A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors
Abstract
:1. Introduction
2. Materials and Methods
2.1. Design
2.2. Participants
2.3. Procedure of the Interviews
2.4. Data Management and Transcription
2.5. Analysis Procedures
3. Results
3.1. The Lives of Young Carers
“It is more of the normal family thing for us. My mum is more of the carer. Me and my sister, we are here to help with him but …its normal routine for us.”(Alfie 17)
“Carers to me come in from a company but family members to me aren’t carers they are just family.”(Sue 41)
3.1.1. Tasks of Caring
“He gets quite upset about what he realises what he can’t do. We try to keep him focused on what he can do to keep him motivated because he can move his right leg a bit and we keep getting him to do that.”(Molly 20)
“To help my dad I did his speech and language thing on his IPad…. but he said it’s too babyish ….I helped him with that and I have done a few more chores around the house now because mum has to help him with other things. So I’ve had to do more or less some of hers.”(Jamie 11)
“I like them [young carers] helping me but not when it comes to food or toilet.”(Dennis 58)
“The worst job? Probably taking the commode out because it stinks.”(Declan 12)
3.1.2. Support Needs
“I have [over] heard bits of what the doctor said but I’ve not really understood it properly. I just know it’s something to do with the brain.”(Laura 17)
“Even the nurses, they are very sort of, job and move on. They don’t really, tell you anything. The majority of things I learned from them was from when they were reading from their handovers to each other at the end of the bed.”(Anna 20)
“they [health care professionals] just do their job and then they skedaddle.”(Jamie 11)
“It would have been useful to have some information as a piece of paper or as an online resource that gave me a list of all the kinds of effects a stroke could have and that might have helped me to help her more now. Because apart from her mobility issue I really didn’t know what I could do to help her out. So maybe if I had known about the things she was struggling with I could have helped her a bit more….if there was a big handbook with all the different things that have been reported and then you could read through and then ask her, do you need any help with this?”(Jack 20)
3.1.3. Benefits and Detriment of Caring
“Well before I wouldn’t usually have got dressed, I’d have come straight downstairs and my breakfast would have been ready and my mum would have told me to go back upstairs and get my clothes on but now I usually get up, out of bed, do my teeth, do my clothes, come downstairs and make my own breakfast and then get my stuff ready for school. Do everything I need to do and then go to school.”(Jamie)
“Do you have to get your sister ready for school as well?”(researcher)
“She does it herself. I started doing it and then she copied.”(Jamie)
“Do you walk your sister to school?”(researcher)
“Yes I do.”(Jamie 11)
“Is there anything you have had to do since he came home that you haven’t liked doing?”(researcher)
“Maybe looking after my brother a bit when I’ve got things to do. But then I would always put him first.”(Anna 20)
3.2. Impact of Stroke
3.2.1. Changing Relationships
“Everybody’s life changed. And the way they all approached me changed. I thought that before they always treated me nicely but I never realised how nicely they could treat me until I had the strokes.”(Dennis 58)
“….not being able to go out with his friends. Not being able to socialise with them as much as he would. It’s horrible.”(Alfie 17)
“What about looking after you? Can she look after you the same?”(researcher)
“No not really. But I look after her. So it’s alright. I look after myself and I look after her yeah.”(Declan 12)
“Instead of him being there for you, you have to be there more for him.”(Molly 20)
3.2.2. The Lived Experience of the Biopsychosocial Effects of Stroke
“…sometimes she is just alright and sometimes she gets really angry and it’s just confusing. …. Sometimes she just starts to cry and when we ask her are you crying? She says no. But we know that she is crying. She doesn’t want to...”(Declan 12)
3.2.3. Living Differently
“Me and my brothers we built this (points to ramps) out the back so we could get the wheelchair inside. We built this ramp and concreted all around the sides. We’ve just done what we can to make it work more than anything. We put the canopy thing out there as well. So between us we got it so everywhere is liveable. I carried the bed down so.. we just had to get it done.”(Ben 20)
“We used to do so much together, that was the biggest change, biggest shock really. We used shoot together on Tuesdays, if I had stuff to do on the car he would help me with the car, you know everything. We used to go fishing at the weekends, go out on the boat, all sorts of different things so yeah physically more than anything. You can talk to him and still have the same conversation with him. …..I have stopped shooting now. We started when I was at school. Probably about six years maybe we were shooting together. But it didn’t feel right going without him. I didn’t really want to go. So we stopped doing that.”(Ben 20)
“I just want to stay here. To be here. I’d love to be home schooled so I could check on my mum and work at the same time yeah.”(Declan 12)
3.3. Insulating the Family
3.3.1. Supporting Each Other
“She [mother] does most things. We help her out when she needs some help. But I think she’s got a hard job if I am honest. He’s not easy to look after.”(Alfie 17)
“We [young carer and partner] are hoping to have somewhere close to here because I will want to have [sisters] around to give mum a break from them and obviously I want to see them as well. So I want somewhere they can walk to …and if they want to sleep over for a few nights. Somewhere they can walk to school.”(Anna 20)
3.3.2. Protecting Each Other
“We never really speak about the stroke though because it’s a hard subject to touch on, do you know what I mean? It’s hard for him, rather than us.”(Alfie 17)
“Is that your fear that he is going to have another stroke?”(researcher)
“Yeah definitely. And then I am worried about him worrying about having another one, so it doesn’t really stop.”(Laura 17)
“Generally they [young carers] lift my spirits but occasionally I have to act.”(Dennis 58)
“We’ve just done it together. We would rather do it as a family than him be with someone he is uncomfortable with and he doesn’t know.”(Alfie 17)
“It’s just something you try to keep in the family.”(Molly 20)
4. Discussion
Strengths and Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Acknowledgments
Conflicts of Interest
References
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Inclusion Criteria | Exclusion Criteria | |
---|---|---|
Stroke survivors | Aged ≥ 18 years. Living at home in the East Midlands. Returned a survey and consented to be contacted for an interview. Receiving support from a family member or friend aged 11–24 years. Able to communicate verbally and in English. The family member or friend aged 11–24 must also consent to the study. Young people <16 years assent to take part and their parent/legal guardian also consent. | Unable to communicate verbally in English. Living in residential care. Living outside of the East Midlands. Young person supporting them does not consent to take part in the study. The young person aged <16 years of age, does not give assent to take part in the study and/or the parent or legal guardian do not consent. |
Young carers | Young person aged 11–24 identified by the stroke survivor as providing them with unpaid care or support. | Unable to communicate verbally in English. |
The young person and the stroke survivor both consent/assent to take part in the study. | Stroke survivor does not consent to take part in the study. | |
Young people <16 years assent to participate in the study and the parent\legal guardian also consents. | Unable to meet inclusion criteria. |
Interview Topics | |
---|---|
Stroke survivors | Impact and effects of their stroke. |
Perception of the role and impact of caring on their young carers. | |
Support needs of young carers. | |
Suggestions for future improvements of family support. | |
Young carers | Knowledge of stroke and how that was ascertained. |
Insights into the impact of the stroke on the stroke survivor. | |
Involvement in the care of the stroke survivor. | |
Awareness of changes to individual and family roles and dynamics. | |
Perception of benefits and detriments of caring and supporting the stroke survivor. | |
Friendships and other support, including educational and vocational support and other coping mechanisms. | |
Future life and career plans. | |
Ideas for improving services and experiences for future families of stroke survivors. |
Stroke Survivor | Young Carer(s) | Notes |
---|---|---|
Dennis, male, aged 58 years, 366 days post stroke and home 125 days. | Son, Ben (joiner), aged 20, and Ben’s partner, Molly (college student) aged 20. | Lives with wife (primary carer), son and his partner. Wife resigned from paid employment to care. Dennis was profoundly affected by a brain stem stroke. No swallow reflex, fed by a tube directly inserted into the stomach via the abdominal wall, wheelchair dependent. Conservatory converted by the family to a ground floor bedroom. Paid carers daily. Attending rehabilitation unit twice weekly for physio and a shower. |
Geoff, male, aged 46 years, 228 days post stroke and home for 104 days. | Son, Jamie (school child), aged 11, and daughter, not meeting inclusion criteria. | Lives with wife (primary carer) and children aged 11 and 9. No paid carers. Attends hospital for rehabilitation. Home rehabilitation has ended. Profoundly affected by stroke. Wheelchair dependent and communication problems. |
Kevin, male, aged 50 years, 78 days post stroke and home for 70 days. | Stepdaughters, Alfie, aged 17 (college student), | Lives with wife (primary carer), two stepdaughters, a 5 years old son and grandchild < 1 year. Oldest son not resident and declined to participate in the study. Wife resigned from paid employment to care. Problems include: visual, cognitive, concentration, communication, impaired balance and mobility, sensory issues with sensitivity to noise and touch and nerve pain. |
Sally, aged 13 (school child); | ||
son declined to participate. | ||
Jim, male, aged 56 years, 44 days post stroke and home for 40 days. | Granddaughter Laura, aged 17 (college student). | Lives with wife (primary carer) and granddaughter. Co-morbidities include severe depression and Parkinsonism. Physio and occupational therapy at home. Hemiplegia and balance problems but walks unaided. |
Les, male, aged 43 years, 140 days post stroke and home for 56 days. | Stepdaughters, Anna, aged 20 (sales assistant), | Lives with wife (primary carer), three stepdaughters and one of their boyfriends. Wife resigned from paid employment to care. Wheelchair dependent, communication and cognitive impairment, clinically depressed. The bed and commode were in the lounge, which was the only shared space for the family. Paid carers attending daily. |
Lisa, aged 15 (school child). | ||
Sue, female, aged 41 years, 124 days post stroke and home 14 days. | Sons, Declan, aged 12 (School child), and older brother, declined to participate. | Lives with partner (long distance lorry driver away during the week), two sons aged 17 and 12. The 12 years old provides most care during the week. The 17 years old, in full-time apprenticeship and also a primary carer, declined interview. Co-morbidities including rheumatoid arthritis and renal failure, two previous strokes. House is very isolated with no internet connection. Hospital bed and commode in the only downstairs room. Washes at kitchen sink. No paid carers due to remote location. |
Jan, female, aged 60 years, 127 days post stroke and home for 127 days. | Daughter, Faye, aged 14 (school child), and son, Jack, aged 20 (university student). | Lives with husband and two children. Oldest son at University in term time. Husband has severe depression and both children are on autistic spectrum. Fully mobile and self-caring. Some continence problems and depression, very verbose and difficulties concentrating since stroke. |
Themes | Sub-Themes |
---|---|
The lives of young carers. | Tasks of caring. |
Support needs. | |
Benefits and detriment of caring. | |
Impact of stroke. | Changing relationships. |
The lived experience of the biopsychosocial effects of stroke. | |
Living differently. | |
Insulating the family. | Supporting each other. |
Protecting each other. |
Category of Tasks | Examples of Tasks |
---|---|
Practical tasks | Shopping |
Cleaning | |
Cooking | |
Making drinks | |
Washing and ironing clothes | |
Walking the dog | |
Pet care | |
Cleaning floors | |
Pushing the wheelchair | |
Helping the stroke survivor to mobilise Fetching and carrying things | |
Care of younger siblings and taking them to school | |
Emotional caring | Keeping stroke survivors company Listening to them |
Keeping spirits up | |
Motivating them | |
Rehabilitation | Physiotherapy |
Putting splints on | |
Speech therapy | |
Personal care | Washing |
Dressing | |
Fetching and emptying commodes and urinal bottles | |
Shaving | |
Washing and cutting hair | |
Supporting the well parent | Backfilling household chores |
Listening to them | |
Trying to be “good” and not complaining about cancelled plans, holidays, etc. |
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Cameron, T.M.; Walker, M.F.; Fisher, R.J. A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors. Int. J. Environ. Res. Public Health 2022, 19, 3941. https://doi.org/10.3390/ijerph19073941
Cameron TM, Walker MF, Fisher RJ. A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors. International Journal of Environmental Research and Public Health. 2022; 19(7):3941. https://doi.org/10.3390/ijerph19073941
Chicago/Turabian StyleCameron, Trudi M., Marion F. Walker, and Rebecca J. Fisher. 2022. "A Qualitative Study Exploring the Lives and Caring Practices of Young Carers of Stroke Survivors" International Journal of Environmental Research and Public Health 19, no. 7: 3941. https://doi.org/10.3390/ijerph19073941