A Qualitative Study of Caregiving for Adolescents and Young Adults With Spinal Cord Injuries: Lessons From Lived Experiences

This research was part of a larger study to understand experiences of AYAs with SCIs and their caregivers in home and community life; study methods are detailed in a separate paper.26 We used narrative and phenomenological methods to observe lives as lived27,28 and to capture individual and collective voices, representing experiences and related perspectives.29–31 These approaches provide “thick descriptions”32 of individually situated circumstances with good ecological validity.

The study was conducted in two phases (Figure 1) from August 2015 to December 2016. The purpose of phase I was to elicit a range of individual experiences of home and community life after SCI among dyads of AYAs and their caregivers. The purpose of phase II was to focus on particular experiences, including caregiver dynamics, with greater detail.

Participants were recruited from two rehabilitation hospitals and several community organizations serving individuals with SCIs throughout Los Angeles County, California; identifying details are omitted for participant confidentiality. Based on deliberations of breadth and depth of experiential data and recommendations for what is practical within the scope of narrative and phenomenological studies,29,33–35 the target sample size was 8 to 10 AYAs and their caregivers for phase I and a subset of 4 to 6 AYAs and their caregivers for phase II. Purposive sampling was used to achieve variation among dyads in phase I,29,30 and key informants36 were invited to enroll in phase II.

Inclusion criteria for AYAs, based on self-report at time of enrollment, were to be 15 to 22 years old, have acquired SCI within the previous 5 years and participated in inpatient SCI rehabilitation, use a wheelchair as primary mode of mobility, live in Los Angeles County, and be fluent in English or Spanish. Individuals were excluded if they failed to meet these criteria and if they had medical comorbidities that affected daily experiences (eg, progressive illness, severe brain injury). Inclusion criteria for caregivers were to be identified by an AYA participant as a primary caregiver (physically, emotionally, and/or financially) and be fluent in English or Spanish.

Study approval was provided by the Institutional Review Board at the University of Southern California and at two hospitals, which served as sites for recruitment and data collection. Participation was voluntary and preceded by informed consent/assent.

Data were collected in individuals' homes, communities, and healthcare centers, depending on participant preferences. Phase I activities included an individual interview for each participant, followed by two group interviews, organized as collective narratives,37,38 for each of the AYA and caregiver cohorts. Participants in phase II completed additional individual interviews (2-4/AYA; 1-3/caregiver), and AYAs were observed participating in an activity of their choice. During AYA interviews in phase II, personal reflection was facilitated through construction of visual timelines of life experiences. All interviews were audio recorded and transcribed verbatim with pseudonyms for confidentiality. Observations were recorded from perspectives of the researchers in field notes.

Interview probes aimed to broadly elicit information about life as an AYA with an SCI or as a caregiver. Semi-structured interview guides were used for phase I with domains relating to personal demographics, injury characteristics, health service utilization, daily routines and self-management, caregiver interactions, coping and adaptation, sense of self or identity, and long-term goals. Data were iteratively analyzed to inform subsequent interview questions. In total, 21 interviews were completed in phase I (9 AYA, 8 caregiver, 4 group) and 20 in phase II (14 AYA, 6 caregiver), along with three activity observations. Individual interviews averaged 77 minutes in length; group interviews averaged 98 minutes.

Narrative, thematic, and categorical coding29,30 were completed in NVivo11 software. Data were analyzed within and across cases to identify themes to be tested against new data and discussed in subsequent interviews.39 A preliminary codebook was developed, including participants' own words or descriptions as codes; codes were then modified or updated with ongoing analysis.40 Reflexive practices were applied to expose sources of potential bias throughout the research.41,42 Rigor was also enhanced through triangulation from angles of data (individual and group interviews, observations, visual timelines), investigator (co-coding and team interpretation), and theory.43,44 

Seventeen individuals were enrolled (9 AYAs and 8 of their caregivers); see Table 1 for a description of the cohort. Although not criteria for inclusion, all caregivers were considered informal, primary caregivers and had relationships with the AYAs, which predated the onset of SCI. Findings captured the meaning of “caregiver” from the perspectives of AYAs and their informal caregivers and reflections on the organization of care in day-to-day life. The majority of data and associated analyses are specific to informal care, but AYAs in the study also spoke more broadly about experiences with all types of caregivers (eg, formal, informal; primary, secondary). Data referring to a particular person or type of caregiver are specified in the paper.

The question of who caregivers are, and what the term means personally, was presented to AYAs. Largely, their responses reflected literal interpretations of the word, such as “someone who cares” or “who makes sure you have what you need.” However, there were also negative connotations with having a caregiver. Some participants described ways the term “caregiver” felt demeaning:

Some AYAs described other ways they referred to the individuals who provided them with assistance. The majority of alternative expressions for their caregivers reflected established relationships (eg, “girlfriend,” “fellas,” or “mom”). Use of these terms was likely based on longstanding relationships, but some AYAs also alluded to a more intentional reason for use of alternative terminology:

Referring to informal caregivers by other names (eg, as friends, parents) allowed AYAs to normalize these close connections to others involved in daily life. The terms also aligned more closely with ideas of autonomy in adolescence and young adulthood.

Participants expressed that experiences were different from what was normal or expected for the time of life they were in and the dynamics of their existing relationships. Informal caregivers took on roles and responsibilities that expanded on preinjury relationships and required new or unfamiliar practices, such as mothers performing intermittent bladder catheterizations with adult sons and romantic partners having to encourage AYAs' participation in self-management. Tensions between familiar relationships and these new interactions made it difficult to express specific meanings of caregiving, especially for caregivers who were informal and previously known to AYAs.

Unlike AYAs, the informal caregivers did not report negative responses to being called a caregiver, but some participants indicated ways in which the term “caregiver” may be too narrow to capture who they are or what they do. The caregivers referred to themselves in different ways. For example, one participant talked about her many roles as “hats” she wears – sometimes simultaneously and other times, in succession: “I am a mother,” a “care provider,” and an “advocate.” She felt each of these roles was accompanied by unique demands of time, attention, and emotions. Depending on circumstances, the informal caregiver would figuratively don a different hat to channel a desired demeanor or action. When bathing her son, she said she was a care provider, using the term to distance herself from the awkwardness of seeing her adult son naked. When encouraging him to move into his own apartment, she was his mother, focused on long-term developmental milestones. When he acquired a pressure injury, she was his advocate for health services and his own self-management. This caregiver articulated that these roles overlapped, and their demands sometimes conflicted with one another.

Across dyads, caregiving was defined through individual relationships and responsibilities. Informal caregiving in everyday life included a breadth of practices related to practical needs and emotional support. Practical, task-specific care included assistance for activities of daily living, home management, and transportation to medical appointments. Furthermore, responsibilities included care coordination and health management. Caregivers were involved in scheduling appointments, organizing payment or reimbursement of services, and accessing resources.

Similarly, many of the participants described caregiving practices to promote, or extend, outcomes of rehabilitation and health care and aspects of health, such as diet and physical activity. Many facilitated exercises at home and focused on avoidance of secondary conditions. For example, one informal caregiver took it upon herself to minimize risks of a pressure injury for her spouse. She proudly shared: “He hasn't gotten one [pressure injury] yet, but that's because I'm just on it… I am a research freak. Like, I will search up everything....”

Alongside practical assistance, caregivers discussed ways they provided emotional support and facilitated mentor connections to enhance AYAs' moods, aid coping or adaptation to disability, and encourage participation in self-management and other life activities. One caregiver explained how she played a role in helping her son let go of his anger after SCI: “I'm not going to be here all his life.” Then, shifting to speak as if her son was in the room, she said, “Whatever happened to you, son, we forgive the gun man, and we're going to move on. Because being angry at the gun man is not going to allow you to grow with your life.” Caregivers took this emotional work quite seriously. As one participant stated, “They need us to say the right things.”

An underlying factor affecting the practices of these informal caregivers was perceived short- and long-term implications of providing care. One caregiver reflected on ways her daughter made functional gains with less assistance at home. In a group interview, this caregiver advocated for others to consider carefully how they could “little by little” provide opportunities for AYAs to practice more independence and facilitate growth. Overall, caregivers appeared to recognize a connection between the practical and emotional support they provided and the AYAs' psychosocial development, including their sense of identity and activation toward future goals.

Given all that is involved in caregiving, AYAs described many factors they considered and strategies for managing a range of practical, emotional, and developmental needs. Some AYAs had networks of providers – formal and informal – to support the complexity and intensity of day-to-day care. The exact delineation of roles and responsibilities was seemingly impractical in the changing landscapes of daily life, but caregiver networks appeared as self-initiated strategies for managing and ensuring access to care. For example, one AYA identified his mother as his “primary” caregiver. She was involved in almost every aspect of his life, but they did not live together. Depending on the time, setting, and activities, different family members, friends, and professionals accompanied or helped him. Care needs were assigned based on preferences, availability, and abilities.

In one group interview, AYAs engaged in a prolonged discussion of desired caregiver characteristics. Commonly, AYAs wanted caregivers who responded to basic needs, were willing and able to provide transportation to social activities and medical appointments, were invested in their well-being, and did not view caregiving as a nuisance or burden. They described subtle ways they knew whether caregivers actually cared. It is a “vibe” you “just get,” said one AYA, and another responded, “You can just tell… sometimes you'll ask someone to do something for you, and they'll sigh, or they'll give you attitude.” Several other AYAs resonated with this idea; it seemed as though caregivers were always being tested – sometimes even intentionally. One AYA shared, “I would try and give them a heads-up and see their reaction…. Like a test or something.”

Additionally, AYAs discussed physical characteristics, primarily strength, as a valued asset of those who provided care. Caregivers needed to be able to assist with transfers and other activities with ease. Moreover, AYAs wanted caregivers to have “the knowledge of what it takes to basically keep someone alive and happy.” Caregivers were more trusted when they knew about the array of conditions associated with SCIs, such as autonomic dysreflexia, urinary tract infections, and pressure injuries. Furthermore, some AYAs wanted caregivers to really know them personally and to anticipate needs based on knowledge of their functional capabilities and preferences.

The AYAs also looked for a good match of personalities, stating, “Obviously you've got to get along with them. You have to have something in common, and/or just enough to get through the day without being miserable.” Some said that age played a role; it helped caregivers “understand where you're coming from.” A college-age AYA said, “Having another college kid around is easier, and I prefer it more just because it's more of a college life than being here, knowing you need help.” Moreover, some AYAs felt it would be too contentious to work with certain people as caregivers, like when they thought the reliance or intimacy would damage existing relationships.

These considerations were salient in choosing among potential formal and informal caregiving arrangements. For example, one AYA chose his girlfriend, rather than his parents, to be his primary caregiver. He lived with his parents, and they were willing to be his care providers, but he thought their age, the history of their relationship, and the intimacy of activities for which he needed assistance made his parents less desirable providers. Instead, he asked his girlfriend to participate in caregiver training at the hospital and to come to his house each day to assist with his bowel program, bathing, and other activities.

By contrast, the informal caregivers who participated in the study gave little indication of “choice” or preference and felt entirely responsible for care. They described ways they came to be caregivers more pragmatically; their involvement was either necessary or a “natural” decision. One caregiver, the mother of an AYA, said, “We're parents. That's what you do.” Another caregiver, in a committed relationship with the person for whom she provides care, said, “I'm the only one.” She went on to explain circumstances that prohibited family members from providing care, including incarceration, advanced age, and untrustworthiness. She said, “I'm literally the only person.”

On the whole, despite allusion to “deciding” on caregivers or requesting help for specific tasks from specific people, narratives primarily indicated that absolute choice of caregivers was rarely available. Caregivers were typically informal and based on kin communities at the time of injury. Even in cases when AYAs hired professional or formal caregivers, choices for caregivers were limited by financial constraints and availability of trained, trustworthy providers.

The intent of this research was to improve our understanding of caregiving in day-to-day life for AYAs with SCIs from viewpoints of those with first-hand experiences. Our previous research26 indicated that eliciting multiple perspectives on caregiving can illuminate unique aspects of care, reveal ways vulnerability and fatigue are linked to emotional support, and bring us closer to how experiences are felt and negotiated in everyday life. This paper adds to these findings by illustrating the complexity of informal caregiving practices, including emotional work, that cannot be disentangled from developmental goals and needs and may involve a network of people with different roles and relationships to the AYAs. This research also foregrounds the essential, elevated role of informal caregivers with relationships that predated onset of SCI; these caregivers faced threats to their own health and independence.

Across literature, the terminology for caregivers varies widely, with commonly used alternatives such as “family caregiver,” “personal care attendant,” and “careprovider,”eachwithdifferentconnotations.2,45–47 Findings here reveal a multitude of ways in which AYAs name or make reference to their informal caregivers. Participants described how the term “caregiver” is perceived as inadequate and in some cases undesirable, such as when having a caregiver can elicit associations of being a “baby” or “old.” This may be especially troublesome for AYAs striving for a greater sense of independence, accomplishment, and social acceptance. In these ways, ideas of caregiving could not be differentiated from psychosocial development. Additionally, informal caregiving roles and practices could not be wholly distinguished from relationships that existed prior to SCI. Caregivers were still “mothers” and “girlfriends,” even when involved in new, more intimate, and demanding needs related to the effects of SCI. Needs for practical and emotional support changed, and this caused tension or strain across dyads.

The AYAs in this study readily and independently identified individuals who served as “primary” caregivers, yet this designation typically denoted the individual who provided the bulk of their emotional support, rather than the individual who addressed the majority of their instrumental needs. In some cases, broad networks of people were involved in providing day-to-day care, but parents or romantic partners were always identified as having the most prominent, or primary, roles. This underlines the reliance of AYAs on their loved ones and may suggest that emotional support is more central to “caregiving” than instrumental support. Still, AYAs expressed desires for characteristics of caregivers, and to the extent possible they delegated specific tasks to specific people in accordance with their needs and desires for privacy, autonomy, and support.

Remarkably, while AYAs appeared to carefully evaluate caregivers for what characteristics best suited their personalities and needs, the primary caregivers largely accepted circumstances in which they could be asked to perform many different aspects of care: “It's just what you do.” Participant narratives indicated a sense of having little “choice” in becoming a caregiver to their loved one or in deciding what they would be responsible for doing – perhaps as a result of established relationships and perceived limitations in available systems for support.

This discussion of caregiving highlights the complexity of caregiving practices and points toward the limitations of the current terminology and semantics. Although we have adopted the term “informal caregiving” and used it consistently with current definitions, we recognize that the term itself belies the intricacies, nuances, and depth of involvement of this kind of work.

Due to the importance of caregiving, caregiver well-being has become a national concern of public health,48 and there are several implications to be made for future research and rehabilitative care. Informal caregivers report elevated psychological burden and distress and have disproportional rates of morbidity and mortality compared to the general population.3,5,49–55 It should be considered whether contrasting perspectives about the organization of care and elements of “choice” or “fit” contribute to tensions in AYA–caregiver relationships and should be evaluated further. Given the inherent intimacy and demands of caregiving, caregiver fit may contribute to perceived stress or burden and affect long-term outcomes for individuals receiving and providing care, particularly in light of known associations among caregiver dynamics and health-related quality of life.5 This may be especially true for informal caregivers, who appear to have less autonomy in choosing their caregiving role and responsibilities.

For AYAs, who are in a critical and complicated period of psychosocial development, frequent assessment of caregiver fit may also be warranted because caregivers affect opportunities for AYAs to exercise autonomy and feel supported in preferred or necessary ways. Encouraging cultivation of caregiver networks rather than the reliance on one person may be important for supporting AYAs' transitions to adult health care and productive roles. Additionally, caregivers may benefit from more training and support related to AYA development and ways in which everyday care may influence long-term outcomes.

As a qualitative study, generalizability of results was not the intent or an appropriate measure of value. Findings of this study are specific to the lived experiences of AYAs with SCIs and their informal caregivers, and they should only be applied to other populations by standards of specificity. Relative to the scope of phenomenological research, the duration of participant observation and overall engagement in this study was limited due to feasibility considerations. Further research to capture more heterogeneity in caregiver dyads and practices, including formal caregivers, over a longitudinal period is warranted.

Individual responsibilities of caregiving, as well as associated influences on caregiver health, well-being, and other long-term outcomes, have not received attention in the health care system that is concomitant with their importance.2,3,56 This study revealed notable variation in individual meanings and practices of informal caregiving, which are driven by dynamic practical and emotional needs that are linked to development and rooted in personal beliefs and interpersonal relationships. Ultimately, AYAs with SCIs may be unique from younger and older peers in ways they desire autonomy and work to cultivate caregiver relationships to meet practical and emotional needs while trying to advance more independent social roles and identities.

Given the complexity and intensity of activities involved in caregiving, networks of caregivers may be best suited to manage day-to-day responsibilities, but availability of trustworthy and invested providers is a persistent challenge. Assessment of caregiver networks and opportunities for choice should be examined to reduce strain and improve well-being among individuals providing and receiving care, especially AYAs and their primary, informal caregivers.

Dr. Haywood reports grants from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), Patient-Centered Outcomes Research Institute (PCORI), California Foundation for Occupational Therapy, and the Society for the Study of Occupation during the conduct of the study. The other authors report no conflicts of interest.