McCurry, Mary K.
Multiple sclerosis (MS) is a chronic, progressive demyelinating neurological disorder that affects over 2 million people worldwide. In the United States alone, 400,000 individuals and their families are currently living with MS and 200 more will be diagnosed this week (National Multiple Sclerosis Society, 2012). Because most individuals living with MS are cared for in a home setting, informal caregivers provide most care. Because of the degenerative nature of the disease, individuals with MS often require increasing levels of assistance with their activities of daily living (ADLs) over time. Stress on informal caregivers increases as the assistance they provide becomes more complex (Forbes, While, & Mathes, 2007).
Because MS does not significantly shorten the lifespan of the affected individual, caregivers can expect to provide support and assistance for many years. The types of assistance informal caregivers of individuals with MS provide and the tolls this care can exact on the caregiver’s physical and mental health have been well documented (Buhse, 2008; Cheung & Hocking, 2004; Forbes et al., 2007). However, healthcare professionals know little about caregiver decision making regarding in-home care (Whitlatch, 2008), and no studies have identified the types of decisions caregivers of individuals with MS make or the resources they use to inform those decisions.
Informal caregivers are lay people, often spouses or parents, who assume responsibility for the physical and emotional needs of another who is incapable of self-care (Miller-Keane, 2003). Informal caregivers of individuals with MS provide assistance with all aspects of daily living. The types of assistance they provide have been well documented (Buchanan, Radin, Chakravorty, & Tyry, 2010; Carton, Loos, Pacolet, Versieck, & Vlietinck, 2000; Finlayson & Cho, 2008; Forbes et al., 2007). Caregivers provide assistance with ADLs such as bathing and toileting; safety issues regarding ambulation and transferring from wheelchair to bed and commode; or comfort concerns including positioning, pain control, or control of muscle spasms. Informal caregivers also assist with financial, legal, and end-of-life concerns (Wackenbarth, 2002). Because the caregivers are often spouses, parents, children, or close friends, these decisions can be emotionally difficult.
Healthcare professionals have acknowledged the negative impact of long-term caregiving. Decreased quality of life, increased personal health problems, decreased psychological well-being, decreased social life, and an adversely affected financial situation have all been identified in informal caregivers of MS care recipients (Buhse, 2008; Forbes et al., 2007; McKeown, Porter-Armstrong, & Baxter, 2003). Although informal caregivers have identified the need for psychological, informational, and financial support when providing long-term care (Koopman, Benbow, & Vandervoort, 2006), little is known about the daily decisions caregivers make. Given the large and growing number of informal caregivers and the known negative sequelae associated with long-term caregiving, it is important for healthcare professionals to know the full scope of the day-to-day decisions caregivers are making if they are to provide the most effective, supportive interventions.
The aim of this study was to examine decision making by informal caregivers of MS care recipients. Specifically, the researcher sought to understand what types of decisions the caregivers were making and what resources they used to inform those decisions.
A university institutional review board approved the study. Each participant received information regarding full disclosure of the nature of the study, the risks and benefits, data collection procedures, right to withdraw, and how their right to privacy would be maintained. Participant confidentiality was protected by coding data with a participant number, storing data in a locked file cabinet in the researcher’s locked office, and assigning pseudonyms to each participant. After answering any questions, written informed consent was obtained from each participant by the researcher.
Design and Methodology
A qualitative, exploratory-descriptive study using in-depth interviewing was completed. This design is most appropriate when the researcher is interested in expanding the understanding of a topic (Sandelowski, 2000). Two in-depth interviews were individually conducted with each participant. The first semistructured interview was between 2 and 2.5 hours long. After collecting demographic information, participants were asked open-ended questions designed to understand the types of decisions caregivers were making and to identify the resources they were using to inform their decision making. Follow-up questions varied reflecting topics introduced by the participant. Memos detailing thoughts of the investigator, mood of the subject, and any issues identified by the caregiver were made after the interview. Interviews were transcribed verbatim, and preliminary analysis identified emerging themes (Richards & Morse, 2007). After each of the initial interviews were completed, in-depth second interviews, lasting 1–1.5 hours, were completed with each participant to validate the accuracy of the thematic survey of the initial interview, follow up on incomplete answers, and further explore emerging themes (Morse & Field, 1995).
Purposeful sampling was used to identify informal caregivers of individuals with MS. Participants with longitudinal experience with informal caregiving were recruited through a key informant at a hospital-based MS center and an MS caregiver support group, allowing for an in-depth exploration of a small number of information-rich participants (Sandelowski, 1995). The six study participants ranged in age from 48 to 76 years. The sample included three female and three male caregivers. All of the study participants were White and non-Hispanic. Four of the caregivers were spouses; one was a fiancée, and the other was a longtime friend of the care recipient. Five of the caregivers were retired, and one worked as a registered nurse. None of the caregivers received a salary for their caregiving, although both the fiancée and the friend reported that the care recipient would often provide reimbursement for shared meals and occasional travel expenses. Number of years providing care to the care recipient ranged from 4 to 25, and percentage of total daily care provided ranged from 50% to 100%.
Qualitative content analysis was completed with a goal of summarizing the informational content of the data (Sandelowski, 2000). Verbatim transcriptions of the interviews were read several times to gain an overall sense of the data, and line-by-line coding, using descriptive labels generated from the data, was completed (Morse & Field, 1995). Initial descriptions of codes were grouped into related subcategories and then categories. These categories were then grouped into themes. A tree diagram was used to help organize the subcategories, categories, and themes into a hierarchy (Morse & Field, 1995). Analysis across interviews identified commonalities in the decision-making experiences of informal caregivers of individuals with MS. Relationships between subcategories were developed and validated by analyzing data bits from one person and comparing them across all cases (Miles & Huberman, 1994). Themes, categories, and subcategories were discussed and verified with another investigator familiar with the data. Direct quotes from the narratives were used to illustrate themes, categories, and subcategories identified during data analysis (Richards & Morse, 2007).
To ensure rigor/trustworthiness, data collection and analysis met Lincoln and Guba’s (1985) criteria for credibility, dependability, transferability, and confirmability. Credibility of the findings was established by member checking, triangulation, and prolonged engagement in the field with each participant having multiple in-depth interviews. Dependability was shown by an audit trail that articulated the decisions and insights that guided the analysis including the contextual background, rationale for methodological decisions, analytical insights, and the investigator’s orientation to the data (Rodgers & Cowles, 1993). Transferability of the data was preserved by transcribing the interviews verbatim, analyzing findings across cases, and validating findings with another investigator. Finally, confirmability was established by articulating biases and assumptions regarding the data, using direct quotes to support findings, and clearly explaining methodological decisions in memos (Lincoln & Guba, 1985).
Data analysis resulted in two major themes: types of decisions made by family caregivers and resources used to support the decision making. The decisions caregivers identified were grouped into four categories: healthcare, financial, social, and family/end-of-life. The resources used by caregivers and their care recipients to support the decision-making process were grouped into five categories: healthcare personnel, printed materials, online sources, experts, and word-of-mouth. Participants also identified resources that were not available but they thought would be helpful for future decisions.
Types of Decisions Made by Family Caregivers
During the initial interviews, participants were asked to describe decisions they had made while assisting the care recipient. The types of decisions they identified were analyzed and coded into four main categories (see Table 1).
Caregivers discussed healthcare decisions most frequently, acknowledging that these types of decisions were made on a daily basis. These decisions ranged from routine decisions regarding ADLs to emergent decisions related to acute changes. Subcategories under healthcare included decisions pertaining to medical interventions/medications, respite, ADLs/safety, and triage/emergent care.
The first subcategory that emerged was decision making regarding medical interventions and medications. This subcategory included decisions about surgical procedures, physical therapy, and medications. Caregivers described a variety of decisions related to medications, including whether to start taking certain medications, deciding on who would administer them and who would keep track of when they were given, monitoring the medication side effects, and determining if a medication should be discontinued.
I do all of her meds for her, I give her her shots and everything else.... I solved the problem of the shots because we got a great big plan-a-month calendar and got the idea of taking a bingo marker.... I try to cross them off as I do them.
When my husband was in pain, Dr. D. started him on Neurontin. We ended up on 400 mg four times a day, but my husband’s pain never was any better. When my husband’s pain got better, I didn’t ask anybody I slowly, slowly took away a little of that Neurontin.
All caregivers mentioned that healthcare decisions were made with the care recipient participating to whatever extent was possible. However, the caregivers of those with the most advanced disease acknowledged that, although they discussed the options with their partner, they frequently made the final decision alone secondary to their care recipients’ cognitive impairments. These decisions, as described, were often very stressful for the caregiver. Reported anxiety and uncertainty seemed to escalate when the decision being made was for the convenience and/or improved quality of life for the caregiver.
(Husband discussing the decision regarding a suprapubic tube insertion for his wife.) She said, “Whatever you want to do.” ...but I don’t know if I could live with myself if I said, “Let’s do this because it is easier,” and then we ran into problems. You know? So if you’re doing everything you can do, then it hits the fan, well you did everything you could do. But if it hits the fan and you were told before about the side effects... then how can you live with that? Even though you may find out that didn’t have anything to do with it...it’s just the idea that would follow you the rest of your life. So I said “No, we’ll go back to doing it this way.”
Respite was another subcategory under healthcare. Caregivers described decision making based on the difficulties in arranging respite and the stress that placed on the caregiver. Arranging respite was often described using terms that indicated frustration and feelings of isolation.
For about a year I felt like I needed to visit my son who is overseas. I was trying to get help from the family to place her somewhere while I was visiting. This went on for a whole year. The tension was increasing to the point that I knew that I was walking a fine line between giving care and also, you know, I didn’t want abuse, I did not want that to happen but I knew I was reaching the edge. We contacted several nursing homes and we filled out the paper work. Then we heard nothing about them.... So I told the doctor and he was frustrated also. He made a phone call and we finally got a placement. She was cared for and I was able to go overseas and see my son.
Other decisions in this subcategory included working out when and how the caregiver could take time for themselves and decisions related to the caregiver adopting some self-care behaviors.
More than half of being a successful caregiver is the person on the other end. You know they are the ones receiving help, but they have to be very open on how they interact with you. It’s a two-way street. I know she wants to get out of that bed, but I’ve got things I want to do here. I want to get my coffee, I want to wake up, feel good, okay, straighten things out, then I go in. And so she gives on that thing- where if she didn’t need me, she’d be up. But she knows I need that extra time. So it’s a give and take.
When I get up in the morning, I like to get myself all set before I come downstairs. If I come downstairs and take care of him and take care of the house and I don’t take care of myself first, I get lost and I’ll be in my pajamas until 1 o’clock in the afternoon and that’s not me.
The third subcategory under healthcare was decisions regarding ADLs and safety. These decisions involved all aspects of feeding, dressing, hygiene, transferring/ambulating, and toileting. The degree of caregiver burden described tended to increase as the care-recipient’s ability to transfer and ambulate decreased. Several caregivers also described their decisions to give “less than optimal care” if they felt it increased the overall quality of life for either the caregiver(s) or themselves.
I try to make decisions that work best for me. For my husband to move his bowels I have to give him his Lactulose every day. If he hasn’t moved his bowels every other day, then I give him a suppository.... Three days a week, his sister watches him the days I work, so I don’t want to have her clean that so I try to do it, like, not those days. Like if she’s coming tomorrow and tomorrow’s the day it’s supposed to be done well then I might wait one day.
You can give 100% care and that may require a lot to do and so the quality of life—even though you are giving 100%—the quality of every other part of your life is diminished. So you can bring that care down to maybe 90%...it may not be the best of everything, but you’ve got to bring your quality of life further up.
Lastly, healthcare decisions were made when caregivers triaged acute healthcare situations. These descriptions contained some of the most anxiety-laden decision making. Caregivers were often emotional when describing these decisions, in spite of the fact that many of these decisions had been made years ago. The decisions detailed by participants involved circumstances requiring responses to side effects of medications, falls, and acute status changes.
(Caregiver talking about what happened after increasing the dosage of a sedating medication) She went into a sort of overdose. I tried to wake her up and she was uggggh. I was shaking her; she would open her eyes. I said, “Now what do I do?” (Describes checking pulse and respirations) so I said to myself the heart is not beating erratically, the respirations all right- it looks all right anyway—so I sat by her side for 12 1/2 hours until she finally came back to this world in better shape.
I was washing her in the bathroom...she fell on her right knee and broke her femur. So it was another decision. Do I pick her up or do I get the Hoyer or do I call 911?
He didn’t look good. He looked kind of pale. I got him in the bed... and I said “Oh this doesn’t look good.” And I never left his side, and I saw him go pale, pale, pale. And I kept saying, “Joe, Joe”…and I couldn’t wake him up. So at that point, I called 911.
The second category that emerged was financial. Decisions described by caregivers in this category were coded as employment, daily household finances, or long-term financial planning. Employment decisions for both the care recipient and the caregiver were continually being reevaluated based on the needs of the care recipient.
It was a strange situation when she finally retired. She’s the one that had the job with a decent pension; she’s the one that had the healthcare... Now at that time she didn’t need somebody full-time, but she did need some help. Things were shaken up where I was working... if I have to start paying for things and at the same time talking with other people, the horror stories where someone is supposed to come, they don’t show up.... I decided to work part-time so I could stay here, and then finally, not work at all.
Another subcategory under financial was daily household finances. Caregivers were managing the daily finances in all dyads. For two caregivers, this had always been the case, but the other caregivers reported taking over the daily household finances because cognitive problems made it impossible for the care recipient to manage. For these caregivers, the additional decision-making responsibilities clearly added to their burden.
I picked up some things that normally I wouldn’t be doing—like the checkbook, food shopping. Normally I wouldn’t be doing that. And little by little, more and more as the MS progressed, and she became less able to do things...
I had to assume his (responsibilities). He used to pay the bills... he used to know when to call the oil man, and now I have to be on automatic delivery because I don’t always have time to check when that oil’s empty...Not only my things, I have his things.
Long-term financial decisions included obtaining power-of-attorney and setting up wills and trusts. Whereas some caregivers reported advanced planning for these decisions, “I’ve put together a binder, and we have hers and mine. And I have a living trust for both of us,” others described emergent situations that forced the decision, “When he got the flu and he couldn’t move anymore, I realized I need power of attorney.” The uncertainty of the illness seemed to delay long-term planning for some caregivers; because of the relapsing and remitting nature of the disease, they felt there was still time before they had to make those decisions.
Caregivers described decisions they made related to social activities. These decisions included planning for how and when they would go out and socialize. As the disease progressed, the decision of if they should even attempt to go somewhere fell to the caregiver.
Everything is harder-church, we’ve got a nice group of people at the church, but we don’t get there that often anymore because the last mass is at 9:30 in the morning, you know? So for 9:30 we have to leave here by 9 o’clock. That means around 6:30, 7 o’clock at the latest we are moving, moving, you know? And one little thing slows you down one little thing that takes longer than it should...
You have to plan, plan. You have to constantly think of all these things.
The impact of MS on their social lives was significant for both the caregivers and the care recipients. As the disease progressed, the sense of isolation surrounding the decision making became more profound. This increased isolation was most often secondary to the difficulty associated with leaving the home and the subsequent decision not to go out, but isolation resulting from loss of shared activities and decision making was also described.
It’s the shrinking of your world that I find the hardest. All this stuff we can deal with. I mean there’s equipment, medicine, change in priorities that you can deal with. The social aspect of it is the hardest because most people get a lot of their social life at work or from doing other things. And with MS there’s no talking to her over dinner, “How did your day go honey?,” because we both had the same day.... It’s hard, the isolation is hard...That camaraderie is gone. You miss that; you miss it.
My husband and I always did everything together.... He would help with the dishes, he would vacuum, he would wash clothes. We always did everything together, and I really miss that, I really miss that.
During the interviews, each caregiver described activities that they decided to participate in alone to destress. When caregivers decided they needed a break, they described engaging in activities that included spending time with friends, attending support groups, reading and drinking tea, driving around, visiting with family, reading self-help books, going shopping, occasional gambling at a nearby casino, watching television, attending local MS society activities, and going to work. Many of these activities the caregivers described had an obvious social component and allowed the caregiver to “get out of the house.”
In the final category, family/end-of-life, caregivers described decisions regarding how to have other family members involved so that there would be an alternate caregiver available if something happened to them and end-of-life decision making. Although these decisions varied based on the relationship between the caregiver and the care recipient and the individual family dynamics, all caregivers interviewed stated that they would care for their partner at home for as long as they were physically able.
I would do it until I was just exhausted—mentally, emotionally, spiritually—because it is him and I. How far would I go for him?... I would go as far as I could with this, every breath of my life, but I can’t do that last breath.... I can’t do it if I’m physically exhausted, emotionally exhausted, spiritually exhausted, and I don’t have the strength at that point. I think I would have to say, “Joe, we got to think of something because I can’t do this anymore.”
My goal is for her to never have to go into a nursing home.
End-of-life decisions were described as difficult to face for some, whereas others found comfort in having a plan. “When I think about what could happen, do I prepare myself for that? Well yes, maybe I do prepare for that, because I’ve got to go see the lawyer, and I’ve got to get all these things in line. So yes, I prepare for that, but when I’m dealing with things, I try to deal with today.”
Our finances are taken care of...insurance and long-term care, we’ve done that, we’ve taken care of it.... Our obituaries are written.... I want to be cremated, I don’t want to go into the ground.... I don’t want our kids to have to wonder what we want.
Caregivers who were not spouses (long-term friend, fiancée) described concerns with the inability to persuade the care recipients’ family to make end-of-life decisions. These caregivers felt that the families spent only limited amounts of time with the care recipient and did not understand and/or acknowledge the degree of decline experienced by their family member.
Interestingly, one caregiver described how discussing end-of-life decisions with her husband impacted her own long-standing end-of life decisions. “When we did talk about life support—of course, I’ve always said that I don’t want to be on life support—and I said to him, ‘How do you feel about that?’ And he said, ‘If I can’t move and if I can’t take care of myself and if I’m not dying, then I don’t want you to die. Even if I know you’re on life support that will give me peace of mind.’ So now I have to decide do I want to change how I feel to give my husband peace of mind?”
Caregivers used a number of resources to help make decisions. These resources were coded into five categories: healthcare personnel, printed materials, online sources, experts, and word-of-mouth (see Table 2).
The source of help varied depending on the decision topic. Healthcare and family/end-of-life decisions were often made after seeking information from medical personnel, such as physicians, nurses, pharmacists, and other MS clinic staff. When additional information was needed, caregivers reported using written materials such as brochures, the Merck manual, and online Web sites (MS society, MEDLINE). About half of the caregivers interviewed had also used medication information obtained directly from the pharmaceutical company through telephone calls, workshops, or conferences. If decisions regarding ADLs or safety were made, caregivers sought information from support groups for the caregiver or the care recipient, local fire departments, family, architects, the Veterans Administration, MS magazines, state laws, and medical supply catalogs. When financial and social decisions were made, caregivers most often reported using experts and word-of-mouth sources such as support groups, friends, and/or family to inform their decision making. However, this became problematic when family members disagreed or were unwilling to be involved.
Although some resource utilization was as expected, several resources provided support or information outside their normal scope of practice. For example, firefighters are often called to help with transferring care recipients at home when an unexpected problem arises, but several participants described instances where the firefighters were also helpful resources for problems and decisions requiring knowledge of physics and simple machines. Likewise, pharmacists were used to provide information about medications beyond the routine prescription and over-the-counter variety. Caregivers reported seeking advice from pharmacists regarding safety and efficacy of compound medications whose formulas were found online and the safety of alternative health practices.
Caregivers also identified resources that they felt would be helpful but were currently unavailable to them. These included “hassle-free” 24–7 access to healthcare professionals to assist with triaging acute situations, more training in emergency care, periodic home visits by occupational therapy to help the caregiver adapt care as the recipient’s needs changed, and a printed list of all the resources available in their particular community.
Informal caregivers of individuals with MS are making decisions that affect every aspect of daily living for their care recipients. Similar to other studies (Buchanan et al., 2010; Carton et al., 2000; Finlayson & Cho, 2008; Forbes et al., 2007), caregivers reported providing assistance with all aspects of daily living including: medical appointments, managing medications, ADLs, housework, bowel management, household finances, and transportation. Unlike previous studies that focused on the assistance caregivers provided, this study asked caregivers to describe the decisions they have made. By focusing on the decision making rather than the tasks, a more comprehensive picture of caregiver role and the associated burden emerged. Thus, in addition to the care previously documented in other studies of informal caregivers, caregivers in this study also described decisions providing assistance with long-term healthcare and financial planning, triaging of acute healthcare situations, medication selection, respite, and social interactions inside and outside the home.
Informal caregivers used a variety of resources to inform their decision making. Although these resources met their needs in most circumstances, access to healthcare providers and education regarding emergency care were identified as lacking by caregivers. These findings are consistent with a study by Koopman et al. (2006) that identified similar needs in significant others of people with MS. In their study, caregivers listed “to have access to MS care providers” and “receiving information” as two of the “Top Ten Needs” (p. 372).
Decision making by informal caregivers was associated with varying degrees of difficulty and anxiety. Decisions with greatest uncertainty provoked the most distress, and caregivers were more likely to report persistent negative emotions/memories when recalling these events. Triaging acute healthcare problems and end-of-life issues were the two most frequently reported types of decisions associated with ongoing distress. These findings are similar to those found in a study of informal caregivers providing palliative care at home (Munck, Fridlund, & Martensson, 2008). Caregivers in that study reported feeling powerless when faced with acute symptoms and were more likely to discontinue homecare. Similarly, caregivers in this study described feeling inadequate and worried when support from professionals was not available, because of either inadequate information or insufficient resources.
One potential intervention to address these caregiver concerns is to develop an interdisciplinary, informational program for caregivers. This program would provide caregivers with the knowledge and resources necessary to help them make informed decisions. When a similar program was implemented for caregivers of individuals with dementia (Whitlatch, 2008), caregivers who completed the program were able to successfully improve decision making while decreasing both caregiver and care recipient strain.
Educating healthcare professionals about the role and needs of family caregivers is another intervention that could positively affect quality of life for both the caregiver and the care recipients. Medical and nursing textbooks currently lack information related to family caregiving. Only 0.1% of the total content of 50 popular nursing textbooks was related to the role and needs of family caregivers (Ferrell, Virani, & Grant, 1999). The available content was evaluated as very weak, with only 8% of texts rated as commendable. This content included information on caregiver role, communication, and caregiver burden but did not mention cultural or ethnic differences or interventions to address these concerns (Ferrell et al., 1999). Educators in both classroom and practice settings need to provide didactic content that focuses on ways to support informal caregivers so that the negative sequelae associated with long-term caregiving can be minimized or prevented.
This study was limited by sample size and selection. Participants were solicited from the client population of one MS clinic and caregiver support group and may differ from caregivers of individuals with MS at other facilities. However, care was taken to select both male and female caregivers, of varying ages, who were providing assistance to care recipients requiring a range of support. Because of the limited sample size and purposeful sampling, generalizability to the larger MS caregiver population must be done cautiously. Further studies including a wider range of ethnicity and selecting from other geographical areas may provide opportunities for a fuller analysis of decision making by informal caregivers and allow for comparisons across ethnicity and setting.
Knowledge gained from understanding how informal caregivers make decisions benefits both caregivers and individuals with MS. By exploring decision making in informal caregivers of individuals with MS, a more comprehensive understanding of the scope of these decisions was realized. On the basis of this understanding, interventions can be developed that better support caregivers and assist decision making, thereby increasing quality of life for both caregivers and care recipients.