A complex intervention study on a palliative rehabilitation blended learning program to support relatives and health care providers of people with ALS and FTD in coping with challenges

Projekter: ProjektForskning

  • Rehabiliteringscenter for Muskelsvind
  • REPHA- Videnscenter for rehabilitering og palliation
Se relationer på Aarhus Universitet

Beskrivelse

Background
Amyotrophic lateral sclerosis (ALS) is regarded as the most devastating of adult-onset neurogenerative disorders and affects approximately 130 people in Denmark every year. 80% of the people with ALS (PALS) are at risk of developing fronto temporal dementia (FTD). There is no medical cure for ALS and FTD. Relatives of PALS/FTD and their health care providers (HCPs) are burdened by the challenges the diseases entail. Literature is sparse on how these can be addressed and supported.
This project concerns a coordination of a palliative and rehabilitation approach, where information and support for relatives and HCPs have proved effective regarding making their daily lives more manageable. Studies recommend online support to relatives of PALS/FTD-dysfunction as many of them find it difficult to get away from home, but this has not yet been tried. Telehealth is generally viewed favorably by PALS, relatives and multidisciplinary team members because the method removes some of the burden of travelling, thereby resulting in lower stress and more comfortable interactions.

Aim
The aim is to involve relatives of deceased PALS/FTD-dysfunction and HCPs in developing and testing the feasibility of a targeted palliative rehabilitation blended learning program (PRBLP) to support relatives of PALS/FTD-dysfunction and HCPs in coping with challenges. The feasibility study will be used as a background for a RCT study, which studies the effect of this complex intervention targeted to support challenges of relatives and HCPs.

Research question I
What experiences and perspectives do relatives of deceased PALS/FTD-dysfunction and HCPs have on challenges and needs in relation to coping with PALS/FTD-dysfunction?

Research question II
a) How can a complex intervention (in form of a blended learning program) be developed to meet the challenges and needs of relatives?

b) How can a complex intervention (in form of a blended learning program) for HCPs meet the challenges and needs in relation to support coping in families with ALS/FTD-dysfunction?

Research question III
a) What are the relatives’ experiences and perspectives of a new developed targeted PRBLP in relation to coping when their nearest have ALS/FTD-dysfunction?

b) What are the HCPs’ experiences and perspectives of a new developed targeted PRBLP in relation to coping with a PALS/FTD-dysfunction and supporting the families? (Study IIIb will be conducted as part of a future Post Doc)

Hypothesis
Involving relatives to deceased PALS/FTD-dysfunction and HCPs in developing a complex PRBLP will result in a relevant, targeted and feasible program with health improving effects as outcome. The program will enhance the relatives’ ability to cope with a PALS/FTD-dysfunction and enhance the HCPs’ ability to support the families.

Methodology and research plan
The qualitative study design is in accordance with the framework of complex interventions using the Interpretive Description Methodology as well as the Salutogenesis of Antonovsky as a theoretical framework.

Perspectives
The PhD program will contribute with knowledge about the new intervention and document the scope of the challenges and needs the vulnerable group of relatives of PALS/FTD-dysfunction represent as well as the challenges of the HCPs. The PhD will provide know-how of the new intervention which hopefully will benefit other patients’ groups national and international.


Kort titelPh.d.projekt - Lene Klem Olesen
StatusIgangværende
Effektiv start/slut dato01/11/201931/10/2022

ID: 172091564