Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis
Abstract
:1. Introduction
2. Materials and Methods
2.1. Methodological Approach
2.2. Research Settings
2.3. Sampling and Recruitment
2.4. Data Collection and Analysis
2.5. Memoing and Rigor
3. Results
3.1. Study Participants
3.2. The Core Category: Off-Beat Interfacing
3.3. Category 1: Navigating Different Paths
“A more human attitude, more understanding and with a more… complete vision, right? Of what could be the course of the disease. Therefore, without already giving a glimpse of the final act!”(Patient 13)
“The diagnosis was the initial hit... for me, and it was a good hit! Life changed and not a little... I was expecting something but not so huge, so significant.”(CG 11)
“I always clarify that this is a disease that cannot be cured, which is called amyotrophic lateral sclerosis because there shouldn’t be too many doubts. The diagnosis should use the name.”(HP 24)
“I realized that I would have been better, but the impact of going around in the chair... you’re telling everyone ‘I’m sick,’ understand?”(Patient 09)
“Your first instinct is to refuse it, to continue doing what you’ve always done. For now I continue with my life, I keep working... they don’t stop me!”(Patient 15)
“We started to find ways to help him, to make him as self-sufficient as possible, autonomous... we tried to keep him autonomous even for eating, even if he was starting to struggle”(CG 04)
“There are families who insist on wanting to normalize everything even when (nervous laughter) the patient is already at an advanced stage”(HP 23)
“The acceptance of the wheelchair, for example, is another very critical moment... they prefer to take ten steps with brutish effort rather than use the wheelchair…”(HP 18)
3.4. Category 2: Offering and Experiencing a Standard, Non-Personalized Pathway
“In any case, the organization orders you... the guidelines dictate it! You have to do some tests”(HP 19)
“The activation of the services’ network can sometimes be a bit excessive compared to the patient’s needs, but it’s also true that in a system where you work in a team at different times, to ensure that everything is covered… all patients receive the same. We must provide…”(HP 23)
“We realized that patients get to a saturation point, and they don’t like it.”(HP 18)
“I always say at our meetings that you must give patients time. Sometimes, offering so many things all together to a person… gives me the idea that we almost want to impose some things… not everyone likes the same type of pathway. We’re the ones who must adapt to their needs.”(HP 27)
“This pathway, I’ve been… I don’t mean ‘attacked’—that’s not the right word—but so many different people have contacted me… It felt too much… I needed to process it… to be quiet. I felt suffocated... I needed more time.”(Patient 15)
“She’s constantly having visits; you do get a little impatient.”(CG 05)
“Every day, a test or a puncture... a needle”.(Patient 10)
3.5. Category 3: Anticipating Decisions
“I often perceive a sort of anxiety in wanting the advance treatment directives, especially some colleagues directly involved in some procedures. Something that aims more to compensate for the anxiety of being in an urgent clinical condition and not knowing what to do”(HP 29)
“He [the doctor] had a very negative debut because, at the first meeting, he told me: ‘now we have to think about the feeding tube.’ I told him to go to hell! We’ll think about the feeding tube”(Patient 13)
“Clearly, a person who is not totally aware [of the ALS progression] imagines that they will insert a cannula here or there next week! It’s ok preparing her by telling her, ‘Look! It may be that...’. It may be! It seems it was immediate, to do it now... imminent”(CG 08)
“ACP… once I used to start right away and many patients complained because… ‘I still walk. Do I want a tracheostomy? But how do I know?’”(HP 18)
“The patient experienced it as a form of aggression and said: ‘That’s enough! Every time you crucify me because I have to give advance treatment directives’”(HP 26)
4. Discussion
Limitations and Strengths
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Foci | Individuals with ALS | CGs | HPs |
---|---|---|---|
Typical questions | |||
Experiencing health services | Could you tell me what services you have met since your diagnosis? Could you tell me how you felt during the interaction with these services? | Which professionals have you met to date? What happened when you went to the service/met any professionals from the service? | Could you tell me what your role is within the health service? Could you please describe a typical pathway for me? Could you tell me how you feel? Do you have a specific case in mind? |
Being assisted/assisting within services | Could you tell me what have been the most significant moments so far? What do you need to do now concerning your condition? | Could you tell me how you dealt/are dealing with treatments/decisions? Who do you feel is helping you? | If we concentrate on a specific case, what were the most significant moments concerning patient NN in the diagnostic or therapeutic process? How did you experience that moment? |
Relationships within services | Could you please tell me about your expectations from HPs? Which persons do you feel are closest to you in this care pathway? | Could you please tell me about your expectations from HPs? Which people do you feel are closest to you in this care pathway? | With which professionals/services do you share or have shared aspects related to NN? |
Closing questions | Do you have any final comments or suggestions for improving the care provided? | Do you have any final comments or suggestions for improving the care provided? | Do you have any final comments or suggestions for improving the care provided? |
Code | Gender | Age Range (Years) | Onset Type | Treatment | Months Since the Diagnosis at the Interview |
---|---|---|---|---|---|
02 | F | 70–79 | classic | NIV | 30 |
03 | M | 50–59 | bulbar | NIV | 34 |
06 | F | 70–79 | bulbar | NIV | 17 |
09 | F | 50–59 | classic | - | 33 |
10 | M | 60–69 | classic | - | 6 |
13 | M | 60–69 | classic | - | 12 |
14 | M | 60–69 | classic | - | 4 |
15 | M | 50–59 | classic | - | 11 |
16 | F | 70–79 | classic | - | 30 |
17 | M | 60–69 | classic | NIV/PEG | 33 |
Code | Gender | Age Range (Years) | CG of the Patient (Code) | Relationship with the Patient |
---|---|---|---|---|
01 | M | 70–79 | 02 | Husband |
04 | F | 50–59 | 03 | Wife |
05 | F | 40–49 | - | Nephew |
07 | M | ≥80 | 06 | Husband |
08 | M | 60–69 | 06 | Son |
11 | F | 50–59 | 10 | Wife |
12 | M | 50–59 | 09 | Husband |
Code | Gender | Age Range (Years) | Role |
---|---|---|---|
18 | F | 60–69 | Physical therapist |
19 | F | 40–49 | Speech therapist |
20 | F | 40–49 | Dietitian |
21 | F | 60–69 | Rehabilitation medicine specialist |
22 | M | 30–39 | Respiratory specialist |
23 | F | 60–69 | Phoniatrist |
24 | F | 30–39 | Neurologist |
25 | F | 40–49 | Psychologist |
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Alquati, S.; Ghirotto, L.; De Panfilis, L.; Autelitano, C.; Bertocchi, E.; Artioli, G.; Sireci, F.; Tanzi, S.; Sacchi, S. Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis. Brain Sci. 2022, 12, 1623. https://doi.org/10.3390/brainsci12121623
Alquati S, Ghirotto L, De Panfilis L, Autelitano C, Bertocchi E, Artioli G, Sireci F, Tanzi S, Sacchi S. Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis. Brain Sciences. 2022; 12(12):1623. https://doi.org/10.3390/brainsci12121623
Chicago/Turabian StyleAlquati, Sara, Luca Ghirotto, Ludovica De Panfilis, Cristina Autelitano, Elisabetta Bertocchi, Giovanna Artioli, Francesca Sireci, Silvia Tanzi, and Simona Sacchi. 2022. "Negotiating the Beginning of Care: A Grounded Theory Study of Health Services for Amyotrophic Lateral Sclerosis" Brain Sciences 12, no. 12: 1623. https://doi.org/10.3390/brainsci12121623