Background
According the report of the global burden of disease study, the prevalence and incidence of spinal cord injury (SCI) are increasing, with a reported prevalence of 20.6 million and an annual incidence of 0.9 million. Among the most important causes of this event are falls and road accidents [
1].
The incidence of traumatic SCI in Iran is 10.5 per million; its prevalence is 3 per 100,000, and its mortality rate has been reported as 3.9% [
2]. The relatively high incidence of this debilitating condition among youth leads to enormous financial and physical losses. Most of those affected are men in the age range of 19 to 34 years old [
3].
Spinal cord injury causes dysfunction in various body systems such as the sensory, motor, musculoskeletal, digestive, urinary, cutaneous, and respiratory systems, as well as psychological disorders [
4,
5]. These consequences impose a great work burden on the family and the health system [
6] and require spending high costs for managing the patient [
7]. During the acute phase, the patient may become completely or partially dependent on others, requiring receiving care for years [
6].
Management of chronic diseases, such as SCI, is one of the main challenges of the health system, and expansion of community-based services is a leading strategy to reduce the incidence of hospital-related complications and the duration of hospital stay [
8]. Community-based services can have many benefits for patients and health systems, such as reducing the rate of readmission to the hospital and emergency department, upgrading quality of life, and effectively managing limited health resources [
9].
After the acute period of the disease, community-based services are necessary for many SCI patients during the recovery period and after acquiring partial recovery. If the patient fails to receive appropriate out-of-hospital care, he/she may need re-hospitalization [
10]. The positive consequences of using home care services include a reduction in financial costs and need for hospital-based care and an increase in social participation and patient satisfaction, highlighting the unique role of home care services in today’s world. Besides, technological advances in medicine have created suitable grounds for the expansion of home care provision [
11,
12].
The physical complications pertaining to SCI are notably prevalent worldwide. According to the results of a study, 95.8% of SCI patients experienced at least one or more physical problems such as pain, spasticity, sexual dysfunction, and respiratory problems secondary to their injury [
13]. Also, these patients may experience psychosocial problems more commonly than the general population [
14].
Families and caregivers face many issues and problems during caring for SCI patients at home [
15]. Due to various reasons such as the lack of educational, supervisory, and specialized systems, the management of patients with chronic diseases should inevitably pass from the in-hospital phase to home-based and in-society maintenance therapy, as one of the important pillars of the healthcare chain [
16].
Every country, based on the context of its health system, as well as political, social, economic, and cultural parameters, employs unique protocols for providing community-based services [
17]. Thus, understanding the perception of the individuals involved in care provision, such as family members, patients, caregivers, and professional health service providers, can help identify patients’ care needs. Thus, the purpose of this study was to explore caregivers’ perceptions of the community-based service requirements of patients with SCI.
Discussion
The findings of this study showed that community-based service requirements for patients with SCI included community reintegration and palliative care. It is important to pay attention to the need for developing a suitable social platform and appropriate infrastructure for lifelong care, family conference, and survival management.
It is essential to maximally recruit the capacity of families in order to provide quality care to patients with SCI. Family caregivers are in touch with SCI patients and feel committed to them more than any other person [
20]. In addition to supporting their patients physically and psychologically, family caregivers help patients accomplish their daily activities [
21], reducing the care burden imposed on health systems, the need to use professional home care, and the rate of admission to nursing homes [
22,
23]. Various studies have delineated that SCI patients tend to seek their services from specialists [
24,
25], which can be due to the insufficient knowledge of general practitioners regarding the management of SCI patients [
26]. In Switzerland, although general practitioners report up to 94.3% of SCI cases, only 9.4% of these patients are referred to specialists [
27]. The policy of the health system should be in a direction that patients with SCI can receive care in the framework of a referral system, starting from family caregivers at home, followed by professional caregivers, including nurses and doctors, and then if they needed second- and third-level care, they should be referred to specialists and subspecialists.
One of the items that should be taken into consideration when providing care to these patients is to modify the living environment to meet their needs. In line with our findings, the results of another study showed that the problems related to public environments, state policies, and transportation were among the most prominent hurdles impeding these patients’ adaptation to their condition [
28]. It is suggested to redesign the living place of patients with SCI according to the level and nature of their injury so that these patients can acquire partial independence in performing some of their activities, and their families can take care of them with more convenience.
Another factor that needs to be taken into mind when providing care to SCI patients is the necessity of delivering comprehensive care to these patients. The findings of this study highlighted the importance of the documentation of the disease process and the patient’s health history. In line with our findings, another study reported that proper documentation should be performed when providing home care to patients with chronic diseases [
29]. This process will guarantee the access of caregivers to the patient’s health records so that they can deliver better care services. In addition, documented records can be citable in court when a caregiver is accused of medical errors or negligence.
Our results indicated that patients should receive early care in the health centers specially designed for SCI patients, and these care services should continue to be delivered at the community level. In accordance, the results of another study showed that providing early services to SCI patients in specialized care centers could reduce the duration of hospitalization and related complications [
30]. Therefore, it is suggested to admit patients with SCI in specialized care units as early as possible and to start rehabilitation measures in the hospital during the acute period of the disease, followed by home care.
Patients with SCI require physical and psychological support. In parallel with the findings of the present study, various studies have shown that SCI patients are vulnerable to physical problems such as pain, muscle spasms, sexual incompetence, respiratory problems, kidney and urinary tract problems, irritable bowel disease, and bedsores [
24,
31,
32]. Another study reported a variable prevalence of 26–96% for chronic pain in SCI patients [
33]. Among the factors aggravating these physical symptoms are female gender, being a smoker, and traumatic injuries [
32].
It has been reported that spinal cord injuries may ensue psychological problems such as emotional shock, depression, fear of future, loss of dignity, lack of self-care, loss of job, failure to continue education, loss of financial support by monetary institutions, and being deprived of social support [
34,
35]. Therefore, continuous professional care should be provided to prevent these patients from developing physical and psychological complications.
In line with the findings of this study, other researchers have elucidated that some patients with SCI suffer from financial problems. The costs of therapeutic and rehabilitation programs for these patients are considerably high, leaving many patients in poverty after the incident, so being supported only by charity institutions may be inadequate for these patients [
34,
36]. Therefore, it is required that these patients receive social and financial support from governmental and social welfare organizations, as well as charitable foundations. In accordance, the results of another study showed that social organizations and foundations supporting hospitalized patients and other vulnerable groups of society can play a major role in safeguarding the psychological security of these people [
37].
The findings of this study highlighted palliative care as one of the essential care needs of patients with SCI. This important issue encompassed the necessity of providing family care, considering the right of euthanasia for the patient, and preparing the family for the loss of their loved one. In order to deliver effective palliative care, the patient’s family should be informed of the prognosis of the disease and incoming problems from the early days of the injury. One of the important factors that can improve the quality of services is to involve the patient’s family in planning the care program, during which they should receive the necessary training, where a mutual relationship should be formed between the patient’s family and the specialist from the time of diagnosis until the patient’s death [
16]. In addition to providing comprehensive support to the patient during the disease course, the patient’s family should also become prepared for his/her death so that they can bear the grief easier [
38,
39]. Supporting the family should continue up to one month after the patient’s demise [
40]. In this regard, the findings of a study showed that the delivery of palliative care and deciding about ending a patient’s life can vary in different countries and based on the age and functional status of patients with traumatic SCI [
41]. Such decisions should be made in accordance with the upper-hand laws and cultural values of society. Nevertheless, factors such as the location of injury, type and extent of SCI, and most importantly, diaphragm functionality, can affect decisions about terminating a patient’s life [
41].
One of the issues that came under focus in this study was to consider the right of euthanasia for SCI patients. According to the definition by the World Health Organization, one of the goals of palliative care is to bestow patients a peaceful death [
42]. It has been mentioned that we should neither hasten nor delay the death of patients in the final phase of their lives so that they can enter the natural process of death [
43], a phenomenon that differs from euthanasia or physician-assisted suicide (PAS). According to the International Association for Hospice and Palliative Care (IAHPC), in countries and states where euthanasia and/or PAS are legal, the palliative care team should neither supervise nor implement euthanasia [
44].
Many groups oppose legalizing ending life by healthcare workers, presuming it as an immoral task [
45,
46]. Euthanasia is illegal in Iran, like many other countries, which is rooted in people’s opinions and beliefs. Therefore, it is necessary to observe this phenomenon from different social, legal, ethical, financial, and political aspects [
47]. However, others argue that people suffering from serious chronic diseases should have the right to choose the time and manner of their own death and believe that PAS and euthanasia should be legalized [
48,
49]. Regardless of the fact that people with SCI are prone to commit suicide [
50] and the increasing rate of euthanasia in some countries [
51], decision-making and arguments with regard to this issue are controversial due to ethical conundrums [
52], demanding more research. Nonetheless, it should be clarified that death is a personal issue, and the criteria of a good death vary among societies and are subjected to change over time. The care team’s good relationship with the patient and his/her family seems indispensable for achieving a peaceful death [
53]. Similarly, Sheng et al. clarified that caregivers should be aware of the patient’s expected life span, prognosis of the disease, anticipated symptoms, outcomes and complications of resuscitation, and the patient’s desires so that they can completely inform the family and help obviate the barriers of a natural peaceful farewell [
54]. A good death occurs at home, without pain, stigma, feeling dependent, or experiencing other distressing events, where financial support is provided for basic needs [
55].
One of the limitations of this study was the reluctance of formal caregivers to participate because of fear of the disclosure of some obstacles and challenges in their profession that might have caused them to be fired. So, they were assured that their information would remain confidential to encourage them to participate. Also, some patients and their families were reluctant to be interviewed at home due to security concerns and fear of their pensions being discontinued, whose trust was acquired by the intermediary role of formal caregivers.
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