov, H. M. (2008). Hope in advanced cancer patients. European Journal of Cancer, 44(8), 1169Á1174.

Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer? Support Care Cancer. R C Mccoubrie, A N Davies, 379á385, T M Norekval, B Fridlund, P Moons, J E Nordrehaug, H I Saevareid, T Wentzel-Larsen, Journal of Clinical Nursing. 144Sense of coherence*A determinant of quality of life over time in older female acute myocardial infarction survivorsMcCoubrie, R. C., & Davies, A. N. (2006). Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer? Support Care Cancer, 14(4), 379Á385. Norekval, T. M., Fridlund, B., Moons, P., Nordrehaug, J. E., Saevareid, H. I., Wentzel-Larsen, T., et al. (2009). Sense of coherence*A determinant of quality of life over time in older female acute myocardial infarction survivors. Journal of Clinical Nursing, 19(5Á6), 820Á831.

Fostering hope in the elderly congestive heart failure patient in critical care. S L Roberts, L H Johnson, B Keely, Geriatric Nursing. 204Roberts, S. L., Johnson, L. H., & Keely, B. (1999). Fostering hope in the elderly congestive heart failure patient in critical care. Geriatric Nursing, 20(4), 195Á199.

Hope in patients hospitalized with heart failure. T Rustoen, J Howie, I Eidsmo, T Moum, American Journal of Critical Care. 145Rustoen, T., Howie, J., Eidsmo, I., & Moum, T. (2005). Hope in patients hospitalized with heart failure. American Journal of Critical Care, 14(5), 417Á425.

So you think I'll survive?'': A qualitative study about doctorpatient dialogues preceding high-risk cardiac surgery or intervention. M A Schaufel, J E Nordrehaug, K Malterud, Heart. 9515Schaufel, M. A., Nordrehaug, J. E., & Malterud, K. (2009). So you think I'll survive?'': A qualitative study about doctor- patient dialogues preceding high-risk cardiac surgery or intervention. Heart, 95(15), 1245Á1249.

Psychological, social and spiritual distress at the end of life in heart failure patients. L Selman, T Beynon, I J Higginson, R Harding, Current Opinion in Supportive and Palliative Care. 14Selman, L., Beynon, T., Higginson, I. J., & Harding, R. (2007). Psychological, social and spiritual distress at the end of life in heart failure patients. Current Opinion in Supportive and Palliative Care, 1(4), 260Á266.

Thoughts about death and perceived health status in elderly patients with heart failure. A Stromberg, T Jaarsma, European Journal of Heart Failure. 106Stromberg, A., & Jaarsma, T. (2008). Thoughts about death and perceived health status in elderly patients with heart failure. European Journal of Heart Failure, 10(6), 608Á613.

Elderly women's experiences of support when living with congestive heart Hope in action*facing cardiac death Citation. K Sundin, E Bruce, A S Barremo, 10.3402/qhw.v6i1.5917Int J Qualitative Stud Health Well-being. 6Sundin, K., Bruce, E., & Barremo, A. S. (2010). Elderly women's experiences of support when living with congestive heart Hope in action*facing cardiac death Citation: Int J Qualitative Stud Health Well-being 2011; 6: 5917 -DOI: 10.3402/qhw.v6i1.5917

. 10.3402/qhw.v5i2.5064International Journal of Qualitative Studies on Health and Well-Being. 5failure. International Journal of Qualitative Studies on Health and Well-Being, 5, doi: 10.3402/qhw.v5i2.5064

Collusion in doctor-patient communication about imminent death: An ethnographic study. A M The, T Hak, G Koeter, Van Der, G Wal, British Medical Journal. 3217273The, A. M., Hak, T., Koeter, G., & van Der Wal, G. (2000). Collusion in doctor-patient communication about imminent death: An ethnographic study. British Medical Journal, 321(7273), 1376Á1381.

A philosophy of pain. A J Vetlesen, J Irons, ReaktionLondonVetlesen, A. J., & Irons, J. (2009). A philosophy of pain. London: Reaktion.

. M W Vollman, L L Lamontagne, K A Wallston, Vollman, M. W., LaMontagne, L. L., & Wallston, K. A. (2009).

Existential well-being predicts perceived control in adults with heart failure. Applied Nursing Research. 223Existential well-being predicts perceived control in adults with heart failure. Applied Nursing Research, 22(3), 198Á203.

Enhancing the quality of hermeneutic research: Decision trail. L Whitehead, Journal of Advanced Nursing. 455Whitehead, L. (2004). Enhancing the quality of hermeneutic research: Decision trail. Journal of Advanced Nursing, 45(5), 512Á518.

The concept of hope in life-threatening illness. K Wilkinson, Professional Nurse. 1110Wilkinson, K. (1996). The concept of hope in life-threatening illness. Professional Nurse, 11(10), 659Á661.