Donna Daniels1, Sue Wigdorski1, Neal Ricks1, Corinne Brion2, Davin Carr-Chellman2 Michael Kroth1
1University of Idaho (USA)
2University of Dayton (USA)
Abstract
This empirical study explores the learning of end of life caregivers (EOLCG). The research utilized the profound learning framework, and a grounded theory approach was taken to explore how learning occurs for EOLCGs and what the content of that learning is. Through data analysis of the theoretical codes, the following themes have been identified: Disposition Influence, Love and Care for Others, Relationships Matter, and Adaptability to Life’s Direction. These themes appear to play important roles in shaping the caregivers across their life experiences and in their role as caregivers. These themes contribute to profound learning theory building.
Keywords: profound learning, hospice, end of life care giving, end of life care learning
Profound learning (Carr-Chellman & Kroth, 2017) is a theoretical lens for considering lifelong learning from what might be considered a “deepening” lens. In this view, learners are considered to be intentional, agentic, values-imbued, volitional decision-makers who have the ability to choose to move their learning processes in ways that build substance and depth, or in ways that remain passive, superficial, and serendipitous. Within this framework, the choice and execution of meta-practices, practices, disciplines, and routines anchor the profound learner’s ability to organize and undertake learning activities in ways that compound their effect over extended periods of time, and a lifetime. In addition, profound learners take advantage of serendipitous learning experiences by intentionally optimizing their effect, incorporating the resulting insights, skills, and knowledge into existing or adapted ongoing practices. Over time, these transformational events will take their place within the larger learning context and strategic aims of the profound learner.
Profound learning is a theory-in-the-making. Two empirical studies have been completed to date. The first was an inquiry into teacher’s experiences of profound learning (Carr-Chelllman & Kroth, 2019). Here, profound learners were found: 1) to have depth of thought; 2) to be emotionally wise;
3) to take life seriously; 4) to be adventurous in thought and deed; 5) not constrained by age,
ideological perspectives, or level of education, thus transcending structural identity and therefore able to consider matters holistically; and 6) to be humble.
The second empirical study was an exploratory Delphi study which sought to find consensus among a number of thought leaders in the field of adult education. Among the findings were qualities of profound learning, categorized into themes, which included: 1) deeply reflective, 2) a deepening process, 3) consequential, 4) a change process, 5) progress toward a more authentic truth, and 6) integrative. Also found were qualities of profound learners, which included themes of: 1) looks beyond their own existing knowledge, 2) is a deep thinker, 3) pursues on-going growth over a lifetime, 4) is open-minded, 5) is engaged in the world around them, 6) pays attention, 7) explores, and 8) is mature in their approach to life. The grounded theory study discussed here is intended as another step in this theory-building process.
The end of life represents significant uncertainty for the individual who is near death, the family of the individual, and the caregivers (Axelsson et al., 2015; Berinato, 2020). Caregivers feel loss
152 and grief as they witness suffering and death, and provide care and comfort to the individual (Supiano
& Vaughn-Cole, 2011). These uncertainties and suffering prepare individuals involved in the end of life experiences for learning. Caregivers feel a need for discovering and making meaning in their
experiences and benefit from reflection (Ford, 2006). Meaning making in this case can result in shifts in personal identity (Supiano & Vaughn-Cole, 2011; Lindsay et al., 2012). A need for discussion among caregivers is useful as a means of reflection, evaluation and change of practice, and for emotional support (Ives-Baine et al., 2013). Running et al. (2008) speak of daily spiritual practices and grieving rituals as means to cope with the grief, process information, and increase job satisfaction for caregivers. White and Gilstrap (2016) add that hospice nurses identify a sense of calling - service beyond the scope of work - and an ability to face and adapt to uncertainties as important
characteristics for in-home caregivers.
The relationship between profound learning and end of life caregiving has not been investigated to date. This study is intended to extend the theoretical understanding of profound learning through the learning experiences of end of life caregivers.
Purpose of the Study and Research Questions
This exploratory, theory building study seeks to understand how profound learning occurs for end of life caregivers. The research questions for this study are:
● What constitutes profound learning?
● What actions/behaviors and practices generate profound learning?
● What is the formation process involved in becoming an EOLCG?
● What did end of life caregivers learn from their clients, from their own personal responses to their clients, and their client’s situations?
● How has their profession impacted their world-view and their self-conception?
Methodology
This study was intended to build a deeper theoretical understanding of profound learning, using grounded theory methodology. Following Charmaz’ (2014) Constructivist Grounded Theory approach, the researchers applied an inductive lens to emergent conceptual categories present in the data in order to generate meaningful characterizations of the phenomena. A more robust
understanding of profound learning, generally, as well as profound learning for EOLCGs more specifically, resulted.
Participants
Participants for this study came from a population of hospice volunteers in order to focus on those who choose to do this work and are motivated by a desire to provide hospice care without compensation. At this point in the study, data from the first interview has been collected from 13 participants, eight women and five men.
Volunteer coordinators were contacted at hospice centers and programs in an urban area in the northwest United States at both hospital hospice programs and independent hospice centers.
Initial phone contact was made to hospice program volunteer coordinators followed by an email detailing the study. Volunteers responding via email directly to the team were sent additional
information about the study either by email or through a phone conversation. None of the volunteers recruited were known to the team members prior to this research study.
Participants were chosen using a purposeful, convenience sample. All of the hospice volunteers who indicated an interest in the study, and agreed to be interviewed, were included in this study.
Data Collection
For our two-interview structure, we collapsed Seidman’s (2006) three interviews into two.
153 Interview one was intended to develop a thorough understanding of each participant’s biographical history and an initial understanding of the participant’s current lived experience with the topic.
Interview two is intended to develop a thorough understanding of each participant’s learning as caregivers while processing through other’s end of life experience. Interview two includes additional questions about the participant’s current lived experience, transitioning into the meaning of that experience. Interview two concludes by establishing closure with the participant. Interviews were conducted by an academic researcher and a doctoral student, following an apprenticeship model.
Initial interviews were conducted by the academic researchers and later interviews were conducted by the doctoral students. All interviews were 60 to 90 minutes in length, conducted over Zoom, and then transcribed.
In this paper, we report the findings of the first round of interviews with three participants.
These three interviews are part of a much larger study, as described above.
Data Analysis
Our data analysis process involved a team of six researchers, each of whom performed a full grounded theory analysis on one interview transcript in order to calibrate our analytical process.
Subsequent to that initial calibration, the remaining two interviews were analyzed by three researchers, respectively. Each researcher performed initial coding and focused coding, at which point the researchers met to compare results. At this meeting, the researchers collaboratively generated theoretical codes.
We performed three rounds of coding. Following the pattern described above and Charmaz’
approach, we conducted initial, focused, and theoretical coding. Initial coding is the process of defining what the data are about. Focused coding relates concepts/categories to each other. In theoretical coding, hypotheses (between and among categories, subcategories, their properties and dimensions) are integrated to build a theory or explanatory account of the studied phenomenon.
Findings
Current findings are preliminary based on the first interview with participants 6, 10, and 12.
Themes developed from analysis of the combined theoretical codes from the interview transcripts included Disposition Influence, Relationships Matter, Adaptability to Life’s Direction, and Love and Care for Others. These themes played important roles in shaping the caregivers across their life experiences and in their role as caregivers specifically.
Participants’ Dispositions
Dispositions are professional attitudes, values, and beliefs demonstrated through both verbal and non-verbal behaviors as people interact with family and community members, friends, or
colleagues. In this study, participants embodied various dispositions. These dispositions included being adaptable, jacks of all trades and doers, opportunist, and religious. When talking about his life’s journey, Participant 10 shared that he had moved a lot both within the United States and abroad due to his family needs or professional engagements with the military. Living in several milieus and having to acclimatize to numerous cultures made him adaptable. This same participant spoke about holding many jobs in different fields, making him a doer and a jack of all trades. Another interviewee shared being a doer and an opportunist. She explained: “If I just see something that needs to be done, I just do it.” When speaking about her life and her many successes in business, as an author, and as a pianist, participant 12 admitted: “I'm an opportunist, a real opportunist.” Another disposition that participants frequently mentioned was when they shared their upbringing stories. Participant 10, for example, shared that he went to church with his family and to bible college later. He exemplified his faith when he contended:
154 God has given every one of his believers, all of his children, a particular gift or multiple gifts, but one primary gift. Over the years, I think the gifts change a bit because of culture, because of education, because of whatever. But each Christian is part of the body of Christ.
During the interviews, participants personified several additional characteristics such as being life-long learners, solution focused, entrepreneurial, and reflective. In this study, the participants’
dispositions appear to have enhanced their capacity to be profound learners. Participants were
constantly learning and reflecting on themselves before and during their service with hospice patients, through robust relationships.
Relationships Matter
Participants discussed the value of their relationships as both givers and receivers of care.
Value was expressed in giving care through willingness to sacrifice in order to serve, “I drove 80 miles each way to go out there and play just because it was such a profound experience” (Participant 12).
Direct expression of value was also noted, “I kind of fell in love with the veterans group” (Participant 10). These expressions of value indicate a sense of personal investment in time, attention, or
emotion. These investments were given as a result of the inherent value found by the caregiver in these relationships.
Because relationships are reciprocal in nature, it is not surprising that participants also found strength and value as receivers in their relationships. Evidence of value found as a receiver was noted as participants expressed what it meant to receive mementos from the family of someone who the participant cared for, or their statements about the impossibility of an achievement without the support of another person.
Adaptability to Life’s Direction
Participants exhibited and discussed three primary characteristics or qualities related to adaptability to life’s direction: psychological and metaphysical self-awareness, awareness of and sensitivity to transitions. All three participants, participants 6, 10, and 12, exhibited deeply
experienced and well-articulated understandings of their own psychological and emotional status, make-up, and limitations. They had endured physical and emotional challenges, addressed them, and had internalized important lessons from these experiences, especially in relation to their work as caregivers. Even more, this adaptability carried over into their sense of their place in the universe, providing a broad perspective on life and death and the relationships of their choices and work in the context of larger metaphysical concerns.
All three participants spoke powerfully about their own life transitions, whether it be transitions from youth to adulthood, married to divorced, physical strength to physical limitations, and many others. Ultimately, the emphasis on transitions opened doors to a similar sensitivity to the transition from life to death. Interestingly, death was never discussed as an end, only ever as a transition, a passing from one thing into the next, a hurdle to one’s next important life phase.
Love and Care for Others
Participants displayed their love and care for others through various forms of action and in their service to others. Participant 6 spoke of usefulness to others and a commitment to drop
whatever she might be doing at the time to perform late night or weekend vigil work and to be truly present. She wanted to be present during the last few hours to be useful and present for the patient and the family.
Participant 10 became aware of a desire to care for others at a young age as he witnessed a disabled veteran on a public street asking for money and felt a deep need inside to offer help to the veteran. From that moment, he knew he wanted to help others. Later in life, throughout his wife’s many hospitalizations, he observed lonely family members late at night wandering the hospital floors.
155 He made it a point to intentionally greet other family members as he passed by them as a way to offer warmth and care. He indicated that he could feel and relate to their loneliness. He described himself as having a heart for people which led him to his hospice volunteer service.
Participant 12 found deep satisfaction through sharing her music with others and conveyed a sense of deep satisfaction she felt by relating to others as she saw the patients come alive through her music.
Conclusion and Implications
This study reports initial findings after the first round of interviews and provides data analysis of three interviews. Our preliminary findings contribute to the ongoing research efforts to develop a deeper understanding of profound learners, profound learning characterizations, and a more robust conceptualization of profound learning theory. Data analysis from the first round of interviews will continue to explore the preliminary themes. The second round of interviews is anticipated to occur over the coming months.
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