Identifying Required Skills to Enhance Family Caregiver Competency in Caring for Individuals With Spinal Cord Injury Living in the Community

Abstract

Background: Due to the earlier discharge of individuals with spinal cord injury (SCI), family caregivers are often left with limited time for learning caregiving skills, and they usually feel unprepared to undertake the caregiver role. Objective: Considering the key role of family caregivers in maintaining the overall health and well-being of the individual with SCI, the objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI living in the community. Methods: A qualitative descriptive approach was used with semi-structured interviews. Thematic analysis was used to determine key themes arising from the experiences of individuals with SCI (n= 19) and their family members (n = 15). Results: Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. These include monitoring and managing physical health and secondary health conditions, providing for psychosocial needs, decision making, time management, being flexible, and navigating the health and social services system. Conclusion: The current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. These findings should further alert health care professionals that assessment of caregiving skills at regular intervals is necessary to help caregivers achieve mastery in situations where they are facing caregiving difficulties. Future programs need to be designed to include the skills that family caregivers need and use in real-life caregiving situations.

The trend of decreasing length of stay in rehabilitation centers has resulted in individuals with spinal cord injury (SCI) entering the community with limited time for adjustment to the physical and psychological changes postinjury. They also have less time to obtain skills and knowledge to enhance their self-care abilities to be as independent as possible.¹ Therefore, individuals with SCI commonly require assistance with a range of services from family members that were previously provided by formal health care professionals.² For example, family caregivers may need to carry out intricate medical tasks,³ organize/coordinate care tasks,⁴ and provide emotional support, direct care (eg, wound care, transferring),⁵ and advocacy.⁶ Such care entails a level of knowledge and skills unaccustomed amongst lay individuals.⁷ Typically, when caregiving skills are mentioned, they are defined as skills specific to physical activities, tasks, or procedures (eg, bowel and bladder management, meal preparation, wound care). However, caregiving skills also include psychomotor, cognitive, or psychological skills.⁴ Given and colleagues⁸ also identified the ability to communicate effectively with health care professionals as one of the most important caregiving skills. For example, family caregivers who are more competent in “working the system” are more likely to have their own and their injured relatives' needs met. Therefore, it is imperative to look beyond basic caregiver tasks and consider the complexity of caregiving skills required to provide support to individuals with SCI.

Indeed, the lack of necessary caregiving skills can be a key barrier to undertaking and sustaining the caregiving role.⁶ For example, not having necessary caregiving skills may lead to several challenges and consequences for the individual with SCI, such as worsening of a secondary health condition, increase in care recipient anxiety, and frequent visits to the emergency department.⁶ In addition, studies have demonstrated that caregivers of people with SCI also experience caregiver burden due to the lack of knowledge and resources, particularly skills training/development.⁹ This makes it even more critical to understand skills that are important to effective caregiving.

The aforementioned research indicates that a skill-building approach, in addition to the traditional information-only approach, is necessary for family members to provide sustained care to individuals with an SCI. However, little information is available about the caregiving skills that family caregivers of individuals with SCI require to provide care, nor do we understand how a lack of these skills may influence the care recipient's health or trajectory in the health system. Also, the focus of rehabilitation services is directed toward self-management for the individuals with SCI; limited attention has been given to identifying the skill needs of family caregivers to provide care to individuals with SCI after discharge. Given that family caregivers play a key role in maintaining the overall health and well-being of the care recipient with SCI, understanding the range of skills needed to undertake caregiving responsibilities can help identify possible strategies to assist family members to enhance their competency and perceived self-efficacy in caregiving. The objective of this study was to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI from the perspective of individuals with SCI and their family caregivers.

Methods

Design

A qualitative descriptive approach was utilized^10,11 with the intent of understanding family caregiving skills in the “real world.” A qualitative approach can produce more exploratory information,¹² particularly about how caregiving challenges and lessons learned translate into needed skills. Furthermore, the little that is known about caregiving knowledge and skills has typically been derived from studies of other disease populations (eg, Alzheimer's disease¹³), which may fail to capture crucial information that is specific to SCI caregivers.¹² Therefore, a qualitative approach is the most appropriate research method to gather in-depth information about the lived experiences of the caregivers and care recipients within their “natural context.”¹⁴

This descriptive qualitative study used data obtained in a larger study exploring the support needs of family caregivers of individuals with SCI. A brief overview of the methods is provided below; detailed procedures for the study are described elsewhere.⁶

Participants and recruitment

Community-based individuals with SCI and their family caregivers were recruited from across Canada through (a) a letter of invitation, (b) an online advertisement, and (c) referral by health care professionals in the outpatient rehabilitation clinic setting. Purposive sampling by time since discharge was used in the selection and recruitment of participants. Taking into account the learning curve that occurs within the first 2 years and the evolving needs of individuals with SCI over time, individuals who were at least 3 months to up to 2 years post discharge and over 10 years post discharge from inpatient rehabilitation were purposely recruited. Within the first 2 years post discharge, there is an initial learning curve for caregivers as they figure out how to provide care to the individuals with SCI in a limited time. Also during this period, both explicit and implicit needs arise from both the individuals with SCI and the family caregivers,¹⁵ which results in a higher incidence of separations and divorces.¹⁶ Contrarily, the comorbidities associated with aging and the cumulative effects of secondary health conditions related to SCI are more evident at 10 years post discharge,¹⁷ which results in evolving supportive care needs for individuals with SCI and family caregivers over time. Individuals with SCI were eligible to participate if they (1) were at least 18 years of age, (2) were 3 to 24 months post discharge or over 10 years post discharge from inpatient rehabilitation, (3) had an SCI of either traumatic or nontraumatic etiology, and (4) were fluent in English. Caregivers were recruited through the individuals with SCI and were identified as his/her primary caregiver. Family caregivers were eligible if they (1) were a spouse or parent of an individual with SCI, (2) described themselves as providing physical and/or psychological support to the individual with SCI, (3) had regular contact with the individual with SCI (ie, face-to-face at least weekly), and (4) were fluent in English. Participants were recruited between August 2016 and April 2017. Recruitment ceased when the study reached the point of data saturation, whereby consecutive interviews did not yield new responses or thematic areas.¹⁸

Data collection and analysis

Data collection included separate semi-structured interviews through telephone or face-to-face interaction with caregivers and care recipients (see the box “Examples of Open-Ended Questions From Interview Guides for SCI Family Caregiving Skills” for select open-ended questions). All interviews were audiotaped, transcribed verbatim, and reviewed for accuracy by the primary author.

The inductive thematic analysis procedures of open and axial coding and extensive memo writing constituted the basic analytic techniques.¹⁹ Qualitative software, NVivo 10,²⁰ was used to facilitate the organization and analysis of the data. Participants' direct verbalizations of current and learned goal-directed behaviors used in caring for an individual with SCI, as well as the skills needed based on inferences that the authors made regarding the behaviors that might enhance a caregiving process, constituted the units of analysis (ie, making inferences based on participants' experiences that may enhance caregiving competency). Beginning with open coding, a subset of the transcripts was originally coded by the primary author, and excerpts of the transcripts that described characteristics of family caregiving skill were highlighted. For example, using the analytic procedures described by Schumacher and colleagues⁴ as a guideline, caregivers' accounts of how they managed specific health conditions (eg, pressure injuries, autonomic dysreflexia, depression), procedures (eg, intermittent catheterization, digital stimulation, administration of medication),⁴ and barriers to caregiving (eg, disruptive care recipient behavior, role conflict) were initially examined. This approach enabled the identification of diverse skills used in caregiving, identification of areas of challenges,⁴ and examination of overlapping and contrasting data between care recipients and caregivers. The identified skills were then grouped into broader categories that signify varying SCI family caregiving processes using the following criteria: similarities/differences, thematic overlaps, and redundancy of data. Two other researchers then independently coded the same subset of interviews and discussed the coding framework to refine existing categories. This ensured rigor and enhanced reflexivity. To increase trustworthiness and credibility, four members of the research team participated in ongoing peer debriefing sessions to discuss the analysis, interpretation of data, and development/consensus of theme labels.

Examples of Open-Ended Questions From Interview Guides for SCI Family Caregiving Skills

1. Caregiver: What are some skills you currently use or have developed over time in assisting your family member (can you please provide some examples)?

2. Caregiver: Considering the skills you have to care for your family member, what are some consequences or challenges you are facing by not necessarily having all of the appropriate skills?

3. Care recipient: What are some skills you feel your family member would benefit from learning to be able to provide better care for you?

4. Care recipient: Was there any incident where your family member felt a certain caregiving task was difficult to do? Why?

Results

Description of participants

A total of 34 interviews were conducted with 19 individuals with SCI and 15 family caregivers. From the 34 participants, 26 individuals were in dyads (13 caregiver–care recipient dyads), and 2 caregivers and 6 care recipients were also interviewed. Demographic characteristics are described in Table 1. Approximately 79% of the caregivers had been providing care for more than 10 years, while the remaining caregivers had only been in the role for 6 months to 2 years.

Table 1.

Characteristics of participants in the study

Characteristics	n (%)
Individuals with SCI (n = 19)
Sex
Male	13 (68)
Female	6 (32)
Time since discharge from inpatient rehabilitation, years
< 2 years postdischarge	4 (21)
>10 years postdischarge	15 (79)
Level of injury
Paraplegia	11 (58)
Tetraplegia	8 (42)
Age, range in years	22–65
Family caregivers (n = 15)
Sex
Male	3 (20)
Female	12 (80)
Employment status
Employed	8 (53)
Unemployed/retired	7 (47)
Relationship to individual with SCI
Spouse/partner	8 (53)
Parent	7 (47)
Age, range in years	41–82

SCI family caregiving skills

Twenty-nine SCI family caregiving skills were identified and grouped into six caregiving processes defined as dimensions of the SCI caregiving role that require a course of action. During analysis, it became evident that some caregivers were “more competent” in providing care. For example, more competent caregivers were often aware and sensitive to the care recipients' needs and complexity of the injury, which translated into behaviors that enhanced care recipient outcomes. “Less competent” caregivers had limited knowledge and insights about the caregiving process, which translated to making decisions that increased the risk for harm of care recipients. These distinguishing characteristics and behaviors are mentioned in the narratives throughout the next section. Selected skills for each caregiving process are illustrated with representative quotes (see Table 2 for the full list).

Table 2.

SCI family caregiving processes, skills, and representative quotations

Caregiving processes	Caregiving skills	Representative quotations
Monitoring and managing physical health and secondary health conditions	Seeking explanations for unknown signs and symptoms	CG: “…he said, I got rub burn from my sweater. I said, what do you mean? And I looked at it and I thought, I don't know if that's rub burn. And then we went in the condo and on the stove I could see a light there. And I was like, [CR], did you make soup? He said, yeah. Okay, that's what happened today. Because he's a quad, he might have feeling here but not here. So, I guess in that spot it didn't bother him to have his elbow on the stove.”
	Paying attention to detail/subtle physical changes	CG: “So, I check anyway [for signs of pressure injuries], if there are any red marks, usually on her butt.”
	Using devices to monitor health	CG: “I got one of those little things (blood glucose test meter), I test his blood about every second day so his sugar is down to under 6 and it's okay because he was up to 13.5 which is really high.”
	Keeping track of and administering medication	CG: “I get his pills ready for seven days and I have a little dispenser and I just give him his pills, like morning, lunch time, supper time and night time.”
	Managing multiple illness care needs of CR simultaneously (eg, other comorbidities)	CG: “I make sure that he has his medications on time when he's supposed to, because he has the beginning part of Alzheimer's. It's not as bad as what it is going to get, but he does frequently forget and so I keep reminding him. And, if I'm not there, I phone him constantly, and at the times that I know he is supposed to have his medication and make sure he's taking it.”
	Administering nutritional intake/ensuring proper nutrition	CG: “I constantly have to be aware that he does not get constipated from the medication. I have to get a lot of greens into him and stuff that will make him go to the bathroom that I know moves him.”
Providing for psychosocial needs	Maintaining a sense of humor or spirituality	CG: “When he becomes sad I pray my God that he doesn't become sad, and I want to make him happy. I make some special thing for food. I try to make him happy. I bring the kids to hug them. I also hug him too.”
	Guiding with patience	CG: “In the first place, I do have all kinds of patience. I know he's going to forget (because of early stage of Alzheimer's), and I expect it, so I just go along with it. Like if he's supposed to go on an appointment somewhere and I call and I say ‘are you ready for the appointment today?’ And he says ‘what appointment?’ And then I'll tell him. And, he would say ‘oh, I forgot.’ I say ‘that’s okay, don't worry about it. Just get ready and go, because I'll be checking with you and make sure you have gone.' And he says, ‘okay, fine, thank you for calling. I appreciate that.’ So, this is it, is to be relaxed, have the patience.”
	Maintaining CR dignity	CR: “I think I've seen it in others, in other quads that I've known, where people forget that they are dealing with adults that want to make their own decisions that want to have some degree of privacy, as much as they can have it.”
	Providing positive coping strategies	CG: “But the main thing what we wanted [CR] to see is that there is life, even the way he was, so this is why we spent a little fortune building him a studio, that he would be able somehow to live as normal life as possible. Though there was no really income from it, but this was not important to us. What's important to us was the activity itself.”
	Ensuring social interaction/integration	CG: “Well, [CR] found a place which does adapted kayaking. She's on the water and does her paddling that way. We purchased an adapted bicycle, which kind of clasps onto her wheelchair and it's one of these bikes which is hand-driven…So, we're doing it still in many ways in a perhaps slightly more curtailed circumstance, but she's doing it…So, we're doing it now, admittedly with a bit of research.”
Decision-making	Considering possible consequences of a decision and modifying decision as needed	CG: “The bed, safety-wise, has got to have a rail on it so that they don't fall out because [CR] could have muscle spasms, even, in her sleep and that could make her fall out of bed. Now, I realize, okay, we have got to have a side up on the bed.”
	Assessing the importance of conflicting roles	CR: “A couple of weeks ago my grandfather ended up in the hospital and so mom couldn't go up because she was here with me, and the lady [third party caregiver] was away…And then mom didn't want to take me up to the hospital with her because everyone is sick up there and she didn't want me to get sick and be stuck sitting up there all evening, so it's little things like that that make it a hassle.”

Note: CG = caregiver; CR = care recipient.

Table 2.

SCI family caregiving processes, skills, and representative quotations (CONT.)

Caregiving processes	Caregiving skills	Representative quotations
Deciding when to step back from caregiving tasks	CG: “She said if she couldn't learn to way the proper way, then she wasn't going to eat. So, I just put it in her fingers at first, lifted it through, and she learned to get it up there herself and now she can pick it up herself and do it.”
Deciding when to seek informal social support	CG: “I got my brothers and my brother-in-law to come and build a ramp from the garage into the house. And then we built another ramp that went out the back door to the patio, so that he could go outside and enjoy the fresh air, so yeah, those sorts of things, rather than paying somebody to do all that. We solicited the help of family and we got it done, and it's worked very well.”
Time management	Planning ahead to manage caregiving tasks	CR: “In terms of trying to get the correct medication before we left (for vacation), and basically organizing the packing, and making sure all the aids were with us, the wheelchair, and the walker, it's a lot of preparation.”
	Developing a routine to manage caregiving tasks	CG: “If it's a bowel routine morning, then I put in the enema, I help him get on his commode chair and then he wheels himself to the bathroom. And then I give him 20 minutes or so…I'll catheterize him and then I'll bring him a coffee and a croissant. It's the same thing every morning. If it's not a bowel routine morning, then I'm done pretty much for that morning. I make his lunch the night before. I'm a teacher. So, during the school year there's always a lunch in the fridge.”
	Timing daily activities according to CR's care needs	CG: “Then I set the alarm. I get up about every I guess three hours. During the night he can go a little longer because he's not drinking a lot of fluids. Like first I catheterize him at 10:00 pm, and I put him in bed. Then I go back at about an hour later and catheterize again and then another hour and then after that I do about every three hours through the night, to do an intermittent catheter.”
Being flexible	Modifying house/environment to accommodate CR's needs	CR: “[CG] was orchestrating a variety of renovation projects here at the house. Like I said, it's an older farmhouse, so ramps were required, I needed a new front door 36 inch wide, so that was constructed for us as well a ramp inside the house. We have got a sunken living room level, so ramps were installed from the front entrance into the living room. And then we had the bathroom completely renovated as well. We had a roll-in shower, walk-in shower installed, as well as the toilet was made to accommodate the commode, and an accessible sink that I could wheel under. So, [CG] was busy orchestrating all that, so by the time I was discharged that was all ready for me. When we arrived home it was really a smooth transition.”
	Trying multiple strategies until solution is found to caregiving challenges	CR: “[CG] has tried the pressure mapping and everything for different cushions and I have the best cushion for whatever the pressure map shows.”
	Learning from mistake	CR: “Well, we didn't really know, that's why it got bad fast. My mom just pretty much thought it was a little pimple or something there, it was just a little red mark, and then after I was up on it for a couple days it was the size of a dime and starting to wear in so that's when we called the [home health care service], but by then it was spreading so fast. Within a couple of months even of staying off of it, it wasn't getting any better… now every time we do a catheter she's checking my butt, make sure there's no little red mark even.”
	Finding alternative caregiving methods	CR: “I think the thing that [CG] learned most, well, the hard way, really, when she's doing catheters, my bed, it's down quite low, so she was bending over and not bending her knees and it was really, really bothering her back so we ended up getting a bed that will rise up when we're doing anything like that.
	Using creativity to solve caregiving challenges	CG: “You're used to living a certain lifestyle before something like this happens and there are some foods you don't know. He doesn't like them. I try and make smoothies with juices. I just have to be very flexible because people get sick of eating the same thing all the time. I think the food management is a difficult thing, but I just keep working away at it.”
Navigating the health ans social services system	Seeking medical assistance from health care professionals in a timely manner	CR: “I can't feel my legs down there, I was just kind of like, ‘oh, okay, it’s bleeding, but it doesn't hurt, so it must be okay'. But of course it doesn't hurt if you don't feel your legs. I just went to [CG] and he kind of lifted up my leg and I said, ‘does this look bad, is it okay if I just put a Band-Aid on?’ He's like, ‘no, no, we need to go to a hospital, your bone is sticking out.’ He's just like, ‘don’t even move it or whatever', and just packed me up in the car, and then took me to Emergency.”

Note: CG = caregiver; CR = care recipient.

Table 2.

SCI family caregiving processes, skills, and representative quotations (CONT.)

Caregiving processes	Caregiving skills	Representative quotations
Assessing care received in the health care system	CG: “If she wants to learn it (self-management techniques) her way, do it…and then, they [nurses] were putting her back further. I mean she was getting frustrated and I was getting frustrated. So, at the end of it, I took her out. I said, this is foolishness.”
Advocating for the CR when necessary	CR: “Well this year when I went, [CG] told them about the pain in my shoulder all the time so I just learned to deal with it, but she finally, actually, told the doctor about it and said it had to be looked at so now I'm waiting for a referral. I just, I couldn't be bothered with little stuff like that. Yes, if I'm not going to tell the doctor, she sure will.”
Actively seeking resources/information	CR: “[CG] really took initiative. He worked with the occupational therapist at Lyndhurst who was a wealth of information, gave us different measurements for different heights, where the sink should be, the width of the commode, where we needed to install the toilet to get the commode over. So, he worked closely with her as well as doing a lot of research online.”
Seeking supportive care when needed	CG: “I was working, and how he was going to be supported in the house. But thankfully, we had home care that we set up, and that took a lot of pressure off that way.”
Providing training to third-party CGs	CG: “I found that as we started getting personal support workers in and support for [CR], I'm still the person that trains them. They sometimes come in not knowing what to do… because there are certain things that certain agencies don't allow their personal support workers to do, so I fill in those gaps.”

Note: CG = caregiver; CR = care recipient.

Monitoring and managing physical health and secondary health conditions

Caregivers require skills related to observing and appraising changes in the care recipient's physical, behavioral, or emotional condition to prevent or treat as early as possible the symptoms associated with secondary health conditions associated with SCI or aging (eg, seeking explanations for unknown signs and symptoms, paying attention to detail/subtle physical changes, keeping track of and administering medication, managing multiple illness care needs of the care recipient simultaneously, etc). The majority of participants described skills in monitoring and managing the care recipients' physical condition. For example, one caregiver shared how instead of seeking explanations for unknown signs and symptoms at the start of a pressure injury, she attributed the change in skin integrity incorrectly to a “pimple.” The more competent caregivers took the initiative to pay attention to detail/subtle physical changes to avoid worsening of symptoms: “So, I check anyway, if there are any red marks, usually on her butt” (CG 5, mother).

To manage changes in the care recipients' physical health, caregivers extensively used medication and nutrition management skills. They reported that keeping track of and administering medication was a routinely used skill. A few older participants reported that the caregivers had further developed the skill of managing multiple illness care needs of the care recipients simultaneously due to comorbidities associated with aging (ie, Alzheimer's).

Providing for psychosocial needs

Caregivers require skills related to ensuring that the psychological, social, and spiritual needs of the care recipient are recognized and met (eg, maintaining a sense of humor and spirituality, guiding with patience, maintaining care recipient's dignity, ensuring social interaction and integration, etc). In describing how they attended to the psychosocial needs of their family members, caregivers reported using a broad range of skills that they acquired throughout the years through personal interactions with the care recipients. The more competent caregivers learned to maintain a sense of humor and spirituality and guide with patience to avoid escalating care recipients' distress and anxiety levels.

Both caregivers and care recipients emphasized the importance of maintaining care recipients' dignity when providing care. Several participants commented on the importance of ensuring privacy when providing care, such as closing washroom doors during bowel and bladder care, giving thought to helping the care recipient with their personal appearance, asking the care recipient how he/she would like to be dressed. A few care recipients stated the importance of caregivers respecting their decisions when providing care:

“I think I've seen it in others, in other quads that I've known, where people forget that they are dealing with adults that want to make their own decisions, that want to have some degree of privacy, as much as they can have it.” (CR 20, husband)

In addition, a few caregivers further explained that respecting the care recipients' decision in self-care tasks empowered the recipients' autonomy.

A number of caregivers added that they had recognized the need for their family members with SCI to have satisfying social lives relative to their preinjury status and not feel restricted in social activities; therefore, they ensured social interaction and integration through encouragement and/or guidance (eg, navigating the care recipient to appropriate social opportunities). Several examples include encouraging recreational pursuits (eg, parasports), promoting community participation (eg, peer support groups), and helping maintain interpersonal interactions with others (eg, building healthy relationships with family and friends).

Decision making

Decision making requires skills related to selecting a logical choice based on the caregivers' careful examination, consideration, and interpretation of the caregiving situation (eg, considering possible consequences of a decision and modifying decision as needed, deciding when to step back from caregiving tasks, deciding when to seek informal social support, etc). For this caregiving process, we focused on caregiving decisions related to activities of daily living (ADLs). Although decision making is a continuous trial-and-error process, the more competent caregivers were able to choose a course of action that did not compromise the quality of care to the care recipients. For example, such caregivers mastered the skill of considering possible consequences of a decision and modifying the decision as needed to reduce the risk of harm to the care recipients:

“The bed, safety-wise, has got to have a rail on it so that they don't fall out because [care recipient] could have muscle spasms, even, in her sleep and that could make her fall out of bed. Now, I realize, okay, we have got to have a side up on the bed.” (CG 5, mother)

Some participants explained that they had become completely engrossed in the caregiving role. Whereas the less competent caregivers continued to take responsibility for all caregiving tasks, the more competent caregivers learned when to step back from caregiving tasks (ie, reduce dependency-inducing behaviors and encourage care recipient to perform certain self-care tasks) and when to seek informal social support (ie, recognizing the need to delegate caregiving responsibilities to other family members and/or friends).

Time management

Time management skills are related to using time effectively and productively to achieve multiple caregiving tasks (eg, planning ahead to manage caregiving tasks, developing a routine to manage caregiving tasks, timing daily activities according to the care recipient's care needs, etc). The majority of participants reported that caregivers used time efficiently to reduce short-term strain resulting from role overload by planning ahead and developing a routine to manage caregiving tasks.

On the basis of our analysis of skills that might enhance competency in caregiving, we inferred that caregivers would benefit from developing the skill of timing daily activities according to the care recipient's care needs, such as the frequently mentioned task of performing intermittent catheterization. This skill would focus on proactively anticipating the care recipient's daily rhythm (eg, urinary voiding patterns) and more adeptly managing daily tasks around the needs of the care recipient.

Being flexible

Being flexible is a continuous process and requires frequent adjustments, and family caregivers often reported they developed these skills through trial and error (eg, trying multiple strategies until solution is found to caregiving challenges, learning from mistakes, finding alternative caregiving methods, etc). The more competent caregivers had a keen ability to stay attuned to the dynamic caregiving situations by persistently trying multiple strategies until solutions were found to caregiving challenges, learning from mistakes, and finding alternative caregiving methods. A number of caregivers stated that it is imperative to possess these skills for several reasons: when the original caregiving method no longer worked, to identify the best caregiving method for different situations, to enhance the quality of care for the care recipients, and to ensure efficient caregiving. For example, initially, some caregivers prepared certain meals for the care recipients; however, in recognition of immediate onset of secondary health conditions (eg, bowel dysfunctions), caregivers modified the meal plan to adjust to the new conditions. Another example that was echoed by all the participants was that as the age of the caregiver increased, the procedure for transferring the care recipient also changed. Originally some caregivers were able to perform transfers effectively by lifting the care recipients themselves; however, as the caregivers became older, they experienced greater physical burden due to their functional limitations. Thus, several individuals reported they had decided to use advanced Hoyer lifts as the situation changed.

Navigating the health and social services system

Navigating the health and social services system includes skills related to accessing health care and social services and ensuring that the care recipient's care needs are met appropriately (eg, assessing the care received in health care system, advocating for care recipient when necessary, actively seeking resources and information, seeking supportive care when needed, providing training to third-party caregivers, etc). Due to the fact that this caregiving process was mentioned as one of the challenging aspects of caregiving and many individuals, particularly soon after discharge, had difficulty navigating the system, we inferred that caregivers would greatly benefit from developing skills such as seeking medical assistance from health care professionals in a timely manner. For example, a number of caregivers often questioned whether the appearance of new symptoms related to secondary health conditions was severe enough to seek professional help. In addition, it is also imperative to assess the care received in the health care system and advocate for the care recipient when necessary. For example, by assessing the self-management techniques that were provided by the nurses to her injured daughter, a mother (and in agreement with her daughter) recognized these techniques were more general and not tailored to her daughter's abilities. The caregiver took the initiative to voice her daughter's concern to the health care professionals to address this issue. Several participants had reported that the caregivers needed to learn additional skills in order to enhance caregiving, particularly how to actively seek resources and information. This skill focuses on using creative ways to tap into available resources (eg, home care, assistive devices, funding programs) in order to adequately meet the care recipient's needs.

Just as it is important to seek assistance from health care professionals, it is also imperative to know when to seek supportive care when needed, such as that of paid third-party caregivers (eg, personal support workers [PSW]). Although a few caregivers reported that they were apprehensive about seeking supportive care due to the fear of allowing an unknown individual to provide person support to their injured relative, a number of caregivers quickly learned how to navigate the home and community services system and described how they were able to receive practical support (eg, support with self-care tasks) from a hired PSW or attendant. Nonetheless, several caregivers found PSWs sometimes created added stress, and some were dissatisfied with the quality of care provided by PSWs. Indeed, caregivers had to acquire the skill of learning to provide training to third-party caregivers on how to provide care that met the needs of the care recipient:

“I found that as we started getting PSWs in and support for [care recipient], I'm still the person that trains them. They sometimes come in not knowing what to do…because there are certain things that certain agencies don't allow their PSWs to do, so I fill in those gaps.” (CG 2, wife)

Discussion

This study aimed to determine the breadth of skills needed by family caregivers to enhance their competency in caring for individuals with SCI from the perspectives of individuals with SCI and their family members. Using a qualitative descriptive approach, 29 SCI family caregiving skills were identified and grouped into six caregiving processes signifying the multiple dimensions of the SCI caregiving role. The findings from our study provide insight into the range of skills that could inform the development of interventions to help caregivers increase competency and perceived self-efficacy in caregiving. Specifically, the skills identified in the current study relate to level of competency, whereby, for example, the more competent caregiver feels he/she has the necessary skills to provide care effectively. This level of competency based on acquired skills relates to caregivers' perceived self-efficacy in their ability to effectively perform caregiving tasks based on the skills they have acquired. As a result, having these skills could decrease the stress level of both the individuals with SCI and family caregivers and could help maintain the health and well-being of the individuals with SCI in the community.

Our findings make substantive contributions to our understanding of the linked notions of family caregiving skill and competency among caregivers of individuals with SCI. Studies in other disease populations have described the caregiving processes of decision making,^4,21 monitoring and assessing,^22,23 and accessing available resources.^24,25 However, in comparison to caregivers of individuals living with other chronic illnesses and injuries, caregivers of individuals with SCI face unique challenges, such as (a) providing care specifically linked to SCI-related health conditions (eg, constant pressure injury monitoring and management, monitoring of fluid and fiber intake for bowel and bladder)²⁶; (b) the longer duration of the caregiving period²; (c) the functionality of the individual with SCI, which does not improve over time⁷; and (d) the unique challenges brought about by the interactions of aging, impairment, and comorbidity.² As a result, family caregivers of individuals with SCI are required to continuously develop and refine their caregiving skills. These caregiving skills are acquired through time and with experience,²⁴ commonly through trial and error. Our study findings highlight the complex nature of the caregiving role in SCI.

Previous studies have reported that caregivers of individuals with SCI receive some basic information on providing care post discharge, such as practical caregiving information^15,27 (eg, bowel and bladder management). However, the current study supports the findings of Schumacher and colleagues⁴ that caregiving is not a straightforward approach encompassing the willingness to follow a set of guidelines and instructions. Indeed, our data suggest that caregivers require higher order thinking skills, such as the ability to monitor and assess symptoms related to secondary health conditions following an SCI, which may entail symptom recognition, complex reasoning, and problem solving. Family caregiving skills need to involve active problem solving and decision making instead of a passive response to care challenges.⁴

Whereas previous studies focusing on family caregiving skills within other disease populations, such as Alzheimer's disease^13,24 and cancer,⁴ have mentioned various skills associated with managing the physical health of the care recipients, the current study further highlighted important skills in managing the psychosocial health of the individual with SCI. These skills contribute to the overall well-being of the care recipient and ensure the maintenance of the recipient's respect, privacy, choice, dignity, and control.²⁸ Our data further suggest that caregivers develop such skills through affective relationships with the care recipients that foster a deeper understanding about the care recipients' psychosocial needs. These data support the notion that the combination of both knowledge and a synergistic interaction, which includes understanding and acceptance of specific characteristics/traits of the caregiver and care recipient as individuals (eg, maintaining a sense of humor and spirituality, understanding the need to provide care with respect and dignity) as well as a dyad (eg, dyadic social interaction, or knowing when to step back from caregiving tasks to allow for care recipient's autonomy), is essential to successful skill development over time.

Central to this knowledge is the recognition that family caregiving skill is varied, such that caregivers might be more competent in some aspects of caregiving and less competent in other aspects; there is no “perfect caregiver.” More competent caregivers were often aware of and had a greater understanding of their family members' needs.²⁴ They were sensitive to the complexity of the injury and the caregiving process. This understanding and sensitivity translated into behaviors that enhanced care recipient outcomes.¹³ These behaviors included taking the initiative to effectively and efficiently integrate knowledge in monitoring and managing the physical and mental health needs of the care recipient, using higher order thinking skills to make day-to-day care decisions, handling multiple demands of caregiving, ensuring flexibility in their actions, and working the system to meet the care recipient's needs. Less competent caregivers' knowledge and insights were more limited.¹³ They had difficulty dealing with change, learning new information, adapting their behavior to different caregiving situations, and learning to use resources more widely; they also made choices that put the care recipient at risk for harm.

The following section outlines suggestions to move this knowledge of SCI family caregiving skills forward. The most evident gap in current caregiver interventions is lack of an approach to assess the breadth of real-life caregiving skills.²⁹ Current measures assess an SCI caregiver's perception of personal coping skills^7,30,31 but do not assess the caregiver's actual level of skill in providing care to the individual with SCI. Indeed, concerted efforts are required to assist family caregivers in developing and refining the skills needed to care for individuals with SCI; thus far, interventions have not addressed this issue.^8,12 The findings from our research suggest an approach similar to clinical assessment whereby health care professionals could conduct initial and ongoing assessments to determine each caregiver's level of skill and target interventions according to the caregiver's learning needs. For example, health care professionals could assess caregivers' abilities to recognize/assess the early symptoms of pressure injuries and provide guidance as needed. Our results further suggest that intervention programs should be designed to meet the changing needs of family caregivers over time. For example, as caregivers are initially facing their own adjustment challenges, it might be beneficial to provide timed and tailored interventions based on caregivers' readiness to receive such specific support. This would be in contrast to the current system where short periods of instructions are provided by health care professionals during inpatient rehabilitation or the more commonly provided general information (particularly in written format). However, further research conceptualizing SCI family caregiving skill is needed prior to designing a standardized assessment tool. For example, identifying the intervention components (eg, modules, timing, mode of delivery, organization, program leaders, etc.) for a skills training initiative for family caregivers of individuals with SCI and an assessment of its impact could be valuable. It should be noted that although the skills mentioned can be developed or bolstered, there is a need for a systemic change, whereby the health care system should be more accessible and responsive.

Limitations

Despite the strengths of the current study, a few limitations apply. First, the method used for recruitment of participants may have resulted in bias (eg, response bias). It is possible that the individuals who decided to participate may have been better adjusted to the caregiving role and were more competent than those individuals who declined participation. This may be a likely reason for an overrepresentation in the over 10 years post discharge group, as they have had more time to adjust to living with SCI or providing support. Also, it is possible that the individuals with SCI in our study may have considerable medical morbidities and have complex or high caregiving needs. Around 42% of the individuals with SCI in our study had tetraplegia, which is associated with more frequent and complex secondary health conditions (eg, spasticity, autonomic dysreflexia). Generally, individuals with a high level of injury, such as tetraplegia, are more dependent on their caregivers for assistance on a daily basis and require more hours of care. To monitor, assess, and manage such conditions at home, caregivers require a certain level of knowledge and skills, which might not be necessary for the general population of individuals with SCI (eg, higher prevalence of paraplegia). In addition, we did not collect information related to the caregivers' level of education or socioeconomic status (SES), and future research should incorporate these data as level of education and SES may influence caregiving skill acquisition. Furthermore, the current study only explored caregiving skills required to provide assistance to adults with SCI; caregiving skills required to provide care for younger individuals with SCI (ie, younger than 18 years of age) may differ, and future research should focus on such variance. Finally, the majority of participants were primarily Caucasian working/middle-class. Future research should be directed toward examining the experiences and skill needs of family caregivers from other cultural and ethnic groups and the impact of sociocultural factors on family caregiving skill development.

Conclusion

Overall, the current study demonstrated that development of multiple caregiving skills is crucial to enhance family members' competency in caregiving. Furthermore, considering the evolving health care needs of the individuals with SCI, our findings suggest a greater involvement of health care professionals in assessing caregiving skills at regular intervals. Such assessments can help family caregivers identify areas where they are facing caregiving difficulties and need to develop and achieve mastery in the necessary skills to address the challenges. In addition, program planners and policy makers, along with health care professionals, must work together to provide the necessary support services needed by family caregivers, as they are an important national health care resource. Despite ample research suggesting the need to improve caregiving knowledge and skills,^10,14 there continues to be lack of evidence-based interventions that include the skills that family caregivers need and use in real-life caregiving situations. Therefore, the breadth of skills needed by family caregivers to provide care to individuals with SCI can inform the design of programs that focus on enhancing caregiver competency.