| 1. |
- Flemme, Inger, 1947-, et al.
(författare)
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Living with life-saving technology : long-term follow-up of recipients with implantable cardioverter defibrillator
- 2010
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Konferensbidrag (refereegranskat)abstract
- The evidence that treatment of life-threatening arrhythmia (LTA) with an Implantable Cardioverter Defibrillator (ICD) can prolong life is convincing. Living with a lifelong heart disease will gradually influence the everyday life and encompasses some or all aspects of life. In order to influence health outcomes, the impact of the ICD must be considered in a broader context including not only the physical, but also the psychological and social functioning of the individual.The general aim of this thesis was to describe everyday life in recipients living with an ICD in a longterm perspective. The aim in Paper I was to describe changes in the life situation of recipients’ with an ICD over a period of 1 year. The aim in Paper II was to describe quality of life (QOL) and uncertainty in recipients who have an ICD and to predict QOL at long-term follow-up. Fifty-six recipients participated (I) and 35 of these recipients, who had survived at least five years, were further included (II). The Quality of Life Index-Cardiac version (I, II), Mishel Uncertainty in Illness Scale-Community version (I, II), Patient ICD Questionnaire (I) and multiple regression analysis (II) were used. Higher scores indicate higher QOL and uncertainty. The questionnaires were completed before implantation, three and twelve months after implantation (I) and also five years after implantation i.e. long-term follow up (II). At the long-term follow up, the average ICD recipient had lived with an ICD for six years and nine months (6.9 years). The results showed the overall QOL and QOL in the health/functioning domain were unchanged over time. QOL in the socio-economic (p= .002) and psychological/spiritual domains (p= .012) decreased in the first year. From baseline to long-term follow up, the QOL in the family domain (p= .011) and overall uncertainty (p= .002) decreased. Uncertainty related to the information decreased at year 1 in relation to baseline (p= .001).The aim in Paper III was to illuminate the main concern of recipients living with an ICD and how they handle this in their daily life. Sixteen recipients who had lived with an ICD between six to twenty-four months were interviewed. Data was collected and analysed in a simultaneous process according to guidelines for classical grounded theory. In the analysis, a substantive theory was generated explaining the main concern of ICD recipients and how they handle this in their daily life. The core category, labelled “Striving to resume command”, illuminates the main concern of ICD recipients. To manage this main concern, the recipients used the following strategies: Economizing resources, Distracting oneself, Submitting to one’s fate and Re-evaluating life.The aim in Paper IV was to explore relationships between OQL, coping strategies, anxiety, depression and perceived control in recipients living with an ICD and to compare those having received an ICD less or more than one year ago and those with a primary or secondary preventive indication. A cross-sectional, correlational, multicenter design was used, and 147 recipients who had lived with an ICD between six to twenty-four months completed Quality of Life Index-Cardiac version, Jalowiec Coping Scale, Hospital Anxiety and Depression Scale and Control Attitude Scale. The results showed that anxiety, depression and perceived control were predictors of QOL. Anxiety was also a predictor of coping with optimistic coping being the most used coping strategy. There was no relationship between QOL and coping. No differences were found in QOL, coping, anxiety, depression and perceived control between recipients implanted either on a primary or secondary preventive indication or having the device less or more than one year.In this thesis, it was concluded that the ICD recipients strived to resume command over their life (III) and the more control the recipients perceived the more satisfied they were with their QOL (IV) and the more symptoms of anxiety, depression and uncertainty they experienced the less satisfied they were with their QOL (II, IV). Coping strategies were used more frequently by ICD recipient perceiving more anxiety (IV). QOL was fairly good 6,9 years after implantation and ICD recipients felt less uncertain once they had passed the first year of their illness.
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| 2. |
- Axelsson, Åsa B., 1955, et al.
(författare)
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European cardiovascular nurses and allied professions’ practical skills in cardiopulmonary resuscitation
- 2009
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Ingår i: Cardiology. - 0008-6312. - 9783805591430 ; 113:S1
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The purpose of this study was to test practical skills of cardiopulmonary resuscitation (CPR) in European cardiovascular nurses and allied professions. Methods: Eighty-six delegates at the Spring Meeting on Cardiovascular Nursing in Malmö, Sweden, in 2008, were recruited for this study. Laerdal Resusci Anne SkillReporter manikins connected to a computer with the Laerdal PC SkillReporting System were used. The participants were told to perform CPR according to the “new”guidelines from 2005; 30:2 for three minutes. Results: 88% of the tested participants were nurses and 79% were female. Mean age were 42 years (range 19–63 years). They came from 14 different European countries, though one third was from Sweden. About two thirds had trained CPR within the last year. Seven per cent had no previous CPR training. According to practical skills the average inflations per minute were five (SD+1.5), average inflation volume 992 ml (SD+423) and average flow rate 857 ml/second (SD+401). According assessment of chest compressions the average compression rate was 121 (SD+22.5), average compression per minute 79.5 (SD+14.4), average compression depth 43.8 mm (SD+9.4) and average compression duty cycle 43.8% (SD+5.7). Hand position “too low”was the most common committed error. Conclusion: The practical skill in CPR among the tested delegates was rather satisfying regarding chest compressions. However, there were wide ranges as shown by large standard deviations. Regarding ventilations, too large volumes together with flow rates as high as those performed by many of these delegates may easily lead to gastric inflation during clinical CPR.
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| 3. |
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| 4. |
- Berben, L, et al.
(författare)
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Which interventions are used by healthcare professionals to enhance medication adherence in cardiovascular patients? : A survey of current clinical practice
- 2011
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 10:1, s. 14-21
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Tidskriftsartikel (refereegranskat)abstract
- Background Complex medication regimens are often required to manage cardiovascular diseases. As non-adherence, which can have severe negative outcomes, is common among cardiovascular patients, various interventions to improve adherence should be implemented in daily practice.Aim To assess which strategies cardiovascular nurses and allied health professionals utilize to (1) assess patients' adherence to medication regimen, and (2) enhance medication adherence via educational/cognitive, counseling/behavioral, and psychological/affective interventions.Method A 45-item questionnaire to assess adherence assessment and interventional strategies utilized by health care professionals in daily clinical practice was distributed to a convenience sample of attendants of the 10th Annual Spring Meeting of the European Society of Cardiology Council on Cardiovascular Nursing and Allied Professions conference in Geneva (Switzerland) in March 2010. Respondents not in direct clinical practice were excluded. Descriptive statistics were used to describe practice patterns regarding adherence management.Results Of 276 distributed questionnaires, 171 (62%) were returned, of which 34 (20%) were excluded as respondents performed no direct patient care. Questioning patients about non-adherence during follow-up was the most frequently reported assessment strategy (56%). Educational/cognitive adherence enhancing interventions were used most frequently, followed by counseling/behavioral interventions. Psychological/affective interventions were less frequently used. The most frequent intervention used was providing reading materials (66%) followed by training patients regarding medication taking during inpatient recovery (48%). Slightly over two-thirds (69%) reported using a combination of interventions to improve patient's adherence.Conclusion Educational interventions are used most in clinical practice, although evidence shows they are less effective than behavioral interventions at enhancing medication adherence.
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| 5. |
- Bolse, Kärstin
(författare)
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Caring for Patients with an Implantable Cardioverter Defibrillator Experiences of Patients and Healthcare Professionals
- 2009
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: An Implantable Cardioverter Defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After the implantation of an ICD the entire life situation can be affected with psychological and social consequences for the patient and his/her next of kin. The healthcare professionals play a vital role in providing educational information, support, and technical follow-up of the device. During recent years more and more hospitals have introduced a more team based organisation where the physicians collaborate with specialised ICD nurses. Aim: The overall aim of the thesis was to explore how patients with an ICD experienced their life situation and howhealthcare professionals described their experiences of delivering care to ICD patients. Methods: The design was descriptive, combining both quantitative and qualitative approaches, and the data was collected from Sweden and the USA. The Uncertainty of Illness Scale (MUIS-C) and Quality of life Index (QLI) instruments were used to determine the level of uncertainty and satisfaction with life (I), in-depth interviews with a phenomenographic approach was used to describe how Swedish and US patients living with an ICD conceived their life situation (II, III) and how healthcare professionals’ experienced delivering care to patients with an ICD, (IV). Finally, to explore clinical aspects of ICD care in Sweden, the Delivery of ICD Questionnaire (DOIQ) was used to describe the healthcare professionals’ experiences and a content analysis was used to describe the written educational information material provided to patients (V). Results: There were no differences in uncertainty between pre and post ICD implantation either in Swedish or the US patients. Satisfaction with life was significantly higher among US patients compared to Swedish patients both before and after ICD implantation within the health-functioning, socio-economic and psychological-spiritual domains. The Swedish ICD patients experienced a significantly higher satisfaction with life within the socioeconomic domain after 3 months. (I). The patients felt safe in having an ICD implanted, but the conceptions varied from seeing the device as a life saver to being worried about what could happen. Gratitude at having an ICD varied from happiness at being alive to something that was alien and disturbed the patient. Being more or less dependent included how patient experienced feelings from well-being to grief. Having a network varied from having sufficient support to loneliness. Having a belief in the future ranged from having confidence to look forward to resignation. Gaining awareness described patients’ adaptation to living with an ICD and limitations due to the ICD (II). The patients also underwent a transition from becoming aware of the restriction in the life situation through a process of adaption and having trust in the ICD. This phase was followed by a reorientation phase where they adapted to their life situation and the patient and his/her family regained of their lives (III). The healthcare professionals strove to provide competent and individualised care and infuse confirmation to the patients in form of information, education and support. They gave the patients tools to handle their life situation, through existential support and mediating security (IV). Half of the hospitals had nurse-based clinic and others planned to introduce them. Three hospitals performed follow-up in the form of remote home monitoring. The nurse had specific ICD education from ICD companies and/or various university courses. In the educational information material the biophysical dimensions dominated while the emotional dimension was scarcely described, and the spiritual-existential was not referred to at all (V). Conclusions: This thesis offers a further contribution to the scholarly discussion about the relationship between technology and human existence and how to cope with this transition. Our studies revealed that the embodiment of the ICD reflects a merger of experiences about its presence and potential from both patients’ and healthcare professionals’ perspective. This research hopefully encourages healthcare professionals to carefully reflect on what it is like to live with an ICD and to consider practice improvement for the patients’ and the next of kin.
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| 6. |
- Hjelmfors, Lisa, 1984-
(författare)
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Communication about the Heart Failure Trajectory in Patients, their Families and Health Care Professionals
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: There is an increasing awareness in the field of cardiology regarding the need for improved delivery of palliative care in patients with heart failure (HF). Professional guidelines have drawn attention to the importance of discussing the heart failure trajectory with patients and their families. These discussions can include, for example, talking about the prognosis, expectations for the future, and care at the end-of-life. It seems difficult for health care professionals to choose the right time for initiating these discussions. They often avoid these conversations because they are afraid of taking away hope and make the patients and their families anxious.Aim: The overall aim of this thesis was to improve communication about the heart failure trajectory in patients, their families, and health care professionals.Design and methods: This thesis includes five studies using different designs and data collection methods. Study I has a cross-sectional design using a questionnaire to collect data to describe heart failure nurses’ perceptions of and practice in discussing prognosis and end-of-life care with heart failure patients. Study II has a descriptive and comparative design, where a survey was performed to describe Swedish and Dutch heart failure nurses’ reasons for discussing or not discussing prognosis and end-of-life care with patients. Study III has an inductive and exploratory design, where HF patients participated in focus groups or individual interviews. Data was collected based on their perceptions of communication about the heart failure prognosis. Study IV was a small-scale ethnographic study describing and evaluating the delivery of a simulation when teaching third-year nursing students about end-of-life care at a Swedish university. Study V used co-design in which patients with HF from primary care, their family members and health care professionals (physicians and nurses) from palliative and HF care were invited to be constructive participants in the design process of a communication intervention. Health care professionals participated in a first feasibility testing of the intervention.Results: Most Swedish HF nurses had discussed prognosis (96%) and end-of-life care (84%) with a HF patient at some point in clinical practice. The nurses often reported that a physician was to have the main responsibility for such discussions (69%), but that the nurse was also believed to have a role to play (I). Prognosis and end-of-life care were, together with sexual activity, () the three least frequently discussed topics in HF clinics in both Sweden and the Netherlands (II). In conversations with 1,809 Swedish and Dutch HF patients, prognosis was discussed with 38% of the patients and end-of-life care was discussed with 10%. In study III, patients expressed different experiences of and preferences for communication about their HF prognosis. Many patients described that the health care professionals had not provided them with any prognosis information at all. The patients had different understandings of HF as a chronic illness, which had an impact on their preferences for communication about their prognosis (III). The simulation training described in the ethnographic study (IV) was part of an end-of-life care simulation during the last term of the 3- year bachelor degree level nursing education program, where students learn and practice basic palliative care. The students felt that the simulation training was a good opportunity to practice handling end-of- life situations as it gave them a chance to experience this situation and their own feelings and thoughts on death and dying. In study V, an intervention to improve communication about prognosis and end-of-life care in HF care was developed and some areas were feasibility tested. Heart failure patients, their families and health care professionals working in HF care or palliative care participated in the development process. Health care professionals (nurses and physicians) participated in the following feasibility testing of the intervention.Conclusions: This thesis shows that prognosis and end-of-life care are seldom discussed with HF patients in Swedish and Dutch heart failure care. and that many heart failure nurses have ambiguous attitudes towards discussing these topics with patients and their families (I+II). The patients described that they receive different messages concerning their heart failure, and that they also have different preferences for discussing the heart failure trajectory with health care professionals. The professionals need to understand the impact of heart failure on each patient and adapt the communication to each individual (III). End-of-life care simulation with skilled supervisors shows great promise for health care professionals to learn good communication skills in end-of-life care conversations (IV). A Question Prompt List and a communication course might be useful for improving communication about the heart failure trajectory in patients, their families, and health care professionals
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| 7. |
- Jaarsma, T, et al.
(författare)
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Heart failure management programmes in Europé
- 2006
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Ingår i: European Journal of Cardiovascular Nursing. - : Oxford University Press (OUP). - 1474-5151 .- 1873-1953. ; 5:3, s. 197-205
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Tidskriftsartikel (refereegranskat)abstract
- Background: The ESC guidelines recommend that an organised system of specialist heart failure (HF) care should be established to improve outcomes of HF patients. The aim of this study was therefore to identify the number and the content of HF management programmes in Europe. Method: A two-phase descriptive study was conducted: an initial screening to identify the existence of HF management programmes, and a survey to describe the content in countries where at least 30% of the hospitals had a programme. Results: Of the 43 European countries approached, 26 (60%) estimated the percentage of HF management programmes. Seven countries reported that they had such programmes in more than 30% of their hospitals. Of the 673 hospitals responding to the questionnaire, 426 (63%) had a HF management programme. Half of the programmes (n = 205) were located in an outpatient clinic. In the UK a combination of hospital and home-based programmes was common (75%). The most programmes included physical examination, telephone consultation, patient education, drug titration and diagnostic testing. Most (89%) programmes involved nurses and physicians. Multi-disciplinary teams were active in 56% of the HF programmes. The most prominent differences between the 7 countries were the degree of collaboration with home care and GP's, the role in palliative care and the funding. Conclusion: Only a few European countries have a large number of organised programmes for HF care and follow up. To improve outcomes of HF patients throughout Europe more effort should be taken to increase the number of these programmes in all countries. © 2006 European Society of Cardiology.
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| 8. |
- Jaarsma, Tiny, et al.
(författare)
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Sexual counselling of cardiac patients : nurses´ perception of practice, responsibility and confidence
- 2010
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Ingår i: European Journal of Cardiovascular Nursing. - : Sage Publications. - 1474-5151 .- 1873-1953. ; 9:1, s. 24-29
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Tidskriftsartikel (refereegranskat)abstract
- Background: Cardiac patients may experience problems with sexual activity as a result of their disease, medications or anxiety and nurses play an important role in sexual counselling. We studied the practice, responsibility and confidence of cardiac nurses in the sexual counselling of these patients.Method: An adapted version of the nurses' survey of sexual counselling of MI patients was administered during a scientific meeting of the Council on Cardiovascular Nursing and Allied Professionals within the European Society of Cardiology.Results: Most of the 157 cardiovascular nurses (87%) who completed the survey felt responsible to discuss sexual concerns with their clients, especially when patients initiated a discussion. However in practice, most respondents rarely addressed sexual issues. The items that nurses reported to counsel patients were closely related to the cardiac disease, symptoms and medications and seldom more sensitive subjects (e.g. foreplay, positions). Nurses estimated that their patients could be upset (67%), embarrassed (72%) or anxious (68%) if they were asked about sexual concerns. One-fifth of the nurses felt they had insufficient knowledge and 40% sometimes hesitated to discuss sexual concerns with clients because they might not know how to answer questions. Additional education on sexuality was significantly related to being more comfortable and active in sexual counselling.Conclusion: Although cardiac nurses feel responsible and not anxious discussing patients' sexual concerns, these issues are not often discussed in daily practice. Nurses might need more knowledge and specific practical training in providing information on sexual concerns and sexual counselling to cardiac patients.
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| 9. |
- Liljeroos, Maria
(författare)
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Caring needs in patient-partner dyads affected by heart failure : An evaluation of the long-term effects of a dyadic psycho-educational intervention
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: As medical treatment has improved, patients with heart failure (HF) now live longer and care mostly takes place at home with partners providing the main assistance. Taking care of an ill or disabled individual imposes a well-documented burden on the partner’s healthrelated quality of life. The awareness of partners’ burdensome situation is increasing, but few interventions have targeted the needs of patientpartner dyads with HF. The results have been inconclusive and give no clear guidance on how interventional programmes should be designed to improve both patient and partner outcomes.Aim: The overall aim of this thesis was to evaluate the effects of a psychoeducational intervention delivered to patient-partner dyads with HF during long-term follow-up, and to explore the dyads’ perceived caring needs.Methods: The thesis is based on four papers that used both quantitative and qualitative data. Study I and II used a randomized controlled design with a follow-up assessment after 24 months including 155 patientpartner dyads. The control group received care as usual. The intervention group received care as usual, and in addition they participated in the nurse-led psycho-educational intervention. Data was collected using questionnaires before and 24 months after the intervention, in order to determine the long-term effects on patients and partners regarding health related quality of life, perceived control, symptoms of depression and partners’ caregiver burden (I, II). A conceptual health promotion model inspired the intervention. To describe how the model was applied, a qualitative approach analysing nurses’ documentation of the sessions with 71 dyads in the intervention group (III) was used. Study IV has an explorative design. To further explore the dyads’ perceived caring needs, focus groups interviews with 19 patient-partner dyads with heart failure (IV) were performed.Results: The intervention did not have any significant effect on physical or mental health- related quality of life, depressive symptoms, or perceived control over the heart failure among the dyads (I) or caregiver burden in the partners (II) after 24 months. Furthermore, time to first event did not differ significantly between the dyads in the intervention group and the control group (I, II). As for the partners, both the intervention and control group reported decreased physical health between the baseline assessment and the 24-month follow-up (I). The intervention was composed of three components; 1) cognitive 2) supportive, and 3) behavioural component. The analysis of the nurses’ documentation confirmed the coverage of all the components and the analysis revealed a vide range of caring needs among the dyads (III). The dyads described a need to learn about HF to be able to manage everyday life. Regular outpatient clinic visits and access to telephone support were vital and both the patient and the partner need to be present at the clinic visits. Meeting others who are in the same situation and sharing the burden in nurse-led group sessions was proposed as an opportunity to support each other and others (IV).Conclusions: Over the 24-month follow-up period, the intervention had a neutral effect on health- related quality of life, depressive symptoms and perceived control over the HF among the dyads, and on partners’ caregiver burden. Considering the fact that partners serve as a critical extension of the formal healthcare system, and that both patients and partners ask for more support, it will become crucial to find new ways to support dyads affected by heart failure. This thesis may be viewed as a first step in trying to understand dyads’ perceived caring needs, and it can serve as a guide in clinical work and when designing new dyadic interventions.
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| 10. |
- Rönning, Helén
(författare)
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Follow-up of adults with congenitally malformed hearts with focus on individualised and computer-based education and psychosocial support : A descriptive and interventional study
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background and aims: Many adults with congenitally malformed hearts are at risk for complications such as decreased function and capacity of the heart due to the heart defect and previously surgery. This advocates self-management behaviours related to medical treatments, physical activity, preventions of endocarditis, some restrictions regarding suitable employment and spare time activities, birth control and pregnancy, but also lifestyle concerns such as refraining from smoking and healthy eating. Sufficient knowledge and support are requirements for successful self-management. The overall aim of this thesis was to describe educational needs, develop a tool for assessing knowledge and to evaluate the effects of a follow-up model providing education and psychosocial support to adults with congenitally malformed hearts.Subjects and methods: Adults (≥18 years of age) with the ten most common heart defects namely ventricular septal defect, atrial septal defect, coarctation of the aortae, aortic valve stenosis (defined as uncomplicated heart defects) and tetralogy of Fallot, complete transposition of the great arteries, congenitally corrected transposition of the great arteries, Ebstein anomaly and Eisenmenger syndrome (defined as complicated heart defects) were included in the studies. To apprehend the educational needs (I), sixteen adults with heart malformations, ranging from 19-55 years of age, were interviewed and data were analysed qualitatively using phenomenographic method. As a tool to evaluate knowledge, an instrument named Knowledge scale for adults with Congenital Malformed Hearts (KnoCoMH) was developed and psychometrically evaluated (II) in 19 + 114 adults with the ten most common heart defects average age 34 ± 13.5. A model for follow-up was described and initially evaluated (III) by 55 adults with the most common heart defects and finally tested in a randomised controlled trial (IV) with a total of 114 adults with congenitally malformed hearts (56 participants in intervention group and 58 in control group with average age 34 ± 13.5). The intervention group recived a model for follow-up with individualise and computer-based eduction and psychosocial support by a multidisciplinary team.Results: Two-way communication when given information was found to be crucial in order to enhance knowledge (I). Knowledge was seen as a tool for managing important areas in life. The KnoCoMH (II) was found to be a valid and reliable scale and can now be used to estimate knowledge in adults with congenitally malformed hearts. The model for follow-up (III) was effective in improving and maintaining knowledge (IV) about self-management in adults with heart malformation.
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| 11. |
- Walfridsson, Ulla, 1957-
(författare)
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Assessing Symptom Burden and Health-Related Quality of Life in patients living with arrhythmia and ASTA : Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia
- 2011
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Health-Related Quality of Life (HRQOL) can be negatively affected in patients living with arrhythmias and many patients experience a pronounced symptom burden. The arrhythmia can cause both uncertainty and limitations, including interference with work, reluctance to perform and plan for leisure activities and leading to self-imposed restrictions in daily life situations. There are patients striving to find strategies to manage the arrhythmia and for some this can become the focus in their lives. Treatment options are often a choice between pharmaceuticals and radiofrequency ablation (RFA) where RFA is an option for many arrhythmia-patients to be cured. In the care of arrhythmia-patients it is of great importance to combine objective examinations with patient-reported outcomes (PROs) to achieve patient’s own experiences of treatment efficacy and arrhythmias interference in daily life situations.Aims: The overall aims of this thesis were to assess symptom burden and HRQOL in patients with arrhythmias and to develop and validate an arrhythmia-specific questionnaire, suitable for most arrhythmia-patients.Design and Methods: Studies I and II were single-centre studies including patients referred for RFA, with two different arrhythmia diagnoses. Assessments of patient-reported outcomes (PROs) concerning HRQOL were performed using two questionnaires, SF-36 and EQ-5D (I-II). Further, patients were asked some disease-specific questions (I). Study I describes assessments before the RFA treatment and Study II the follow-up assessments at three and twelve months after RFA. Patients’ scoring of HRQOL was compared to age and gender matched reference groups before and after RFA (I-II). Studies III and IV describe the development and validation of a disease-specific questionnaire ASTA (Arrhythmia-Specific questionnaire in Tachycardia and Arrhythmia) assessing symptom burden and HRQOL. Studies III and IV were multicentre studies. Patients planned for DC-conversion, AF patients seeking emergency care and those with different forms of arrhythmias referred for RFA were included.Results: Patients scored significantly lower HRQOL in seven of SF-36’s eight scales compared to the age and gender matched reference groups before RFA treatment. Frequent arrhythmia attacks had a great negative impact on HRQOL, and female gender and older age were factors contributing to worse HRQOL (I). Treatment with RFA restored the patients’ HRQOL. Most positive effects were seen at three months follow-up. One year after treatment patients and the matched reference group scored their HRQOL to a similar level, assessed with SF-36 and EQ-5D index (II). The validated ASTA questionnaire was found to have good psychometric properties. Construct validity was confirmed with sufficient levels of item-total correlations in the ASTA symptom burden scale and HRQOL scales. The dimensionality of the ASTA HRQOL scale was established with confirmatory factor analysis, supporting a physical and a mental subscale. The internal consistency, demonstrated with Cronbach’s alpha (α), was satisfactory for the ASTA symptom burden scale and the ASTA HRQOL scales, varying from α 0.79 to α 0.91 (III-IV).Conclusions and clinical implications: The studies in this thesis confirmed how negatively affected the arrhythmia-patients can be with a pronounced symptom burden and impaired HRQOL. Treatment with RFA was demonstrated to restore the patients HRQOL to an equal level of that of the matched reference group. PROs are important to take into consideration in the care of arrhythmia-patients, to achieve the patients’ subjective experiences of their daily life situation.To the best of our knowledge ASTA is the first arrhythmia-specific questionnaire assessing symptom burden and HRQOL, suitable for most arrhythmia forms. The newly validated ASTA questionnaire can be an important contribution to assessment of PROs in arrhythmia-patients.
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| 12. |
- Ågren, Susanna, 1964-
(författare)
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Supportive care for patients with heart failure and their partners : A descriptive and interventional study
- 2010
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Having the support of a partner is essential for both health related quality of life and survival in heart failure patients. However, caring for a patient with heart failure may affect the health related quality of life, well‐being and cause a burden for the partner. The partner is expected to be responsible for the care, which may have consequences for the heart failure patient’s long‐term health and well‐being. Further research to determine health related quality of life, well‐being, caregiver burden and needs of partners is warranted as well as studies evaluating interventions targeting patient‐partner dyads.Aim: The overall aim was to describe how the life situation of patient‐partner dyads was influenced by heart failure and to determine the effects of an intervention of follow‐up with education and psychosocial support for patient‐partner dyads.Design and methods: The thesis is based on three quantitative studies and one qualitative study. The first two studies were descriptive and included 135 dyads (patient‐partner) (I, II) and the randomised intervention study included a total of 155 dyads (IV). The qualitative study had a grounded theory approach. Thirteen partners were interviewed and data analysed using constant comparative method (III).Results: Caregiver burden was perceived as moderate in 30% of the partners and the rest experienced a low caregiver burden. The patients’ physical component score of SF‐36, partners’ mental component score of SF‐36 and perceived control explained 39% of the caregiver burden (I). Patients had lower health related quality of life compared to their partners in all dimensions except in the mental health domain of SF‐36 and lower qualityadjusted life year weights compared to their partners. Mental health scores were lower in partners compared to age and gender‐matched references. All other health related quality of life scores and the quality‐adjusted life year weights were comparable between the partners and the reference group. Patients had more depressive symptoms than their partners. There was no difference in the level of perceived control or knowledge about chronic heart failure between patients and partners (II). During grounded theory analysis confirmation was identified as describing the core category of the partners’ individual needs. The core category theoretically binds together three underlying subcategories: security, rest for mind and body, and inner strength. Confirmation facilitated acceptance and improvement of mental and physical health among partners (III). At the three month follow‐up the dyad‐intervention had improved perceived control in patients, but not in the partners. There were no other significant differences in the control and intervention group with regard to the dyads’ health related quality of life and symptoms of depression. There were also no differences in the patients’ self‐care behaviour and partners’ experiences of caregiver burden (IV).Conclusions and implications: Partners to patients with chronic heart failure are at risk of decreased mental well‐being. One third of the partners experienced a moderate caregiver burden and was therefore at a higher risk of poor mental health and decreased perceived control. During short‐term follow‐up the intervention with education and psychosocial support to dyads (patient‐partner) improved the level of perceived control in the chronic heart failure patient group. By identifying partnersʹ needs for security, rest for mind and body, and inner strength, healthcare professionals can confirm these needs throughout the caring process, from the critical care period and throughout rehabilitation at home. Interventions targeting dyads have been limited in previous research. Partners need to be prepared regarding the disease process, the daily regimen, hopes for the future and responsible care providers. They also need to be confirmed because they are vital to the patients’ recovery. Further, the effects of the intervention study should also include a long‐term follow‐up as well as an evaluation of the health‐economic perspective including direct and indirect costs of care.
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