The experiences of young women living post-stroke in Jordan: a descriptive phenomenological study

ABSTRACT Background The incidence of stroke in younger adults is rising, particularly among women living with stroke who face multiple physical, psychological, and social challenges that negatively affect their quality of life. Consequently, women’s roles in life would be negatively affected at home, work, and in society. This study aimed to explore the lived experience of women suffering from a stroke in Jordan. Methodology This paper uses semi-structured interviews to present a descriptive phenomenological study of eight young women suffering from a stroke. The Colaizzi (1978) method was used to analyze interview transcripts. Main results Three main emerging themes that describe the lived experiences of women with a stroke: 1) Experiencing stroke as a woman; 2) Stroke and the intimate relationship with the spouse; 3) Challenges of women’s journey while receiving health care. Conclusion After their stroke, Jordanian women have experienced profound, interrelated, and multifaceted difficulties in all aspects of their life and relationships inside and outside the family. Whilst healthcare providers recognize these stressful symptoms; however, there is a lack of attention and care to meet these needs.


Introduction
Stroke is considered a global health challenge, and the incidence of strokes has doubled over the past four decades. 1 About 89% of strokes occur in lowand middle-income countries, where the incidence of strokes has more than doubled over the last four decades.People in low-and middle-income countries have a stroke 15 years earlier than people in high-income countries. 1In low-and middle-income countries, up to 84% of stroke patients die within three years of diagnosis, compared to 16% in highincome countries. 1In Jordan, stroke is considered the second leading cause of death after ischemic heart disease and the fifth cause of disability. 2 Life after a stroke can be difficult for stroke survivors.It is difficult as the patients with stroke are supposed to cope with the new circumstances.4][5] The inability to move and failure to perform basic functional activities such as walking, eating with the affected hand, and difficulties with vision lead to high healthcare service utilization, in addition to sudden dependence on others for simple selfcare and daily activities. 6Although relative progress has been made in different countries and societies in the medical prevention and treatment of stroke, we still need to more fully address the physical, social, and spiritual well-being of stroke survivors. 7,8vidence reveals that hospital-based rehabilitation programs mainly focus on restoring physical function and reducing the stroke survivor's dependence on others.However, appropriate attention to providing healthcare services regarding psychosocial or spiritual needs is not sufficient. 8][12] In Jordan, women depend on their family as well as friends for emotional support and healthcare decision-making. 13o "Consequently, following stroke women's lives are negatively impacted at home, work, and in society, and this limits their social relationships and independence. 14Women following a stroke thus have multiple physical, psychosocial, and spiritual healthcare needs.Accordingly, understanding the experiences of women who have suffered from stroke is a crucial step to identifying their healthcare needs and helping them manage distressing clinical complications.Thus, the purpose of the current study was to explore the lived experience of women suffering from a stroke in Jordan.

Research design
This study was guided by a descriptive phenomenological research design.As this phenomenon was investigated for the first time in Jordan, this methodology was deemed the most suitable design to allow a deeper understanding of women's experiences and explored the essence of this experience.Within the Jordanian context, women's experience with stroke needs further exploration to understand the detailed and in-depth meaning of their experience and impact this had on their lives and recovery journey.

Participant recruitment
Qualitative research requires a small, purposive sample size because of the comprehensive, intense work that is essential for the study.For those reasons, purposeful sampling was recruited in the period of August 2021 to November 2021.
The participants women were recruited from out patients who visited the rehabilitation centers in two main governmental educational hospitals in Jordan operated by the Ministry of Health (MOH).Al-Bashir Governmental Hospital in the capital Amman, and Princess Basma Out-patients Clinic (Rehabilitation Center) in Irbid Governorate.The participating hospitals are two of the largest hospitals in Jordan.
The following inclusion and exclusion criteria were used in selecting the participants holds this was based on study conducted by Leahy & colleagues 9 : 1) Women who suffer from a mild to moderate stroke between 18 and 50 years; 2) Women who suffer from a stroke at least one year ago.During this period, they gain experience of suffering and will be able to describe the essences and meanings that their experience, and 3) Women who are capable of comprehending and participating in a detailed interview (no major mental or linguistic disorders).Women suffering from other major conditions that may overshadow the experience of stroke, such as cancer, multiple sclerosis, or renal failure, were excluded from this study.The sample size was determined based on theoretical saturation.Accordingly, the researcher continued conducting the interviews and collecting data until saturation.That was when themes and essences emerged from participants, and data were repeated.In this study, data saturation was reached after six interviews.However, to promote an accurate description of the themes, the researcher conducted two more interviews beyond the saturation.Such a strategy is useful in qualitative research to enhance the trustworthiness of the study. 15fter identifying eligible participants, the interviewer placed an invitation call with them asking if they would be interested in participating in the research study, then introduced myself, explained the purpose of the study, went through the approval process, and answered any questions they had.Then, the interviewer called them on the second day to get the answer if they agreed to participate in the study or not.If the woman agreed to participate, an appropriate time and place to conduct the interview and obtain informed consent was agreed with her.

Data collection
The interview or focus group was conducted by the first author (MNA).At the time of the study, the researcher was a Jordanian PhD student working as a research assistant.The researcher, who is female, had received formal training from the PhD supervisor.
The data for the study were generated through semi-structured interviews that were undertaken and performed at the participants' homes, with the exception of one woman who requested to be interviewed over a phone call by a female researcher, given the sensitivity of the topics discussed.Each interview commenced with the researcher collecting information about the sociodemographic characteristics of the participants.Table 1 provides a summary of the sociodemographic characteristics of the participants.
Then, the researcher started to ask the participant open-ended questions according to the interview guide (Supplementary file 1).The interview questions were formulated in a way that is relevant to the experience under investigation.The questions were selected to answer the what and how questions related to the phenomenon of interest.Besides, they are selected based on the reviewed literature to expand the understanding of the phenomenon (Yoon & Bushnell, 2023; Opoku et al.,  2020; Steigleder et al., 2019).Also, the interview questions were open-ended, clear, specific, and not leading.These research questions aimed to gain understanding, insight, and knowledge about women's lived experiences after suffering from a stroke.
During the interviews, the researcher made sure that the participating women were relaxed and started the interview with general topics to build trust and comfort and reduce anxiety levels among them.The interviews were conducted with the participant without anyone else present next to her, in Arabic with the interviewee in an informal, conversational style to allow the participant to speak comfortably in an open dialogue manner.Finally, eight interviews were conducted, which lasted between 60-90 minutes.In addition, all interviews were audio-recorded, transcribed verbatim, and fully analyzed.
According to Colaizzi, 16 interviews were discontinued when the researcher achieved data saturation (thematic repetition), as the information being shared became repetitive and there were no new ideas or experiences.

Ethical considerations
Research Ethics Board approval was obtained from the participating institutions (Jordanian Ministry of Health on 20 June 2021).The researchers obtained written process informed consent from each participating woman.According to Steubert, 17 process informed consent is a dynamic process rather than a single-time consent the participants had the right to withdraw from the study at any time, which fits the nature of this study recommendations.This manuscript has been reported in accordance with COREQ Guidelines. 18

Data analysis
The researchers followed Colaizzi's (1978) method of descriptive phenomenological data analysis because it aligned well with the aim of this study, to explore and synthesize the experiences of women who suffered a stroke.The use of Colaizzi's method is recommended because it is a rigorous and robust method that ensures the credibility and reliability of its results.It is a clear and logical process through which the fundamental structure of an experience can be explored, and it allows the revelation of emergent themes and their interwoven relationships. 19,20oreover, Colaizzi's method will enable new knowledge to be revealed and provide insights into people's experiences. 20he interviewer (MNA) became familiar with the data by reading the data several times; to understand their thoughts and feelings.Then researchers listened to each record and read each text on different occasions in order to get a sense of each participant's description of their healthcare experience (step 1).Then, the text was manually analyzed to identify all significant statements in the transcription that were of direct relevance to the phenomenon under investigation, then each statement from each text was identified and transferred to a separate table while keeping the questionnaire number as a reference (step 2).After that, the researchers identified meanings relevant to the phenomenon and finally, created a formulated meaning unit from each significant statement.Then, clustered all formulated meanings into themes that are common across all transcriptions (steps 3&4).The researchers in step 5 wrote a full and inclusive description of the phenomenon under investigation as recommended by Colaizzi, (1978) 16 .,which was presented in step 6 as a short, dense statement that captures just those aspects deemed essential to the structure of the phenomenon that is reflective of the participants' descriptions of their experiences.The senior researcher confirmed the validity of this exhaustive description.
Finally, the researchers validated the exhaustive description with each participant woman using member checking.Member checking is a technique for exploring the credibility of results, in which the data or results are returned to participants to check for accuracy and resonance with their experiences 21 This was achieved by providing the women with the research findings via a phone call, The researcher asked the participants if the finding of this study reflected their lived experiences in relation to their experiences during a stroke.All of the participating women confirmed the findings, which reflect their lived experiences during the stroke (step 7).
The data were analyzed in the original language of "Arabic" to prevent loss of meaning and save effort, time, and cost following Chen & Boore guidelines. 22The emerging themes, sub-themes, and key remarks, together with participant comments that reflect their experience, were translated into English once the data were evaluated.The researchers used the forward-translations (Arabic → English) and back-translations (Arabic → English →Arabic) method according to WHO guidelines to ensure data integrity. 23

Rigor and trustworthiness
The trustworthiness of the data was achieved with strategies to enhance credibility, transferability, dependability, and confirmability, throughout the data collection and analysis processes.
Firstly, The researchers use a purposeful sampling technique for participant enrollment who met the inclusion criteria.Moreover, the researchers used Colaizzi's method for analysis which is considered appropriate to enhance credibility.In addition, using member checking which included each participant reviewing and approving the transcribed data enhanced the research's credibility.
Secondly, the researchers ensure transferability in this study by collecting thick descriptive data, which allows a comparison of this context to other possible contexts.Using appropriate participant quotations was also a strategy to gain transferability.
Thirdly, to assure the dependability of the study, the researcher used an interview guideline during each interview, to ensure that questions were asked consistently across participants and that all the study dimensions were covered during each interview with each participant.
Finally, to achieve confirmability the researcher used an audit trail, which involved describes all decisions and activities throughout the study.Furthermore, reflexive journal was used to establish the confirmability of the study, the reflexivity issue was insured through detailed and contextual writing and a reflexive account of the research process.Through bracketing, the researcher separated the preconceptions, experiences, and beliefs from the descriptive raw data during all phases of the study to decrease potential bias.

Findings
Analysis of interviews spotlighted three emergent themes that reflected the lived experiences of the participants: (1) experiencing a stroke as a woman; (2) stroke and the intimate relationship with the spouse; (3) challenges of a woman's journey while receiving health care.Each of these themes have several sub-themes The themes with the related sub-themes are presented in Table 2.

Theme 1: experiencing stroke as a woman
The experiences of the women related to this theme were divided into the following subthemes: The changes in roles as a woman,, and being dependent on others.

The changes in roles as a woman
According to the most of participants, stroke affected their role in their families and the community.All women described the change in their role with their children, spouse, and overall family.As a result, many participants felt frustrated and disappointed.Participant (8) describe that the most prominent effect of the stroke was losing her prominent role in motherhood, and her inability to provide care for her children, she said:

I was devoted to my family, my house, and my son, but what happened when I had a stroke?, I lost the most essential position in my life: parenting. I had lost my duty as a responsible mother.
There were five participants expressed their annoyance about losing their jobs after the stroke due to their physical disability, which disrupted their ability to perform work like before.Employers were unwilling to have them return to work.This made them believe that they were unproductive, and they thought of themselves as being a burden on society.A woman (1) stated that: "I wish I had never had a stroke I used to be so helpful not only with my family, but also at work I used to be a productive and efficient woman."

Being dependent on others
The women in the study realized that motherhood required many sacrifices, giving and taking care of everyone around them, so they were worried about relying on someone else to do their basic daily activities and losing their physical ability to perform the simplest tasks.This issue was a tragedy for her and resulted in a feeling of frustration.Participant (5) indicated that: My life was different in every way.It deteriorated, not improved.In terms of physical activities, it changed starting from when I had a mobility handicap and became reliant on others for everyday chores.All of it is too much for me to bear.

Theme 2: stroke and the intimate relationship with the spouse
• Participant provided reflections that highlighted their experience of sexual lives with their spouses.This theme is reflected in three subthemes: • Changes in sexual interactions with the spouse; Shift spouse focus to physical needs; and lack of knowledge regarding sexuality after stroke.

Changes in sexual interactions with the spouse
The intimate relationship with the spouse changed completely after the woman was diagnosed with a stroke.The majority of participants mentioned that they lost the confidence to have sexual relations with their spouses, and felt less attractive because of their disability, they were concerned about their partner's perception of their bodies.One important issues raised was the negative impact of stroke on the sexual relations with the spouses, despite the close interrelationship between spouses.In another context, eight participants felt Table 2. Themes that identified from the experience of women suffering from stroke.
Themes Sub-themes Experiencing stroke as a woman • The changes in roles as a woman.
• Being dependent on others.

Stroke and the intimate relationship with the spouse
• Changes in sexual interactions with the spouse.
• Shift spouse focus to physical needs.
• Lack of knowledge regarding sexuality after stroke.

Challenges of woman's journey while receiving health care
• Struggle with transportation to the health care services.
• Lack of sufficient medical information related to stroke care • The experience of a financial burden as a challenge.
that they could not trust their bodies or felt unable to have sexual relations partially because they have paralysis of one side of their bodies and lost balance.A participant (1) described her experiences as: "Not only did my physical and psychological life alter after getting a stroke, but my sexual relationship with my husband became distant and frigid as well.I am no longer fulfilling my position as a wife by catering to his sexual needs."

Shift spouse focus to physical needs
The majority of the women pointed out the attitude of their spouse in this extraordinary situation.As many husbands are concerned about their wives' health status and did not think in this regard, their focus has shifted from the sexual aspect to meeting the health needs of their wives and taking care of them.It is worth mentioning that, four of the participating reported that their husbands were very supportive, and they indicated that a good relationship between spouses does not always require a sexual relationship.Participant (8) indicated: "My bedroom was converted into a hospital room, and my husband said that: the most important thing is my health, and recovery soon, he was always beside me and supported me continuously".

Lack of knowledge regarding sexuality after stroke
Many participants reported their need for information and to answer any questions regarding their sexual relationship after stroke.But, they say, it is uncommon to have discussions about sexuality or sexual health with healthcare professionals within the Jordanian community.In addition, five participants described their concerns about having recurrent strokes during and after intercourse.And that their information is not confirmed if intercourse was related to the recurrence of the stroke.For example, a Participant (6) stated: "Everything in my life causes me to be fearful and withdraw.Even intercourse makes me uncomfortable.After intercourse, I'm frightened of a new stroke".Four out of eight participants did not know if there was an association between their decreased levels of sexual desire and stroke medication intake.Participant (3) expressed: "I think my condition is related to the medications I take.I've never lost sexual desire before, but I really don't feel anything during intercourse, and I'm afraid to stop the medications by myself."

Theme 3: challenges of woman's journey while receiving the health care services
This theme reflects the experiences of the women related to the healthcare challenges they faced during the follow-up and rehabilitation phases.The study's findings revealed three sub-themes, namely: Struggle with transportation to the health care services; lack of sufficient medical information related to stroke care; and the experience of a financial burden as a challenge.

Struggle with transportation to the health care services
A critical struggle that the women were concerned about was the transportation challenges.While public transport became a common option for many of the participant women with low incomes, they faced many difficulties and challenges while using public transportation, such as feeling tired while using public transportation as it is not equipped for people experiencing disability, moreover, the negative reactions and behaviors of public transportation drivers toward these women.Participant (2) described her constant frustration in getting public transportation services, she said:

Despite my illness, I had to dispute with taxi drivers several of them because they dislike dealing with us,
The problem is complicated and challenging, taxis have narrow doors, and a wheelchair can't go through them, so they have to carry me on the seat.When I think about it, I start weeping.

Lack of sufficient medical information related to stroke care
A prominent sub-theme in this study is the lack of information regarding the clinical aspects of stroke, prevention, treatment, and functional recovery.It was evident across the different interviews that the participating women were worried about side effects and interactions from long-term use of the stroke medication.Participant (6) said:

Well, I was asking my physician a lot of questions. I believe I should have more information just to comprehend why I am in this circumstance and what my health may be like in the future. What should I do, and what should I avoid doing?
The experience of a financial burden as a challenge A very significant impact of stroke that participants identified was that of financial burden, which can be overwhelming and unpredictable.The majority of the participating women reported financial burdens due to the loss of their job and difficulty finding a job opportunity that suits their disability post-stroke.Other financial issues were the expenses of care, including the need to buy special medical equipment (wheelchairs, crutches), the cost of frequent hospitalization, and the transfer to the hospital.Participant (3) said: Our financial situation has deteriorated.We are a lowincome family.and unfortunately, I had to resign from my job, which put a significant financial strain on me, especially since my expenses increased as a result of treatment and follow-up visits.

Discussion
This study explored the impact of stroke on Jordanian women and found that stroke has dramatically disrupted the women's life since they experience a sudden change in their roles and responsibilities toward their children, family, and society.The role of the woman as a mother was changed, from being the primary provider of care for the children in all matters related to their needs to feeding, grooming, and caring, satisfying their emotional needs, and offering them love and kindness, to receiving care and being unable to give and sacrifice and play all these roles.In line with the current findings, a study by Opoku & colleagues, 24 found that the effect of stroke in women was clear and changed their role from the aspects of distributing their responsibilities in their family and society; this sudden and unplanned change is stressful for her as the family's primary caregiver.
Moreover, the women in the current study expressed their suffering from dependency on others in daily activities, where physical disability restricted them from performing even the simplest tasks and managing their lives without help.The finding from a qualitative exploratory study, which was conducted by Kalavina,4 indicates that impairments caused by stroke in patients cause loss of independence in self-care activities and mobility, which increases responsibilities and burden on the spouse, family, and community.
One of the most noticeable findings in this study is the experience related to sexuality after a stroke.Unfortunately, the word "sex" and related to it, such as "intimate relationship," is a taboo word within our Arab societies.However, women's discussion of such issues or even seeking treatment and care in this aspect is considered embarrassing and shameful not only by the women but also by the health care providers.There is a noticeable marginalization in removing the cover from this aspect and hesitating to discuss such issues.In support of this finding, a study conducted by Akhu-Zaheya & Masadeh 25 in Jordan, revealed that the health care providers should be responsible for addressing and discussing sexual concerns and providing patients' sexual counseling needs, but verbally discussing sexual information needs is challenging and will not be accepted by some patients, because talking about sexual issues in Arab and Islamic countries is considered taboo.
The authors emphasized that the lack of sexual information can affect patients' quality of life, especially since this study revealed negative changes in women's sexual lives. 26][31] The researchers in the study indicate that women lack knowledge about sexual relationships after a stroke, and they are afraid that having intercourse may lead to another stroke.This is consistent with a study conducted by Prior & colleagues,32 indicating that more than 30% of 1,265 participants wanted to receive information on sexual activity after stroke, but only (8.2%) of participants received this information because post-stroke sexual activity information and education are challenging for health care providers and to social norms, and fails to meet patients' needs, highlighting the importance of developing sound and routine post-stroke education and information processes.The lack of information and available support leads to the loss of sexual activity, leading to anxiety, depression, and decreased quality of life.These findings are consistent with what was found in previous studies. 33,34he participant women in the current study identified a lack of information about the clinical aspects of stroke, prevention, treatment, and functional recovery as a challenge.Previous studies have reported that knowledge needs may increase over time as patients reveal an apparent lack of knowledge regarding long-term rehabilitation goals, secondary prevention, information on the consequences of stroke, and information on medications.][37] Financial burden also appeared as a challenge facing women's life in the current study.That came with the inability of women to return to work, the need to pay for frequent hospital visits, and the need to pay for special medical equipment to help them with transfer and mobility.A similar burden has been reported previously by various caregivers from different studies, 4,38 who reported physical and financial burdens.It was common for participants' women to seek treatment in private rehabilitation centers or seek private physiotherapists.Hence, all women described that they got appropriate services and better outcomes in the private sector.Thus, the financial burden was increased.
In Jordan, there are few public rehabilitation centers.Therefore, patients required to travel great distances to reach the centers using public transportation, which expose them to fatigue and exhaustion resulting from the lack of availability of public transportation for people experiencing disability.Moreover, these issues increased women's and caregiver financial burden.These findings are consistent with a previously reported study in Malaysia, where the option to use public transportation was common for many low-income patients, but they faced many difficulties in accessing public buses and trains and were disappointed because of the discrimination by drivers.However, many patients resorted to using private taxis as it is more suitable for their physical restrictions. 39e study revealed that women are not satisfied with transportation, as they are not suitable for people with special needs.This made them think that they were socially marginalized and no one cares about them.These findings agreed with several previous studies. 38,40

Strengths and limitations
Like all qualitative studies, this study has some limitations that must be considered when using the findings.The findings of this study do not necessarily represent the whole of all Jordanian young women living post-stroke.The results are based on a relatively small sample size.
The second potential limitation was that participants were being asked to recall situations and stories.The nature of the interviews asked mothers to recall and provide stories that were retrospective, and that could have led to inaccuracies.To minimize some of these effects, the researcher used the interview guide that helped to ensure participants recall their remarkable stories and experiences.
A third potential limitation of this study is the focus on the experiences of young women who have had a stroke; Therefore, the subjects of this study may differ from those that may arise in older women.
On the other side, one of the main strengths of this study is that it is the first qualitative study, as far as I know, in Jordan that explored the lived experiences of Jordanian women who were suffering from stroke, and the sample included women with varying levels of education who were living in different rural and urban areas in two governorates in Jordan.This variation maximized contrast to define different perspectives of their experiment.Moreover, one of the essential strengths of this study was the established trustworthiness, and it discusses the transferability of the research finding in other settings.One of the main strengths of this study is that it is the first qualitative study, as far as I know, in Jordan that explored the lived experiences of Jordanian women who were suffering from stroke, and the sample included women with varying levels of education who were living in different rural and urban areas in two governorates in Jordan.This variation maximized contrast to define different perspectives of their experiment.
Moreover, one of the essential strengths of this study was the established trustworthiness, and it discusses the transferability of the research finding in other settings.

Conclusion
The most apparent findings that emerged from the study are the impact of stroke directly on a woman's life and the challenges related to the experience, such as physical disability, changing their role in life, and being dependent on others.It emphasized the effect of stroke on women's sexual life.However, women could not discuss sexual matters with healthcare providers in their rehabilitation process.Furthermore, it was indicated that women need more information related to stroke care, financial support, emotional support, and recognizing the main barriers during the treatment journey.
Healthcare providers need a deeper understanding of women's experiences and be aware of a comprehensive assessment to explore the needs experienced by patients with stroke, including the physical, psychological, spiritual, and social aspects; to provide a basis to improve the quality of health care provided to patients with stroke and taken into account the individual differences when providing care and rehabilitation between different age groups, as the needs of young women differ from those of older adults.This may include developing new rehabilitation programs for young people that include: sexual rehabilitation, rehabilitation to help them return to work, to improve their self-confidence, social and spiritual enhancement, and empowerment.