Added: Mikela Kohr - Date: 02.11.2021 03:31 - Views: 31308 - Clicks: 5164
The concerns of young stroke survivors are not well known. The aim of this paper is to draw on data from a larger study to show that young women who survived a hemorrhagic stroke desire access to peer support, but there is not widespread access to peer support. Open-ended interviews were conducted with an international sample of 28 women Looking a lady to stroke me n help learn about their poststroke experiences and were analyzed qualitatively for common issues and themes.
A prominent theme across the interviews was the ificance of age-similar peer support. Participants discussed feeling alone and misunderstood and wanting to have access to peer support. Although stroke is more common in old age, it is not unusual for a young person under age 65 to have a stroke. For people aged 20—44, an American study found an incidence rate of 23 perper year [ 2 ]. Regarding stroke in children, estimated incidence rates vary between 1.
Young people appear more likely than old people to have a hemorrhagic stroke [ 24 ]—typically but not always caused by a ruptured aneurysm or arteriovenous malformation AVM ; and survivors of hemorrhagic stroke are likely to be left with residual impairments that are not immediately obvious [ 5 ]. For example, cognitive impairments are commonly found as a long-term consequence of stroke at a young age, although this remains an understudied topic [ 6 ]. Young survivors of stroke not only contravene popular ideas about stroke as a disease of old age, but they must often negotiate a social world in which there is little understanding that not all impairments are visible.
This situation can create ificant psychological distress. The present paper discusses another theme to emerge from this research—the need for peer support for this population. The focus is on what they say about feeling alone and misunderstood and wanting to have access to peer support. A considerable body of literature suggests that a well-developed social support network can enhance health-related quality of life [ 10 ].
For example, women tend to learn within the context of connections with others [ 12 ], and women are likely to rely upon nonfamilial support networks to discuss feelings about illness [ 13 ]. This is particularly the case when dealing with a condition that is potentially stigmatizing or poorly understood by the lay public. As well, studies of members of cancer support groups show that they find their peers to be more supportive than family and friends [ 15 ].
Regarding people with stroke, there is some evidence that peer support groups are useful for helping to come to terms with what happened and reducing a sense of isolation [ 16 ]. Studies of the use of peer support by women with breast cancer show that they find it beneficial to meet and talk to another breast cancer survivor, regardless of their marital status [ 17 ].
Marital status was also irrelevant in a study of women with multiple sclerosis [MS] who were trained to offer telephone peer support, where it was found that the women benefited greatly from helping others with MS [ 18 ].
Altogether, research shows that peer support is a unique type of social support that can help to enhance psychological well-being as women cope with illness, disease, or a stigmatizing health condition. In the literature, however, a discussion of peer support for young stroke survivors has yet to be developed. Indeed, there seems to be little recognition of a need for peer support on the part of young stroke survivors.
In the U. Different Strokes also offers telephone peer support, newsletters, an interactive website, and a quarterly newsletter. As such, it offers resources that are unparalleled elsewhere in the English-speaking world. In North America, several internet sites offer support to young stroke survivors.
One site invites individuals to write a brief narrative for posting, and a content analysis of selected narratives posted there shows that both male and female survivors of an AVM hemorrhage are interested in sharing experiences with other survivors, although men are less likely than women to post a narrative [ 19 ]. Such sites can offer invaluable support to survivors [ 20 ], but are of no use to those who do not have ongoing access to the internet.
As well, even those who visit these sites find that they would still like to meet their peers face-to-face. In North America, however, there are few peer support groups that meet face-to-face. Participants have consented to the use of their comments discussed in this paper.
A diverse sample was sought in order to examine the extent to which there were commonalities and differences across a of variables. The aim was to recruit a sample reflecting diversity in terms of geographical location, socioeconomic status, race, ethnicity, age at stroke but all were required to have experienced the stroke before age 50and length of time since stroke but all were required to have experienced the stroke at least two years prior to being interviewed, so that they would have had some time to adjust to what had happened.
To this end, a purposive sample of 28 participants was recruited from Canada, the United States, Scotland, and England. Recruitment proceeded using a variety of strategies: a notice was posted both in a newsletter for young stroke survivors published by Different Strokes and on several internet support sites; women who had published s about aspects of their experiences were contacted; and physicians were asked for assistance with contacting patients. All but two of the resulting sample are Caucasian, as well, two self-identify as Jewish, three as of Italian origin, and one as Portuguese.
At the time of the interview, all were from three to 33 years after stroke, so that each had learned to accommodate for residual impairments and could reflect upon poststroke experiences. Residual impairments varied but were primarily not visible to others—for example, hemiparesis or cognitive impairments such as aphasia. As well, almost all participants commented on easily becoming fatigued.
As shown in Table 1participants were between the ages of eight and 49 at the time of stroke and between the ages of 19 and 57 when interviewed. Twelve participants Looking a lady to stroke me n help married or partnered at the time of stroke and were with the same partner at time of interview. As well, 15 spontaneously indicated that they would like to have peer support, six discussed their experiences of attending a peer support group meeting, and seven did not discuss a need for peer support.
Data were gathered using unstructured, intensive interviews. Interviews ranged from one to three hours in length, with most lasting one and a half hours, and all were tape-recorded for later verbatim transcription.
Participants were asked to talk about whatever they considered important for understanding their poststroke experiences and were provided with little direction, although the author encouraged each participant to comment on certain common topics: experiences surrounding the actual event of stroke and recovery; experiences with the medical profession; being or not being recognized as disabled; self-image; relations with others; and perceptions of the ificance of the stroke. Participants addressed these topics unevenly; there was no uniformity in terms of what was discussed in each interview.
Coding and analysis proceeded using grounded theory methods [ 21 ]. The process can be characterized as open coding [ 22 ] and every part of each interview was coded according to what the participant was talking about. In reviewing the work completed by assistants, the author found that all understood and coded the interview transcripts similarly.
Analysis proceeded through constant comparison of interviews and coding [ 22 ] so that it became possible to discover common issues and themes. articles have discussed two themes that clearly emerged from the data: the development of new priorities [ 23 ] and the problem of invisible disabilities [ 8 ].
As well, the author organized a selection of interviews into discrete narratives about the impact of the stroke and published these as a monograph [ 9 ]. The present paper focuses on another issue that clearly emerged from the interview data: the ificance of age-similar peer support.
In discussing the ificance of age-similar peer support, this paper focuses on the recurring theme of feeling alone and misunderstood that was identified in all but six interviews and the desire for peer support that was discussed by all but seven participants. The benefits of reaching out to others are also briefly discussed. With few exceptions see Table 1participants talked about their interest in meeting and talking to another person who had had a stroke at a relatively young age.
Tanis, for example, was 17 when she had an aneurysm hemorrhage. She said.
I can only speak for myself, but I just felt so alone. And so isolated. Um, and that—maybe it was selfish, but—that nobody understood. I would have, I would have gone for the support. Interview 30 years after stroke. Similarly, Barbara who was 17 at the time, also, felt set apart from her peers because of what had happened to her.
She talked of searching for literature that would explain her experiences to her, finally coming across the following:. But, and it was about um, young people who had survived cancer. And it talked about them being a charmed circle survivors and how their experience was different from [pause] others. Later in the interview, Barbara used the metaphor of going on a journey to elaborate on what it was like for her to know no one else who shared her experiences:.
And so, it really changes your experience, or you do not have the opportunity to, discuss it or share it. And, and that was very difficult to try to explain the, the event to—what I had seen, what I had experienced—to anybody because they had nothing to reference it to. So, I found that was [pause] it helped to explain to me what I was experiencing. The youngest participant, Deirdre, was 8 when she had a stroke.
She went from being academically advanced for her age to having ificant cognitive difficulties. She talked poignantly about feeling isolated and misunderstood at school:. I did feel isolated. Interview 11 years after stroke. Deirdre talked about how distressed she was when she was younger that she did not know anyone who had had a stroke, but then she became animated in talking about meeting someone else on the internet:.
My age. I only know her, I only know her across the net but … her parents actually live in … the town where [I go to college now]. Similarly, Liz, who was 17 when she had an aneurysm hemorrhage, was extremely angry about people who said to her that they understood what she had been through:. Because I cannot sit and listen, I just wanted to punch them in the face when they said that. You do NOT. Interview 33 years after stroke. As the preceding excerpts suggest, participants who were especially young at the time were quite clear about feeling different from others, and they continued to feel this even decades later.
Yet, even those who were adults at the time of stroke talked of feeling different and searching for peer support. Brenda, for example, was 46 when she had an aneurysm hemorrhage. In preinterview communications, Brenda said that she would like to meet others like herself, and the author recommended visiting a supportive internet site.
She did so, and wrote. Thank you Sharon for sharing this website with me, I wish I had this kind of information when I first took ill 7 years ago. I can relate to so many of the stories that were written. When interviewed a year later, Brenda talked about searching for age-similar peer support where she lived but she was unable to find anything interview 9 years after stroke. Her interview represented the first time she had ever met someone else who had had a stroke at a young age, and she was pleased to be able to talk about her struggles with someone who had similar experiences.
For example, we had the following exchange:. Brenda: … the days [sigh] you struggle to even TALK so you have to, your brain is working all the time, so the more you work the brain, the tireder you GET [laughter]! Author: Uh huh. Yeah, I, well, I know exactly what you mean, that everything—and trying to explain it to someone who does not know what—. Jean, who at age 49 was the oldest at the time of stroke, started attending meetings for young stroke survivors when a local group formed.
Interview 6 years after stroke. Another who discussed the benefits of age-similar peer support was Grace, who was 35 when she had a stroke. Grace began attending meetings at her rehabilitation hospital while still an in-patient, and she continued attending until she moved away from the area four years later. When she first found out about the group, she said.
I was surprised. I really thought strokes happened to old people and that I was just an aberration and then I see all these young people. I, I, uh, looked forward to seeing those people every one. The majority of participants did not have access to a group that met face-to-face Table 1. Yet, Ida was left with cognitive challenges that made it difficult for her to take in a lot of written information at once, and she said that she would rather be able to interact face-to-face with her peers interview 7 years after stroke. Sandy is another example of someone who would have loved to have had face-to-face peer support.
She was 38 when she had an aneurysm hemorrhage, and she wanted to meet with age-similar peers:. And I do not belong here, and why am I coming here? Interview 4 years after stroke. Helen, who had an aneurysm hemorrhage at age 32, was apparently left with no lasting impairment, although her sense of smell has suffered, and her stroke experience had a profound psychological impact. I kind of felt like I wanted to talk to somebody. Um, somebody that had had it or somebody that knew about it. And, you know, they did not think that I fell into their mandate.Looking a lady to stroke me n help
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Young women and stroke