Differing Appraisals of Caregiving: Comparing Caregivers and Care Recipients in Managing Spinal Cord Injury

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1 Differing Appraisals of Caregiving: Comparing Caregivers and Care Recipients in Managing Spinal Cord Injury Edward J. Rohn, Ph.D. Denise G. Tate, Ph.D. Martin Forchheimer, M.P.P. Paralyzed Veterans of America 2017 Summit and Expo Corresponding author:

2 Disclosure of Grant Support U.S. Department of Defense Congressionally Directed Medical Research Program (CDMRP) SCI Research Program (SCIRP) Project: Psychosocial and Behavioral Factors Associated with Bowel and Bladder Management After SCI. Grant # PSCI10228 Our thanks those men and women caregivers and care recipients who shared their stories and experiences with us.

3 Disclosures PESG and PVA staff have no interest to disclose. This continuing education activity is managed and accredited by Professional Education Services Group in cooperation with PVA. PESG, PVA, and all accrediting organizations do no support or endorse any product or service mentioned in this activity.

4 CE/CME Credit If you would like to receive continuing education credit for this activity, please visit:

5 Learning Objectives At the conclusion of this activity, the participant will be able to: 1. Identify the differing ways caregiving is appraised and experienced by caregivers and care recipients with SCI. 2. Recognize how psychological adjustment to SCI is impactful in significant ways both to those with SCI and those providing care. 3. Identify the benefit of qualitative data collection methods that capture lived experiences, revealing differing patterns of appraisal and behavior.

6 Background Benefits of caregiving to SCI Receiving skilled care can be a critical factor in maintaining health. Good physical and mental health. Improve activity levels, community participation, and provide companionship. Inadequate care increases risk of complications.

7 Background Caregiver perspectives Caregiving can be extremely rewarding and beneficial Clear sense of purpose and friendship Improved lived experiences of care recipients But caregiving can also be very stressful Significant emotional and physical burdens Changes in relationships, especially for spouses

8 Study Goals Larger study goal: to identify risk factors associated with neurogenic bladder and bowel complications after SCI and to determine the influence of these on QOL. Present study goal: to examine the differences in appraisals of caregiving and the impact of these differences between caregivers and care recipients with SCI.

9 Methods Qualitative study of veterans and civilians with SCI and caregivers. Veterans and civilians with SCI (N=22) and caregivers (N=20). Caregivers also assisted with day to day activities. Caregivers mix of family, friends, and agency employees. Responses from a subset of questions addressing caregiving were analyzed.

10 Sample Description SCI (N=22) N % Male % Female % Caregivers (N=20) N % Male 3 15% Female 17 85% Paraplegia % Tetraplegia % Family 11 55% Non Family 9 45% <1 yr since injury % >10 yrs since injury % Assist bowel/bladder 18 90% No assistance 2 10%

11 Methods SCI PARTICIPANT INTERVIEW QUESTIONS 1) Do you prefer the term caregiver or personal attendant/assistant? 2) In what ways does your caregiver(s) help you manage your bladder? 3) In what ways does your caregiver(s) help you manage your bowels? 4) How do you feel about the care you receive? 5) How do you feel about your relationship/experience with your caregiver? PROBES: Any challenges to having someone help you with your bowel and bladder? What concerns, if any, do you have about the quality of the care you receive? (e.g., abuse, independence, proper care, impact complications, create challenges, helpful, provide assistance when needed)

12 Methods CAREGIVER INTERVIEW QUESTIONS 1) What are the various ways you provide assistance with bowel/bladder management activities? 2) Has the person you care for encountered any major medical complications related to neurogenic bladder/bowel that needed treatment and follow up? 3) Has the person you care for experienced any emotional distress associated with SCI that causes you some concern? If YES, provide some details? 4) How difficult is it for you to do the tasks related to bowel/bladder management? 5) Has taking on the role of caregiver changed your relationship to the person to whom you provide care? If so, how (or in what way), has your relationship changed?

13 Methods Audio recorded, transcribed, & opencoded using Nvivo 11 Blocks of text identified Text blocks assigned codes to describe content in a few words List of discrete topics generated (>60)

14 Methods Similar codes were collapsed into themes (=10) that reflected similar ideas. Of the 10 final themes, 6 were shared between the two groups: Access to resources Bladder & bowel management Caregiver roles & responsibilities Complications Psychological adjustment Relationship between caregiver and care recipient Text from these themes were placed in a matrix.

15 Methods

16 Methods Matrix is read by theme to identified patterns (e.g. all narrative comments re: complications). Comparisons made between caregivers and care recipients on each shared theme. Identifying these patterns in the matrix revealed differing appraisals of caregiving. Results include the themes and the patterns within and between groups.

17 Results Access to Resources References to community, financial, personal, and healthcare resources that have an impact on caregiving. Codes: insurance, financial issues, healthcare agency, relationship with healthcare providers, work employment Patterns: Insurance and financial challenges Medical supplies and vehicle Job becomes to stay healthy I worry that my insurance company isn t going to fix my house or paying them to take care of me because right now they haven t got paid nothing woman with paraplegia, re: paid caregivers Feelings I get mostly is, I don t know what tomorrow s going to be. I mean, financially, I m always worried family caregiver

18 Results Bladder & Bowel Management References to neurogenic bladder or bowel, daily regimens, decision making, accessibility to facilities in public, ways caregiving and management interface. Codes: accessibility, bladder assistance, bowel assistance, diet, routine, surgery Patterns: Need for independence (SCIs) Detailed, meticulous regimen (CGs) No obvious vet vs civilian differences I do my own bladder, but again I tell you the bowel routine, part of the source of my frustration with it is the dependence on someone else, even though it s my wife. veteran with tetraplegia It took us a little while to find the right regimen for him, but what we ve got now works. non family caregiver

19 Results Caregiver Roles & Responsibilities References to any assistance caregivers provide that does not involve direct bowel or bladder management, including household duties, transfers, and/or transportation. Codes: assistance with daily activities, changes in employment status Patterns: Broad roles for caregivers (SCIs) Vs. specific health roles (CGs) Tension with independence/family I have a set routine. They just do their job. man with tetraplegia You re running and making sure he has water and you re running and making sure he s drinking and you re running and making sure he s eating It s your job. You re there the most stressful part is knowing that you have someone s life in your hands constantly. non family caregiver

20 Results Complications References to any complications related to SCI, including bladder and bowel complications, pain, comorbidities and/or secondary conditions. Codes: accidents, comorbidities, constipation, pain, UTIs, secondary complications Patterns Concern re: sores, accidents (mutual) Focused on person with SCI Near universal worry re: UTIs (CGs) I hated to go out in case of an accident you know? Especially if it was going to be a long trip. veteran with tetraplegia I mean sometimes the UTIs are a nuisance. I mean you re doing everything possible on our end and it doesn t go away, but there s nothing you can do about it. family caregiver to veteran

21 Results Psychological Adjustment References to any appraisals, cognitions, and adaptations, both personal and social, related to both caregiving and SCI. Codes: adjustment, comparisons to others, embarrassment, frustration stress, humiliation, humor, new normal, privacy, religion, social life, social support, stigma Patterns: Caregivers: differentiate between own adjustment and care recipient s SCI focus on own adjustment It s just a humbling experience because no matter how close we are with our spouses, when you re able bodied your time in the bathroom is your private time... And having to have someone who you love and you live with, it s comforting and also a bit discomforting too. Because honestly you want to make sure they still love you and understand that this is a part of your life. veteran with tetraplegia

22 Results Psychological Adjustment There s always that sense in the back of my mind, when does she have to go? You know, is she comfortable? Is she gonna need to cath on our way home? That s always on my mind. family caregiver (spouse) People would tell me that I wasn t the exact same person that I used to be, and only until after the fact did I really see that in myself because it just consumes you. family caregiver (spouse) I mean, it s not easy to let someone come and cath you or do a bowel program on you because they re embarrassed. That s humiliating. You know, here they are 32 years old, 20 years old, and they have to have someone there to clean them up. non family caregiver He has fear if I m going to be gone, I m going to be some place and I can tell it s because he feels like he has no control. family caregiver (spouse)

23 Results Caregiver/Care Recipient Relationship References to the specifics of the relationship between the caregiver and care recipient, from the perspective of either party, including issues of family roles, sexuality, and marriage. Codes: family caregiver, history of SCI, like family, marriage spouse, relationship with care recipient, sexuality Patterns: Develop family like bonds (SCIs) More managerial relationships I think that peer support, counseling with the caregiver is important, because there are psychological adjustments that have to be made by those individuals too and that can t be taken lightly. veteran with tetraplegia After a while I m sure that there s some type of feelings that develop because you re caring for a person and you re doing some really intimate care. veteran with tetraplegia

24 Results Caregiver/Care Recipient Relationship I find myself a lot more protective of her, you know, than I ever have before it really strengthened our relationship with each other. I mean, we look for each other for strength now we lean on each other a lot. family caregiver (spouse) I had to get like real upfront and in his face when I told him, Your attitude is going to make or break this family. I had to be real forceful and so it was kind of like we were like reversing roles family caregiver (spouse) you have to be that person that if they fall down, you have to pick them up. If they are having a bad day, you re the one to have to cheer them up. If they need advice, you re the one that they talk to. non family caregiver I said it s good that you enjoy your life because taking care of you and seeing you in your house with your wife and your kids has made me to understand life even more deeper. non family caregiver

25 Results Patterns Caregivers: caregiving as paramount to recipients wellbeing. Treating and preventing UTIs was salient for nearly every caregiver (18 of 20). Tended to differentiate between their own psychological adjustment to caregiving and the parallel adjustment of their care recipient(s). Many referenced the sacrifices they gave to provide care while acknowledging the hardships and loss of their care recipients.

26 Results Patterns Care recipients: caregiving taken for granted. Those with SCI expressed appreciation and affection for caregivers, cited how they became closer through the experiences. Seldom referenced caregiver adjustment or burden, only their own. Some conceptualized their own role as manager over the care they received.

27 Conclusions 1. Care recipients minimized the role of caregivers in their health and wellbeing. 2. Caregivers were consumed with minutia of SCI management. 3. Differing appraisals of caregiving caregiver stress? 4. Qualitative methods experiences of caregivers and care recipients. 5. Future work would lead to interventions lessen the stress of caregiving.

28 Questions? Edward J. Rohn

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