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Bay, A., Lämås, K., Berghammer, M., Sandberg, C. & Johansson, B. (2019). Enablers and barriers for physical activity in adults with congenital heart disease. In: : . Paper presented at Berzelius symposium 99, The Cardiac Patient from Birth to Adulthood, Stockholm, Sweden, 21-22 February 2019..
Open this publication in new window or tab >>Enablers and barriers for physical activity in adults with congenital heart disease
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2019 (English)Conference paper, Oral presentation only (Refereed)
National Category
Cardiac and Cardiovascular Systems Nursing Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-156923 (URN)
Conference
Berzelius symposium 99, The Cardiac Patient from Birth to Adulthood, Stockholm, Sweden, 21-22 February 2019.
Available from: 2019-03-01 Created: 2019-03-01 Last updated: 2019-03-07Bibliographically approved
Bay, A. (2018). Being physically active as an adult with congenital heart disease. (Doctoral dissertation). Umeå: Umeå Universitet
Open this publication in new window or tab >>Being physically active as an adult with congenital heart disease
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Due to advances in medical and surgical care adults with congenital heart disease (CHD) is a growing and aging population, that now outnumbers the children with CHD. In general, adults with CHD have reduced aerobic exercise capacity and nearly half of the patients do not reach current recommendations on physical activity. It is known that a low level of physical activity is associated with an increased risk for acquired cardiovascular disease. Studies has shown that adults with CHD are at the same, or even higher risk as the general population, for developing acquired cardiovascular disease.

Aim: The overall aim was to explore physical activity in adults with CHD with respect to associated factors, exercise self-efficacy and their own experiences.

Methods: This thesis is based on four papers. Paper I included 471 adults with CHD from three tertiary care centres in Sweden. The participants completed questionnaires measuring patient reported outcomes (e.g. SF-12) including physical activity level. Paper II was based on data from 79 adults with CHD from two tertiary care centers in Sweden and 42 matched controls. All participants completed questionnaires on exercise self-efficacy and quality of life, wore an activity monitor during four consecutive days and performed muscle endurance tests. Paper I and II were of cross-sectional design and analyses were done using logistic regression. In paper III and IV data were collected through structured interviews for 14 participants. They were asked about their experiences of being physically active (paper III), what they considered as physical activities, and their experiences of enablers and barriers to physical activity (paper IV). Qualitative content analysis was used in papers III and IV.

Results: Physical activity level (paper I) and exercise self-efficacy (paper II) were strongly associated with age where those over 40 years had a lower level of physical activity and lower exercise self-efficacy. Further, in paper I, it appeared that patient reported outcomes from SF-12 were strongly associated with physical activity level. In paper II, exercise self-efficacy was associated with performance in a muscle endurance tests. Paper III revealed an overall theme – It´s like balancing on a slackline that illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four themes: (1) Being an adventurer – enjoying the challenges of physical activity; (2) Being a realist – adapting to physical ability; (3) Being a non-doer – lacking prerequisites for physical activity and (4) Being an outsider – feeling excluded depending on physical ability. In paper IV, the analysis revealed a description of what adults with CHD consider to be physical activity and considered as enablers and barriers for physical activity. Four categories appeared; physical aspects, psychological aspects, psychosocial aspects and environmental aspects. In the psychosocial aspect, social support and encouragement in childhood to be physically active and no restrictions from e.g. parents, teachers and health care increased physical activity in adulthood.

Conclusions: Age, social support and accepting physical limitations seem to have an important impact regarding physical activity level and exercise self-efficacy. In contrast, the complexity of CHD and other medical factors appear to be of less importance for adults with CHD in relation to physical activity. In order to support adults with CHD to increase their physical activity and reach their full potential, it is important to explore and consider the various aspects that may affect physical activity in this population.

Place, publisher, year, edition, pages
Umeå: Umeå Universitet, 2018. p. 62
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1984
Keywords
Adult congenital heart disease, congenital heart disease, heart defect, physical activity, exercise self-efficacy, muscle function, quality of life, nursing, interviews, content analysis, prevention
National Category
Nursing Cardiac and Cardiovascular Systems
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-152806 (URN)978-91-7601-951-1 (ISBN)
Public defence
2018-12-07, Aulan, Vårdvetarhuset, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2018-11-16 Created: 2018-11-09 Last updated: 2019-01-10Bibliographically approved
Bay, A., Sandberg, C., Thilén, U., Wadell, K. & Johansson, B. (2018). Exercise self-efficacy in adults with congenital heart disease. International Journal of Cardiology: Heart and vasculature, 18, 7-11
Open this publication in new window or tab >>Exercise self-efficacy in adults with congenital heart disease
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2018 (English)In: International Journal of Cardiology: Heart and vasculature, E-ISSN 2352-9067, Vol. 18, p. 7-11Article in journal (Refereed) Published
Abstract [en]

Background: Physical activity improves health, exercise tolerance and quality of life in adults with congenital heart disease (CHD), and exercise training is in most patients a high-benefit low risk intervention. However, factors that influence the confidence to perform exercise training, i.e. exercise self-efficacy (ESE), in CHD patients are virtually unknown. We aimed to identify factors related to low ESE in adults with CHD, and potential strategies for being physically active.

Methods: Seventy-nine adults with CHD; 38 with simple lesions (16 women) and 41 with complex lesions (17 women) with mean age 36.7 ± 14.6 years and 42 matched controls were recruited. All participants completed questionnaires on ESE and quality of life, carried an activity monitor (Actiheart) during four consecutive days and performed muscle endurance tests.

Results: ESE in patients was categorised into low, based on the lowest quartile within controls, (≤ 29 points, n = 34) and high (> 29 points, n = 45). Patients with low ESE were older (42.9 ± 15.1 vs. 32.0 ± 12.4 years, p = 0.001), had more complex lesions (65% vs. 42%, p = 0.05) more often had New York Heart Association functional class III (24% vs. 4%, p = 0.01) and performed fewer shoulder flexions (32.5 ± 15.5 vs. 47.7 ± 25.0, p = 0.001) compared with those with high ESE. In a logistic multivariate model age (OR; 1.06, 95% CI 1.02-1.10), and number of shoulder flexions (OR; 0.96, 95% CI 0.93-0.99) were associated with ESE.

Conclusion: In this study we show that many adults with CHD have low ESE. Age is an important predictor of low ESE and should, therefore, be considered in counselling patients with CHD. In addition, muscle endurance training may improve ESE, and thus enhance the potential for being physically active in this population.

Place, publisher, year, edition, pages
Elsevier, 2018
Keywords
adult congenital heart disease, exercise self-efficacy, muscle function, physical activity, quality of life
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-144626 (URN)10.1016/j.ijcha.2017.12.002 (DOI)000432566900002 ()29349286 (PubMedID)
Available from: 2018-02-08 Created: 2018-02-08 Last updated: 2019-05-21Bibliographically approved
Bay, A., Berghammer, M., Lämås, K., Sandberg, C. & Johansson, B. (2018). Facilitators and barriers for physical activity in adults with congenital heart disease. In: European Heart Journal: ESC Congress 2018 25 - 29 August Munich, Germany. Paper presented at European Society of Cardiology (ESC), Munich, Germany, 25-29 August 2018.. Oxford University Press, 39, Article ID P5433.
Open this publication in new window or tab >>Facilitators and barriers for physical activity in adults with congenital heart disease
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2018 (English)In: European Heart Journal: ESC Congress 2018 25 - 29 August Munich, Germany, Oxford University Press, 2018, Vol. 39, article id P5433Conference paper, Poster (with or without abstract) (Refereed)
Place, publisher, year, edition, pages
Oxford University Press, 2018
Series
European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645
National Category
Cardiac and Cardiovascular Systems Nursing Public Health, Global Health, Social Medicine and Epidemiology
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-156922 (URN)10.1093/eurheartj/ehy566.P5433 (DOI)
Conference
European Society of Cardiology (ESC), Munich, Germany, 25-29 August 2018.
Note

Issue supplement 1, August 2018

Available from: 2019-03-01 Created: 2019-03-01 Last updated: 2019-03-07Bibliographically approved
Bay, A., Berghammer, M., Lämås, K., Sandberg, C. & Johansson, B. (2018). Facilitators and barriers for physical activity in adults with congenital heart disease. Paper presented at European-Society-of-Cardiology Congress, AUG 25-29, 2018, Munich, GERMANY. European Heart Journal, 39, 1120-1121
Open this publication in new window or tab >>Facilitators and barriers for physical activity in adults with congenital heart disease
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2018 (English)In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, p. 1120-1121Article in journal, Meeting abstract (Other academic) Published
Abstract [en]

Background: A majority of adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and counteract acquired cardiovascular disease. This study illuminates aspects that may be relevant for performing physical activity.

Purpose: To describe facilitators and barriers for physical activity in adults with CHD.

Methods: Semi-structured interviews were performed individually with fourteen adults (age 19–68 years, women=7) with complex CHD. The interviews were analyzed using qualitative content analysis.

Results: Aspects that may enable or inhibit physical activity were found in two domains; Facilitators and Barriers, which both consisted of four categories physical, psychological, psychosocial and environmental aspects (Table 1).

This can be exemplified by the category physical aspects; where persons expressed being limited by the CHD to perform physical activity, but also that improved aerobic fitness allows for being more active, and in the category psychosocial aspects; the person's previous negative experiences and lack of support constituted barriers while encouragement from others and being active as a child facilitated an active lifestyle in adult age.

Conclusion: The present study identifies barriers and facilitators for being physically active in adults living with CHD. It is essential to identify prerequisites for supporting and promoting physical activity and thereby hopefully prevent long-term adverse outcomes. Barriers can potentially be transformed to facilitators through increased knowledge in both the adult with CHD and the healthcare provider.

Place, publisher, year, edition, pages
Oxford University Press, 2018
National Category
Cardiac and Cardiovascular Systems Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
urn:nbn:se:umu:diva-157621 (URN)10.1093/eurheartj/ehy566.P5433 (DOI)000459824003524 ()
Conference
European-Society-of-Cardiology Congress, AUG 25-29, 2018, Munich, GERMANY
Note

Supplement: 1

Meeting Abstract: P5433

Available from: 2019-03-26 Created: 2019-03-26 Last updated: 2019-03-26Bibliographically approved
Bay, A. (2018). Fysiskt aktiv som vuxen med medfött hjärtfel: ”Som att balansera på slak lina”. In: : . Paper presented at 20:e Svenska Kardiovaskulära Vårmötet 2018, 25-27 april, Stockholm.
Open this publication in new window or tab >>Fysiskt aktiv som vuxen med medfött hjärtfel: ”Som att balansera på slak lina”
2018 (Swedish)Conference paper, Oral presentation only (Other academic)
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-156920 (URN)
Conference
20:e Svenska Kardiovaskulära Vårmötet 2018, 25-27 april, Stockholm
Available from: 2019-03-01 Created: 2019-03-01 Last updated: 2019-03-20Bibliographically approved
Bay, A., Lämås, K., Berghammer, M., Sandberg, C. & Johansson, B. (2018). It ́s like balancing on a slackline: A description from adults living with congenital heart disease. Paper presented at 52nd Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC), Athens, May 9-12, 2018. Cardiology in the Young, 28(Suppl. S1), S37-S37
Open this publication in new window or tab >>It ́s like balancing on a slackline: A description from adults living with congenital heart disease
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2018 (English)In: Cardiology in the Young, ISSN 1047-9511, E-ISSN 1467-1107, Vol. 28, no Suppl. S1, p. S37-S37Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Introduction: Several studies have shown that adults with congenital heart disease have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of great importance to investigate how this population experiences physical activity. The aim of the study is to illuminate how adults with congenital heart disease describes themselves in relation to physical activity.

Methods: Semi-structured interviews with fourteen adults with complex congenital heart disease were performed. Patients were recruited from the clinic waiting list, based on their scheduled follow up and diagnosis. Interviews were analysed by qualitative content analysis.

Results: The overall theme It´s like balancing on a slackline illustrates how adults with congenital heart disease described themselves in relation to physical activity. The overall theme consists of four themes: Being an adventurer- enjoying the challenges of physical activity, Being a realist- adapting to physical ability, Beinga non-doer- lacking prerequisites for physical activity and Being an outsider- feeling excluded depending on physical ability.

Conclusions: The descriptions on themselves as a physically active were not constant or one-dimensional and the descriptions varied during the interviews, related to different time periods in life. It meant that they could described themselves as being an adventurer liking tough challenges, but at the same time describing themselves as being a non-doer with uncertainty over their physical strength. The findings point out specific factors for adults with CHD that might constitute as obstacles, but also possibilities for being physically active.

Place, publisher, year, edition, pages
Cambridge University Press, 2018
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-156921 (URN)10.1017/S1047951118000318 (DOI)
Conference
52nd Annual Meeting of the Association for European Paediatric and Congenital Cardiology (AEPC), Athens, May 9-12, 2018
Available from: 2019-03-01 Created: 2019-03-01 Last updated: 2019-03-20Bibliographically approved
Bay, A., Lämås, K., Berghammer, M., Sandberg, C. & Johansson, B. (2018). It's like balancing on a slackline: a description of how adults with congenital heart disease describe themselves in relation to physical activity. Journal of Clinical Nursing, 27(15-16), 3131-3138
Open this publication in new window or tab >>It's like balancing on a slackline: a description of how adults with congenital heart disease describe themselves in relation to physical activity
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2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 15-16, p. 3131-3138Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To illuminate how adults with CHD describe themselves in relation to physical activity.

BACKGROUND: Several studies have shown that adults with congenital heart disease (CHD) have reduced exercise capacity and do not reach the recommended daily level of physical activity. With this in view, it is of immense importance to investigate how this population experiences physical activity.

DESIGN: Qualitative study with semi-structured interviews analysed with qualitative content analysis.

METHODS: Semi-structured interviews were individually performed with fourteen adults (women=7, age 19-68 years) with complex CHD. Patients were purposively recruited from the clinic waiting list, based on a scheduled follow-up and diagnosis.

RESULTS: The overall theme, It's like balancing on a slackline, illustrates how adults with CHD described themselves in relation to physical activity. This overall theme consisted of four subthemes: (1) Being an adventurer- enjoying the challenges of physical activity; (2) Being a realist- adapting to physical ability; (3) Being a non-doer- lacking prerequisites for physical activity; and (4) Being an outsider- feeling excluded depending on physical ability.

CONCLUSIONS: Adults with CHD seem to have a diverse relationship to physical activity and it involves various aspects throughout the lifespan. The findings point out factors that might constitute as obstacles for being physically active, specific for people with chronic conditions like CHD. This highlights the importance of further exploring the hindering and facilitating factors for being physically active in order to get a deeper understanding of how to support adults with CHD to be physically active.

RELEVANCE TO CLINICAL PRACTICE: Given the diverse relationship to physical activity, nurses have to further investigate the patients' relationship to physical activity, in order to support a healthy lifestyle. Nurses and allied health professionals should offer individualized exercise prescriptions and education about suitable physical activities in relation to physical ability. This article is protected by copyright. All rights reserved.

Keywords
Congenital heart disease, content analysis, interviews, nursing, physical activity, prevention
National Category
Nursing
Identifiers
urn:nbn:se:umu:diva-148097 (URN)10.1111/jocn.14507 (DOI)000439796600022 ()29752846 (PubMedID)2-s2.0-85050400287 (Scopus ID)
Available from: 2018-05-28 Created: 2018-05-28 Last updated: 2019-05-16Bibliographically approved
Bay, A., Sandberg, C., Thilen, U., Wadell, K. & Johansson, B. (2017). Exercise self-efficacy (ESE) in adults with congential heart disease. Paper presented at European Society of Cardiology (ESC) Congress 2017, 26-30 August, Barcelona, Spain. European Heart Journal, 38(Suppl. 1), Article ID ehx501.P618.
Open this publication in new window or tab >>Exercise self-efficacy (ESE) in adults with congential heart disease
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2017 (English)In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 38, no Suppl. 1, article id ehx501.P618Article in journal, Meeting abstract (Refereed) Published
Abstract [en]

Background: Many adults with congenital heart disease (CHD) have reduced aerobic exercise capacity and impaired muscle function. However, it is largely unknown which factors have influence on the confidence to perform exercise training, i.e. Exercise Self-Efficacy (ESE).

Aims: To identify factors related to low ESE, and thus identify potential targets for rehabilitation and thereby enhance the potential for being physically active.

Methods: Seventy-nine adults with CHD; simple lesions n=38 (women n=16), complex lesions n=41 (women n=17) (mean age 36.7±14.6 years) and 42 age and sex matched controls were recruited. All participants completed questionnaires on ESE, quality of life (EQ-5D), and physical activity (international physical activity questionnaire, IPAQ), and performed muscle endurance tests.

Results: ESE was categorised into low (<26 points, n=24) and high (≥26 points, n=55). Patients with low ESE were older (45.2±15.4 vs. 32.6±12.5 years, p=0.002), more often had prescribed medication (67% vs. 44%, p=0.06), higher New York Heart Association functional class (NYHA) (≥ III) (25% vs. 7%, p=0.03) and performed fewer shoulder flexions (30.9±16.1 vs. 45.9±23.9, p=0.01) compared with those with high ESE. In the high ESE group, ESE did not differ from controls (33.8±3.9 vs. 33.4±6.1, p=0.74). In linear multivariate analysis age (B;-0.18, 95% CI -0.28- -0.08), smoking (B;-3.73, 95% CI -7.17- -0.28), EQ-5Dindex <1 (B;-3.33, 95% CI -6.08- -0.57) and number of shoulder flexions (B; 0.09, 95% CI 0.03–0.16) were independently associated with ESE.

Conclusion: Many adults with CHD have low ESE. Rehabilitation targeting quality of life, smoking cessation and muscle training may improve ESE, and thus enhance the potential for being physically active in this population.

Keywords
heart diseases, exercise, adult, self efficacy
National Category
Physiotherapy
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-156919 (URN)10.1093/eurheartj/ehx501.P618 (DOI)
Conference
European Society of Cardiology (ESC) Congress 2017, 26-30 August, Barcelona, Spain
Available from: 2019-03-01 Created: 2019-03-01 Last updated: 2019-03-20Bibliographically approved
Bay, A., Dellborg, M., Berghammer, M., Sandberg, C., Engström, G., Moons, P. & Johansson, B. (2017). Patient reported outcomes are associated with physical activity level in adults with congenital heart disease. International Journal of Cardiology, 243, 174-179
Open this publication in new window or tab >>Patient reported outcomes are associated with physical activity level in adults with congenital heart disease
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2017 (English)In: International Journal of Cardiology, ISSN 0167-5273, E-ISSN 1874-1754, Vol. 243, p. 174-179Article in journal (Refereed) Published
Abstract [en]

Background: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO). Methods: Patients with CHD (n = 471) were randomly selected from the national register on CHD and categorized according to complexity of lesions -simple (n = 172, 39.1 +/- 14.6 years), moderate (n = 212, 39 +/- 14.1 years), and severe (n = 87, 31.7 +/- 10.7 years). Participants completed a standardized questionnaire measuring PRO-domains including PAL. Variables associated with PAL were tested in multivariate logistic regression. Results: PAL was categorized into high (>= 3 METs = 2.5 h/week, n = 192) and low (>= 3 METs <2.5 h/week, n = 279). Patients with low PAL were older (42.6 vs. 35.8 years, p = 0.001), had more prescribed medications (51% vs. 39%, p = 0.009), more symptoms (25% vs. 16%, p = 0.02) and comorbidity (45% vs. 34% p= 0.02). Patients with low PAL rated a lower quality of life (76.6 vs. 83.4, p < 0.001), satisfaction with life (25.6 vs. 27.3, p = 0.003), a lower Physical Component Summary score (PCS) (78.1 vs. 90.5, p < 0.001) andMental Component Summary score (MCS) (73.5 vs. 79.5, p < 0.001). Complexity of heart lesion was not associated with PAL. The included PROs-separately tested in the model, together with age were associated with PAL. Conclusions: PCS and MCS are stronger associated with PAL than age and medical factors. The use of these PROs could therefore provide valuable information of benefit for individualized advice regarding physical activity to patients with CHD.

Place, publisher, year, edition, pages
Elsevier, 2017
Keywords
Adult congenital heart disease, Physical activity, Multicentre study, Adults, Heart defect, Congenital
National Category
Cardiac and Cardiovascular Systems Nursing
Identifiers
urn:nbn:se:umu:diva-138201 (URN)10.1016/j.ijcard.2017.03.137 (DOI)000406038100034 ()
Available from: 2017-08-21 Created: 2017-08-21 Last updated: 2019-05-21Bibliographically approved
Organisations
Identifiers
ORCID iD: ORCID iD iconorcid.org/0000-0001-6321-8240

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