Research Methodology

KOikonen_Dubberly_ModelA Service Design Approach
The project approach has undoubtedly been driven by my personal experience. Using a service design methodology, the goal was to engage people with lived experiences to better understand the challenges of experiencing end-of-life at a distance. To support a holistic understanding of the environment, it was important to hear from both Distance Family Members as well as healthcare practitioners who support patients and caregivers at end-of-life.

Although still an emerging practice in Canada, service design focuses on designing for the needs of customers (SDN, 2015) and applies established design processes to the development of services (Stickdorn & Scheider, 2011). As patient and family-centred care is at the core of the palliative philosophy, a service approach was a perfect fit.

An initial literature review revealed that the distance family member was under-represented in current research and served as the foundation for framing the following project research questions:

What are the needs of family members who are at a distance from a loved one during palliative care?

How might we better meet the needs of family members who are at a distance during palliative care in Ontario?

Service Design & Healthcare
Project Methodology
In collaboration with fellow Strategic Foresight and Innovation student Adam Starkman, we have developed a project methodology, and a corresponding research plan: combining a service design methodology with foresight and systems thinking, we aim to develop solutions that are human-centred, viable and sustainable.

Both of our respective projects deal with vulnerable populations within the healthcare sector.
As designers, we are uniquely positioned to bring “a holistic and systemic design perspective to the complex problems of healthcare” (Jones, 2013). It is through this holistic and systemic approach that we are able to identify and define problems, generate new ideas, and converge on solutions that can be implemented and ultimately result in positive change (Basadur Applied Creativity, 2015).

Design research is an evolving field (Sanders & Stappers, 2008), especially within a healthcare
system that is strongly rooted in an evidence-based approach. As we developed our project methodology, we quickly determined that, for both patient and family populations, it is imperative to engage those with lived experiences to inform the identification of needs, opportunities and challenges. Furthermore, we selected research methods and techniques that involve these individuals as co-creators in the development of the ultimate solution. This participatory approach is important because the users themselves will measure the success of any proposed innovation in the uptake of services.

Service Design
Service design is defined by five key principles (Stickdorn & Schneider, 2011):

  1. User-Centred: Services should be experienced through the customer’s eyes.
  2. Co-Creative: All stakeholders should be included in the service design process.
  3. Sequencing: The service should be visualized as a sequence of interrelated actions.
  4. Evidencing: Intangible services should be visualized in terms of physical artifacts.
  5. Holistic: The entire environment of a service should be considered.

Moreover, as Hugh Dubberly illustrates (see illustration above), our approach moves from an exploratory process intended to gain understanding of the needs and desires of the users, to a generative phase where users co-create possible innovations, and finally to an evaluative stage where solutions are socialized and implemented (Dubberly & Evenson, 2010).

Strategic Foresight
The proposed methodology does not proclaim to incorporate a fulsome approach to futures work, but does suggest that any proposed change or intervention should take into account the current situation, while being mindful of the forces that are shaping the future (Stein & Goodman, 2007). Foresight methodologies, such as Horizon Scanning (Popper, 2008)— which provide a framework for the identification, examination and understanding of emerging shifts, based on social, technological, environmental, economic, political and values (STEEP-V) factors—have been adopted to understand potential impacts on the particular area of interest (Loveridge, 2002).

For the purposes of this project, scanning was limited to an environmental scan and the identification of key shifts that might impact the acceptance or sustainability of proposed interventions.

Systems Thinking
Once again, it would clearly be an overstatement to suggest that this project will address the systemic challenges that exist within the Province of Ontario’s healthcare system. However, in order to identify meaningful opportunities for change, or targets for innovation, it is important to understand the system in which we are operating. It is our understanding of the whole that will enable us to influence specific parts of the system (Ackoff, 2004). Greg Van Alstyne, professor in the Strategic Foresight and Innovation program, has expressed how to consider the two scales simultaneously, in that “problems are systemic, but interventions are local.”

Systems mapping is an effective visualization tool that communicates the complexity of the system, and through the iterative evaluation of the system map allows for more effective and meaningful strategy development (Blair, Boardman, & Sauser, 2007).

The project does not intend to change the current system, or influence the future system in a broad way. However, the project does aim to enhance the ability of distance family members to participate in the journey of their loved one during end-of-life care. In order to do that, it is important that to understand the root of the problems, to consider the factors that contribute to the challenges observed, and to actively engage individuals with lived experience in the design of meaningful solutions.

By understanding the needs of family members at a distance through human-centred research, the goalof this project is to ultimately propose interventions that address their needs and encourage connection and information exchange, while taking into consideration the context and limitations of the current healthcare system.

Overview of Methods
The following methods were used to support the project.

Literature Review
Research of secondary sources was conducted to gain knowledge on “communication to distance family during palliative care.” Four gaps emerged from the full literature review—distance family member needs; the family communication eco-system; the family conference; and, technology protocols—as illustrated by the system map below. (Note: my subsequent major research project focused on the first gap to better understand the needs of distance family members.)

KOikonen_IS_Visual_Map_PosterSystems Mapping
Systems mapping was used to illustrate learnings on the current healthcare system, as it relates to palliative care in the province of Ontario, including current policy papers and the presence of advocacy organizations. Data points were gathered from available online research, including websites, policy papers, newspaper articles and other material that highlighted the existing landscape in which palliative care lives.

Horizon Scan
Building on the literature review and complementary to the Systems Mapping of the current palliative care landscape in Ontario, a horizon scan foresight methodology focused on the family structure, living situations, technology use in family communication and attitudes towards death and dying. Based on a five-year horizon, scanning for signals of change—found in blogs, journals, policy papers, popular culture, websites, magazines, etc.—was used to identify patterns indicating shifts in the current landscape (Jackson, 2013). Signals were sorted using the STEEP-V (Loveridge, 2002) framework and gathered into a focused set of shifts with particular relevance to the research questions.

Confessional Ethnography
As the topic for this major research project is based on a personal experience, I undertook a confessional ethnographic exercise (Rode, 2011) for the purpose of formally reflecting on my own experience. The purpose of the confessional ethnography was to reveal personal biases that were influencing this project before embarking on research with participants with the intention of approaching gathered data from a more self-aware and, where possible, neutral standpoint.

Distance Family Member Interviews
Semi-structured interviews were conducted to gain a focused under-standing of the needs of family members who lived at a distance from a loved one in palliative care. Challenges and barriers to being connected with their loved one’s journey, as well as the identification of any existing services they encountered, were of particular interest. As distance was a factor in many identified participants, email interviews were offered to participants as an alternative to in-person or telephone interviews, due to geographic barriers and/or scheduling challenges. The email interview was also useful for distance family members who were interested in participating in the research, but who needed time to reflect on the questions due to the sensitivity of the topic.

Healthcare Practitioner Interviews
It was critical to hear the perspective of healthcare professionals who interact with the patient and their family members during palliative care (see Appendix D on page 106). Recruitment was approached with an eye to capturing insight from different healthcare roles and included doctors, nurses and social workers. Specific questions were crafted to better understand their experience with family members at a distance when working with patients diagnosed with a terminal illness. Insight from these professionals was critical to understanding the barriers that might be presented, and therefore, to better supporting the needs of the Distance Family Member, as well as the impact that Distance Family Member actions may have on the patient and local caregiver.

Journey Mapping
User insights informed the creation of customer journey maps to visualize the distance family member experience. The purpose was to provide “a high-level overview of the factors influencing user experience, constructed from the user’s perspective” (Stickdorn & Schneider, 2011).

Data Processing
Themes from interviews were created using an analysis and sorting technique informed by a thematic analysis approach (Fereday & Muir-Cochrane, 2008).

Participants & Limitations
Due to the sensitivity of the topic, Distance Family Members were recruited through the researcher’s personal network and social connections. Geographic distance of participants ranged from a two-hour drive to a five-hour flight from out of country. A total of eight interviews were completed in the following formats:

3 Email Interviews
2 In-person Interviews
3 Telephone Interviews

Healthcare practitioners were recruited through professional networks of the researcher, as well as through Saint Elizabeth, secondary advisor on the project. A total of nine healthcare practitioners participated in the research:

2 Doctors
3 Nurses
4 Social Workers

All practitioners had experience working in palliative care in Ontario.

Limitations to the Project
As recruitment was conducted through known social networks, Distance Family Members interviewed are of a similar socio-economic status; cultural diversity is not represented. Participants are all female and, therefore, future research should aim to hear the male voice.

Due to constraints associated with the project timeline, a number of concepts and themes, relevant to the topic of palliative care, are not included in this document. Specifically, existing research on the caregiver is not included in the scope of work.

Finally, system mapping included in this project is restricted to a high-level viewpoint. Due to the complexity of the Ontario healthcare system, as well as the researcher’s position “outside the system” nuanced illustrations of day-to-day service delivery were not possible.