Kärstin Bolse

Organisation of care for Swedish patients with an Implantable Cardioverter Defibrillator, a national survey

AIM To describe the clinical aspects of implantable cardioverter defibrillators care in Sweden with focus on organisation, the role and education of nurses, patient information and education and areas in need of improvement. BACKGROUND Implantable cardioverter defibrillators implantations have developed rapidly in recent years and are now an established arrhythmia treatment. The expanding indication for implantable cardioverter defibrillators implantation demands new competencies and resources in the implantable cardioverter defibrillators team members. METHODS Participants were recruited among physicians and nurses in all of the hospitals implanting implantable cardioverter defibrillators (n = 16). Data were collected by a questionnaire. Additionally, all written educational materials provided to patients pre- and postimplant were collected from all 16 hospitals. Deductive content analysis using Sarvimäki and Stenbock-Hults five holistic dimensions was employed to ascertain how information was provided in brochures and information materials. RESULTS Half of the hospitals (n=8) had nurse-based outpatient clinics and several others planned to introduce them. Three hospitals carried out distance follow-ups by means of tele-monitoring. The nurses had received specific implantable cardioverter defibrillators education from implantable cardioverter defibrillators companies and/or various university courses. The biophysical dimension dominated in the information material, while the emotional, intellectual and socio-cultural dimensions were scarcely described, and the spiritual-existential was not referred to at all. CONCLUSION Holistic care of implantable cardioverter defibrillators patients can be achieved by means of a multidisciplinary implantable cardioverter defibrillators team and more patient-centred educational strategies. In Sweden, the organisation of implantable cardioverter defibrillators care and follow-up is developing towards more nurse-based clinics. RELEVANCE TO CLINICAL PRACTICE Development and implementation of structured care programmes with a more holistic approach can improve future implantable cardioverter defibrillators care. The content of the written educational materials need to be more holistic, rather than mainly focusing on the biophysical and technical aspects of living with an implantable cardioverter defibrillators.

Development and evaluation of the EOL-ICDQ as a measure of experiences, attitudes and knowledge in end-of-life in patients living with an implantable cardioverter defibrillator.

Background: Due to extended indications and resynchronization therapy, many implantable cardioverter defibrillator (ICD) recipients will experience progressive co-morbid conditions and will be more likely to die of causes other than cardiac death. It is therefore important to elucidate the ICD patients’ preferences when nearing end-of-life. Instead of avoiding the subject of end-of-life, a validated questionnaire may be helpful to explore patients’ experiences and attitudes about end-of-life concerns and to assess knowledge of the function of the ICD in end-of-life. Validated instruments assessing patients’ perspective concerning end-of-life issues are scarce. Aim: The purpose of this study was to develop and evaluate respondent satisfaction and measurement properties of the ‘Experiences, Attitudes and Knowledge of End-of-Life Issues in Implantable Cardioverter Defibrillator Patients’ Questionnaire’ (EOL-ICDQ). Methods: The instrument was tested for validity, respondent satisfaction, and for homogeneity and stability in the Swedish language. An English version of the EOL-ICDQ was validated, but has not yet been pilot tested. Results: The final instrument contained three domains, which were clustered into 39 items measuring: experiences (10 items), attitudes (18 items), and knowledge (11 items) of end-of-life concerns in ICD patients. In addition, the questionnaire also contained items on socio-demographic background (six items) and ICD-specific background (eight items). The validity and reliability properties were considered sufficient. Conclusions: The EOL-ICDQ has the potential to be used in clinical practice and future research. Further studies are needed using this instrument in an Anglo-Saxon context with a sample of English-speaking ICD recipients.

Life situation related to the ICD implantation; self-reported uncertainty and satisfaction in Swedish and US samples.

The aim of the study was to describe changes in the life situation related to the ICD implantation of Swedish and US samples with regard to uncertainty and satisfaction. The life situation was measured by reference to the uncertainty caused by the condition and satisfaction with the life situation. Inferential statistics were used to analyse changes within and between the Swedish and US samples. Uncertainty showed a statistically significant difference between the Swedish and US samples before as well as after the ICD implantation. A higher level of uncertainty was indicated for the US sample prior to the ICD implantation and for the Swedish sample following the implantation. In the Swedish sample, satisfaction with life showed a statistically significant difference within the socio-economic domain, indicating a higher degree of satisfaction 3 months after implantation. Satisfaction within the domains of health and functioning, socio-economics and psychological-spiritual showed a statistically significant difference between the Swedish and US samples both before and after ICD implantation, indicating a higher degree of satisfaction in the US sample. The previous study shows that the ICD-patients life situation is changed after the implantation and that it is necessary to provide the patient with information and education based on their own preconditions. The fact that US sample was investigated at a later stage after ICD implantation than the Swedish sample may have influenced the results of the study.

Healthcare professionals’ experiences of delivering care to patients with an implantable cardioverter defibrillator

Background: An implantable cardioverter defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After an ICD implantation, the entire life situation of the patient their next of kin can be affected psychologically and socially. Healthcare professionals play a vital role in providing educational counselling, support and technical follow-up of the device, but little is known about their experiences. Aim: This paper describes the experiences of Swedish healthcare professionals in delivering care to patients with an ICD. Methods: A qualitative, descriptive design based on a phenomenographic approach was used. Data were collected through interviews with 12 specialist ICD nurses and 12 physicians, representing 16 ICD implantation centres in Sweden. Findings: Two descriptive categories comprising seven subcategories emerged. Striving to provide competent care comprised the subcategories: providing access to care, improving one’s qualifications and individualising care. Striving to infuse confirmation incorporated the subcategories: promoting independence, providing existential support, mediating security and comprising needs of next of kin. Conclusions: The healthcare professionals described how they wished to develop the care further. Both nurses and physicians were consistent in wanting to provide competent and confirming care based on a holistic perspective with high accessibility to the ICD team. The findings describe how healthcare professionals strive to provide professional clinical care in order to give the patients tools to handle their life situation. They suggested that more structured education and counselling according to guidelines should be provided. They also highlighted the need to increase their own competence by improving their knowledge and skills.