The Lived Experience of Resilience in the Setting of Chronic Illness and Low-Resource Communities of African Americans That Reside in Tallahatchie County, Mississippi

Abstract

Introduction

Strong links can be made between chronic illness, low-resource communities, and poor health outcomes. One such area is the Mississippi Delta within the United States that has identified its residents rank the lowest in overall health indicators with high rates of chronic illness.

Objective

This study aimed to explore the phenomenon of resilience in the setting of chronic illness and low resourced communities to gain baseline knowledge of the topic to improve protective resilience within the community.

Methods

The descriptive phenomenological psychological reduction method outlined by Giorgi et al. was used based on semistructured and in-depth interviews with eight individuals (ages 33–64) who were recruited by purposive sampling through a humanitarian organization.

Results

Six themes of the lived experience of the participants revealed the eidetic structure and essence of the experience. The results of the study provided important implications related to the meaning of chronic illness to the individual, poor resilient risk factors, antecedents to resilience, and areas to focus on for resilience promotion.

Conclusion

A lifeworld perspective of the individual can help nurses develop a greater understanding in formulating interventions for resilience promotion.

Introduction

Strong links can be made between chronic illness, low-resource communities, and poor health outcomes (Centers for Disease Control and Prevention (CDC), 2019; Noonan et al., 2016). The annual costs associated with the care of patients with chronic disease are estimated to be US $3.3 trillion and are projected to rise with aging populations (CDC, 2019). Given the statistics, understanding ways to improve health outcomes among low-resource communities with chronic illness is imperative. Kim et al. (2019) identify that geographical areas of high chronic illness occurrence, specifically cardiovascular disease, cancer, and diabetes among African American residents have been understudied. One such area is the Mississippi Delta, Tallahatchie County (MDTC) within the United States which has identified its residents rank the lowest in overall health indicators with high rates of chronic illness (Mississippi State Department of Health, 2016). This study enrolled individuals from a rural community in Tallahatchie County, Mississippi called Glendora. The community is of African American descent and will be identified as the Mississippi Delta River Region: Glendora (MDRRG). This particular geographical area is located in the heart of the MDTC and is a small community 150 miles south of Memphis, Tennessee (Tell, 2019). MDRRG is considered a low-resource community of 127 people (World Population Review, 2023). Statistics include the following: the median household income is 70% below the state average; 68% of families live below the poverty line; only, 18% of the adults have earned a high school diploma; and 86% of children in the community live below the National poverty line (Tell, 2019). The leading cause of death in the state of Mississippi is heart disease, followed by cancer and chronic lower respiratory disease (CDC, 2019). MDRRG is considered an extremely low-resource community which is highly correlated to poor health outcomes (Gennuso et al., 2016; Noonan et al., 2016).

Chronic illness rates for MDRRG residents are directly related to poor health outcomes and health disparities (CDC, 2020; Connell et al., 2019; Gennuso et al., 2016; Kim et al., 2019). In general, African Americans living with chronic illness suffer physical and mental health problems which can be long-term and often incurable (Ghanei Gheshlagh et al., 2016). Chronic illness is linked to repeated stress that threatens the health, wellbeing, and future welfare of the individual affected (Braveman & Gottlieb, 2014; CDC, 2019, 2020; Kim et al., 2018, 2019). One important area of research includes the phenomenon of resilience in the setting of chronic illness to enhance better health outcomes. Because resilience is so strongly linked to a better illness trajectory preventing poor health outcomes, building resilience in individuals who live in low-resource communities can help to overcome crises and work to strengthen endurance and positive adaption during chronic illness (Kim et al., 2018; Robinson et al., 2019).

Resilience in the setting of chronic illness is identified and can manifest as both positive or poor, and can affect coping abilities, adjustments, and health outcomes (Cal et al., 2015; Garcia-Dia et al., 2013; Kim et al., 2018; Kristjansdottir et al., 2018; Niitsu et al., 2017; Scoloveno, 2016). Extensive research explores the meaning of resilience (Bolton et al., 2016; Cal et al., 2015; Garcia-Dia et al., 2013; Kim et al., 2018; Niitsu et al., 2017; Scoloveno, 2016). In the midst of chronic illness and poverty, little is known about specific individual risk factors for developing lower resilient states that lead to poor health outcomes and protective resilient factors in the MDRRG population. Because the meaning of resilience changes based on the situation context, this research aims to create a new basis of knowledge in which to identify resilient protective factors associated with building and maintaining resilience, and to identify individuals with maladaptive coping techniques who are at the highest risk for lower resilience (Bolton et al., 2016; Cal et al., 2015; Garcia-Dia et al., 2013). Lastly, discovering the intricacies of the lived experience as it pertains to resilience is especially important for vulnerable residents to elucidate its meaning and application with in the community.

Understanding the MDRRG residents is important because a fundamental goal of nursing is to relieve patient suffering, foster well-being, and assist the individual's ability to overcome and move through adversity toward health promotion and wellness (Polk, 1997). Descriptive phenomenological view-points of those living in low-resource communities; particularly their perception of resilience and response factors related to chronic illness can inform nursing knowledge (Al Kalaldeh et al., 2018). Specific areas of phenomenological importance that pertain to chronic illness include the lifeworld, intentionality, temporality, spatiality, and social sense making (Dahlberg & Dahlberg, 2019). Possessing a greater insight into those lived experiences can provide valuable information on resilience factors in the setting of suffering with chronic illness for MDRRG residents that can shape future research studies (Garcia-Dia et al., 2013; Kim et al., 2018; Niitsu et al., 2017; Scoloveno, 2016; Van Wormer et al., 2011).

For this study, the definition of resilience is an artful skill of being able to negotiate, adapt to, survive and manage chaos, stress, or trauma related to the experience of the individual during the chronic illness in an effort to overcome pain and suffering (Hassani et al., 2017; Niitsu et al., 2017; Rezaei et al., 2018; Robinson et al., 2019). Further, resilience uses cognitive appraisal skills, problem-solving abilities, and attributes in order to grow and transform in a positive manner (Garcia-Dia et al., 2013; Scoloveno, 2016).

Protective resilient factors are defined as environmental and personality characteristics that are associated with positive outcomes (Bolton et al., 2016). Protective resilient factors include positive perceptions of self, spiritual and religiosity influences, acceptance of self and life, independence, internal locus of control, personal competence, structured style and sense of mastery, and a planned future or orientation as protective in earlier life stages (Bolton et al., 2016)

Poor resilient traits are defined as demonstrating a lower capacity to cope with the stress and challenges often associated with chronic illness (Cal et al., 2015). These include general psychosocial risk factors and poor self-health practices that encompass social isolation, personality characteristics such as decreased self-esteem and emotional self-regulation, and a persistent negative mood. Moreover, poor family dynamics and difficult social relationships, limits, or nonadherence to medical treatments or therapies, affective losses, and emotional burdens are also associated with poor resilient traits (Cal et al., 2015; CDC, 2020; Kim et al., 2019; Jackson et al., 2018; Niitsu et al., 2017; Scoloveno, 2016).

Purpose of the Study

Exploring the lived experiences of the MDRRG participants can clarify the meaning of resilience in chronic illness. By examining protective resilient and poor resilient traits this study can explain why some people are more resilient than others; aimed to promote the development of future interventions to build protective resilient factors in individuals suffering from chronic illness.

Materials & Methods

Study Design

The study was based on descriptive phenomenology adapted to a psychological perspective because it serves as the foundation of the life world experience of the individual. Husserl (2012), the father of descriptive phenomenology developed the philosophical transcendental reduction which aims for the complete purification of consciousness and has no relationship with anything empirical. According to Husserl (2012), without reduction, no claim that analysis is phenomenological can be made. The psychological phenomenological perspective does not achieve the purity of the philosophical transcendental reduction method. Psychological essences are typical, not universal (Giorgi et al., 2017).

Husserl (2012) claims that the individual's lifeworld is central to understanding lived experiences, and forms the ontological and epistemological foundation for those understandings. The intentionality of consciousness of the individual is directed to a meaningful experience of their life world. According to Husserl (2012), the intentionality of consciousness means to understand the something as something or being conscious of something, that mental phenomenon is directed toward outward objects (Giorgi, 2009), and that temporal experiences include dual intentionality of the self in the past, present, and/or future (Husserl, 1962).

For this study, particular aspects of the meaning of resilience were sought out including reactions to chronic illness and the process of adaptation using cognitive appraisal skills, problem-solving abilities, and attributes. Protective resilient factors and poor resilient traits were also sought out to help clarify meaning.

Setting

The research was conducted by one primary researcher via Zoom in a small medical clinic run by a humanitarian organization serving the community. Due to the Covid-19 pandemic, it was not possible for the researcher to travel to the geographical area where the study participants live.

Sample Size

Purposive sampling augmented with snowball sampling was used to recruit study participants who met inclusion criteria through a humanitarian organization serving the area. The inclusion criteria were: men and women between the ages of 18 and 80 with a chronic illness diagnosis; those of African American descent; and those who live in MDRRG. The sample size included 11 total participants, however, the researcher only gained relevant information applicable to this study's research question from eight participants.

Data Collection

Data collection was conducted using a semi-structured interview guide developed by the primary researcher enhanced by open-ended questions via Zoom technology for each participant for 45–60 min to provide rich insight into the participant's lifeworld (Stenfors et al., 2020). Demographic data was collected by the researcher after reviewing and obtaining consent. Questions focused on viewpoints and experiences related to chronic illness, perceived support systems, coping strategies, and reflection on the past, present, and future. Prompts were used to illicit information. The interviews were transcribed verbatim by the primary researcher or a bonded and insured transcriptionist using a standardized transcription protocol in order to transform the raw data into a description of the psychological structure of the experience (Giorgi et al., 2017).

Data Analysis

For this study purpose, the descriptive phenomenological psychological by reduction method (DPPRM) outlined by Giorgi et al. (2017) was chosen because that seeks to understand the subjects experience through a method of elucidation aimed toward explicating the meaning from the whole structure, developing a fuller meaning, and applying it in a general manner and structure toward usefulness (Giorgi et al., 2017). The DPPRM steps include transcribing and reading interview transcripts in order to grasp a basic sense of the whole situated description. Next, an attitude of scientific phenomenological reduction is essential to reach what Husserl (2012) refers to as reaching the epoche which entails a process of bracketing of past knowledge, theoretical or empirical works to reach the true essence of the phenomenon (Giorgi, 2009). By reaching epoche, the researcher focuses on parts of the transcription that identify, transform, and reveal psychological meaning units that highlight psychological lived meanings and intentionality (Giorgi, 2009), and serve as the basis of a psychological structure of the experience to make interconnections of patterns within the experience (Husserl, 1962). Throughout the process, verbatim transcripts of the narratives were reviewed several times to gain a sense of the parts of the whole structure to create meaning units, moments of a structure, eidetic structure, and finally essence of the lived experience in the setting of chronic illness and low-resourced communities. Once the moments structure is created, it is further delineated by reductions that included “eidetic” in which objects were reduced to their essence, and an “eidetic structure” in which the invariant meaning of a phenomenon lead to its essence (Giorgi, 2009).

Evaluation and Trustworthiness

Lincoln and Guba's (1985) framework of quality criteria of trustworthiness of inquiries created a stringent method for ensuring methodological rigor and included the aspects of credibility, dependability, confirmability, transferability, and authenticity. Reliability was achieved through continual analysis and devotion to reviewing the interview questions for clarity with an aim to obtain detailed, thick, and robust responses (Amankwaa, 2016). The researcher sent data from the reflective transcripts with personal notes and thoughts to the dissertation chair for review and analysis during the interview process, and throughout the analysis of the raw data to delineate it into psychological meaning units. Guidance was sought in order to transform the study participant's expressions into expressions that highlight psychological lived meanings and intentionality to render implicit factors explicit as outlined by Giorgi et al. (2017). Reflexivity was used to extend the confidence of the study results. The reflexive transcripts included the important subjects of the researchers own view of the conceptual lens, explicit and implicit assumptions, preconceptions, and values, and how these affected the research decisions during all phases of the study (Korstjens & Moser, 2018). Additionally, transferability was demonstrated by describing the context in which behavior and experiences took place in order to create meaning (Korstjens & Moser, 2018).

Ethics

The study was approved by the Endicott College Institutional Review Board (IRB) for the protection of human subjects (Approval no. 1709805-2). Ethical protection included procedures to maintain the study participant's anonymity and confidentiality through informed consent, and to ensure data protection, safety, and security. At the time of the interview, the researcher reviewed the purpose of the study, the informed consent document, and obtained verbal consent prior to proceeding with the interview.

Results

The study's completion was based on the study reaching data saturation when the interview data showed little change to the themes and subthemes that were emerging. A purposeful sample of eight was used to explore the lived experience and meaning of resilience in the setting of chronic illness. The age of the participants ranged from 33 to 64 years of age. Most of the participants were female. There was only one male included in the study sample. The interviews were conducted between April 2020 and May 2020 over Zoom. The demographic data describing the participants are depicted in Table 1.

Table 1.

Demographic Data (N = 8).

Age (years)	30–39	3
	40–49	4
	50–59	0
	60–69	1
Gender	Male	1
	Female	7
Marital status	Single	7
	Married	1
Chronic illness type	Age of diagnosis	Duration in years
Hypertension	59	5
Hypertension	29	4
Hypertension	25	14
Hypertension, hyperlipidemia, arthritis, obstructive sleep apnea	33 (hypertension)	14
Diabetes	25	14
Diabetes	39	3
Diabetes, hypertension, hyperlipidemia, asthma, obstructive sleep apnea	22	20
Migraine headaches	11	37
Social living arrangements	Alone	3
	Has a nonrelated roommate	4
	Lives with a spouse or significant other	0
	Lives with children	1
Education level	General Educational Development certification	4
	High school graduate	2
	Associates degree	1
	Some College	1
Work status	Part-time	3
	Full-time	3
	Unemployed	2

Table 1 depicts the study participants demographic data.

Eidetic Structure

As directed by Giorgi et al. (2017) method, analysis of the recordings and transcribed narratives provided by the study participants revealed the phenomenological psychological eidetic structure of the lived experience in the setting of chronic illness and low-resourced communities in six themes. Themes and subthemes are depicted in Table 2.

Table 2.

Themes and Subthemes of the Phenomenological Eidetic Structure.

Themes and Subthemes of the Phenomenological Psychological Eidetic Structure

Theme 1: Journey of living with chronic illness Subtheme: Lived experiences and personal struggles Theme 2: Adapting to illness Subtheme: Experiencing loss related to the illness, thankful it's not worse, self-reliance, and reliance on others Theme 3: Motivational factors Subtheme: Self-preservation, support network: to self and others, spirituality Theme 4: Fear of the illness Subtheme: Worry and anxiety, overcoming the fear Theme 5: Progression Subtheme: Looking into the past, encouragement to others: living by example Theme 6: Deep faith in God Subtheme: Drawing peace and comfort from God, asking for guidance and strength

Table 2 depicts the eidetic structure and main themes and subthemes of the study.

Eidetic Structure Themes

Theme 1: Journey of Living With Chronic Illness

One of the main themes was a journey of living with chronic illness and the subtheme was personal struggles to understand what the chronic illness meant to the individual. Thematic analysis and elucidation of the findings reveal that each study participant had their own unique journey with varied feelings and emotions which created the transformed meaning.

R explained the limitations sleep apnea, hypertension, and arthritis had on her life, which created a sense of dependence on others and a loss of independence. This in turn caused feelings of depression and hopelessness. When R felt that way, she was stuck in time and unable to look past the present day. R said:

Something's that I want to do with my children I can’t do because of my illness. Sometimes they want to take trips and with me having sleep apnea I can’t stay awake too long. I have to sleep on the machine. It prevents me from taking long trips. At times I want to do something, I can’t do it and I get to the point that I get so depressed that I don’t know what I want to do after that. In the past, I can get out and walk. Um, sometimes now I can’t even get out and walk. I’d be so depressed to get out and walk.

Transformed meaning: Lamenting on the hopelessness of lost independence due to feeling stuck in time with the illness.

R explained that at first she could barely function, knew something was terribly wrong, and that she needed help right away. Since her diagnosis, she experienced uncertainty if her medication would help. R said:

At the time of diagnosis with high blood pressure pretty much I couldn't really hold my head up. I was really tired. Blurred vision. Swimming in the head. So I had to hurry up and get to the doctor. That I didn't know what was going on. The medication that I’m on sometimes it works, sometimes it doesn't. They had to switch my medicine about four times.

Transformed meaning:urgency, fear of failed treatment, and uncertainty with hypertension.

Theme 2: Adapting to Illness

The second theme focused on the participant's perception of working through their struggles, which led to adaptation. Study participants revealed patterns of gains and losses through their struggles as they navigated through the chronic illness progression.

Self-Reliance

The self-reliance subtheme demonstrates perceptions and motivations based on the self to move forward in living with chronic illness.

BU explained that when he had a bad day, he wanted to avoid life and needed to force himself to get out of bed. He pushed himself to keep going. When he was first diagnosed with sleep apnea, he felt down, but he made up his mind to move forward with adjusting to his medical treatment plan. BU said:

Well, a bad day, you know how the mood swing, you don’t wanna [sic] get outta [sic] bed. You just always have to force yourself to get outta [sic] bed, and stuff like that. Just, I put in my mind, it gotta [sic] be done. Yeah. I mean, if you let it get you down … when I first got diagnosed with sleep apnea, it got me down cause [sic] basically it was hard for me to get adjusted to that machine and stuff.

Transformed meaning: determination toward adapting to the illness.

LO described her ability to do the things she wanted to do using appropriate resources. She felt empowered by learning about hypertension and how to advocate for herself. She attributed the feeling of empowerment to the knowledge gained from others. LO said:

I have a doctor here and in Grenada. I have a doctor on call if I want to talk to them and ask questions if I’m not feeling right. Yeah, being around other people, and the doctors helping me to learn myself. Yeah, and that's the best thing like trying to learn myself maybe. You know.

Transformed meaning: self-advocating and empowerment through partnerships and knowledge.

LO stated that she was compliant and convinced herself she would be fine as she kept moving forward. She stated that she picked herself up and did not look back. LO said:

Oh, geez take my medicine, and keep going. Just waking up. Yeah, I’d be fine sometimes. I’ll be fine sometimes. Just like everybody on here. I went [sic] go wash my face, brush my teeth, take a shower. Just go and go. Yeah, take my medicine and go.

Transformed meaning:self-reassurance with moving forward.

Reliance on Others

The study participant describes the significance of interactions with others for assistance LU stated that her children sensed a change in her and knew when something was wrong before LU was aware. The children knew what to do to help alleviate the situation. LU identified this factor as the main support during migraine attacks and felt a sense of relief. LU said:

When I first got migraines my oldest child know [sic] before I even figured it out that I had a migraine, and she knew what was wrong. When I was twitching I’d have to sit for a minute and see wavy lines. My kids are my main support. They can maintain me. They got a step that they got [sic] to do if I have a migraine to bring me home. They know if I have a particular episode what to do like putting cold on me or have nothing but complete darkness. After I have that darkness, they like lock me in and basically cold. It's like you sweat it off or freeze it off. It's complicated to go through it and understand.

Transformed meaning:assurance and relief that her children knew what to do.

Theme 3: Motivational Factors

Motivational factors were found to be significant in the process of traversing through adaptation to chronic illness. Concepts within this theme included the development of personal coping strategies and the notion of supporting oneself and others to feel important and valued.

Self-Preservation

Y stated she tried to use routines to help keep herself feeling like she had control over her life. Instituting schedules and routines empowered Y with a greater feeling of control over her surroundings. Y said:

I try to keep a schedule while I try a routine, you know, and I know it's a little hard because you never know day-to-day, but I try to keep a routine up. I try to keep things in order, you know about the routine to keep things going on track so that I can stay calm. That's what I figured.

Transformed meaning: routines and schedules help instill control over chaos.

Support Network: to Self and Others

BU stated that the joy he received working in a children's program and helping the children with their school work was a motivator to keep him going. Specifics included watching them thrive. BU stated that was part of what got him up every morning in order for him to feel as though he had a purpose in life. BU explained what his role meant to him in the children's program. BU said:

Uh pretty good, we just help the kids with they [sic] homework and stuff. Well, they [sic] doing pretty good. Well, you know, it's the joy of seeing them, these kids turn around, better they [sic] self, that [sic] what get me up every morning and come to help them with they [sic] work and stuff.

Transformed meaning: a sense of duty to others gives joy and purpose in life.

K described that having a positive attitude and helping others made her feel important and needed, and that gave her a sense of peace of mind. When K felt important, she maintained a positive attitude. K said:

I just have a positive attitude. Just doing my normal weekly or daily thing like helping other people. I like helping other people. I feel like sometimes that helps. Sometimes someone will call and then I give some good advice. Try anyway. That's all. Giving things to other people. It gives me a peace of mind.

Transformed meaning:a positive attitude is based on feeling important and needed, which gives peace of mind.

Theme 4: Fear of the Illness

Study findings revealed that participants experienced fear related to the chronic illness that induced worry and anxiety either at the onset of diagnosis or ongoing throughout the illness. However, they were able to overcome their fear to create coping mechanisms and strategies to help themselves.

Worry and Anxiety

Y stated always having had concerns and feeling uncertain about the future as well as what disease affects hypertension would have on her life, which heavily weighed on her mind. Further, Y constantly worried that when she did not take her medications or forgot to do so, negative consequences would occur. Y said:

If I don’t take my medication or if I leave it behind and I go on in the world, I’m constantly worrying while I’m at work. You know, if it gets so high, you know, you can pass out or you can have a stroke or heart attack. So it's mental wear and tear on the body.

Transformed meaning:constant worry, anxiety and uncertainty.

Overcoming the Fear

JW described how she initially felt afraid of being diagnosed with diabetes. The diagnosis was accompanied by uncertainty about the disease or what other people said about the disease, but after living with and managing it, the fear dissipated. By living with diabetes, JW realized she could maintain a fairly healthy life. This shared realization helped alleviate feelings of fear and uncertainty. JW said:

I felt nervous and disappointed because I was fearful I had something bad, but now I realize that as long as I take my medication, eat a healthy diet, and exercise I can live a normal and healthy life like other people.

Transformed meaning: fear and uncertainty turns into acceptance.

Theme 5: Progression

Study findings revealed themes of learning from past experiences that influenced present-day advice to others with similar chronic illness circumstances.

Looking Into the Past

Y conveyed wishing she had listened to doctors and made a more concerted effort toward remaining proactive in improving her health by changing her diet, exercise, and weight management. She had been compliant, lost weight, and did not need her antihypertensive medication in the past, and consequently felt disappointed at her current health status. Incidentally, Y described using (and regretted using) food as a coping mechanism in the past. Y said:

I think in my younger days, teenage days. I think as I have had children. I think those years have been pretty good. In my younger teenage years. I wish I would have taken care of myself more. I wish I would’ve been more active. I wish I would have paid attention to what the doctors were saying. I wish I had stayed on track with my weight, lose weight that way I wouldn’t be where I am now. Health wise.

Transformed meaning: lamenting on lost possibilities and disappointment.

LO shared the perspective that her learning journey had been different from others but still useful. Consequently, LO wished she had been healthier in the past insomuch as it might have made a difference for her current health. In short, she wished she could start over. LO said:

You always have a lesson to learn in life and everybody's may not be the same, and everybody may be different to handling deeper. Maybe if I would have known, watching what I eat and maybe, you know, I would again try to be healthy. Eat healthy food.

Transformed meaning:insight about healthy food options created a sense of regret.

Encouragement to Others: Living by Example

LU looked forward to not having migraines anymore and wanted others to learn their triggers. Throughout her own experience, she learned her triggers was something of a turning point for her and strove to remove herself from certain scenarios. LU said:

Until you go through the research about what you can do and can’t do, you don’t know. I hope and I pray I never have another migraine. If you have the same difficulty that I have you need to know what trigger [sic] you. Don’t wait till the last minute to get treatment.

Transformed meaning: advocate to learn triggers.

M stated she had specific coping mechanisms based on proven past methods that worked best for her when not feeling well with diabetes. Further, M learned additional personal strategies over time that were found effective such as exercise, which helped empower her with coping. M said:

Try to take medicine and try to find something else to take to help me feel a little better. Sometimes, it depend [sic] on what you eat. Either lower the sugar or sometime the sugar really drop, and the sugar down [sic] depending on what you eat rather. In school we try to walk. I take the kids and walk with them. That was my exercise for myself.

Transformed meaning:using knowledge about the chronic illness to help yourself.

M wanted others to be proactive for themselves and their health through research, self-management, and seeking out others for advice. Knowledge gave power and insight to M, and looking at the past she may have changed her strategies surrounding healthcare decisions. M said:

If they know their family has any type of chronic illness look it up. Try to find out what you can do to keep yourself from getting it. Try to be healthier, exercise, you know do what you gotta [sic] do. Talk to someone who can help. Go to a family member who may have it and see what do they do to cope with it or what they try to do.

Transformed meaning: learned strategies gave empowerment.

Theme 6: Deep Faith in God

A significant deep faith in God provided feelings of being grounded, strength, and focus to cope with the tribulations associated with chronic illness. Deep faith helped participants feel less stressed and worried. Moreover, peace and comfort were considered gifts given by God to the participants to increase endurance and perseverance.

Drawing Peace and Comfort From God

JW relied heavily on her faith in God who sustained her. As such, JW gave all her concerns and worries to God in order to portray a positive attitude so she did not feel stressed. Thinking of only her blessings and maintaining her medical compliance made her feel thankful. JW described herself as self-motivated by her faith in God, claiming that such support was all she needed. JW said:

I have good faith in God, I go to church. You know, what God do [sic], and all I need is just him and everything will be okay. So, it's … that's my biggest strength come from. And I have a good pastor and everything, so it's how I stay positive. I feel too blessed to be stressed, worry about something I have no control over.

Transformed meaning: giving God prayers and petitions formed a positive attitude toward life.

Asking for Guidance and Strength

M's level of faith in God helped to keep her grounded, giving her the ability to keep her mind focused on what needed to be done in the present, as well as the future while living with diabetes. Further, feeling grounded gave M a sense of inner strength which helped to maintain focus on health concerns. M said:

The good Lord above. You know you have to pray about things and ask for guidance. He's been very good to me. Every day. I always ask him to keep me strong. To keep my mind focused on what I’m trying to know, what goals I’m trying to see and to guide me in the right direction. Really, think in a way, you know I may stumble but let me still get back up, and do what it is I got to do and never lose faith.

Transformed meaning:feeling grounded and focused while drawing strength after prayer.

The Essence of the Lived Experience and Meaning of Resilience in the Setting of Chronic Illness and Low-Resource Communities

The six themes of the eidetic structure support that individuals had their own subjective chronic illness experiences described as journeys that were unique to them. These journeys included perceptions and meanings of the illness, formulated adaptation strategies, and motivational factors related to the illness. Fear of the illness was intermingled with aspects of uncertainty throughout the course of the illness. The stage of progression included the use of temporal insight into the past to look forward to the future to give advice to others who suffer from similar circumstances. A strong foundational faith in God served as a significant and powerful source of strength that provided endurance and perseverance. Figure 1 shows the essence of the experience.

Figure 1.

The essence of the lived experience and meaning of resilience in the setting of chronic illness and low-resourced communities.

Figure 1 depicts the essence of the lived experience of the study participants in the setting of chronic illness and low-resource communities

Discussion

Meaning of Illness

The purpose of this study was to understand the lived experience and meaning of resilience within the individuals lifeworld. One of the main themes of this study was the meaning of illness to the individual and the subsequent emotions experienced. Several studies have identified that illness-related stress and adversity, particularly in the setting of poverty can lead to maladaptation and poor health outcomes. Studies conducted by Connell et al. (2019), Jackson et al. (2018), Noonan et al. (2016), and Wang et al. (2017) assert that health disparities, racism, and economic hardships all contribute to deleterious effects on cognition and enhance emotional psychopathology in the Mississippi Delta. Understanding perceptions can help clarify the personal meaning of illness and its impact on the individual. Bolton et al. (2016) conducted a meta-synthesis of significant protective factors of resilience in older adults. Meaningfulness was one of nine distinct areas found to be pivotal in defining resilient protective factors. Husserl (2012) defines subjectivity as a type of being that presents itself from the individual's connected consciousness to the body and out into the world and important in understanding the meaning of chronic illness as it directly impacts the lifeworld of the individual. Participants in this study reported emotions including relief, bewilderment, disappointment, frustration, fear, and uncertainty related to their particular chronic illness. These emotions often occurred at the onset of diagnosis but also throughout the illness. Understanding the background and meaning of the illness can help nurses gain a lifeworld perspective of the individual.

Increased Risk for Low Resilience

Responses to chronic illness often result in feelings of loss related to uncertainty. Studies conducted by Cal et al. (2015) and Jackson et al. (2018) affirm that a sense of loss may increase risk factors that are related to decreased self-identity and self-empowerment that potentiate the vulnerability of the individual. This study's findings confirm that the theme, fear of the illness, and subtheme worry and anxiety mostly related to the uncertainty surrounding the chronic illness. Uncertainty-induced feelings of being overwhelmed, apprehensive, anxious, rumination, hopelessness, the inability to cope and move forward, and being doubtful of medical treatment success. Potential outcomes included an increased risk of developing long-term emotional and physical health complications. Early identification of low resilient risk factors is a critical component for nurses to recognize to plan and implement counteracting interventions aimed at promoting positive adaptation to chronic illness.

Antecedents to Resilience and Adaptation by Way of Knowledge

Concept analysis conducted by Garcia-Dia et al. (2013), Niitsu et al. (2017), and Scoloveno (2016), assert antecedents to resilience often present from the adversity that can originate from poverty, complications at birth, parental psychopathology, family dysfunction, and physical or psychological illness. Several phenomenological studies help clarify the process used in adaptation toward achieving resilience. Knowledge acquirement can strengthen aspects of the self at the beginning of chronic illness moving forward. Studies conducted by Hassani et al. (2017) and Kristjansdottir et al. (2018) reveal that seeking out knowledge helps the individual gain and maintain strength and empowerment. Bolton et al. (2016), Kristjansdottir et al. (2018), and Qiao et al. (2019) assert that knowledge is a critical aspect that impacts empowerment, growth, and self-efficacy abilities by giving the individual power and mastery to enhance self-efficacy traits. Qiao et al. (2019) revealed that when specific knowledge is gained through empowerment the individual can sense a feeling of victory over the disease. This sense of victory creates an acceptance of oneself and increases self-esteem which in turn gives the individual the desire to help others. This study findings confirmed that building foundations of knowledge used early in diagnosis elucidated the meaning of illness to the individual. The significance of this knowledge laid the groundwork for abating uncertainty and fear of the diagnosis. The theme motivational factors and the subtheme self-preservation revealed the process of adaptation to the chronic illness. It was demonstrated that after learning about the illness, personal coping strategies were formulated to offset stress associated chronic illness adversity. This study found that a strong knowledge base can enhance antecedents toward resilience and potentially impact overall health outcomes. Nurses are at the forefront of early and ongoing education throughout the course of chronic illness, and can help not only abate the fear and uncertainty of chronic illness, but also strengthen aspects of the self and consequently the community.

This study found that a strong knowledge base enhanced the participants’ ability to nurture components of the self. Study findings revealed that self-assurance and responsibility were often linked to partnering with healthcare workers and other support networks. Consequently, study participants were able to offer advice to others with similar chronic illnesses based on their personal experience which is significant in strengthening community bonds. Other meaningful interaction with others was enhanced by external support by way of receiving and giving. This was an exceptionally important aspect of one study participant's identity and self-worth by way of feeling important and needed when they helped themselves and others. Self-worth created meaning and purpose in their own lives, which in turn encouraged participants to invest in their own health and wellbeing for the benefit of others. In turn, participants were able to reciprocate advice while finding purpose and discernment. Nurses can be instrumental in building strong community bonds toward resilience promotion by exploring the meaning of self-worth of the individual within the community by way of external connections.

Coping Appraisal and Reflection

Coping appraisal was significant in this study. Lazarus and Folkman's, Stress and Coping Theory (1984) assert that coping appraisal functions as a protective factor, which allows the individual to mitigate the effects of psychological and social risk factors that can include adverse environmental conditions such as poverty (Garmezy, 1993; Rutter, 1990). Personalized coping strategies found in this study assert that participants created them throughout the process of adaptation derived from experiencing and learning about the chronic illness. Study findings revealed that perceptions were also significant in the formulation of coping living with chronic illness. The subtheme, overcoming the fear, explained the process of understanding the meaning of the illness that led to a new realization through a process of elucidation, and that at times the chronic illness was not as serious as originally thought. A significant finding in this study revealed that identifying chronic illness symptoms and learning triggers to avoid detriments to health impacted the quality of life. Elucidation processes toward gaining control and acceptance of situational circumstances are critically important for nurses to understand when planning and formulating chronic illness strategies such as education and interventions to counter-act poor resilient risk factors. By focusing on a realistic appraisal of chronic illness situations, nurses could focus the person away from despair, rumination, and the detriments of higher psychopathology rates as well as physical deterioration discussed in the literature.

Conclusion

The findings of this descriptive phenomenological study reveal that the lived experience of resilience in the setting of chronic disease and low-resource communities is a unique existential phenomenon for the study participants. The eidetic structure and essence revealed six themes and the essence of the experience. Elucidation of the meaning of chronic illness to the individual can help nurses understand the lifeworld to develop interventions for resilience promotion. Antecedents to resilience can be impacted by nurses working toward positive coping appraisal, adaptation, self-growth of the individual, and building strong community bonds.

Limitations

The sample focused only on African Americans in a small town within Tallahatchie County, Mississippi which impacts the generalizability of the study. One man was included in the sample size, indicating that more gender diversity is needed to gain male perspectives on the research topic. The interviews were conducted via Zoom technology due to the national pandemic. Perhaps in-person interviews would have allowed the researcher to gain more trust and obtain more data. Reasons for the small sample size include the limited availability of willing participants due to lack of access to the internet; some potential participants did not feel comfortable leaving their homes during the Covid-19 pandemic to travel to the local clinic to use the computer, and the research was performed by a white female who was interviewing participants of African descent.

Implications

Results of the study provided important implications related to the meaning of chronic illness to the individual, poor resilient risk factors, antecedents to resilience, and important areas to focus on for resilience promotion