Living circumstances and vulnerabilities.

Individuals with multimorbidities’ life circumstances change with ongoing personal and structural issues resulting in continuing vulnerabilities. The individuals describe financial issues, low income, rural living conditions, unemployment, transportation issues, poor housing conditions, and physical disabilities affecting their self-management of multimorbidities [25–35]. These circumstances made them vulnerable to poor and inadequate self-management.

Many individuals described that initially, they had the finances to manage their health care problems. However, as their health care conditions deteriorated and needed more self-care, they ran out of funds. They had to pay out of pocket for basic medical needs such as medications and equipment for self-care. Lo et al. [30] reported that individuals felt stressed because they had to travel a long distance to seek health services, payout of pocket for essential services, and incidental costs such as car parking. Limited finances made it difficult for them to make a difficult choice of staying home and avoiding seeking care.

Such living circumstances prevented them from seeking care and engaging in self-management and affected their emotional health, leading to stress, confusion, uncertainties, and fears. Sav et al. [35] noted that medicinal and consultation costs instigated the financial burden. The individuals felt worried and concerned if they could manage their multiple health issues. Analysis of individuals’ experiences in the reviewed studies indicated that Self-management was for the privileged, and individuals with structural, personal, and social vulnerabilities struggled to care for themselves while also striving to meet the needs of their families.

“The money is not enough. I can’t even afford my rent and diabetes foods. I also need to buy foods and medication for my wife. I only try to buy whatever I can, but I never get to achieve what the doctor recommends […]. Although I adhere to my medications, I do not see much changes. My diabetes and blood pressure seem to be getting out of control

[26, p. 379].

Scarce health care resources.

Individuals described a lack of health care resources and services which made self-management a complex and tiresome process. The health care centers, and specialized care services were at a distance from individuals’ homes and most of them did not have transportation. In the communities, there was a shortage of medical supplies [25, 27, 28, 30, 32, 34, 36]. The individuals did not have health care insurance to meet the expenses of medical and specialized care. Those who had insurance received reductions and cutbacks because of their multiple complex health care needs and they expressed that their insurance was not sustainable. Ho et al. [32] noted that some individuals received home care services and covered the expenses through private insurance. However, financial challenges and disease burden resulted in cutbacks in the hours and visits received from formal caregivers.

Lack of health care resources in the communities and the inability to travel to distant hospitals prompted many individuals to put greater emphasis on home remedies and herbal medicine to manage their health issues [26, 34] The use of herbal and traditional medicine was also prompted by social and cultural beliefs, lack of medical centers, and peer pressure. Given the shortage of medical facilities, many traditional healers often encouraged individuals to give up their prescribed medicines. Morgan et al. [37] described that women with HIV and multimorbidities bought herbal medicines from local vendors and churches.

Many individuals did not have family doctors so it was almost impossible for them to seek medical advice and consultation when needed [32] The lack of facilities and health centers in the communities aggravated their conditions, further adding to the issues of seeking medical support. These individuals had to travel to far-off places to talk to specialists. Signal et al. [38] discussed that many individuals had to see professionals in primary care because they no longer had a family doctor. Individuals with diverse ethnic backgrounds noted that when they can access health care services, they cannot explain their issues because of the lack of interpreters in health care centers [30]

“They get cut back. Like with the PSW, I was given 3 times a week and then when they start getting towards the end of the budget, the money’s running down, then you get cut back. And sometimes you get it back, sometimes you don’t….”

[32, p. 1314].

Intrusive health care delivery system.

Individuals discussed that the health care system is challenging to navigate because the bureaucracy gets in their face when they try to seek care and support. They explained the difficulties in scheduling their appointments, switching health care professionals, and providing the paperwork for seeking health care services [29, 30, 32, 34, 36–39]. They noted a lack of coordination among health care professionals resulting in costing them their appointments and consultations [30, 35, 38, 40–42]. Individuals living in poor housing and unstable shelters experienced struggles to seek medical attention when needed. They experienced logistic struggles in making, attending, and changing their appointments [32, 35, 42].

Individuals noted bureaucracies that affected their ability to seek health care services. Some individuals did not have the paperwork, or the documents needed to avail themselves of the services. While those who had the paperwork, the government, and the institutions did not approve it, or they had to wait a long time before it was approved [26, 28–32]. Villena and Chelsa [42] noted that navigating institutional bureaucracies within the Medicaid system was a consistent struggle. This struggle was worsened if they also lived in unkempt and dangerous housing accommodations. Such health system issues combined with social vulnerabilities affected individuals’ trust in the health system and its efficiency to address their multiple needs [27, 32, 39].

“The State said I’m not eligible for Medicaid. But we have a diagnosis of diabetes, emphysema, and now, cancer. Why? Because I worked? I gave up my job, and I still didn’t get the Medicaid. I had no medical insurance. I had to fight them. I went to Legal Aid. The State said I defrauded them because I worked. I finally got my Medicaid in July. I got the energy and got up and fought the system and their red tape because I needed to. I needed the Medicaid, or what was I gonna do? Just die? As it stands, I owe $182,000 worth of medical bills”

[42, p. 82].

Intercultural issues.

Two intercultural struggles were ethnic and gender differences. Individuals from diverse ethnic backgrounds experienced more challenges to access healthcare services than native residents. The bureaucratic health care system greatly influenced this intercultural issue because those with different ethnic backgrounds had to provide more paperwork to prove that they qualified for health care services. Bosire et al. [26] shared an account of a woman who did not speak and understand English and required her sister’s help during- clinical appointments. Her mother was Lesotho and her father was a South African. They passed away because of HIV. She and her siblings were denied the right to be a South African citizen. Therefore, she did not have any proof making her eligible to access primary care services offered by the government. Lo et al. [30] discussed that some patients expressed that being a non-English speaker with a different ethnicity and culture characterized by apathy negatively influenced self-management and dietary restrictions. Pertaining to gender discrimination and self-management, only one study noted that [37] women face more issues in accessing care and engaging in self-care because they were dependent on their families and community to offset the financial burden of chronic disease management and treatment.

“As for that one my child, eating is even difficult for us. …The time that I am supposed to eat, I don’t get food to eat … It is only the boys who support me a little. It is almost one year since I got paralysed and none of them have called on phone to find out how I am doing. If I don’t call them, then I would not hear from them. They are all into businesses, but they do not mind me, let alone to support me financially”

[37, p.11]

Intrapersonal familial struggles.

The intrapersonal familial struggle was conceptualized as individuals’ tensions within their families and, or with family members, affecting their self-management. Individuals discussed a lack of family support [41, 42] Many of these individuals had to rely on their families for financial, physical, and emotional support. However, often the support was not available [31, 37, 38]. Some individuals considered their family as the source of stress which prevented them from fully engaging in self-management of their multiple health care issues [28, 37, 40]. Individuals also noted that focusing on self-care sometimes led to feelings of guilt for not caring for their families [29, 40]. They often had to make a deliberate choice of competing family priorities [28] and sacrifice their own needs for their family members which created intrapersonal tensions [29].

“I mean a lot of that has been completely on my wife as far as paying the house note and most of the bills through a lot of this, and that’s caused tension, of course… We have been on this kind of rocky road”

[29, p. 44].

Epistemic injustice influencing motivation to access care.

Many individuals had health care problems (e.g., AIDS), which are often stigmatized among the general public and communities. Others experienced stigmatization because of their age, gender, and living conditions [27, 37–39]. The individuals noted that they felt voiceless in front of health care professionals because their concerns and complaints were not listened to attentively [29, 34, 37, 42]. Often the health care professionals asked the patients not to schedule any appointments unless necessary without considering the needs and viewpoints of the patients [41, 43]. Some individuals felt misunderstood because they often did not know the typical labels and descriptive language to describe their health problems to health care professionals [41–43]. Health care professionals ignore holistic needs and care and tend to address one disease at a time [34, 37, 41, 42]. Individuals were concerned that addressing one disease at one time did not offer them adequate knowledge to manage any interrelated symptoms of multiple diseases [34, 41, 42]. Generally, the individuals struggled to explain their perspectives to their health care professionals [42].

“You can phone in and the doctor will talk to you or you can phone a nurse and they will talk to you. ‘Please don’t make an appointment unless it is absolutely necessary.’ Well, what do you know is absolutely necessary? I have been rushed into hospital because I have left it too long, because I won’t bother them”

[41, p. 62].

Relational conflicts.

Individuals discussed that while navigating the complex health care services and managing their chronic issues, they had many conflicts with health care professionals [29, 30, 36, 42]. The conflicts were varied in nature. For example, clashes among patients and clinicians regarding patient preferences and professionals’ viewpoints about treatment modalities and goals [36], patients’ struggling to convince health care professionals of the urgency of their health care needs due to deliberate care neglect [42], and conflicts about poor and wrong communication about disease, care, and tests from health care professionals [29–32]. Many individuals noted that the source of the conflicts was often non-caring attitudes, lack of attention from health care professionals, and bureaucracies surrounding health care access and services [26, 29, 30, 41]. Relational conflicts shattered patients’ trust in health care professionals, thereby affecting individuals’ ability and preparedness to perform self-management [27, 29, 42]. The lack of trust in health care professionals also stemmed from past negative experiences in health care [27].

“A few days after my appointment, I noticed that my sugars were high in the morning when they shouldn’t have been. So, then that’s when I realized, oh, this is N, and not 70/30. I called and left a message on the doctor’s voice mail. She was on vacation, but I knew that she would pick it up Monday. And she called on Monday and said, “Oh, yes, I did give you the wrong insulin.” She tried to correct her mistake by telling me to go back to the clinic that day and get another prescription”

[42, p. 80].

Substandard health education.

Individuals raised concerns about substandard health education from the health care professionals. Many individuals noted that the health care professionals completely ignored educating them about their disease, treatment, and care modalities [30, 33–35, 41, 42, 44, 45]. However, others noted that the education was delivered with jargon-loaded language without considering the education level and needs of the patients [30, 33]. The self-management of individuals was greatly affected by the failure of health care professionals to provide sufficient advice on managing complications and urgent health care issues interlined to multiple diseases [27, 31, 34, 35, 41–44]. Concerns were raised that health professionals were time-poor and did not take the initiative to offer any health education or explanations unless asked by the patients [30, 34, 43]. If health education was offered, individuals noted a lack of follow-up from health care professionals [38, 40, 41]. Given the lack of quality health education, most patients relied on trial and error learning for self-education and explored their resources to learn about disease management [31].

“…and I ask the doctor, ‘What’s diabetes?’ Sugar is high … even today I still puzzled because they are not explained properly how high … the sugar [is]. All they say is ‘diabetes’

[33, p. 231].