Cesar congratulats the teleyoga group to the Forte grant!

CESAR medlemmar har fått ett anslag från FORTE 3.9 miljoner för forskning om effekter av teleyoga på fysisk funktionsförmåga, hälsorelaterad livskvalitet, psykiskt välbefinnande, biomarkörer, sömn och kognition hos personer med långvarig sjukdom. Huvudsökande var Anna Strömberg och medsökande var CESAR medlemmarna Tiny Jaarsma, Ingela Thylén, Leonie Klompstra, och Peter Johansson samt kardiolog Urban Alehagen, hälsoekonom Jenny Alwin och Lottie Orvelius omvårdnadsforskare inom intensivvård. Projektet genomförs på universitetssjukhuset i Linköping, Vrinnevisjukhuset i Norrköping och Länssjukhuset Ryhov i Jönköping.

 Sammanfattning av ansökan: Många äldre personer med långvarig sjukdom är fysiskt inaktiva och har svårt att lämna hemmet för att delta i rehabilitering. Vår hypotes är att teleyoga i hemmet med en yogainstruktör och andra deltagare i grupp via weblänk och instruktioner hur man dagligen själv gör medicinsk yoga med hjälp av en app kan vara en metod för att öka psykisk och fysisk livskvalitet, den fysiska funktionen och förmågan att klara av dagliga aktiviteter.

Medicinsk yoga är en form av Kundaliniyoga med enkla rörelser, andningsövningar och meditation. Yoga har visat effekt på livskvalitetet, men tidigare studier har endast inkluderat små selekterade urval. För äldre personer med långvarig sjukdom kan det vara svårt att delta i vanliga yogaklasser. Vi har utvecklat en teleyoga intervention och vill nu utvärdera effekterna med avseende på livskvalitet, fysisk funktionsförmåga, symtom på ångest och depression, biomarkörer för stress och inflammation, sömn och kognition hos äldre personer med långvarig sjukdom. Vi kommer även att mäta sjukvårdskonsumtion, upplevelser av och tillfredställelse med yogan och tekniken. Utvärderingen sker genom att 150 äldre personer över 65 år med långvarig sjukdom rekryteras från tre sjukhus (ett universitetssjukhus och två länssjukhus) och lottas till en intervention med medicinsk yoga i hemmet med teknikstöd eller ett individualiserat träningsprogram. Teleyogan kommer att omfatta yogasessioner i grupp, 2 gånger/vecka som leds av en certifierad yogainstruktör via weblänk till en surfplatta kombinerat med en app i surfplattan med instruktioner hur man genomför medicinsk yoga på egen hand mellan de instruktörsledda yogasessionerna. Data om livskvalitet, funktionsförmåga, ångest och depression, biomarkörer, sömn och kognition kommer att samlas in vid baslinjemätning, efter 3 och 6 månader. Denna studie tar ett nytt grepp på rehabilitering av långvarigt sjuka äldre genom att utvärdera en medicinsk teleyoga på distans i hemmet.

Med vänlig hälsning

Anna

New instrument for meassuring self-care avaliable

This might be an interesting publication for a lot of researchers in our field, published by a large group of researchers, including some CESAR members.

The instrument measuring self- care and it is a generic instrument named, Development and initial testing of the self-care of chronic illness inventory

B Riegel presenting this work at the 2018 Canberra Health Annual Research Meeting (CHARM). In Canberra in August 2018 and won the SYNERGY Award for the Best Nursing Research Oral Presentation. (see twitter: https://twitter.com/DrJaarsma/status/1025290685170114561)

Presentation of Martje van der Wal

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Martje is a Heart Failure nurse in the Netherlands and PhD who is working since several   years as a post-doc at the Department of Social and Welfare studies at the University of Linköping.

Martje received her PhD in the Netherlands at the Department of Cardiology at the University Medical Centre Groningen in 2007 in the COACH study with her thesis ‘Compliance in heart failure patients; who cares?’ Since several years she is working as a post-doc in Linköping together with researchers on thirst in HF patients, the Wii study and the TALK-HF study on discussing prognosis in HF patients. Recently, a grant from FORTE was received for her to work more intensively on the TALK-HF project. She will help to test a new developed Swedish communication tool about discussing the disease trajectory with HF patients among patients and health care providers in the Netherlands. She will also be involved in a survey among cardiologists in Sweden about discussing prognosis with HF patients. This survey was recently conducted in the Netherlands and presented at ESC Heart Failure 2018 in Vienna. Finally she will be involved in international research collaboration for developing a communication course for professionals about discussing prognosis and disease trajectory with HF patients.

Martje will work together in the TALK-HF project with Tiny Jaarsma, Anna Strömberg, Jan Mårtensson and Lisa Hjelmfors and also is involved in a project addressing thirst. Furthermore, she is an advisor in the HF-Wii project .

Nursing research at Heart Failure congress 2018 in Vienna, Austria

The 26th-29th of May I went to the Heart Failure Congress 2018, Including the World Congress on Acute Heart Failure in Vienna, Austria. The congress had over 5750 participants from over 80 countries. To see all the tweets during this congress, search for the #HeartFailure2018.

This year there was a lot of interesting talks and we would like to highlight the presentations given by members of the CESAR group.

Dr Tiny Jaarsma gave a talk about sex and heart disease. Pointing out that heart disease can lead to sexual problems. Furthermore, patients think that sexual counseling should be part of cardiac rehabilitation, which is often not a subject that was discussed. Patients prefer to receive written material and/or individual discussions. We should remember, according to Dr. Anna Strömberg, that patients with a LVAD are going through a transition in life and that there are psychosocial challenges in patients with an LVAD. See her take-home messages in the pictures below.

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In the late breaking trials, the results of the HF-Wii study were discussed, which is a study conducted by Tiny Jaarsma, Anna Strömberg, Jan Mårtensson and Leonie Klompstra. This study proves that exergaming (being physical active through video gaming) positively influences exercise capacity and wellbeing of patients with heart failure. To see an interview about this study during the interview, please click here. In a poster presenting a sub-study of the HF-Wii showed that exergaming could also be feasible for patients with a LVAD, and patients especially liked to exergame with their grandchildren.

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There was also a great session on alternative ways to be physically active in patients with heart failure. One of the alternative ways was presented by Anna Strömberg: medi-yoga. To read more about medi-yoga click here.

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Another alternative way, again using exergaming, was presented by Tiny Jaarsma.

 

 

 

 

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Leonie had two poster presentations, together with Tiny Jaarsma & Anna Strömberg, on the importance of objective measurements to assess physical activity.

 

 

Picture by @Angie_Durante89


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Hanna Allemann also presented a poster. This study focus on perceived social support and hannahealth related quality of life in persons with heart failure and implantable cardioverter defibrillator (ICD).

 

 

 

 

 

Please safe the date for next years’ Heart Failure congress 2019, 25-28th of May 2019 in Athens, Greece.

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Hanna Allemann & Leonie Klompstra

 

 

 

Congratulations Dr Hjelmfors

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When And How Do We Discuss Prognosis And End-of-life With Patients With Heart Failure? A topic that is lately much discussed on cardiac congresses is the discussion of prognosis and end-of-life with patients with heart failure. Who is responsible to discuss these difficult topics? When should these topics be discussed and how do patients like to discuss this in their heart failure care?

In a recent doctoral thesis, Lisa Hjelmfors explored the prevalence and practice of nurses discussing prognosis and end-of-life care with patients with heart failure and the nurses’ perspectives regarding discussing prognosis and end-of-life care.
Her research showed that most nurses discussed prognosis and end-of-life care with a patient with heart failure at some point in their clinical practice. Although they found that they have a role in these discussions, they found that the main responsibility for this discussion is with the physician. Together with sexuality, discussing prognosis and end-of-life are the least frequently discussed topics in heart failure clinics.
Lisa Hjelmfors points out that end-of life care should be included as a part of the daily routine at heart failure clinics and nurses should be encouraged to take more responsibility for discussing prognosis and end-of-life with patients and their care-givers.

Communication with patients with heart failure should always be tailored, this is strengthened by the findings in her research that patients have different preferences in discussing prognosis and end-of-life.

But a lot of research is yet to come. We have to find good ways to make it easier to discuss end-of-life and prognoses for both nurses and patients. End-of-life simulations could provide successful and appreciated learning situations for nursing students, teaching them communication skills in challenging situation.  A prompt list could help patients to initiate discussion. Research is also needed on how to include care-givers in discussing end-of-life and prognosis and look at their perspectives on these discussions.

Posted by Leonie Klompstra on May 24, 2018 11:09 AM America/Chicago

Self-care day in Rome 2018

 

sc rome

Tiny Jaarsma and Anna Strömberg went to Rome on the 14 and 15 May to share knowledge and experience on using the Middle Range Theory of Self-care in Chronic Illness during a conference organized by the Nursing center of excellence in Rome. A lot of researchers and students from Tor Vergata University in Rome presented their impressive work using this theory in patients with cardiac disease but also other chronic disease such as COPD and diabetes. It seems that the theory is very valuable to structure research and use in patient care and instrument development.


International guests at Linköping University to celebrate the HF-Wii study

logo wii

 

15 and 16 of April 2018 international researchers had a 2-day meeting at LiU’s campus Norrköping.

WWIITiny Jaarsma, Anna Strömberg and Leonie Klompstra welcoming all.

After an intense collaboration of 5 years with colleagues from 10 centers that included patients in the HF-Wii study we organized 2 days of presentations, discussions and practical instruction. Our research colleagues from Sweden (Linköping, Norrköping, Nyköping, Jönköping and Stockholm) and colleagues from Italy, Israel, Germany, Netherlands and USA collected data from in total 605 patients in 10 centers.

åhörare 2

Scientific discussions included intention to treat and per protocol analysis and optimal dissemination.  We also presented first outcomes (positive results of playing an exergames), experiences of patients and planned analysis and sub-studies.

A visit to the local patient organization to learn on implementation of the results completed 2 inspiring days.

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Part of the international research group at ’Föreningen HjärtLung Norrköping.

To read more about the study please visit our website: www.hf-wii.com or follow us on twitter @HFWii

 

 

 

 

Workshop on Rehabilitation and Long-Term Management of Heart Failure Patients

Dear all,

The 21st – 22nd of March I was invited to be speaker for the Heart Failure Association Training Workshop on Rehabilitation and Long-Term Management of Heart Failure Patients in Pisa Italy, a course of the European Society of Cardiology. This was such an honour, especially because I attended this course myself as a PhD student four years ago.

CCNAP

The first day of the workshop we learned a lot about the guidelines for rehabilitation and prevention and there were presentations on Acute setting/post-acute setting – first steps in initializing cardiac rehabilitation. Additionally, there were two live sessions from the cardiac clinic in the hospital of Pisa (Fondazione Toscana Gabriele Monasterio per la Ricerca Medica e di Sanità Pubblica). One live demonstration on early mobilization and physical reconditioning in acute setting and the second on cardiopulmonary exercise testing.

In the evening we visit the Acient Camposanto in Piazza dei Miracoli and had dinner with all the participants and speakers in the course. A perfect ending of an excellent first day.

piza

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The second day the presentations were on phase two in rehabilitation, emerging scenarios in heart failure: case presentations and multidisciplinary approach in rehabilitation. I gave a case presentation on tele-rehabilitation and Wii gaming and a presentation on how to deal with vocational, sex and other crucial items in rehabilitation. On sexual counseling in rehabilitation I wrote a blog for the early career blogging of the American Heart Association. There is a very nice online web-seminar of sexual counseling in cardiac patients on the website of the European Society of Cardiology, if you would like to learn more about this subject.

 

Leonie Klompstra