“I’ve never experienced this before, I don’t know what I need”– a qualitative study on social support and self-care during the first year after an aneurysmal subarachnoid hemorrhage

Abstract Purpose To describe perceived support, support needs and self-care among individuals during the first year after an aneurysmal subarachnoid hemorrhage (aSAH). Material and methods The study had a qualitative descriptive design with a deductive approach using the concepts of social support and self-care. The informants (n = 16) had been treated for aSAH at a university hospital in Sweden and were interviewed one year after the event. The interviews were transcribed verbatim and a manifest directed content analysis was performed. Results The findings revealed great variation in the narratives, both regarding the support received and the support desired, as well as the described self-care abilities. All codes were covered by the predefined categories and subcategories: social support (including esteem/emotional support, informational support, social companionship, instrumental support) and self-care (including self-management, self-monitoring, symptom management, self-efficacy). Conclusions Not being offered the support needed aggravated the possibility to manage the new life after aSAH. The confidence in self-care abilities was influenced by symptom control and how much life had changed in comparison to before the aSAH. Educational efforts are suggested to facilitate the transition from hospital discharge and to promote specialized rehabilitation at home and self-care abilities. Implications for Rehabilitation Early supported discharge can be beneficial for aneurysmal subarachnoid (aSAH) patients, including a discharge plan with documented responsibility for continuing rehabilitation and information on follow-ups. Generic rehabilitation programs need to be adapted to a person-centered approach due to the large variation in aSAH patients’ support needs and self-care abilities. When planning educational efforts for aSAH patients, the use of a workshop format in the company of others affected is suggested, to share experiences and increase the sense of self-efficacy.


Introduction
Globally, stroke is the second leading cause of death and disability, and subarachnoid hemorrhages (SAH) account for approximately 9% of all stroke incidents [1].The most prevalent etiology for spontaneous SAHs is a ruptured intracranial aneurysm [2], which is more common in women [3].Long-term consequences are common after aneurysmal SAH (aSAH), for instance, mental fatigue [4], affected cognition, mood and emotional control [5][6][7], and reduced quality of life [8].The mean age for aSAH rupture is approximately 50-55 years [3], in comparison to about 70 years in other stroke types [9].The younger mean age means that aSAH to a large extent strikes people who are in their prime working years, and the long-term consequences, therefore, impact social participation and the ability to return to work [10][11][12].
Previous quantitative studies have shown that most persons surviving an aSAH report unmet needs years after the onset [10,13].Higher numbers of unmet needs were also significantly associated with poorer community integration [10].The most common unmet need has been identified to be a lack of information or advice [10,13] concerning for instance the persons' health, benefits, home aids and home adaptation [13].Reported unmet informational health needs pertained to advice about the SAH, fatigue, affected cognition or mood, anxiety, headache and general pain [13].In addition, unmet needs regarding social services, formal health services, housing, work, physical exercise and social activities have been reported [10].
Social support can serve as a stress buffer in demanding situations when an appropriate coping response is not available.The perception that others will provide necessary resources can increase the perceived ability to cope with imposed demands [14].Cohen & Wills [14] describe four types of social support, each operating as a stress buffer.Esteem/emotional support implies communicating to individuals that they are accepted despite any difficulties or personal shortcomings.Furthermore, that they are valued for their own worth and experiences.Informational support is when an individual gets help to define, understand, and cope with a problematic event.
Social companionship means spending time with others in recreational and leisure activities.This is stress-reducing by distracting individuals from worrying or facilitating positive affective moods.Instrumental support is the provision of material resources, needed services and financial aid, and reduces stress by direct resolution of instrumental problems [14].
However, persons should not be considered passive recipients of support.Ideally, support providers should empower individuals to take an active part in the responsibility for their health.Richard & Shea [15] delineated concepts associated with self-care and described their relationships and how they overlap.Self-care is a broad concept incorporating self-management, self-monitoring and symptom management.It is defined as the ability to care for oneself and perform necessary activities to achieve, maintain or promote optimal health and can be regarded as a continuum with complete reliance on healthcare at the one extreme and complete independence on the other [15].The sub-concept Self-management refers to the individual's ability to manage symptoms, treatments, changes in lifestyle, and psychosocial and cultural consequences of health conditions, in partnership with family, community and healthcare services.Self-monitoring and symptom management are both aspects of self-management.Selfmonitoring is the awareness or assessment of specific symptoms or physiological parameters of a health condition that indicate a need to act or to contact a healthcare provider, whereas Symptom management is the awareness of and responses to subjective changes physiologically, cognitively or functionally to avert negative outcomes [15].Self-efficacy is viewed as an antecedent that mediates or moderates self-care.It is defined as the individual's confidence in the ability to perform self-care activities, in terms of own perception of ability, not actual performance.Self-carerelated self-efficacy is influenced by age, gender, support systems and perceived control, and the perception is dynamic, i.e., changing with knowledge and experience [15].Self-efficacy has been found to be significantly related to rehabilitation outcomes after stroke, where lower self-efficacy was associated with poorer wellbeing, lower illness acceptance, poorer functional status and instrumental activities of daily living [16].
It has long been known that individual and psychological factors are mediators for successful self-management in stroke [17].Previous studies have shown that self-management interventions benefit symptom management of stroke patients [18] and that self-management programs after stroke improve quality of life and self-efficacy [19].However, descriptions of specific self-management interventions are often brief and vary between studies, and the level of patient involvement is often unclear [20].Still, individualized rehabilitation interventions e.g., with the individual's own goal settings, seem to have a positive effect over time regarding recapturing self-care capabilities for persons that have experienced ischemic or hemorrhagic strokes [21].But the results from previous studies on self-care, self-management and self-efficacy are elicited from diverse stroke populations, mostly ischemic strokes, and primarily concern older patient groups [16][17][18][20][21][22][23].
Our previous research suggested that aSAH can be a lifechanging event [24].Since the majority of those affected by aSAH are in their working years, and the body of knowledge on support after aSAH, to date, has mainly consisted of quantitative studies, there is good reason to qualitatively address how those affected by a previous aSAH view their situation related to support and self-care.Therefore, the aim of this study was to describe perceived support, support needs and self-care among individuals during the first year after an aSAH.After literature reviews, the buffering model whereby social support alleviates stress, as proposed by Cohen and Wills [14], and the conceptualization of selfcare by Richard and Shea [15] were chosen as frameworks due to their relevance to the study aim and context.

Material and methods
This was a qualitative descriptive study with a deductive approach, as described by Hsieh & Shannon [25].The consolidating criteria for reporting qualitative research checklist was used to ensure quality reporting in this study [26].

Sample
The informants (n ¼ 16) had been treated for aSAH at a university hospital in Sweden and were recruited from the neurosurgical clinic's registry one year after the event, in connection with a medical check-up.The inclusion criteria were Glasgow Outcome scale (GOS) [27] score 3-5 at hospital discharge and being able to communicate and sign an informed consent in Swedish.Maximum variation in sampling was used for sex, age, residence areas (urban or rural areas) and treatment regimens (open surgery or endovascular procedure).A total of 18 potential informants were contacted by phone and received oral information.Of these 18 former patients, 16 agreed to participate and written information including an informed consent form was sent to their home addresses.When the informed consent forms were returned, they were once again contacted by phone to decide the time and place for the interview.This study is part of a larger project, and the informants have been thoroughly described elsewhere [24].

Data collection
An interview guide with open-ended questions was used, with targeting questions concerning perceived support and support needs in the aftermath of the aSAH, from the time of discharge from acute in-hospital care onwards (see Supplementary Appendix 1).The interviews were conducted according to the informant's preference, either in a secluded room at the hospital (n ¼ 14), or by phone (n ¼ 2).The median duration of the interviews was 42.5 min (ranging 24-75 min).All interviews were conducted by the first author, who is well-trained to undertake individual interviews and has extensive research experience concerning patient-reported outcomes after aSAH.The interviews were audio-recorded, transcribed verbatim and field notes were taken.The data collection was concluded in December 2015.

Ethical considerations
The study was approved by the Stockholm regional board for ethics of research (registration number 2014/2182-31/4).All informants signed an informed consent form.The study information emphasized voluntary participation, confidentiality was guaranteed, and the transcribed interviews were pseudonymized with interview-specific code numbers.Only the first author had access to the identifying code list.

Data analysis
A deductive, directed content analysis as described by Hsieh and Shannon [25] was applied.First, the interview transcripts were read several times, and the manifest content (i.e., obvious components in the interview text) [28] concerning perceived support, support needs and descriptions of self-care was highlighted.This was important to be confident that corresponding to the aim, nothing described by the informants was left out from the analysis.Thereafter coding was applied, and subcategories and categories were named from the four types of social support as defined by Cohen and Wills [14] and sub-concepts of self-care according to the definitions by Richard & Shea [15].Additionally, any descriptions from the interviews that corresponded to the aim of the study but could not be sorted into any of the predefined types of social support or sub-concepts of self-care were labeled, according to content.They were then discussed by all authors to determine if they were a different quality of an existing social support type/sub-concept or represented a new one [25].
During the analysis, analysts' reflexivity (i.e., assumptions and preconceptions) was considered [29].The authors' preunderstandings are based on long-lasting professional experience as registered nurses and researchers within neurosurgery care, rheumatology care and cancer care.To strengthen the study's credibility, investigator triangulation was used throughout the whole process with active collaboration between all authors [29].Each interview was coded by at least two of the authors, and the codes were thereafter compiled and discussed among all authors.The first and last authors had the main responsibility for the analysis.Relevant quotes were translated into English by the first and last authors and are presented with the informants' pseudonymization numbers to support and substantiate the findings [30].

Results
In this study, 16 persons, 12 women and four men (median age 51 years, range 30-74 years), contributed their experiences and perceptions about one year after aSAH (in median 389 days after aSAH onset).All informants were living at home at the time of the interview.Characteristics of the informants are presented on a group level to ensure confidentiality (Table 1).All codes from the interview transcripts could be sorted into any of the predefined subcategories and categories (Figure 1).

Esteem/emotional support
The informants described different ways they were emotionally supported and by whom.Significant others (parents, adult siblings, friends, and workmates) were supportive, listened and showed availability when informants needed support or someone to talk to.The informants were encouraged and cheered up.They said that they were accepted as they were by their significant others, despite being different than before the aSAH: You learn very well who your real friends are.Who likes you for who you are, and not because it was fun to have a party buddy.Those who were real friends are still there.(Informant 6, age at interview: 30-39 years) In contrast, there were also situations mentioned when informants are not felt they were accepted by significant others due to personal shortcomings in the aftermath of the aSAH, for instance, affected cognition: My daughter became angry when I made a mistake.She [the daughter] thought 'stop now, I can do this better'.So, she and I argued about such things.(Informant 10, age at interview: 40-49 years) There were also expressions from the informants of wanting someone else to talk to, not the closest supporters, because they felt like a burden when repeatedly contacting with a need for a supportive talk:

Informational support
Many descriptions from informants related to unmet informational support needs or lack of informational support.Descriptions included not having a clue what to ask for, not knowing their current or future rehabilitation needs, not having received information, having met the wrong physician (general practitioner instead of neurologist), and having met too many different physicians.
I went to six different GPs before I found someone who actually listened to me, and didn't sit and look at their computer, and talked to me.(Informant 2, age at interview: 40-49 years) The narratives pointed to not having received the information or support that was desired (regarding the surgical or endovascular procedure, nutrition etc.), or have received too much of such information (like being shown x-rays of the brain) without wanting to.The need to talk to someone was emphasized, like a psychologist, when having been so close to death.The informational support was at times perceived as misguided.One area of unclear and misguided information concerned sexual activities, such as when it was appropriate to resume a previous sex life: Usually, the most helpful informational support after hospital discharge came from the general practitioner, occupational therapist, significant others, counsellor, rehabilitation unit and the Swedish Social Insurance Agency.These support providers said that the healing process would take time, explained when it was reasonable to return to work, but also helped patients to understand and cope with the whole situation.
They came to my home, so they did.So, then I had … first the physiotherapist, a very nice man, very kind.Then it was an occupational therapist, and I was offered a counselor.But then I already had one from the occupational healthcare, who I knew, and then I can talk to her.And go through everything with her.[ … ] I don't know, it feels like everything is so damn good in a way; but still, it's not.I still get panic attacks.I haven't had those before.(Informant 6, age at interview: 30-39 years)

Social companionship
The informants described several different types of recreational and leisure activities, such as going to the movies, physical exercise, travel or just small talk with friends, describing a rich social life that facilitated a positive mood: We old ladies do a lot; they are all retired, and I am also retired.So, we take the opportunity to have fun.The informants also said that they socialized through telephone conversations to a greater extent in comparison to before the aSAH.This was perceived as a possibility to keep in contact with significant others despite mental fatigue and it felt stressreducing and distracting for them.

Instrumental support
Like informational support, descriptions regarding unmet instrumental support were evident, such as being told to take care of the household on one's own or that significant others helped out, instead of a domestic worker.Furthermore, informants' remarks included that it was not possible to ask for help with cooking and cleaning when owning your own house.The informants described being initially contacted by a physiotherapist, occupational therapist or the Swedish Public Employment Service, but after that contact there was no kind of follow-up.One informant described wanting to use the transportation service for disabled persons which was turned down.Instead, home care service was offered, since the physician thought she could travel by public transportation: I wasn't allowed to drive for six months.And I said: 'but can't you give me a disabled person's travel … [pass] then?'I said to the doctor at the rehab unit.No, he didn't do that because he thought I would be able to travel by public transportation.[ … ] I said it 'I don't need the disabled person's travel service for the rest of my life, it's just for these six months'.'No, but you can get the home care service'.(Informant 3, age at interview: 50-59 years) Individual rehabilitation needs (such as the need for physiotherapy, occupational therapy or memory training) were at times perceived as unmet.Limited available resources or receiving no rehabilitation at all were described, due to not being ill enough according to healthcare professionals.

But then he sent a referral to the physiotherapists [ … ]. And then [ … ]
they called and said that I was not ill enough to receive their help.(Informant 13, age at interview: aged 30-39 years) Descriptions of misguided instrumental support included not being able to go out, and a feeling of being locked up at the nursing home.Furthermore, being offered help at home but only with information, for instance, information on how to organize cleaning, not receiving any actual help to perform any cleaning tasks, was also described.On the other hand, being offered support but turning it down was mentioned by informants.This included not wanting physiotherapy or declining other types of rehabilitation activities due to the long travel distance.The home care service was also turned down, such as help with shopping.
Instrumental support that was received encompassed help from a neuro team, including various health professionals such as an occupational therapist, physiotherapist or counselor.In addition, support from significant others or relatives and neighbors with household work, shopping and paying bills was described.
Mum and dad helped me.Mum said: 'you just call, and we'll buy food for you'.[ … ] Above all, they have helped with the food.I want meat but I can't afford to buy it' (laughs).And then, she bought me such wonderful pieces of meat, I was completely overjoyed.(Informant 6, age at interview: [30][31][32][33][34][35][36][37][38][39] The support from the Swedish Social Insurance Agency was perceived as beneficial, and being on sick leave gave time to rest and a sense of freedom.It was also described that the support received was good enough, and some were even surprised about it. I am surprised in the other direction; I think I have received so much help that I had to slow it down a bit.(Informant 14, age at interview: 60-69 years)

Self-management
This subcategory contains broad aspects of the informants' preferences when managing everyday life.The informants said that they wanted to manage by themselves and declined offers of support from significant others, the community or healthcare: I don't even want help because I do it my way.(Informant 15, age at interview: 40-49 years) They said that they tested their ability to perform all types of housework also as soon as they were discharged from hospital, and they became confident when they could do this work.Self-monitoring There were few reports showing awareness of specific symptoms that the informants monitored by themselves, e.g., few said that they were careful that their blood pressure was regularly checked and that they were aware that elevated blood pressure is a risk factor for aneurysm development and aneurysm rupture.One informant had not been able to attend a previous radiological check-up and was concerned, and therefore wanted to have the next scheduled check-up as soon as possible to be informed "how the inside of the head looks" (Informant 16, age at interview: 50-59 years).There were also expressions of lacking selfmonitoring abilities.One informant stopped taking epilepsy medicine on his own initiative; thereafter, he had a seizure but chose not to seek medical care: I'm a little too fearless sometimes in certain situations.When I had seizures last time, he [the GP] wasn't happy with me, because I hadn't sought medical care.(Informant 14, age at interview: 60-69 years)

Symptom management
The informants provided rich descriptions of subjective psychological and cognitive changes and how they responded to those to avert negative outcomes.Strategies to manage memory problems included using more structure in everyday life, entering medication times as reminders in a cell phone or immediately noting or listing things they needed to remember.These memory notes were put in strategic places in the department, or for instance on the windshield of the car as constant visual reminders.
The whole apartment is full of notes.I always tape them on the door, the mirror and where I go, to be able to see all the time.(Informant 15, age at interview: 40-49 years) Several strategies to manage mental fatigue were described: choosing to stay at home and avoid crowds, only socializing with a few empathetic friends, taking a nap during the day to be able to meet friends in the evening, limiting conversations to avoid the need to concentrate for a long time, or listening to an audiobook when unable to follow the plot in an ordinary book.Strategies used for noise sensitivity were to avoid noisy environments and to use earplugs at home: He [the husband] was practically not allowed to move around in the apartment.So, [I used] earplugs and a blindfold.And he couldn't wash dishes when I was resting.(Informant 12, age at interview: 30-39 years) The informants also used stress-reducing strategies: leaving the cell phone alone, reducing the number of activities per day as well as having shorter working hours.
I get stressed if … I want to know about things in good time, and I don't plan a lot of things at all because I kind of don't have the energy.And I have friends who want us to meet.But now I feel that no, it doesn't work, so I have sort of told them that I don't know when I will have the energy, but we can sort of … I still want us to be in touch and so on.But I don't know when I will have the energy to meet.(Informant 13, age at interview: 30-39)

Self-efficacy
The informants' confidence in own ability was described on a continuum varying between the two endpoints of being confident versus being uncertain of their own self-efficacy.The perceived confidence seemed to be influenced by how well they were able to control their current symptoms and how much life had changed in comparison to before the aSAH.Some said that they were convinced they could handle everyday life and self-care: It doesn't matter if you have difficulties; it depends on how you deal with them.I have a certain ability to look at everything in a positive way.(Informant 14, age at interview: 60-69 years) Others described uncertainty regarding their own ability based on experiences of profound changes in comparison to their previous life and abilities: Lately I have started to think, am I going to be fine?[ … ] Then the thought comes, will it always be like this?Will it get better?(Informant 5, age at interview: 50-49 years) The informants also said that their confidence in their own ability did not match their actual performance, for instance describing themselves as the driving force but at the same time experiencing large limitations in everyday life: I'm the one who initiates, I'm the one who drives things [ … ] Now that I know it's been a year, I feel like I have major limitations, so … now I'm not sure I'll be able to work full time, maybe ever.(Informant 12, age at interview: 30-39 years)

Discussion
The aim of this study was to describe perceived support, support needs and self-care among individuals during the first year after an aSAH.The findings display a great variation from the narratives, both regarding the support received and the support desired, as well as the described self-care abilities.All codes were covered by the predefined categories and subcategories named by the chosen concepts of social support [14] and the sub-concepts of self-care [15].Interestingly no new aspects emerged, although some aspects included richer descriptions from informants, and data saturation [31] was achieved.

Empowerment being evident in the findings
A concept that is relevant to mention, in light of the present findings, is empowerment.It enables individuals to influence their own health and take control of issues they themselves define as important.A Cochrane review on self-management programs after stroke concluded that people undergoing such programs felt more empowered to take control over their lives, in comparison to people who received usual care, who to a larger extent were dependent on others for satisfaction with life.Moreover, no risks or negative side effects were associated with such programs [19].Antecedents to empowerment are the individual's own perceived knowledge, skills and attitudes on issues they define as important [32].As our previous research found, aSAH can be a life-changing event in many ways [24], and as the present study suggests, support might be needed in various areas of life to regain beliefs in one's own capabilities.In a randomized trial including a mix of ischemic and hemorrhagic post-stroke participants, self-efficacy, self-management behaviors as well as functional recovery were improved by an empowerment intervention [33].In the present study, empowerment was somewhat evident in the sub-concept of self-management, where the informants described that they felt confident when they could manage different tasks, such as performing housework.However, the confidence seemed also to be influenced by how well they were able to control their symptoms and how the individual's life had changed.Thus, the aspects of empowerment described by the informants during the first year after aSAH seemed fragile.
The importance of self-efficacy is confirmed by an interview study, conducted four to six months after ischemic stroke, where participants who described a sense of control over and strong faith in their own ability to overcome challenges of the stroke, also reported a better health perception [34].Furthermore, in a study using focus group discussions (conducted more than three months post-stroke), participants described self-management as a way of maintaining independence and autonomy to promote recovery [35].
The importance of both the environment and a person-centered approach, i.e., being involved in the planning of individual rehabilitation possibilities and not only being informed about existing generic rehabilitation models, has previously been stressed [36].This is in congruence with our findings, where descriptions of not being offered various types of support, and thereby not being able to manage the new life after aSAH were noticeable.The reported unmet support needs confirm that additional service and support are required for persons recovering from aSAH [13].

Pedagogical aspects and implications
Since it was evident that some support, such as informational and instrumental, was perceived as misguided, non-existent or at the wrong level in the present study, the coordination and pedagogical aspects are crucial to elaborate on.Who should do what, and when, during the process?These issues need to be considered but can be complicated by different organizational structures in the healthcare sector, financial constraints, and shortage of staff.Still, the transition from hospital to home is critical, and a risk for complications is apparent, as evident from a concept analysis [37] on the topic of instrumental support.Furthermore, support persons are often needed for the affected individual in order to assist with recovery and gaining independence [37].In our view, providing those support persons with information about aSAH and what is expected of them and doing it using a personcentered approach is essential.Still, the nurse's perspective on available support is crucial in order to meet the needs of the patient after discharge [37].In addition, and as our findings imply, the importance of registered nurses and other healthcare professionals using their pedagogical skills is apparent when communicating with those living with the consequences after an aSAH and assisting them in preparing for daily life, for example, ensuring they can perform self-care outside the hospital.Qualitative research among individuals affected by stroke has also shown that learning is important i.e., learning was viewed as a basis for improving functioning and handling uncertainties during recovery [38].Based on this, we recommend that educational efforts are directed towards affected individuals before discharge from the hospital, for instance in terms of early supported discharge (ESD).ESD is a multidisciplinary intervention that accelerates discharge from the hospital and provides stroke specialist rehabilitation and social support at home [36,39].Existing evidence shows that ESD appears to be beneficial for people with mild to moderate disability after stroke and probably reduces the length of hospital stay [40].In all European countries, including Sweden, there is a shortage of ESD services [39].According to the Swedish stroke register, most ischemic stroke patients nowadays are cared for at stroke units, but an expansion of ESD services has not followed [41].Moreover, subarachnoid hemorrhage diagnoses were recently (during 2022) included in the Swedish stroke register, thus longitudinal data on ESD services after aSAH is lacking.Additionally, Swedish aSAH patients are usually cared for at neurosurgical units, where ESD historically has not been used.
Patients and their significant others need information before hospital discharge, including a discharge plan with documented responsibility for continuing rehabilitation and follow-ups.How this information is best delivered remains unclear, but the active involvement of both patients and their significant others is beneficial, since it provides knowledge, increases patient satisfaction, and reduces depression [39].Some of the above-mentioned suggested educational efforts could preferably be provided in workshop format and with others affected, in order to share experiences.Shared experiences, i.e., meeting people that have had a stroke who are achieving their goals and making progress, have been described as increasing the sense of self-efficacy [42].

Methodological considerations
As in all scientific work, there are several steps in the qualitative research process that might have methodological implications for the results [30].Firstly, the data collection process, the interview guide and the researcher conducting the interview contributed to strong dependability in this study, since all interviews followed a semi-structured interview guide, and were conducted by the same researcher, who had profound clinical experience in the field [30].During the recruitment, a variety of ages, sex, residence areas and treatment regimens were considered, and all informants were treated at the same university hospital.The structure of the rehabilitation and primary care health teams varied according to the participants' individual needs, local routines and home addresses, but was not accounted for in the recruitment process.Using investigator triangulation and the different professional experiences in the group, both clinical and research, was an asset in the analysis and writing process [29].
Secondly, a well-described analysis process is crucial.In this study, we used the predefined concepts of social support as described by Cohen and Wills [14] and applied them in the context of aSAH, together with the concepts of self-care described by Richard and Shea [15].It might be considered a limitation to use two theoretical frameworks, but the rich data on informants' own power and capacity, and descriptions of their own need for control could not be captured by the concepts of Cohen and Wills [14], thus adding the concepts on self-care, as described by Richard and Shea [15] consolidated the results.
Thirdly, the presentation of informants (Table 1) and the findings with supporting quotes enables the reader to follow the process, making it possible to assess the level of transferability, and further increasing the credibility of the results [43].

Conclusion
The first year of recovery from aSAH is a complex process and the findings display large variations regarding what support the informants perceived they needed, what support was received and their perception of their self-care abilities.The confidence in self-care abilities seemed to be influenced by symptom control and how much life had changed in comparison to before the aSAH.Not being offered the support needed or desired aggravated the possibility to manage the new life after aSAH.
Educational efforts are recommended for affected individuals and their significant others before hospital discharge.
Sometimes I have felt that I would like someone else to talk to [ … ] because I don't want to tell them everything [ … ] it feels like I am burdening them.(Informant 5, age at interview: 40-49 years) So, we asked about sex, then he [the physician] said 'it's like climbing Mount Everest'.And then I felt 'what?' (laughs).It was maybe not the answer I needed (laughs), and then he says that one should live as usual.(Informant 11, age at interview: 50-59 years) [ … ] and I have a nephew I meet; I meet my cousin's children.(Informant 8, age at interview: 70-79 years)Others said that they sometimes felt lonely, and appreciated distraction:It's very nice when someone comes in the morning, even if they [home care service] only come and talk for a little while.Because it's rather lonely sometimes.(Informant 9, age at interview: 60-69 years)
When I came home [after hospital discharge] I wasn't allowed to lift anything, and I wasn't allowed to do any heavy work.But at least I thought I could use the vacuum cleaner and do the cleaning.One could dry the floors and stuff like that, and I could cook then, and it wasn't a problem because it's nothing heavy.(Informant 1, age at interview: 70-79 years)Another example of self-management was that informants created their own long-term training program to increase their physical ability.I don't push myself at all, use light weights and simply take it easy.And if I feel the slightest resistance, I slow down (laughs) the pace.Actually, I feel that it [the physical strength] is coming back more and more.(Informant 11, age at interview: 50-59) But there were also reports of being abandoned and not offered sufficient support to manage the new, different everyday life:But no one cares for me [ … ] I have to manage the best I can.(Informant 3, age at interview: 50-59 years) I've had to do everything myself because the children's father didn't help.So, I've been very much alone, and struggled.(Informant 5, age at interview: 40-49 years) … ] if someone comes to me and says 'yes, now we are here, what can we do for you, what can we help you with?' I don't fucking know, I've never experienced this before, I don't know what I need, [ … ] I don't know what's wrong with me.Tell me what to do, give me the tools.Like, am I supposed to do exercise, can I just walk into a gym and grab some weights, [ … ] I'd much rather attend group exercise where there is someone telling me 'you should do this [ … ] put more weight there', something like that.(Informant 2, age at interview: 40-49 years) [

Table 1 .
Characteristics of participants.