Carrying out qualitative research under lockdown: PROCare4Life telematics Interviews and Workshops

In a previous post we talked about the online surveys that PROCare4Life Consortium launched to gather quantifiable data from Parkinson’s, Alzheimer’s, dementia patients and caregivers regarding their health, quality of life and use of ICT systems. This time we will address PROCare4Life’s qualitative research through telematics interviews and workshops.

A transversal qualitative research for rich data collection, through interviews and workshops, was first planned to be carried out through face-to-face interactions in this phase of the project, WP2- User, System and Ethical Considerations. But because of Covid-19 situation, the PROCare4Life Consortium has tried to adapt to the current reality and researcher have re-designed their qualitative methods taking into account existing social-distancing measures.

The beginning of this research had to be postponed during the peak of the pandemic (M3-M5) to not put participants under any additional unnecessary stress. Also, after some internal discussions among partners, the Consortium decided to virtually replicate the interventions with the use of phone calls and video-calling systems (e.g. Skype/Zoom).

By doing this, all partners had to inform their ethics committees about the modifications in the method of data collection having taken priority health and wellbeing of our participants and researchers over research timelines.

In this sense and in this context, from June to August 2020, PROCare4Life team and more specifically APM, CCPP, CNS, KIN, MU, UMF and WBW partners will be ready to conduct 40 interviews:

  • 10 interviews addressed to patients and caregivers, in order to collect detailed information on their opinions, thoughts, experiences and feelings about their needs and difficulties during the healthcare process to see how a technology system like PROCare4life can fit in and meet their demands.
  • 30 interviews addressed to stakeholders (e.g. market actors; decision makers; academia and media professionals) involved in integrated health care systems from the across Europe (e.g. Germany; Italy; Portugal; Romania and Spain). Those will have the aim to identify the main aspects that PROCare4Life system should take into account to achieve success in its acceptance, development and marketing processes overcoming barriers to the acceptability of the proposed solution.

In addition to this APM, CCPP, CNS and WBW partners will conduct 4 workshops with a total of around 20 socio-health professionals (e.g. neurologists; GP doctors; nurses; psychologists; physiotherapists; speech therapists; occupational therapists; music therapists; social workers; educational and training professionals) to improve developers’ knowledge about those aspects that could support to this type of user in their functions, enabling them a better disease management and supporting them in their decision-making processes.

Performing the tasks mentioned above, the project will reach the opinion of around 60 people. The analysis of the qualitative data will involve a systematic and iterative process to identify and make sense of common themes regarding needs and requirements for a better integrated health care system.

PROCare4Life researchers will examine data from interviews and workshops in order to contextualize and tell a more holistic and accessible story about the needs of users based on their everyday needs, than the numbers alone.

In this regard, we will draw attention to the responses of some respondents and express the ideas of some of them, crossing results between the different data sources (e.g. qualitative interview questions with the descriptive statistics from the online survey).

Context

Among the most common chronic diseases in the elderly, dementia, Alzheimer’s and Parkinson’s are the most disabling, creating a strong impact on the quality of life of affected people and their families, influencing the treatment of other chronic and overlapping diseases. Almost 10 million Europeans live with Parkinson’s, Alzheimer’s and other dementias today.

There is an urgent need to increase the efficiency and sustainability of health and social care systems across Europe, as there is a growing trend in public spending, which is expected to reach 14% of GDP by 2030[1].

The main contribution of the PROCare4Life project is to propose an integrated, scalable and interactive care system that can be easily adapted to the reality of various chronic diseases, care institutions and end user needs, benefiting all actors involved (e.g. patients, caregivers and social health professionals). The main expected outcomes are to improve the quality of life of patients, to enable active living and better disease management, to support professionals in the decision-making process, to facilitate efficient communication between all stakeholders and to ensure reliable and protected access to data within Europe.

[1] https://bit.ly/2OS67E5