This study sheds the light on the aspects of Jordanian women with a comprehensive view of all aspects of life after suffering from a stroke. The findings indicate that stroke's burden has far-reaching consequences on women's lives. Therefore, the Jordanian women suffered from several bothersome symptoms and needs related to physical, psychosocial, and spiritual issues. Such as; physical impairment, fatigue, pain, dizziness, impaired memory, imbalance, insomnia, urine incontinence, and impaired mobility, which limited the women performing basic Activities of Daily Living (ADLs), and self-care. Therefore, the women became dependent on others. These findings were consistent with the previous study's findings [5, 13, 14].
Another prominent bothersome symptom that women reported was uncontrolled fatigue. These were significant symptoms that interfered with the QoL for Jordanian women and restricted them from performing many daily tasks. These results are consistent with previous studies [15–18]. Interestingly, a meta-analysis study that was conducted by Cumming, Yeo [19], revealed a significant relationship between post-stroke fatigue and gender. The fatigue reported by women was more frequent than in males; fatigue was one of the most prominent physical symptoms after stroke.
Furthermore, this study found that pain affects a woman’s QoL; women experienced anxiety, lack of sleep, fatigue, inability to move, and lack of energy because of chronic pain. Previous studies [20–22] have indicated that about a quarter of patients with stroke have long-term pain. Pain occurs soon after a stroke.
Although post-stroke pain was a common clinical problem and affected women's QoL, it is still undiagnosed, neglected, and marginalized by health care providers as they did not receive adequate training in pain management. An integrative review conducted by Payton and Soundy [23] recommended that pain should be diagnosed and evaluated in a detailed and documented manner as soon as a patient begins to complain of pain, emphasizing the importance of effective communication between patients and caregivers to understand the patient's experiences of pain and pain-related problems, as pain treatment is often associated with poor evaluation and understanding of pain management. While Nesbitt, Moxham [24] confirmed that post-stroke pain is recurrent and multifactorial, there is still a significant number of patients complaining of ineffective pain management. This may be related to the difficulty of assessing pain in stroke patients due to communication disorders and cognitive problems.
Psychological and emotional distress is a common complication after stroke and impacts all aspects of recovery [25, 26]. This study explored many psychological symptoms experienced by Jordanian women, such as anxiety, loss of self-control, grief over life before the stroke, boredom, and social isolation. The causes of psychological distress were closely related because the participating women were still at a age; they believed that they had many responsibilities and obligations that could not be accomplished with their current physical impairments. These findings were consistent with the findings of previous studies [17, 27]. Based on the shared views from all the study participants, this research identified experiences mostly focused on their emotional disturbances. Most of these feelings harmed women's emotional and psychological health while experiencing the effects of stroke. One of the most critical issues revealed by this study is what the participants reported about their feeling of burden on their family and their sense of burden caused as a result of their total or partial dependence on their families to help in accomplishing daily tasks, in addition to increasing the financial burden on them. This is consistent with the results of previous studies where participants reported similar concerns [28, 29].
The prevalence of depression among women was common in this study. This finding is congruent with previous studies by Bourin [30], Dong, Mezuk [26] who reported that stroke patients are at risk of developing depression, explaining that more than half of patients with stroke develop what is known as "post-stroke depression" in the first year of their illness. In addition, this risk increases especially for women, the elderly, and people who lack social support in their lives, as well as those who suffer from psychological or cognitive disorders before, such as problems with perception or the ability to remember.
In the same line, a prospective cohort study was conducted in Jordan by Al Qawasmeh, Aldabbour [25], the authors reported that one in four Jordanian patients with stroke experienced Post-Stroke Depression (PSD) after one month of being stroked. In this study, depression has been identified through women's stories when asking about their moods, where women are experiencing the feeling of sad, mood change, losing interest in everyday activities, feeling worthless, insomnia, and loss of self-confidence.
The findings of the study showed that the majority of Jordanian women faced a problem in giving and receiving information related to their illness from health care providers, which was a particularly poignant topic in their life. The stroke events were shocking and unexpected, and most of the news about their condition was bad and changed their expectations and hopes for the future. The findings are consistent with what was reported in previous studies, whereby stroke patients suffered from negative affect and emotional disturbances due to ineffective communication when bad news is communicated to them by the health care providers [31–33]. Research in the field of stroke indicates that health care providers must use effective skills in Breaking Bad News (BBN) in terms of clear style, realism, and hope, to avoid the occurrence of unwanted psychological and emotional symptoms such as shock, anger, and annoyance [34, 35]. In this study, not using a therapeutic method when telling bad news left the women in a state of confusion and shock. In the same context, a systematic review of 30 studies from eight countries indicated that to ensure emotional recovery and improve the experiences of stroke patients and their families, health staff should adopt an approach based on breaking bad news compassionately, and preparing the staff to meet the information needs of patients and their families [11].
Most Jordanian women strongly desire professional communication from healthcare providers; they describe the communication they need as caring, empathetic, compassionate, and respectful. The women's stories about their contact with the healthcare provider reveal how words convey significant meaning, women who often look to the healthcare provider for reassurance, understanding, and support; according to Denham, Wynne [36], the professional, smooth, empathetic way in communication process consider crucial aspects in better communication between health care providers and patients living with. Previous studies found that communication between women and professionals was found to be an essential element in building a trust and confidence relationship in the care process [37–39]. Furthermore, appropriate communication has great importance in meeting the healthcare needs of women and their caregivers [40].
The women in the current study expressed the necessity of communicating bad news in an empathetic manner, in respectful, clear, and understandable language, in order not to add an additional burden to their health condition. This finding was consistent with a study conducted by Read, Heslop [41] who emphasized the importance of preventing bad behaviors during communication with stroke patients that will be reinforced their feelings of shame and unfairness.
The Jordanian women reported in this study negative behaviors and attitudes about health care providers during communication, which was unsatisfactory and ineffective. The women expressed that they believe that the health care providers are the most prominent supporters and the most important pillars that help in the recovery process post-stroke. However, the expectations of the majority of women were not fulfilled due to the way of conveying bad news to them, receiving a minimum of time and sympathy from them. The women believed that their health outcomes and mental status would have improved if the health care providers had better skills in communicating bad news and had more emotional support.
The current study findings indicated that healthcare providers need to be well experienced in proper strategies for communicating effectively with women. For example, if they were using the SPIKES protocol (SPIKES: Setting; Perception; Invitation; Knowledge; Empathy; Summarizing), which was effective in communicating bad news with different populations and different cases [42, 43]. Allowing more time for discussion with women to express feelings and answer their inquiries was recommended by Jordanian women.
Although Jordanian women were exposed to chronic diseases that left many disabilities and imbalances, many of the participating women stated that most of the disabilities they were exposed, should be accepted. Furthermore, life does not have to stop there. This study revealed different mechanisms of resilience and adaptation to their new situation. Spiritual and religious beliefs were among the most important mechanisms that helped women adapt with their illnesses. Previous researchers have found similar findings [44, 45], where attachment to God, prayer, and faith may confer hope, optimism, energy, security, and dignity.
The current study showed that Jordanian women need hope for recovery, regardless of their medical condition. In the same context, previous studies confirmed that all patients, their situation, age, need, and hope, mainly derived from health professionals. Communication with hope helps to accept their diagnosis and improve their well-being and quality of life [45, 46].
The findings of the study revealed that the women who did not accept stroke were they are still at an age and they link disability and stroke related to the elderly. Accordingly, they always wonder “Why me”; by this sentence, they mean, why they suffer from this disease specifically.
Interestingly, many women reported other aspects related to spirituality such as finding meaning in disease and suffering. For Jordanian women, Islamic religious beliefs were a source of adaptation and acceptance of illness. It made them look at life in new ways. They felt that they were closer to God and acknowledged a blessing in life. Jordanian women explained that disease and fatalism “accepted God’s will” because God’s plan and illness are destiny.
Previous studies have found similar statements by Muslims [47–49]; these studies reported that Muslims view illness as an affliction from God Almighty and atone for their sins. So that created a new meaning for their purpose in life. Thus, their spirituality was strengthened through their faith and religious practices. This wasn't always positive, as two women failed to change due to different interpretations of fatalism. These participants explained the disease and fatalism; they believed the illness was connected with God's punishment. Kouwenhoven, Kirkevold [50] reported that stroke is a disruptive life event that can include a person's failure to return to normal, requiring self-redefinition and understanding of the meanings of suffering and disease.
Limitations
There are some limitations to be addressed in this study, the first limitation of this study is that all participants’ women were recruited from governmental hospitals. The second limitation, this study was women-based and did not include assessing the need for palliative care for all stroke patients of both sex at the community level. Men's experience and their palliative care needs might be different from those of women.
Despite these limitations, the study findings contribute to nursing practice, education, policy, and research related to caring for women patients suffering from stroke. The significant contributions of the present research are providing several recommendations to improve the understanding of health care providers to the experiences of women suffering from stroke and giving insight into the palliative care needs from the Jordanian women's perspective. According to the study findings, there is a need for evidence-based research to determine the palliative care needs of stroke patients with stroke and caregivers. And to investigate the impact of integrating principles of rehabilitation and palliative care on a large sample scale.