Inequalities in access to information: The case of cancer patients treated at the prefecture of Meknes—Morocco “Qualitative Research in Sociology”

Abstract

BACKGROUND:

If in the past the relationship between caregiver and patient was paternalistic based on the principle of protection, the advent of health democracy has made this relationship evolve to build it on the principles of equality and autonomy for the patient. However, this practice leaves something to be desired, given the forms of inequality in access to information that mark the relationship between caregiver and cancer patient.

MATERIALS AND METHODS:

The objective of this qualitative study is to present a sociological view of the process of shaping inequalities in access to information and its determinants. The study took place in the medical prefecture of Meknes, with a target population consisting of cancer patients treated in public and private health establishments. A qualitative content analysis approach using semi-structured interviews was employed.

RESULT:

A diversity of attitudes of the cancer patient with regard to the information, depending on whether the patient is strongly or weakly involved by the health professional in his or her illness or in the care he or she receives. In this case: a) active patient better informed; b) passive patient more or less informed; c) patient in denial who refuses to be informed.

CONCLUSION:

It seems that the issue of inequality of access to information is not a topical one, and yet it is given little consideration in the policies of the Ministry of Health, particularly in the fight against cancer in Morocco.

Introduction

When we talk about the issue of social inequalities in health, we think exclusively of inequalities in living conditions and access to care.[1] Whether they are territorial, social, or economic, they contribute to a large extent to disparities in health and care between individuals.[2]

However, there are other forms of inequality that are more insidious because they are less visible and which are lodged at the very heart of doctor–patient relations: inequalities in access to information on the patient’s condition, diagnosis, illness, possible treatments, their effects, or risks—all of which are necessary for the exercise of decision-making power.[3]

In this sense, Fainzang made the innovative choice to “depsychologize” patient information and focus on its social mechanisms. To this end, she conducted extensive fieldwork in hospital departments, mainly in cancerology, with doctors and patients.[4] According to the author, the criteria for providing information to patients are largely social. She notes in this respect that information on the state of health, as well as information on the risks of treatment, is more readily given to individuals from a higher sociocultural level, even if they do not ask for it.[5] Conversely, patients from disadvantaged backgrounds are often unable to formulate questions that reflect their information needs, or they do not dare ask health professionals.[6] Even doctors opt to lie to patients from disadvantaged populations.[7] The satisfaction expressed by patients with their exchanges of information with healthcare professionals is socially differentiated (particularly among men): The least educated and those with the lowest incomes are less often satisfied with these exchanges.[8]

Research in the USA has shown that socioeconomic status affects how a patient is treated therapeutically: the higher the status, the more likely the patient is to be seen by the doctor rather than the nurses, the more consultations they have, and the more likely they are to receive an intervention.[9]

On the other hand, it does not appear that these people with low education or low income complained of lower involvement in therapeutic choices. On the contrary, “the lower their level of education, the more this lack of involvement was preferred; numerous studies show that a mode of doctor–patient relationship described as paternalistic by some authors or delegation by others is preferred by patients of extreme age and those with the lowest level of education.”[10]

In light of previous studies, the objective is to take a sociological look at the process of shaping inequalities in access to information for cancer patients through a comparative analysis of the trajectories of cancer patients.

Materials and Methods

Study design and setting

This sociological study takes a qualitative approach and uses a hypothetico-deductive method to shed light on the understanding and analysis of information provided to cancer patients. It is part of a study of the care trajectories of all categories of the social hierarchy. The study took place in the medical prefecture of Meknes—Morocco, with a target population of 35 cancer patients treated in public and private health establishments.

Study participants and sampling

The selection criterion was the maximum diversity of profiles the cancer patients with regard to the problem studied. By diversifying the profiles as much as possible, we have a good chance of gathering varied and contrasting responses. As the data collection progressed, the content of the responses reached saturation point, and the last interviews added virtually nothing to the previous ones. At this saturation point, it was legitimate to end the interviews and consider that the sample chosen, although not strictly representative, was nonetheless valid.

Data collection tool and technique

A large amount of data was collected through semi-structured interviews with cancer patients. A summary table of the respondents interviewed was also produced [Table 1]. It lists the 35 patients and summarizes their characteristics: gender, age, place of recruitment, socioeconomic class, cancer location, whether or not there was a recurrence, treatments received, medical coverage, and family situation. It was therefore necessary to classify this information to draw relevant conclusions. To code the semi-structured interviews using ATLAS.ti software, a link was established between the specific keywords identified and the respondents’ answers. We then established links between the different responses and drew conclusions.

Table 1.

Sociodemographic data of patients

Sructure	Gender	Age	location	profession	level	Status	Provence	Medical cov<	attitude info
ROC	F	57	Breast	Without	Illiterate	Married	Meknes	RAMED	Active
ROC	M	81	Lung	Retired	Primary	Married	Tinghir	CNSS	Active
ROC	F	56	Breast and lu	Without	College	Married	Meknes	RAMED	Passive
ROC	F	37	Breast	Without	Illiterate	Single	Taroudant	RAMED	Passive
ROC	F	52	Breast and li	Saleswoman	Bachlor	Divorced	Meknes	RAMED	Active
ROC	M	55	Throat and lu	Daily	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	52	Breast	Without	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	45	Breast	Without	Illiterate	Divorced	Bhalil	RAMED	Passive
ROC	F	43	Breast	Worker	Illiterate	Divorced	El Hajeb	RAMED	Passive
ROC	F	60	Breast	Without	Illiterate	Divorced	Meknes	RAMED	Passive
ROC	M	29	Bladder	Without	Illiterate	Married	M'rirt	RAMED	Passive
ROC	F	50	Liver cancer	Without	Illiterate	Married	M'rirt	RAMED	Passive
ROC	F	54	Breast	Without	Primary	Divorced	Taoujdate	RAMED	Passive
ROC	M	63	Prostate and	Worker	Primary	Married	Agourai	RAMED	Active
ROC	F	35	Breast	Without	Bachlor	Married	Meknes	CNSS	Active
ROC	F	42	Ovary	Without	Bac	Divorced	Er-Rich	RAMED	Active
ROC	F	35	Spine	Without	College	Divorced	Meknes	RAMED	Active
ROC	F	51	Clavicle and	Without	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	72	Lung	Without	Illiterate	Divorced	Khenifra	RAMED	Passive
ROC	M	70	stomach	Without	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	58	breast	Without	Illiterate	Married	Midelt	RAMED	Passive
ROC	M	66	lung	Trader	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	40	breast	Without	Illiterate	Married	M'rirt	RAMED	Passive
ROC	F	39	Uterus	Without	Illiterate	Divorced	Meknes	RAMED	Passive
ROC	F	50	intestine	Without	Illiterate	Widow	Meknes	RAMED	Passive
ROC	F	44	Breast	Without	Primary	Married	Agourai	RAMED	Passive
ROC	M	63	Stomach	Worker	Illiterate	Married	Meknes	RAMED	Passive
ROC	F	49	Breast	Teacher	College	Married	Meknes	RAMED	Active
Private	F	54	Recurrent br	Professor	PhD	Married	Meknes	CNOPS	Active
private	F	48	Breast and rr	Nurse	Bachlor	Married	Meknes	CNOPS	Active
private	F	51	liver	Civil servant	Bachlor	Married	Meknes	CNOPS	Active
private	F	44	breast	Director	PhD	Married	Meknes	CNOPS	Active
private	F	40	breast	Employee	College	Widow	Meknes	CNSS	Active
private	F	47	breast	Household	Primary	Divorced	Meknes	CNSS	Passive
private	F	36	breast	employee	Bac	Single	Meknes	CNSS	Active

٭ROC = Regional Oncology Center, ٭RAMED = medical aid scheme for economically deprived persons, ٭CNSS = National Social Security Fund, ٭CNOPS = National Fund of Social Welfare Organizations

Ethical consideration

During data collection, the investigators took all the necessary steps to protect the rights and freedoms of study participants. As a result, the study complied fully with the fundamental rights set out in the Code of Ethics, namely: a) the right to self-determination; b) the right to privacy; c) the right to anonymity and confidentiality; d) the right to protection from discomfort and harm; and e) the right to fair treatment. In this respect, the study has been examined and approved by the University Hospital Ethics Committee of Fez, Morocco, on 09-03-2022, classified under number 15/21.

Results

Three attitudes of the cancer patient toward information have been noted [Tables 2–5], depending on whether the patient is strongly or weakly involved by the health professional in his or her illness or in the care provided to him or her, namely: a) Active patient is better informed; b) Passive patient who is more or less informed; c) Patient in denial who refuses to be informed.

Table 2.

Cross tabulation attitude information * gender

	Gender		Total
	F	M
Attitude information
Active	12	2	14
Passive	16	5	21
Total	28	7	35

Table 5.

Cross table medical coverage * attitudes information

	Active	Passive	Total
Medical coverage
CNOPS	4	0	4
CNSS	4	1	5
RAMED	6	20	26
Total	14	21	35

Table 3.

Cross tabulation attitude information * educational level

	Bac	Bachlor	College	Illiterate	PhD	Primary	Total
Attitude information
Active	2	4	3	1	2	2	14
Passive	0	0	1	17	0	3	21
Total	2	4	4	18	2	5	35

Table 4.

Cross tabulation profession * attitude information

	Attitude information		Total
	Active	Passive
Profession
A daily labor	1	4	5
Civil servant	1	0	1
Director	1	0	1
No occupation	4	16	20
Nurse	1	0	1
Private payro	2	1	3
Professor	1	0	1
Retired	1	0	1
Saleswoman	1	0	1
Teacher	1	0	1
Total	14	21	35

An active, better-informed patient always seeks more information. This is manifested in the strongly expressed demands of patients, who seem to have a good knowledge of their disease and are able to understand it better. They are patients who see the disease as an insidious deterioration that can be avoided or delayed as much as possible, have an acceptable socioeconomic status, have AMO medical coverage/medical insurance, belong to a relatively young age group, and have an acceptable or higher level of education.

The more or less informed passive patient is content with the information available to him/her and considers himself/herself satisfied with the existing information. This patient has little or no involvement; rarely knows about his or her treatment and often has no interest in a lot of information. They are elderly patients, with a low level of education and a low socioeconomic status, with RAMED health coverage. These patients transfer the responsibility to another person whom they consider more capable of making a choice, due to the feeling of lack of information. For these patients, the disease is, on the one hand, a sudden event over which they have no control.

In the attitude of denial according to parallel observations, the patient is opposed to communication. There seems to be a pseudo-agreement on the content, he refuses to establish any relationship with the caregivers and refuses information. These are the patients followed in the palliative care unit.

Discussion

Treating cancer is not only receiving medical or surgical treatment, but it also requires the well-being of the patient at the heart of a care process that goes beyond medical treatment toward a caregiver–client relationship, guaranteeing the rights of patients in information through effective involvement in the management of their disease. In general, cancer information includes general information on cancer, specialized information on the type of cancer, information on diagnosis, treatment methods, information on medication and the most suitable diet, etc.[11]

In this regard, the results of a study conducted at Seyed Al Shohada Hospital in ISFAHAN indicated that cancer patients have a positive attitude toward health information and consider the use of health information as beneficial. They mentioned that health information can be used to “control their conditions,” “adapt to their new status as a cancer patient,” “control stress and anxiety” as well as “continue to fulfill their social role” by improving their expectations about the outcome of their disease.[12] In other words, the adoption of a model that favors “shared decision making” based on a two-way exchange between caregiver and patient for and on taking into consideration the views and values of the cared for with regard to their illness, treatments, and management.[13]

However, according to the results observed, this involvement in the care process is not done in an equal way among patients; worse, it differs according to the social and cognitive criteria of the patients or by some subjective preferences of some caregivers.

The study showed, according to the responses¹ of the cared for, that illiteracy is one of the main causes of the aggravation of the infringement of the patient’s right to information, in this respect Ahmed affirms² “The only thing I know is that I have a tumor in my stomach, the last time my doctor prescribed some tests, he didn’t tell me anything about it, the next visit, I didn’t bring with me the requested tests because I didn’t know it, I didn’t know it, then after I went to the hospital, I didn’t have my treatment, it was postponed to a later date because of my ignorance.” “I don’t ask my doctor for anything, I know that what is good for me, he will do it, I am illiterate and I don’t need to know anything. sometimes when the doctor wants to talk to me about something, I call on my son, he is the one who talks with him. Jamaa³ in the same vein.” “I don’t know anything, the doctor is doing his job., what am I going to tell you my son..the illiterate is like a beast.”

According to these testimonies, the relationship between the caregiver and the patient is marked by an asymmetry; the former holds the medical knowledge, and the latter is weakened by his or her cancer disease; this leads to a situation of almost total dependence of the patient on the caregivers. Anxiety, depression, lack of satisfaction, and an attitude of passivity toward the care provided were strongly noted.

For other patients, a more complex flow of information makes it difficult to assimilate, reduces their memorization, and decreases their confidence in their judgment. As a result, the cared-for person feels disempowered by their treatment and feels they have neither duty nor right. As Abderrahmane⁴ points out, he is dissatisfied with the quality of the information. In this regard, he states: “..when I ask the doctor: what have I got doctor?..he answers me (tatatatata), I don’t understand anything..and the doctor I see today, for example, is not the same one who takes care of me the next session..(euuuh) there is nothing good in this hospital, that’s all…” The main problem raised is the ignorance of the majority of patients of their right to information as a patient, such as their right to consent, to free choice of doctor, to confidentiality of information, etc. All this leaves the door wide open to medical care that leaves much to be desired. In this respect, Noura⁵ emphasizes that doctors are often “in a hurry,” that consultations are “quick” and that they do not always have the opportunity to ask all the questions they would like to discuss: “ the only thing I reproach the doctor for is that it is often too quick.. They don’t have the time to talk for as long as possible. it bothers me a little.” Patients are thus perceived as irresponsible people, unable to understand their disease or to decide on their therapeutic process: the health professional is positioned as the one who has the knowledge and the patient is in ignorance. Other patients claim to understand rather well what the oncologists explain in consultations. They do not seem to have difficulties with too much medical jargon: Hanane⁶ says “It’s always clear, it’s well explained.., I always have answers to my questions so.., I don’t remember having a session where I didn’t understand anything.” Zaquia⁷ too, explains “whenever I have something that bothers me, I first look for it on the internet before discussing it with my doctor, fortunately my doctor gives me time and explains what it is about, sometimes I abuse to ask but..my doctor supports me and tries to satisfy me.” According to Zaquia, consultation times are acceptable, but there is an increasing referral of patients to the Internet and other sources of information outside the hospital. Aicha⁸ for her part opts for the same strategy “..yes of course I always try to do research on the internet about my disease..or watch some TV shows that talk about cancer disease..and given the nature of my work, it makes it much easier for me to deal with my disease.”

This favored category of patients surveyed communicate more actively, ask for more information, have greater affective and emotional expressiveness, and express strong opinions more often and more easily. This finding shows that patients are able to advocate their views to caregivers, thanks to their access to new information and communication technologies, and even at a more organized level. They exchange information and experiences with the disease via forums or discussion groups on WhatsApp, which enriches the exchanges they have with caregivers. This is an understanding of medical rules and norms, and hence an effective participation in decision making within a preestablished contractual framework between caregiver and patient. This is obviously a caregiver–patient relationship that fits in perfectly with the current of interactionist sociology, where the authority of caregivers becomes minimal toward their patients, highlighting, according to Strauss, the “negotiated order” between the various parties involved in medical care.[14] The relationship between caregiver and patient is no longer unilateral, but the patient is now considered as a thinking and free subject, a user of care and holder of rights: the right to appropriate, clear, and fair information, the right to respect for dignity, privacy, and professional secrecy.[15]

However, for ethical reasons, the “principle of beneficence,” the information is not always completely given to the patient, either under the pretext that it is not always beneficial and/or that the patient is able to understand and bear it, especially in cases with an advanced stage of the disease.[16] In this respect Doctor X specified: “The oncologist is supposed to explore the patient’s previous knowledge of his or her illness, his or her personality, his or her degree of acceptance of the disease and then, depending on the situation, to adapt the announcement and inject it in small doses according to the situation.” Sometimes, even families still ask that patients not be informed of the diagnosis, as there is a risk that someone will inadvertently share the information with the patient, which has a negative impact on the credibility of the healthcare team and the family.[17] This raises several questions about the ethical requirements for health professionals, especially when talking about an “Ethical Dilemma” between the principle of “Beneficence” as a moral obligation to act in the interest of the welfare of others and “Autonomy” precisely “Free and Informed Consent” which must be given with full knowledge of the facts.[18] Indeed, the cancer patient is normally expected to receive all the information relevant to his or her decision making as most individuals are able to adapt to the diagnosis over time.[19] Transparency of diagnosis and prognosis allows patients to think more realistically about their condition and to actively participate in planning their medical care.[20]

However, despite this ethical requirement (free and informed consent) which is imposed on caregivers, it seems that in certain complex and dramatic situations of patients, “lying” according to Fainzang is an essential ingredient in the therapeutic relationship between caregiver and patient:[21] in these conditions, “consent is not informed, it is resigned.” Ménoret does not use the term “lying,” but notes that “the areas of unspoken”: doctors generally assume the announcement of a cancer, but they hesitate to lift the “taboo” of the aggravation of the disease.[22]

But, if for certain chronic diseases such as diabetes, cardiovascular AIDS, etc., we can speak of a certain flexibility in the therapeutic relationship, for cancer the medical-delegated role is rarely observed with the cancer patient given the extreme seriousness of the disease. However, this situation does not mean that the cancer patient is totally excluded from the management of his disease. Some patients adopt the role of sentinels in the affirmation of the cancer diagnosis, monitoring changes in their bodies and their progress to detect worrying clinical signs at the appropriate time.[23]

After the treatment has been implemented, it is necessary, even indispensable, that the patient has an active role, whether by cooperating with medical acts and nursing care, by adapting to new physical sensations or side effects, or by refusing or accepting certain medical acts or treatments with notable side effects.

Conclusion

It seems necessary to underline that informing the cancer patient is not only a specific care, it is also a real modern philosophy of care at the service of the patient. Several nations, like France, have evolved in this field, with the aim of achieving what they have called “health democracy.”[24]

Nevertheless, this case does not find a good echo in Morocco either. The scarcity of writings and studies dealing with the subject testifies to this fact. This observation was a motivation for conducting a study on the diversity of situations of access to information for cancer patients in relation to socioeconomic status, cultural values of the patients, and also in relation to public and private care institutions. It is true that the Moroccan Ministry of Health has made significant progress in combating social inequalities in health in relation to cancer, both economically and geographically, by correcting imbalances in the supply of care. Nevertheless, it seems that the theme of announcing and informing cancer patients is poorly integrated into the Ministry of Health’s action plans for the fight against cancer.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.