Kuhnke, Janet L. RN, BA, BScN, MS; Bailey, Patricia Hill RN, BN, MHSc, PhD; Woodbury, M. Gail BScPT, MSc, PhD; Burrows, Mona RN(EC), BScN, MScN, NP-PHC
Qualitative health research is used by interdisciplinary teams to explore states of health, maintenance, and illness from the perspective of the individual, family member, caregiver, or clinician, rather than reporting only the researchers’ perspective. Qualitative research seeks to “elicit emotions and perspectives,” beliefs and values, and actions and behaviors for the purpose of understanding the participants’ responses to health and illness, the meanings they construct about the experience, and their subsequent actions.”1 Qualitative health research findings are the “grounded theories, ethnographies, phenomenologies, and other integrated descriptions or explanation produced from the analysis of data obtained from interviews, observations, documents, and artifacts.”2 In qualitative research, the building of new knowledge occurs when one develops a research question asking “what is happening or going on?” Then, the methodology is chosen that best supports answering the research area of interest.3 This article highlights several key qualitative methodologies seen in studies seeking to understand diabetes and related diabetic foot complications, ulcerations, and potential amputations.
In recent years, new and thoughtful qualitative methodologies have emerged to answer specific research questions.4,5 Research approaches are “developed in different disciplines [of practice], different traditions, and on the basis of different ideas of science.”6 Overall, these approaches and methods emphasize the collection of individual and group firsthand accounts or self-report of life experiences and events through interviews and/or observations. Interview data, observations, and narratives are recorded, typed, or transcribed into texts, narrative data sets, or accounts to be further studied by the researcher. When recruiting and selecting individuals to share their personal stories, researchers “choose people [purposive samples] who are willing to describe [articulate] their experience… [and] who can adequately reflect on their experience and verbally describe it.”6
Although qualitative methods are not without drawbacks, challenges, and limitations, 7,8 they do offer a depth of understanding of the experience of living with or experiencing a diabetic foot ulcer that other research approaches may not offer. As cited in Sandelowski,2 Selikoff states “qualitative findings are said to show the tears that statistical accounts wipe off.” The language within qualitative research studies, however, may not always make the research process transparent for the uninitiated.9 Nevertheless, “the researcher’s goal within all qualitative models, regardless of the differing approaches and methods, is to ‘interpret’ and or ‘reconstruct’ subjective meaning.”10 Within this inquiry paradigm, researchers need to be clear on the philosophical foundation and methodological approach they are using and clearly outline this for the reader. Qualitative studies may be conducted as part of a larger study, to initially explore an issue where little research exits, and/or in partnership with a quantitative study. Qualitative studies contribute greatly to the understanding of an individual’s experience with diabetes, diabetic foot ulcers, and amputations.
The Diabetes Challenge Worldwide
As of 2013, the World Health Organization reports 347 million people worldwide have diabetes, creating a global epidemic.11 In developed countries, diabetes-related lower limb amputations are “at least 10 times more common in people with diabetes than in non-diabetic individuals.”12 In 2011, the American Diabetes Association reported a prevalence of diabetes in adults and children at 8.3%; neuropathy was reported in about 60% to 70% of persons with diabetes. In addition, 60% of non traumatic lower-limb amputations occur in this population.13 In Canada, the Canadian Diabetes Association estimated in 2012 that 9 million Canadians are living with diabetes and pre-diabetes adding to the diabetes issue globally.14
In its 2013 report, the Canadian Diabetes Association estimated that the number of Canadians living with diabetes will increase to 3.7 million by 2019 and emphasized that diabetes is the leading cause of “blindness, end stage renal disease and nontraumatic amputation in Canadian adults.”14 With approximately 2.4 million Canadians living with diabetes, an estimated “345,000 will develop a foot ulcer.”15 Therefore, understanding the disease and its complications from the perspective of the individual is essential for healthcare professionals providing holistic care.
Diabetes mellitus (DM) may be type 1, type 2, or gestational in nature.14 One of the feared complications of diabetes is a diabetic foot ulcer.16 Diabetic foot ulcers are defined as “infection, ulcerations, and/or destruction of deep tissues associated with neurologic abnormalities and various degrees of peripheral vascular disease in the lower limb; approximately 40%–60% of all lower extremity amputations are related to diabetes mellitus.”17 Research shows that at least “85% of lower extremity amputation is preceded by a diabetic foot ulcer.”18
To support individuals living with a chronic wound, findings suggest regular pain assessments and reassessments, mobility assessment and support access to devices, referring individuals to support groups, and creation of partnerships with the individual and healthcare professionals.
The cost of diabetes in the United States has increased from $174 billion (in 2007 dollars) to $245 billion in 2012, a 41% increase. This is a significant issue for the healthcare system.19,20 In Canada, the cost of diabetes is also significant. In the year 2000, it was estimated that Canadian healthcare costs exceeded $4.6 billion (1996 CAD) and costs were predicted to rise to $8.1 billion by 2016.21 These costs are expected to continue to rise over time. For example, in the province of Ontario, costs are estimated to rise from $1.8 billion to $3.1 billion by 2016.22
As rates of diabetes increase, understanding diabetes from the individual’s perspective is essential because living with a diabetic foot ulcer affects the quality of an individual’s life. Social well-being, employment status, psychological welfare (self-esteem), mobility, physiological health, and overall health are all affected by living with a foot ulcer.23–32
Phenomenology is a philosophical perspective and a qualitative methodology.7 Studies using a phenomenological focus aim to describe the meaning of illness experiences from the individual’s perspective.33 Studies may use interviews, observations, documents, and art to collect data for analysis; several individuals who “have shared the experience” (eg, a diabetic foot ulcer) of interest are the focus of the study.34
Struthers et al35 use phenomenology to examine participants’ experiences of being part of a “Talking Circle” for individuals with type 2 diabetes from the Northern Plains American Indian Tribes. The study’s objective was to understand the experience of being part of a 12-week diabetes educational intervention. Talking Circles represent “important principles in the Aboriginal worldview and belief systems, namely, interconnectedness, quality, and continuity.”36 Through Talking Circles, researchers learned from the participants that this was an effective, culturally appropriate means of providing information about type 2 diabetes in their community. Eight themes emerged from the study data, including how harmonizing western diabetes information with traditional indigenous methods could be achieved. One study participant shared how she and her husband were able to merge prayer, traditional medicine practitioners, dreams, traditional rituals, and a belief in the Creator to help heal her husband’s diabetic foot ulcer. These are powerful practical insights to be used when creating culturally sensitive programs.35
Beitz and Goldberg37 used phenomenology to explore the meaning of the lived experience of individuals living with a chronic wound (arterial, venous, diabetic, pressure, unknown). Using interviews and field notes with 16 white (retired) study participants, the researchers analyzed findings into 3 key cluster themes (physiological, psychological, and social): “living with pain, changing eating patterns, losing mobility, explaining causes of wounds, receiving care, healing and recuperating, contending with chronic illness, adapting and maladapting, living and aging, dealing with wound treatments, and experiencing altered sleeping habits.”37 Some of the reported themes were described in other research studies, whereas changing eating patterns and living and aging were new findings from this study. Participants varied in their perspectives of how living with a wound affected their appetite; some experienced no change, whereas some experienced significant changes. Living (and aging) with a wound varied in the study findings. Residents in the study relied on past knowledge and life experiences to remain optimistic and hopeful and to appreciate the care they received. Some used personal “self-talk” to feel better while living with a chronic wound.
Goldberg and Beitz38 further explored the lived experience of diverse older adults with chronic wounds (African American, Hispanic; 7 men, 4 women) living in financially fragile circumstances. Chronic wounds were described as wounds being present for longer than 8 weeks. The researchers found that diverse older adults experienced “tolerating pain, missing normal mobility, living with chronic illness, and explaining causes of wounds” in the same way white older adults did in their 2005 study.37
New study findings were “encountering losses, considering costs, and changing social roles.”38 Costs included spending personal savings on care to the point of being dependent on the state programs (eg, Medicaid, Medicare). Chronic wounds often occur when an individual is coping with other chronic illnesses, adding stress and possible disruption to their already busy lives. To support individuals living with a chronic wound, findings suggest regular pain assessments and reassessments, mobility assessment and support access to devices, referring individuals to support groups, and creation of partnerships with the individual and healthcare professionals.
Grounded theory is an approach used to purposively develop a theory about a “dominant social process rather than to describe a particular phenomenon.”3 The goal of grounded theory is to generate or expand a theory that addresses problematic realities for individuals facing healthcare challenges. The method of grounded theory uses constant comparative analysis and theoretical sampling, which enhances engagement in data analysis.39 The product of a grounded theory study is the identification of patterns or process through the examination of the experiences of those experiencing those realities.40
Narrative research is one of the many research approaches with the aim of providing insight into the lives of individuals by “transforming data from, by, and or about participants into literary story formats.”
For example, for individuals living with DM the risk for developing a diabetic foot ulcer and experiencing an amputation is a real personal fear, though preventable with proper daily foot care.41,42 To understand the individual’s experience, Livingstone et al43 used a grounded theory approach, exploring what the “day-to-day life” is like for someone with diabetes after amputation. Using unstructured interviews, grounded theory methods, and data analysis, 3 key categories emerged from the study data: “imposed powerlessness, adaptive functionality, and endurance.”43 Individuals shared stories of moving from single-digit amputation to more complex procedures and amputations. They shared what this was like for themselves and their caregivers to experience these events. This small study adds to the understanding of the “path of perpetual resilience” that individuals experience. The researchers recommend that clinical teams support an individual’s psychological adaptation to life after amputation. This is important research because clients may experience more than 1 amputation in their journey living with diabetes.42
Ethnography seeks to understand culture and human processes, through prolonged engagement, using inside (emic) and outside (etic) perspectives, gaining tacit knowledge (deeply embedded cultural experiences), and using the researcher as an instrument to construct theory.44 Ethnography involves field work, collecting observations, conducting interviews, and communication with the cultural group to describe the emergent cultural themes.34
De Vera45 used ethnography to explore and describe perspectives on healing DM foot ulcers by Yaqui Native Americans (Arizona, United States).44 Eight cultural themes or domains of meaning emerged from the 8-month data collection period. These included (1) the experience of having foot ulcers, (2) personal self-care beliefs and practices, (3) faith and strength (religion, spirituality, and philosophy of life), (4) types of support (spiritual, family, and professional), (5) difficulties with diabetes complications, (6) prevention of foot ulcers through self-care measures, (7) ceremonies, (8) and cultural themes (prayer that gives power for healing, the Yaqui health way of life, foot ulcers as a modern illness, and supports to survive the difficult journey with diabetes).
De Vera’s45 study emphasizes the need for healthcare professionals to learn and regard traditional healing practices as part of the individual’s belief system. These efforts assist in the integration of traditional healing methods with western biomedicine, promoting healthy outcomes.42 Taking time to listen to individuals’ beliefs; encouraging the use of support groups; and learning about specific cultural beliefs, perceptions, and healing practices may help with healing of diabetic foot ulcers.46
Case study research involves the study of “one person, one group, one event, one organization, and so on.”44 The aim is to analyze and examine in-depth the setting or participants of interest to uncover common and potentially unique transformative exemplars available in no other way.47,49 This approach involves use of a case, multiple cases over time, observations, interviews, documents, or reports within a setting or context and examines an issue not readily explored by other research approaches available.34 Case study approach can “be designed in a variety of ways and can involve quantitative, qualitative or both investigative approaches.”50 Zucker50 outlines the difference between a case review and a case report that healthcare professionals may see in educational formats. The case study differs in that key features “are its scientific credentials and its evidence base for professional application… [and it] often involves in-depth interviews with participants and key informants, review of the medical records, observation, and excerpts from patients’ personal writings and diaries.”50
Tian et al51 use a case study research approach to share the case of a 71-year-old woman with a diabetes-related ulcer on her hand; one limitation of this study is that the individual’s personal perspective was not included. In the study, the researchers give the medical history and causes of a diabetic hand ulcer caused by Streptococcus agalactiae and how the wound/amputation site closed during a 32-day period after surgery. The individual history, laboratory values, surgical care, wound care treatment, and outcomes are shared in the case study. The researchers reflect on the rarity of this case and what is known about “tropical diabetic hand syndrome” and its relationship to long-term diabetes, poor blood glucose monitoring, and lack of attention to small wounds.51 Overall, the case study approach used shares a “rare” case in a professional format and reminds clinicians of the rapid treatment required to support positive outcomes in these situations.
Narrative research “is the study of stories.”6,8 Narrative research (narrative inquiry) is one of the many research approaches with the aim of providing insight into the lives of individuals by “transforming data from, by, and or about participants into literary story formats.”44 A study using narrative inquiry follows research structures that examine either life stories or limited accounts within the larger segments of interview data.48 To explore the individual’s life, researchers use interviews and documents to help tell the story. Once data and stories are collected, the researcher “stories” and “re-stories” the information through data analysis strategies with the goal of developing themes or ordering the data into a chronological order.34
As diabetes increases worldwide and the costs to the healthcare system and the individual living with the disease increase, understanding the disease from the perspective of the individual is crucial.
For patients, these stories provide access to subject reality, that is, their truth and the meanings of their experiences. These meanings constitute important personal truths, which are vitally important to understand and provide appropriate care of individuals living with chronic illness.52,53
Bird et al54 explore the role of storytelling and the challenges of conducting cross-cultural research with indigenous Inuit peoples using interviews, thematic analysis, open coding, and structured narrative analysis. The narrative study highlights persons’ experiences of coping and negotiating social support while living with diabetes. This study is important because the prevalence of diabetes among the “Inuit and Alaska Natives…... has substantially increased and is now comparable with the general Canadian population.”14
Bird et al54 state the importance of the following in individuals living with diabetes: having support and sharing diabetes knowledge among friends and family, managing stress while living with the disease, accepting support from family members, and having help to make nutrition choices and changes to one’s diet. Storytellers in this study also discussed the importance of diabetes education; one storyteller narrative included a discussion on the need to “watch your feet” and to “get checked” and get “your eyes” checked when you have diabetes because there are consequences if you do not care for yourself.53 The study findings help healthcare professionals understand some of the aspects of the Inuit culture when planning, providing, and evaluating diabetes outcomes; the researchers emphasize the importance of taking time to appreciate the complexities of providing appropriate culturally sensitive education.
Metasynthesis is a combining of qualitative studies on a specific topic to produce a new integrative interpretation of findings; through integration, a more functional result may emerge than from single investigations.55 These studies are a useful way to access relevant literature on a topic in a timely and effective manner.49 This approach is not without its critics at every step of the process.55,56 One risk is the inclusion of weaker studies, which in turn may weaken the metasynthesis result. Researchers using the approach work closely together and set criteria for inclusion of studies in the metasynthesis. This methodology offers researchers an opportunity to synthesize data from “phenomenologies, ethnographies, grounded theories, and other coherent descriptions or explanations of phenomena, events, or cases”56; There are ongoing efforts to standardize this approach.
Clinicians working with persons with diabetes assess and discuss depression in an effort to understand how it influences the functioning and self-care activities by individuals. Gask et al57 conducted a metasynthesis seeking to explore qualitative studies examining individuals’ experiences of diabetes and depression. The metasynthesis study result reflects the complexity of diabetes as a disease. The researchers discuss that the impact of diabetes symptoms was “associated with varied psychological reactions, not all of which are negative, and the concept of depression only capture aspects of the experience [yet] depression and other psychological states were significant barriers to effective coping.”57 This is an important study approach in diabetes because it synthesizes smaller important qualitative studies into useable data for clinicians assessing for depression in individuals living with diabetes or diabetic foot ulcers.
This article has highlighted a few of the qualitative approaches used in health research to increase understanding of diabetes, diabetic foot ulcers, and amputation. As diabetes increases worldwide and the costs to the healthcare system and the individual living with the disease increase, understanding the disease from the perspective of the individual is crucial. The goal is to share with clinicians the strengths of qualitative approaches as a means to gain understanding of DM and its complications. Sandelowski48 states:
“Qualitative health research is an inductive research approach used for exploring health and illness. It considered the perspective of the people themselves, rather than the researcher’s perspective [it is used] to elicit emotions and perspectives, beliefs and values, and actions and behaviors for the purpose of understanding the participants’ responses to health and illness, the meanings they construct about the experience, and their subsequent actions.”
As the prevalence of diabetes and related complications increases, understanding the perspectives of individuals, families, and caregivers is essential to help guide clinicians’ assessment, planning, and evaluation of health outcomes.
* Qualitative research approaches support exploring the complexities of diabetic foot ulcers from the client and family perspective.
* Qualitative health research findings are the “grounded theories, ethnographies, phenomenologies, and other integrated descriptions or explanations produced from the analysis of data obtained from interviews, observations, documents, and artifacts.”2
* Provision of holistic care includes listening to the clients’ perspective and creating care plans with mutually agreed elements.
* Non-traumatic lower limb amputations are 10 fold higher in persons living with diabetes, according to the World Health Organization.
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