Healthcare Experience of People with Acute Spinal Cord Injury: A Phenomenological Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participant Selection
2.3. Interviews
2.4. Data Analysis
2.5. Ethical Considerations
3. Results
3.1. Participant’s Characterization
3.2. Experiences by People with Acute Spinal Cord Injury—Activities of Living
3.2.1. ALNM Mobilizing
- Rehabilitation (P1; P2; P3; P4; P5; P6; P7; P8; P9; P12; P13; P14; P15; and P16)—“I remember the first rehabilitation session with the nurse, the second, the third and remaining ones. I remember the contacts I had with the physiotherapist. All the methods and sessions were remarkable and important for my rehabilitation path” (P8).
- Stages of recovery (P2; P3; P4; P5; P6; P7; P8; P11; P12; P14; P15; and P16)—“I saw that my thumb was moving a little, and I thought—Stop! After all, it’s already moving. I held on to each evolution; each extra movement I could make was a victory” (P15).
- Exercises and equipment (P2; P3; P4; P5; P6; P7; P9; P12; P13; P14; and P15)—“I rode a kind of bicycle, and I have in my memory exercises on a balance board” (P5).
- Loss of mobility (P2; P3; P6; P8; P12; P13; P14; P15; and P16)—“After surgery, I immediately realized that my legs didn’t work” (P2).
- Walking (P1; P3; P4; P7; P11; P12; P14; and P15)—“The most exciting thing was to be able to take a few steps” (P11).
- Motivation and incentive (P5; P7; P8; P9; P14; P15; and P16)—“I am fully aware that I would not be able to recover if I didn’t also make an effort (…) it was not only the external strength that was needed but also the internal strength” (P14).
- Wheelchair (P3; P7; P11; and P13)—“When they brought me the wheelchair, I was in denial… I think I spent some days pretending that I was sitting in a normal chair” (P11).
3.2.2. ALNM Eliminating
- Urinary retention (P2; P4; P5; P7; P8; P10; P11; P12; P13; P14; and P16)—“It was hard to accept that I couldn’t urinate on my own” (P2).
- Intermittent catheterization (P2; P5; P7; P8; P10; P11; P13; P14; and P16)—“regularly I had to remove the urine from the bladder, and then there was the water control… it was a kind of game where you had to drink, hour-by-hour” (P10).
- Self-catheterization training (P2; P4; P7; P8; P10; P11; P13; and P16)—“It wasn’t a big deal. The nurses helped to uncomplicate it” (P10).
- “Continuous catheterization” (P1; P5; P6; P15; and P16)—“Going home earlier but staying with the urinary catheter… that was horrible! How will I go out into the street? I like walking, hiking, doing my own things, being with my grandchildren” (P10).
- Recover bladder function (P1; P8; P12; and P15)—“While I was hospitalized, I did intermittent catheterization, but I always tried to urinate before. I started to be able to urinate and to have lower and lower bladder volumes, and I ended up recovering” (P7).
- Fecal incontinence and constipation (P1; P2; P3; P8; P11; P13; P15; and P16)—“, I had leaks during the effort at the gym, when going to the standing frame (…) I didn’t have an anal tampon” (P2).
3.2.3. ALNM Maintaining a Safe Environment
- Pandemic and family (P2; P3; P4; P5; P6; P11; P12; P13; P14; P15; and P16)—“without family nearby because the pandemic we could only have a visit every three days (…) it was such a difficult time I was going through” (P15), “having my mobile phone with me was essential to be able to talk to my wife” (P12).
- Specialization healthcare (P2; P4; P7; P8; P10; P12; P14; P15; and P16)—“I felt safe, in the hands of the professionals, who knew what they were doing” (P2), “the atmosphere of safety that was transmitted to me, makes me recovered” (P8).
- Falls and the fear of falling (P1; P3; P5; P7; P12; and P16)—“In the bathroom, I felt insecure, and was afraid of falling” (P12), “I would wake up and see the sides of the bed, and I felt closed, trapped” (P1).
- Ward structure (P7, P8, P13, and P14)—”The space does not have an adequate, safe structure designed for patients with mobility alterations and in rehabilitation” (P8).
- Discharge home (P5; P10; and P12)—“I preferred not to press for discharge because I felt safer in the hospital. The two days that I was overstaying were necessary to leave in a better condition. At home, I had no one to ask for help” (P12).
3.2.4. ALNM Communicating
- Pain (P1; P2; P3; P4; P5; P6; P8; P9; P10; P12; P14; P15; and P16)—“I felt an atrocious pain… but I woke up from surgery without any pain! Incredible. I couldn’t believe what was happening” (P10); “I remember at first I couldn’t move in bed because of the pain and thinking that so much pain was a sign that something was wrong, didn´t let me recover” (P14).
- Therapeutic communication (P2; P3; P8; P10; P11; P13; P14; and P16)—“I fell apart, I was devastated, I don’t even know what came to my mind! The rehabilitation nurse explained to me what was happening; she gave me strength, and from that moment on, I got things moving more quickly. I understood, I began to think that it had to be me who had to try and see this problem through to the end. Those words made me hold on more my problem” (P16).
- Amnesia periods (P1; P2; P3; P11; P13; and P14)—“I don’t remember anything from the hospital before the day I got up and took a few steps. That was the key moment for me” (P11).
3.2.5. ALNM Working and Playing
- Occupying time (P1; P2; P5; P6; P7; P8; P9; P10; P12; P13; P14; and P15)—“I made an agenda and organized myself, I’d wake up, go to the internet while waiting for the bath and breakfast. Then, I’d be reading or talking on the phone (…), and then it was time to do gymnastics. Then came lunch, and then I had to rest (…) I’d get well and go training again all afternoon. The day passed quietly and quickly” (P9), “I think it is missing the rehabilitation at the weekend because we spend that time there, very still” (P2).
- Back to work (P2; P6; P8; P9; P12; and P14)—“I expect to work in the future, but certainly I won’t be able to continue doing the same thing I used to do” (P6).
- Getting out in the open air (P5; P7; P11; and P14)—“The first day they brought me to the terrace, it was awesome. I even got emotional (…) one of the best things was feeling the sun” (P11).
- Peer group (P2; P3; and P7)—“I felt support in the hospital talking to other patients who share the same problems” (P2).
3.2.6. ALNM Personal Cleansing and Dressing
- Dependence/independence continuum (P2; P3; P6; P7; P11; P13; P14; P15; and P16)—“The thing that gave me the most joy was when I could go to the bathroom by myself to shave, wash, and take a bath” (P16).
- Pressure injuries (P2; P3; P7; P8; P13; P14; and P16)—“I got a change in the chest area, which was very red, very hard. It would have been the position and time of the surgery” (P14), “I’m on a proper mattress and with a cushion on the chair” (P13).
- Vulnerability (P3and P11)—“Once, in the rehabilitation center, I was coming from the gym, very sweaty, and I asked if I could take a quick shower, and they told me that as I was in a wheelchair, I couldn´t take a bath whenever I want it” (P3).
3.2.7. ALNM Expressing Sexuality
- Initial devaluation (P2; P4; P9; P11; P14; P15; and P16)—“During hospitalization, I never thought about sexuality. My focus was to get well and my husband’s too” (P11).
- Return home (P2; P6; P12; P15; and P16)—“The first weekend I went home, my husband was even afraid to touch me. Then when I went home again, we still tried it, but I had no sensibility” (P2).
- Frustration (P15)—”It is a difficult and slow process… we are insisting, insisting and then it is a frustration. The human being is very complex!” (P15).
3.2.8. ALNM Eating and Drinking
- Dependence/independence continuum (P3; P8; P11; P14; and P15)—“As I had altered motricity, I needed help to cut food; I remember wanting to eat an apple and having to ask someone to cut it. I was recovering and when I discharge, I already eating alone” (P14).
- Body weight (P3; P7; and P10)—“I lost about 3 or 4 Kg when I had the surgery, and I realized that being less heavy makes it easier to help me” (P10).
- Adapted cutlery (P11 and P15)—“When they brought me cutlery with adaptors, then I really felt in denial… I needed time to adapt myself to the idea” (P11).
- Dysphagia (P3 and P14)—I had difficulty swallowing, and having the cervical collar made it even worse” (P14).
3.2.9. ALNM Breathing
- Orthostatic hypotension (P2; P6; P11; P13; and P14)—“I had very low blood pressure, and it got worse when I got up; it was a tough phase at the beginning” (P2).
- Respiratory rehabilitation (P2; P8; P13; P14; and P16)—“I did those exercises to control breathing and used the spirometer. I still do today. I wasn’t breathing in the best way…” (P16).
3.2.10. ALNM Sleeping
3.2.11. ALNM Dying
4. Discussion
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Public Involvement Statement
Guidelines and Standards Statement
Acknowledgments
Conflicts of Interest
References
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Demographic and Injury Characteristics of Participants | ||||||||
---|---|---|---|---|---|---|---|---|
SCI Patients | Gender | Age | Occupation | Educational Level | Diagnosis | ASIA Classification | Neurological Level | Post-Discharge |
P1 | Female | 73 | Retired | 1st cycle of basic education | Schwannoma | D | T12 | Physiatry department |
P2 | Female | 52 | Educator | Higher education | Pott’s disease | B | T9 | Physiatry department |
P3 | Female | 52 | Nurse | Higher education | SCIWORA | D | C5 | Physiatry department |
P4 | Female | 26 | Alternative medicine therapist | Secondary education | Discal hernia | D | S1 | Home |
P5 | Male | 78 | Retired | Higher education | Cauda equina syndrome | D | L5 | Home |
P6 | Male | 40 | Warehouse operator | 3rd cycle of basic education | Epidural neoplasm | C | C5 | Physiatry department |
P7 | Male | 57 | Retired | 3rd cycle of basic education | Conus medullaris syndrome | C | L2 | Physiatry department |
P8 | Female | 47 | Nurse | Higher education | Schwannoma | C | T2 | Physiatry department |
P9 | Female | 52 | Physiotherapist | Higher education | Schwannoma | D | L2 | Home |
P10 | Female | 66 | Administrative | 2nd cycle of basic education | Herniated disc | D | S2 | Home |
P11 | Female | 57 | Unemployed | 1st cycle of basic education | Cervical contusion | D | C5 | Home |
P12 | Male | 33 | Researcher | Higher education | Vertebral hemangioma | D | L2 | Home |
P13 | Male | 73 | Retired | 1st cycle of basic education | Epidural neoplasm | B | T4 | Home |
P14 | Female | 26 | Nurse | Higher education | Schwannoma | D | C5 | Physiatry department |
P15 | Male | 54 | University Higher Technician | Higher education | Cervical Spondylotic Myelopathy | D | C5 | Home |
P16 | Male | 60 | Driver | 2nd cycle of basic education | Ependymoma | D | T3 | Physiatry department |
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Sousa, S.S.; Andrade, M.J.; Fernandes, C.S.; Barbeiro, S.R.; Teixeira, V.T.; Pereira, R.S.; Martins, M.M. Healthcare Experience of People with Acute Spinal Cord Injury: A Phenomenological Study. Nurs. Rep. 2023, 13, 1671-1683. https://doi.org/10.3390/nursrep13040138
Sousa SS, Andrade MJ, Fernandes CS, Barbeiro SR, Teixeira VT, Pereira RS, Martins MM. Healthcare Experience of People with Acute Spinal Cord Injury: A Phenomenological Study. Nursing Reports. 2023; 13(4):1671-1683. https://doi.org/10.3390/nursrep13040138
Chicago/Turabian StyleSousa, Salomé Sobral, Maria João Andrade, Carla Sílvia Fernandes, Sara Rodrigues Barbeiro, Vanessa Taveira Teixeira, Rute Silva Pereira, and Maria Manuela Martins. 2023. "Healthcare Experience of People with Acute Spinal Cord Injury: A Phenomenological Study" Nursing Reports 13, no. 4: 1671-1683. https://doi.org/10.3390/nursrep13040138
APA StyleSousa, S. S., Andrade, M. J., Fernandes, C. S., Barbeiro, S. R., Teixeira, V. T., Pereira, R. S., & Martins, M. M. (2023). Healthcare Experience of People with Acute Spinal Cord Injury: A Phenomenological Study. Nursing Reports, 13(4), 1671-1683. https://doi.org/10.3390/nursrep13040138