| 1. |
- Bay, Annika, 1970-, et al.
(författare)
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Facilitators and barriers for physical activity in adults with congenital heart disease
- 2018
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Ingår i: European Heart Journal. - : Oxford University Press. - 0195-668X .- 1522-9645. ; 39:suppl_1, s. 1120-1121
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Tidskriftsartikel (refereegranskat)abstract
- 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).
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| 2. |
- Bay, Annika, 1970-, et al.
(författare)
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Symptoms during pregnancy in primiparous women with congenital heart disease.
- 2024
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Ingår i: Scandinavian Cardiovascular Journal. - : Taylor & Francis. - 1401-7431 .- 1651-2006. ; 58:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: As more women with congenital heart disease (CHD) are reaching childbearing age, it becomes more common for their symptoms to be evaluated during pregnancy. However, pregnancy-related symptoms are similar to those caused by heart disease. This study investigated the prevalence of factors associated with symptoms during pregnancy in women with CHD.Methods: The national birth register was searched for primiparous women with CHD who were registered in the national quality register for patients with CHD.Results: Symptoms during the third trimester were reported in 104 of 465 evaluated women. The most common symptom was palpitations followed by dyspnea. Factors associated with symptoms were tested in a univariable model; higher NYHA classification (>1) (OR 11.3, 95%CI 5.5-23.2), low physical activity (≤3 h/week) (OR 2.1 95%CI 1.3-3.6) and educational level ≤ 12 years (OR 1.9 95%CI 1.2-3.0) were associated with having symptoms. In multivariable analysis, low physical activity level (OR 2.4 95%CI 1.2-5.0) and higher NYHA class (OR 11.3 95%CI 5.0-25.6) remained associated with symptoms during pregnancy. There were no cases with new onset of impaired systemic ventricular function during pregnancy.Conclusion: Symptoms during pregnancy are common in women with CHD but are often already present before pregnancy. Because ordinary symptoms during pregnancy often overlap with symptoms of heart disease, it is important to know if symptoms were present before pregnancy and if they became worse during pregnancy. These results should be included in pre-pregnancy counselling and considered in the monitoring during pregnancy.
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| 3. |
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| 4. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Adolescents with congenital heart disease - Parent’s perceptions and expectations about transition and transfer to adult care
- 2016
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Ingår i: 46th Nordic Meeting in Paediatric Cardiology. 21-23 September 2016. Båstad, Sweden.
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: People with congenital heart disease (CHD) might need life-long medical follow-up and transfer to adult care (ACHD). An optimal transition process involves collaboration where parents and other family members are integrated, along with the patient and healthcare providers. The active role might be difficult for parents. Aim: Explore parent’s perceptions and expectations about transition and transfer to adult care. Method: Semi-structured interviews with 18 parents to adolescents with CHD, 14-18 years of age, were conducted in four pediatric cardiology settings in Sweden. Results: Three different categories were formulated: Need of knowledge; information addressed to the adolescent regarding the CHD, coming treatment and late-effects, but also general information about the ACHD-organization and future follow-up was emphasized. Other important aspects were smoking, alcohol, contraceptives, sex and pregnancy. Information given in a group and face-to face information was preferred included a visit to ACHD-outpatient clinic before transfer. Mixed feelings; the parents knew that transfer was a natural step, but were concerned and worried due to lack of knowledge about the process and new caregivers. Being involved made them feel secure. Timing; the parents expressed concerns over when and how the process should start. The majority considered the age of 11-12 year too early, while 15-16 years were considered more appropriate to start the transition process, depending of the adolescent’s maturity. Most parents had started handing over the responsibility for the medical treatment, but none the contact with the health care providers. Conclusion: The parents’ plea for involvement in the transition planning, being aware of the shift in roles and gradually giving the responsibility to the adolescent. One important aspect was to inform about the new caregiver and future follow-up. Parents considered disease specific information given by the nurse or physician as optimal using different learning methods.
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| 5. |
- Bratt, Ewa-Lena, 1970, et al.
(författare)
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Do not forget the parents : Parents' concerns during transition to adult care for adolescents with congenital heart disease
- 2018
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Ingår i: Child Care Health and Development. - : Wiley. - 0305-1862 .- 1365-2214. ; 44:2, s. 278-284
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Growing up with congenital heart disease (CHD) often means transfer to adult care and lifelong medical follow-up. An optimal transition process usually involves a multipart collaboration between the patient, their parents and other family members, and the healthcare providers. Taking an active role while knowing when it is time to step aside can be difficult for all the concerned parties, even the healthcare professionals. The aim of the present study therefore, was to explore parents' expectations and needs during their adolescent's transition to adult care.METHOD: Semi-structured interviews were conducted with 18 parents of 16 adolescents (aged 13-18 years) with CHD in 4 pediatric cardiology settings in Sweden. The interviews were analysed with qualitative content analysis.RESULTS: The analysis resulted in 2 main themes: (a) Feeling secure-the importance of being prepared and informed. This theme focused on the need to be prepared and informed about transition and future transfer to adult care. (b) Recognizing when to hand over at the right time. This theme addressed the process of handing over the responsibility from the parent to the adolescents and contained handing over from pediatric care to adult care.CONCLUSION: Being prepared and informed about the upcoming transition process was essential. The parents underlined the importance of being involved in the transition planning for gradually handing over responsibility to the adolescent. They also considered establishing contact with the adult healthcare team before transfer as important and needed to be assured that CHD-related information of importance for the young person's daily life would be given.
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| 6. |
- Sparud Lundin, Carina, 1964, et al.
(författare)
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Health care providers' attitudes towards transfer and transition in young persons with long term illness : a web-based survey
- 2017
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Ingår i: BMC Health Services Research. - : Springer Science and Business Media LLC. - 1472-6963. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Transition programs in health care for young persons with special health care needs aim to maximize lifelong functioning. Exploring health care professionals' perspective may increase the possibility of successful implementation of transition programs. The aim was to survey health care professionals' attitudes towards components and barriers on transition and transfer in young people with long-term medical conditions with special health care needs.METHODS: A cross-sectional web-based survey was sent by e-mail to 529 physicians and nurses in Swedish pediatric and adult outpatient clinics. Response rate was 38% (n = 201). The survey consisted of 59 questions regarding different aspects of components and barriers on transition and transfer. Descriptive statistics were computed to summarize demographic data and categorized responses. The Chi square test was used for comparison between proportions of categories.RESULTS: Most respondents agreed on the destinations of care for adolescents within their specialty. Age and psychosocial aspects such as maturity and family situations were considered the most important initiators for transfer. Joint meeting with the patient (82%); presence of a transition coordinator (76%) and a written individualized transfer plan (55%) were reported as important transition components. Pediatric care professionals found the absence of a transition coordinator to be more of a transition barrier than adult care professionals (p = 0.018) and also a more important transfer component (p = 0.017). Other barriers were lack of funding (45%) and limited clinical space (19%). Transition programs were more common in university hospitals than in regional hospitals (12% vs 2%, p = <0.001) as well as having a transition coordinator (12% vs 3%, p = 0.004).CONCLUSION: The findings highlight a willingness to work on new transition strategies and provide direction for improvement, taking local transition components as well as potential barriers into consideration when implementing future transition programs. Some differences in attitudes towards transitional care remain among pediatric and adult care professionals.
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| 7. |
- Apers, Silke, et al.
(författare)
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Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) : Rationale, design, and methods
- 2015
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Ingår i: International Journal of Cardiology. - : Elsevier BV. - 0167-5273 .- 1874-1754. ; 179, s. 334-342
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Tidskriftsartikel (refereegranskat)abstract
- Background: Data on patient-reported outcomes (PROs) in adults with congenital heart disease (CHD) are inconsistent and vary across the world. Better understanding of PROs and their differences across cultural and geographic barriers can best be accomplished via international studies using uniform research methods. The APPROACH-IS consortium (Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study) was created for this purpose and investigates PROs in adults with CHD worldwide. This paper outlines the project rationale, design, and methods. Methods/design: APPROACH-IS is a cross-sectional study. The goal is to recruit 3500-4000 adults with CHD from 15 countries in five major regions of the world (Asia, Australia, Europe, North and South America). Self-report questionnaires are administered to capture information on PRO domains: (i) perceived health status (12-item Short-form Health Survey & EuroQOL-5D); (ii) psychological functioning (Hospital Anxiety and Depression Scale); (iii) health behaviors (Health-Behavior Scale-Congenital Heart Disease); and (iv) quality of life (Linear Analog Scale & Satisfaction With Life Scale). Additionally, potential explanatory variables are assessed: (i) socio-demographic variables; (ii) medical history (chart review); (iii) sense of coherence (Orientation to Life Questionnaire); and (iv) illness perceptions (Brief Illness Perception Questionnaire). Descriptive analyses and multilevel models will examine differences in PROs and investigate potential explanatory variables. Discussion: APPROACH-IS represents a global effort to increase research understanding and capacity in the field of CHD, and will have major implications for patient care. Results will generate valuable information for developing interventions to optimize patients' health and well-being.
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| 8. |
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| 9. |
- Bay, Annika, 1970-
(författare)
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Being physically active as an adult with congenital heart disease
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 10. |
- Bay, Annika, et al.
(författare)
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Enablers and barriers for being physically active : experiences from adults with congenital heart disease
- 2021
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 20:3, s. 276-284
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Tidskriftsartikel (refereegranskat)abstract
- Background: In general, adults with congenital heart disease have reduced exercise capacity and many do not reach the recommended level of physical activity. A physically active lifestyle is essential to maintain health and to counteract acquired cardiovascular disease, therefore enablers and barriers for being physically active are important to identify.Aim: To describe what adults with complex congenital heart diseases consider as physical activity, and what they experience as enablers and barriers for being physically active. Methods: A qualitative study using semi-structured interviews in which 14 adults with complex congenital heart disease (seven women) participated. The interviews were analysed using qualitative content analysis.Results: The analysis revealed four categories considered enablers and barriers - encouragement, energy level, approach and environment. The following is exemplified by the category encouragement as an enabler: if one had experienced support and encouragement to be physically active as a child, they were more positive to be physically active as an adult. In contrast, as a barrier, if the child lacked support and encouragement from others, they had never had the opportunity to learn to be physically active.Conclusion: It is important for adults with congenital heart disease to have the opportunity to identify barriers and enablers for being physically active. They need knowledge about their own exercise capacity and need to feel safe that physical activity is not harmful. This knowledge can be used by healthcare professionals to promote, support and eliminate misconceptions about physical activity. Barriers can potentially be transformed into enablers through increased knowledge about attitudes and prerequisites. © The European Society of Cardiology 2020.
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