Thirty-four participants took part in this study, of whom 16 (47.06%) were females and 18 (52.94%) were males. The participants’ mean age was 54.03 years old and mean disease duration was 7/97 years. Overall, twenty-three (67.64%) were married, 11 (32.35%) widowed, and one (2.94%) was divorced. The participants’ demographics are summarized in
Table 1.
The study data yielded 383 primary codes, twelve categories, and four themes. The four themes of the study were having the wholehearted support of a spouse, living with supportive family members and significant others, obtaining information, and confiding in physicians. These themes are explained below. These themes are presented in
Table 2.
| Meaning Unit | Condensed Meaning Unit | Sub-Themes | Themes |
|---|
| My wife regularly checks between my toes. (P12) | Considering foot care | Paying careful attention to spouse | having the wholehearted support of a spouse |
| She encourages me to do exercise. She even prepares my sports shoes. (P4) | Satisfaction from wife’s attendance to physical activity | Satisfaction with spouse’s performance |
| My husband knows how much diet is important for my health, so, he eats diet food according to my preferences. (P1) | Eating diet food by spouse | Understanding and helping spouse. |
| I read drugs leaflets. I get useful information. (P3) | Gathering information from drug leaflets | Active information seeking | obtaining information from reliable sources |
| In our village, Behvarze comes to my home and tells me what to do. (P18) | Receiving information from Behvarza | Inactive information acquisition |
| My children pay attention to my diet. When I go to their homes, they cook low-fat foods and change their diet according to my preferences. (P9) | Preparing diet foods by children | Family support | Living with supportive family members and significant others |
| My children warn me against using unhealthy foods. When I have time to visit my nutritionist and I don’t want to do so, they take time for me and take me there. (P16) | Warn and concern against using unhealthy foods | Children’s concern over parents’ health |
| My relatives and friends know that I’m sick. Therefore, they do not cook high-salt or high-fat foods when I’m their guest. (P22) | Preparation diet foods at parties | Support provided by significant others |
| My daughter doesn’t tell me bad news. Sometimes they unplug the phone, it helps me recover. (P15) | Help to recover with not saying stressful news | Family members’ attempt to maintain patient’s calm |
| The doctor doesn’t make mistakes, because he is the most important member in treatment, so, I absolutely take his advice. | Doctor the most important reference in health care system | Accepting physicians | Confiding in physicians |
| I do not manipulate my medicines. I change my medicines based on the doctor’s advice | Adherence to drug recommendations | Following physicians’ orders |
Abbreviation: P, Participant.
aBehvarz: Iranian rural health worker.
3.1. Having the Wholehearted Support of a Spouse
One of the main aspects of perceived social support was having the wholehearted support of a spouse. This category comprised of subcategories including paying careful attention to spouse, understanding and helping spouse, and satisfaction with spouse’s performance. After becoming aware of their partners’ diseases, the participants’ spouses became sensitive and attentive to their partners’ diseases and health status. Subsequently, the spouses strived to help their partners adhere to the recommended treatment regimens.
Wholehearted and informed support provided by the spouses brought the participants great satisfaction with their spouses’ performance. The spouses’ support influenced coping with adherence to treatments.
As soon as my wife noticed that I have developed a heart attack, she personally and effectively managed everything, including my dietary regimen, our household, and our children. She is the director of our household. It is because of her that I could cope with my disease (48y/o male).
In addition, the participants’ spouses attempted to understand and adhere to the prescribed dietary restrictions, and also to support the participants by encouraging them to do physical activities.
She does her best to encourage me to do physical activities. She even makes my sports shoes ready (59 y/o male).
Another aspect of support provided by the spouses was their sensitivity to the participants’ dietary regimens. They cautiously and wisely prepared healthy foods. Sometimes they even cooked foods other than foods prepared for other family members in order to help the participants adhere to the prescribed dietary regiments. Accordingly, the participants were confident that they were closely adhering to their regimens.
Before developing this disease, I used to eat restaurant foods. But, since developing the disease, my wife does her best to prepare foods that are both healthy for me and acceptable to other family members. When she is going to cook fatty food for other family members, she cooks something special for me (55 y/o male).
The participating patients were quiet sure that their spouses are always with them and support them, particularly when facing difficult situations or developing disease-related complications. Accordingly, they had a feeling of being supported by a kind supporter. Moreover, the participants’ spouses even helped them in self-care and self-monitoring activities.
Now, my wife monitors my blood sugar daily or every other day. She is very supportive. Sometimes when my blood sugar falls, she gives me some sugar solved in water or a spoonful of honey. She is now more skillful than me (44 y/o male).
Some of the spouses (especially females) strived to adhere to the prescribed regimens so strictly that caused the patients to feel some sort of dissatisfaction and uneasiness.
My wife treats everything very seriously. I ask her not to be so harsh; however, she does not pay attention to me. She even prevents me from listening to news, claiming that it makes me stressed. She has totally forbidden eating red meat, albeit I have been allowed (by my physician) to eat it occasionally (59 y/o male).
The male participants received various aspects of support (diet, exercise, stress management, medication adherence, etc.) from their wives, while female’s perceived support from their husband included concerns about their health and seeking health care.
He works for us. I do not expect him to help me in doing household work. When I go to the doctor for a visit, my husband comes with me because he is worried about my health.
(56 y/o female).
3.2. Living with Supportive Family Members and Significant Others
Another attribute of the participants’ perceived social support was living with supportive family and relatives. This main theme included categories, such as children’s concern over parents’ health, family support, support provided by significant others, and family members’ attempt to maintain patient’s calm. According to the participants, children have a pivotal role in helping their parents adhere to treatment and dietary regimens. When their parents develop a disease, children attempt to provide them with psychological support and help them adhere to their regimens. In addition to children, the participants’ relatives and peers also tried to facilitate the participants’ adherence to treatment and dietary regimens by providing them with a supportive, comfortable, stress-free environment.
Children also supported their participant’s parents by recalling disease risks and paying attention to diet and exercise, which had a positive impact on adherence to treatment regimens.
I didn’t like sports. I just took my daughter to a gym and waited there to take her back home. My daughter said that she would stop doing sport if I didn’t. Therefore, I enrolled at a gym and started doing a sport (42 y/o female).
The participants were satisfied and pleased with receiving support from their children. They attempted to follow their children’s advice due to having confidence in them. They believed that their children were attempting to promote their lifestyle.
My daughter likes fast foods. Nonetheless, she doesn’t eat fast foods and also prevents me from eating them (56 y/o female).
The participants stated that they were provided various types of perceived support by their children. Unmarried children provided greater help to their parents than married ones. Moreover, the daughters supported their parents in household chores and outdoors, while most support received from the participants’ sons were related to outdoor work, such as buying medications, etc.
All my children love me. Those of my children, who are married, have greater problems and cannot devote time to me as my unmarried children can. In addition, my daughters usually help in household chores and outdoors, but my sons help me to go to the doctor and buy medicine or anything related to my illness (68 y/o female).
Besides close relatives, significant others also strived to support the patients by introducing qualified physicians to them, accepting and valuing their dietary restrictions, alleviating their stress, and highlighting the importance of following healthcare professionals’ advice.
My relatives and friends know that I have this problem. Therefore, they try not to cook high-salt or high-fat foods when I’m their guest (48 y/o male).
However, the participants realized that received family support decreased over time. They expressed that their family members became tired and annoyed of helping them to remain in adherence with treatment regimens.
I understand that it’s hard for my children to eat diet food, and it’s also difficult for my wife to prepare two kinds of food. So, I do not expect to receive any further help from them (63 y/o male).
3.3. Obtaining Information
The third theme of the study was obtaining information. The two main attributes of this theme were active information seeking and inactive information acquisition. The participants’ experiences showed that obtaining information from reliable sources was an important source of support for them, particularly at the early phases of their disease. After receiving the definite diagnosis of their problems, the study participants started to gather information concerning their diseases, preventive strategies, self-care activities, medication use, side effects of medications, and complementary therapies. They gathered necessary information from credible sources, such as physicians, nurses, other healthcare professionals, friends, media, health centers, and clinics.
During medical visits, I ask all my questions from my doctor. For instance, I ask him questions about developing health problems after taking certain medications or about what I can eat and what I should avoid eating. Sometimes, my wife asks the doctor those questions that I forget to ask (56 y/o male).
Another source of information for the participants was community-based rural primary healthcare workers, who are locally called ‘Behvarz’ in Iran. Villager participants had limited access to information resources and hence, referred to Behvarz workers to fulfill their educational needs.
Behvarz workers are very good (source of information). Physicians aren’t readily accessible in our village. When you aren’t sure what (food or medication) you need to take, you can refer to Behvarz workers, who are always accessible. They always provide me with useful information (69 y/o female).
Health centers and clinics, such as cardiac rehabilitation clinics or diabetes mellitus care centers were other sources, which provided information to the participants (in the form of educational pamphlets and booklets or verbal educations), particularly during the early phases of their diseases.
The sources of my information are books provided by the Iranian diabetes society. I referred to the Society several times. They gave us books on nutrition, which contained information about factors behind developing diabetes and strategies for managing it (44 y/o male).
Participants with diabetes reported that the diabetic education program in diabetes clinics is only held in the morning so they are not able to attend. Limitation to accessing reliable sources causes poor adherence.
I’m a worker and need my job; I work in the morning, the diabetic clinic is only open in the morning. If I have a question, no one ever responds to my telephone calls (58 y/o male).
3.4. Confiding in Physicians
The final main source of perceived social support available to the participants was having confidence in their physicians, which included the two dimensions of accepting physicians and following physicians’ orders. The participating patients highlighted that they confided in their physicians and viewed them as the central authorities in healthcare systems. It is noteworthy that the participating patients’ confidence in physicians rooted in their childhood. As they confided in their physicians, the participants received educational support from them and followed their orders and advice. Following physicians’ orders was associated with closer adherence to treatments, better perceived outcomes, and higher satisfaction with physicians’ performance. Sometimes, they searched for and referred to more qualified physicians and sought medical advice from them. While they found new physicians’ advice as congruent with their own physician, they gained greater confidence in their own physicians.
When my doctor said that treatment regiments were not effective and I needed to inject insulin, I referred to several other doctors. They also confirmed insulin injection. Therefore, I found that my first doctor was right (because) all physicians study same courses. Then, I gained greater confidence in my physician and obeyed all his orders (58 y/o male).
However, some other patients had experienced physicians’ inattentiveness during hospitalization and hence, were dissatisfied with them. These patients highlighted that due to fatigue and heavy workload, attending physicians did not allocate adequate time to their patients and did not educate them and hence, caused them considerable confusion and distress.
When the attending physician comes to visit me, he just writes something in my medical records and says something to nurses. If I call him, he does not pay attention to me and just says that, ‘I will answer your questions later; I’m very busy now’. However, the time ‘later’ never comes (62 y/o female).