Pushing Through: How Older Adult Caregivers Manage Wound Care

Study Design

Grounded theory methodology focuses on social problems over time that people adapt to, understanding social processes people use to manage situations and explaining how social circumstances account for behaviors and interactions. ²⁰ Using an iterative process of simultaneous data collection and data analysis, the aim of grounded theory research is to develop a theoretical framework that is based on empirical evidence and tailored to the specific needs of the target population.^21,22 For this study, constructivist grounded theory methodology was used to describe the process of managing a complex care procedure and to create a theory of the social phenomenon of being an older adult caregiver providing wound care. Performing wound care is considered a phenomenon shared by older adult caregivers within the social context of the home setting that occurs over time as the wound heals, thus grounded theory was chosen to satisfy the research purpose. The study method was guided by Charmaz’s methodical yet flexible procedures for obtaining and analyzing qualitative data to generate a theory grounded in the data. ²¹ The study was granted exempt approval with informed consent waived by the Indiana University Institutional Review Board, protocol number 1909985845.

Sample and Setting

Eligible participants were age 65 years or older at the time of being a caregiver, were currently or had previously provided wound care for a person aged 18 years or older, and spoke English fluently. Exclusion criteria were older adults with any formal healthcare training in providing direct clinical care, including wound care, or those who had cognitive challenges that would interfere with participating in an interview.

Recruitment

Participants were recruited using social media by posting a recruitment flyer on the principal investigator’s Facebook page. The flyer indicated that the principal investigator would like to interview informal caregivers ages 65 and older who were providing or had previously provided wound care to an adult care recipient. The flyer defined informal caregiver as someone without formal medical or healthcare training in wound care and included a phone number and email address to contact the investigator. Upon initiating contact, participants were interviewed for eligibility and, if eligible, invited to participate. A mutually agreeable time was established for an interview. Initial analysis revealed predominantly female caregivers. To increase recruitment of men, purposive sampling was conducted using a new Facebook post targeted toward recruitment of older adult male caregivers.

Data Collection

The first author (KS), a master’s-prepared registered nurse, conducted all interviews. Interviews were completed by telephone or a secure web-conferencing platform using a semi-structured interview guide. Interviews were conducted during the COVID-19 pandemic when in-person interviews were not permitted. Interviews began with general questions related to becoming a caregiver and transitioned to focused questions about the management of wound care and associated caregiver tasks. Interviews were audio-recorded and transcribed verbatim by a professional transcription service. Transcripts were compared to audio recordings of the interviews by the first author (KS) to confirm transcription accuracy.

Data Analysis

Data analysis was performed using a constant comparative method consistent with grounded theory methods described by Charmaz. ²¹ Data analysis for this study was performed by a team of three researchers (KS, JF, JvG). Throughout the process, the team met to review findings, reconcile interpretative differences, update coding, and refine coding categories. See Table 1 for an example of the coding procedure. One investigator (KS) reviewed the transcripts to validate the identified categories and the corresponding relationships between categories and kept notes to document thoughts and characteristics of the emerging codes and categories. To maintain credibility, the research team met to review and discuss data analysis. The team meetings and notes allowed the researchers to review the logical connections between codes, categories, and theoretical relationships to ensure the final product was supported by the participants’ data and reflected consensus among the entire research team.

OPEN IN VIEWER

Table 1.

Example of Coding Procedure.

Quote	Code	Process
It was easy because it was my mother and I wanted her to be well.	Finding it easy	Accepting the role
You’re a partner for life, so you just step in. He’d do the same for me.	Relying on strength of marriage
I have to say, I think I’m better than he is on wound care, because I bandaged a lot of knees back in the day.	Using experience with kids’ injuries
Quote	Code	Process
I had to learn some organizing skills and I did some more labeling that made sense to me.	Creating a labeling system	Creating a system
I mean, it made sense to the nurses, but it then came into my world, and I had to secure this one first, this one second, this one third, that sort of thing.	Developing own routine
You’d get all the washcloths, the towel, you’d get all the band-aids, get them out of their little bags and have them all laying there.	Opening all supplies before starting
Basically, like you do when you’re operating in an operation. You have everything laying there, so once you started it, you didn’t have to pause for a while. You just go from one thing to another.	Proceeding systematically

Overview of the Framework

Providing wound care for a care recipient was described by participants as going through a process that we labeled Pushing Through. This process consisted of five phases: (a) accepting the role, (a) lacking confidence, (c) creating a system, (d) trusting in self, and (e) owning the outcomes. Participants described a process of becoming an expert caregiver for their care recipient that began by first accepting the caregiving role. The decision to accept the role was grounded in abilities gained from past difficult experiences and/or the strength of their relationship with the care recipient. Participants expressed an initial lack of confidence characterized by fear arising from limited understanding about providing wound care. They described the importance of being able to access professional healthcare support for skill development and obtaining required supplies. As the wound care became familiar, participants described creating systems to organize and manage the required tasks. Over time, participants acknowledged that they were more trusting of their judgment and began modifying wound care procedures for best results based on their care recipient’s unique needs. Participants also made alterations to the household and changed life priorities to accommodate the complexities of their caregiving role. Eventually these caregivers saw themselves as experts for their care recipient and expressed pride in what they had accomplished. These phases are summarized in a framework, see Figure 1.

OPEN IN VIEWER

Figure 1.

Pushing Through, A Framework Describing How Older Adult Caregivers Manage Wound Care.

Depending on the nature of the wound and difficulty of care procedures, progression across the phases varied in length of time. Some wounds were anticipated, such as those that result from a planned surgical procedure. Participants who cared for planned wounds described an overall smooth and efficient transition through the phases. However, for those participants who were caring for an unexpected wound or one with unanticipated complications like infection or deterioration, the progress through each phase was more difficult and took longer. The remainder of the results section will discuss each phase in more detail.

Accepting the Role

Participants described a distinct process of coming to accept the caregiving role. Some participants accepted the challenge due to their existing relationship with their care recipient, such as being a spouse or adult child, while others described relying on prior caregiving or parenting experiences. Still others accepted the role by default in that there was no one else to provide care. Some participants stated they were unaware there was an option to refuse.

Participants spoke about the strength of the relationship with their care recipient as a reason for being able to take on the caregiving role. The participants described caring for someone as a component of their marriage vows or as an obligation to a parent in recognition of the parent’s care for them as a child. One participant stated, “I was the stronger of the two of us and I just assumed that I would be taking care of him. I mean, when you get married, isn’t that your job? Whatever happens, you do.”

Another factor in deciding to accept this role was the caregiver’s experience in caring for someone else. Participants identified their abilities whether it involved other complex care procedures or parenting experiences providing first aid. One participant stated, “You just got to, if you raised kids you can deal with that kind of stuff, you know? It’s just harder when you’re older that’s all.” Participants reflected on these situations as a source of strength to be able to take on new wound care responsibilities.

Some participants accepted the caregiving role out of default. Default was described as the inability to identify any other available caregivers. As one participant stated, “Well, I mean the other thing is there was nobody else. There’s nobody else that could do this for my family.” Still other participants accepted the role without knowing it was possible to refuse. One participant described this situation, stating, “I must’ve accepted it [the role]. I did not know I had a choice.”

Lacking Confidence

Once participants decided to accept the role of caregiver, they described feelings of uncertainty and a lack of confidence in their ability to perform wound care. Participants acknowledged their lack of formal training in this area and were unsure of their ability to perform the required procedures.

Participants described their lack of knowledge and skill, recognizing a need for information and training to perform this type of complex care procedure. Participants noted the inadequacy of wound care information from healthcare providers. One participant shared, “You know, nobody said a word to me about caring for it or anything like that.” A lack of knowledge about dealing with an unfamiliar care procedure contributed to participants’ feelings of incompetence and undermined confidence.

Participants were also afraid of making mistakes and performing wound care incorrectly causing subsequent harm, pain, or complications. One participant who had to pack a deep wound shared: “I was afraid I was going to hurt her . . . to just sit there and stuff that stuff inside a hole in your wife’s neck is pretty unnerving.”

Participants described the need for proper supplies to support their care recipient, adding to their feelings of uncertainty and lack of confidence. For some participants, wound care supplies were available directly from a healthcare provider, such as a primary care physician or surgeon. However, participants were not always connected to a healthcare provider in the beginning and supplies were a significant challenge. One participant described the issue of obtaining supplies stating,

I go wherever I can get things. I get rubber gloves from [name of store A], of course right now they don’t have any [due to the pandemic]. I go to [name of store B] to get gauze pads, which I use to wipe down her legs. And [name of store C], like these foam bandages, they had them. I don’t know where you go to get some of this stuff.

In addition, participants shared stories about getting and using the wrong supplies and running out of supplies. One participant described their experience of finally getting the correct supplies, stating, “All those months of everything being wrong and once we got on the right path it was like a piece of cake, you know. The right supplies, the right everything.” For fear of not having enough supplies, participants purchased supplies out of pocket through online merchants and at local pharmacies and stockpiled items as assurance of availability.

Creating a System

Participants created their own systems for managing care to sustain their efforts. The participants developed processes to engage with healthcare providers, systems to schedule the timing of wound care and other personal care tasks, and systems of various informal support persons.

Participants garnered support from healthcare professionals for learning the proper wound care procedure, accessing wound care supplies, and feedback on wound healing progress. The participants initially learned how to properly care for the wound by observing the actions of the healthcare providers prior to performing the wound care independently. One participant shared how they learned, stating, “I watched the hospice nurse the first time. Maybe the first couple of times, I’m not sure but I watched her while she did it and kind of learned from that.”

Connection with healthcare professionals created the avenue for accessing wound care supplies. One participant had the support of home hospice care, stating, “The hospice supplied all [dressings]. They gave me the [gauze] and the Q-tips and gloves and salves and everything I needed.” Participants also relied on healthcare professionals for reassurance that they were caring for the wound properly and that the wound was healing as expected. One participant sent photographs, stating, “Every once in a while, I might send [the provider] a picture and say, ‘What do you think of that’ and I’d tell her what I’m doing and she’d say, ‘Yeah, that sounds right. That sounds good’.”

Participants spoke of creating an organizational system, such as a chart, electronic spreadsheet, or written notes. As caregivers, they used these individualized tools to keep track of the timing of wound care tasks, medical appointments, supply orders, and other caregiving duties such as medication administration and personal care needs. One participant described their system, stating,

I made a chart, because in addition to caring for the wound and feeding her, I also had to give her medication several times a day through the feeding tube. So, I had a chart on what time I gave this and what time I gave that and what time I changed the bandages, what time I fed her, basically from the time I got up until the time I went to bed.

In addition to this overall organization, participants described creating a systematic approach to specific tasks, such as how to lay out supplies for the dressing change and how to perform the steps of wound care more proficiently.

Participants recognized the need for emotional support and practical help from family, friends, and volunteers. They created a social network of individuals that could be relied on for a variety of support, such as those who would help with household chores, meals, or provide spiritual care. One participant described their network stating, “The kids were bringing food over, helping me with that, which that wasn’t any big deal. But I had a good support system.”

The network of personal support also provided respite care, defined as planned or emergency care for the care recipient to relieve the primary caregiver on a short-term basis. ²³ One participant stated, “I’ve got a daughter that lives three blocks away, so she comes over and watches her and her girlfriend comes over and sits with her if I’m gone for a Saturday or something.” Participants relied on their network to provide respite care for running errands, personal healthcare appointments, exercise, or social activities.

Managing a network of personal support sometimes included refusing help or avoiding conversations. To maintain a system that worked for them, the participants shared how they would avoid or decline offers of support that they considered disruptive or unhelpful. One participant avoiding talking to family members whose advice did not align with the care recipient’s desire to remain in the home setting. That participant stated, “I couldn’t talk to my sisters because their answer is put him in an institution.” Participants were careful to exclude some persons from the hands-on tasks of wound care due to the invasive or unpleasant nature of caring for a wound. Participants also described a desire to protect some persons when the participant judged the offer of support would be burdensome and thus, sometimes avoided asking for help. For example, one participant stated, “I didn’t ask anybody for help because, I mean, I knew I had a complicated situation. I don’t know. I just didn’t ask for help.”

Trusting in Self

Once the participants created their system, they trusted their growing knowledge and skills to then modify care procedures independently. Through observation of the wound and feedback from healthcare providers, participants learned the signs of wound healing and trusted their own judgment to adjust care, such as altering the frequency of dressing change or modifying procedural steps. One participant who was managing a wound with a high volume of drainage shared a story of deciding to switch from gauze to an ostomy bag to control the drainage, stating, “I had these ostomy bags and put it on there and it did work.” In this phase the participants were able to modify the care procedures to best meet the care recipient’s unique needs.

Caregivers also trusted their growing knowledge of the care recipient’s needs to modify their household arrangements or routines to accommodate the caregiving tasks. In some situations, these modifications involved actual alterations to the home, for example, moving furniture to keep the care recipient on the first floor or remodeling to accommodate a wheelchair. One participant adjusted the home to provide the care recipient with a private bedroom with all necessary equipment easily accessible and implemented a communication system to facilitate the separate living spaces, explaining:

We have set up a doorbell system in his room. This bell has two buttons that you push. I put one behind his chair and one by his bed. So, either place he is he could just ring the bell and I can go. I live in the rest of the house.

Participants modified their priorities and personal interests, such as cancelling travel plans and avoiding social outings due to the demands of caregiving. For some participants, the caregiving demands were more complex and of longer duration, ultimately limiting priorities and interests indefinitely. One participant described this situation stating, “It has stopped my life . . . I have had to drop out of sorority, drop out of book club, drop out of church, drop out of—you name it, I don’t do it anymore.”

Owning the Outcomes

In the final phase of the process, the participants took ownership of what they had accomplished and the outcomes they had achieved. The participants described how they were the expert for their care recipient and were proud of their ability to contribute to the care recipient’s well-being.

Constant presence and attention made the participants the expert for their care recipient. Many participants spoke of how their intimate knowledge of the care recipient’s situation and unique needs made them a vital member of the healthcare team. For example, one participant described their interaction with a provider, stating,

When we would go in every week, he [the physician] would ask me, what do you think, or how did you do it or, or how’s it going type thing. And then sometimes even before he looked at it, he would say, “Well, what do you think? So, we had a good rapport.

The participants noted that healthcare providers came to value their assessment skills, decisions, and opinions as the care recipient’s expert caregiver which led participants to taking ownership for the care recipient’s progress.

As a result of becoming an expert for their care recipient, participants described feeling proud of having taken on the caregiver role and viewed themselves as responsible for the outcomes of their care. One participant shared this sentiment, stating, “When he was healed. . . Oh, gosh. That felt so good, I mean I was proud. You know, I felt like I had helped him through this, and maybe it wasn’t professionally done, but I felt pretty good about it.” The participants recognized that they made an impact and were central to the progress toward healing despite lacking professional healthcare education or training.