Dr. Jorge Partida, June 29th, 2004.
There is perhaps no other word as instantly fear producing as cancer. For most Americans, the word creates an automatic reaction of fear and panic.

People in the United States are living longer and inevitably more and more of our general population will receive a diagnosis of cancer at some point in our lives. Experts state that as much as one third of all individuals will have to contend with some type of cancer within their lifetime.

In recent years, the dedicated work of so many breast cancer survivors has created heightened awareness, education and information. Women have demonstrated great courage and strength in speaking honestly and openly about their personal experiences and struggles.

Many dedicated survivors have organized and have created social support networks, agencies and alternative healing venues. These organizations have facilitated access to medical and other ancillary support and care services. Despite these successful efforts, women of color, and particularly Latina women, are greatly unaware of many of these services and organizations. As a group, Latinas often are still lacking basic information regarding detection and treatment of breast cancer.

Although, by most estimates, the Latino population will be the majority within the next decades, services are seldom designed with a particular sensitivity and focus to meet the needs of this population.

How can health care professionals, volunteers and others interested, provide effective, culturally competent services to Latinas? As breast cancer impacts every element of life, how can services and support, effectively address these multiple challenges presented to Latinas and their family? This article will provide some guidelines and insights for those professionals and paraprofessionals interested in designing and implementing care services.

More than one third of all Latinas in this country lack proper health insurance coverage. Many women fear they cannot afford to know their health situation for fear of the devastating economic impact the illness will have upon their family. Economics within the Latino community have a varied distribution according to gender.

Latinas are usually able to secure employment easier than their male counterparts, and often at a higher rate of pay. In a culture where the men hold the traditional role as providers, for traditional Latino male-female relationships, this fact often adds an added stressor to the relationship dynamic. Both men and women tend to work for small businesses, restaurants, private individuals and other unskilled manual labor jobs where appropriate health coverage is seldom, if ever, provided.

Traditional health systems have become expensive and overburdened. The difficulties in navigating the system’s complexities make health care prohibitive for many Latino families. Latina patients often report feeling invisible and unimportant, further intimidating many to the point of keeping them from services.

Many Latinas fear deportation or investigations of home environment by social systems. Fears of major systems are not unfounded. Many Latino families share personal experiences of damaging interactions with social services, public schools, health and judicial systems that often have left individuals and families mistrustful and traumatized.

Despite the growing number of Latino individuals in this country, most doctors, nurses, social workers and other health professionals, receive one course or less on training specifically focused on delivery of culturally competent care to diverse populations.

Protocols and best care practices are designed specifically with a majority perspective and often do not consider that the services designed might not be appropriate for non-majority populations. All professions prohibit a member from practicing outside of their scope of practice and expertise.

Prior to working with populations with whom they have little to no professional experience, professionals are required to seek a minimum number of additional training hours, clinical supervision and consultation. When working with Latina patients, professionals seldom identify their lack of specific cultural competence training nor do they request outside consultation, guidance, or supervision.

Not surprising, many professionals feel ill equipped in providing care to Latina women and often are too intimidated, or too busy to ask for appropriate supervision and direction. While this article is not meant to replace much needed training in the area of service design and implementation, it is intended to provide the reader with some basic information regarding the role of culture in care services.

The Latino culture is a diverse spectrum of varied experiences and backgrounds. Our culture varies greatly in socio-economics, education and the racial spectrum. While these observations are offered as general guidelines, it is most important not to make gross generalizations to an entire population. Although we may be a diverse group, unfortunately, most Latina patients consistently report experiencing resentment and racist attitudes when seeking services.

What patients experience as resentment, may actually be due to the professional’s lack of appropriate cultural competency training. Professionals are more likely to feel uncertain and uneasy in their treatment of Latinas if they have not been properly trained.

This lack of professional confidence often manifests itself in poor patient interactions. Professionals, for example, are more likely to make negative assumptions about a Latina patient’s ability to pay for services, their personal habits and their ability to follow through with recommended treatment regiments. Racism and prejudicial treatment of Latina patients often creates a self-fulfilling prophecy where the worst expectations and assumptions regarding Latina patients becomes a reality.

Fear and lack of accurate information about cancer and prognoses, coupled with the indifference and outright hostility women encounter when seeking medical services keeps many Latinas from returning and complying with the recommended care.

Latinos, as the fastest growing and soon to be majority group in this country, face many serious complications and barriers towards the procurement of screening, prevention and treatment. Latinos on average are much younger than the majority population and tend to have more children per families. Despite the relative youth of this population and their growing numbers, as a group, Latinos are also the most isolated of any of the large ethnic minorities.

This sense of isolation is partly attributed to language and education. Latinos possess the lowest levels of formal education than any other ethnic groups. In some large cities, as is the case in Los Angeles, more than 40% of all students beginning the ninth grade do not graduate from high-school. This is an important consideration when having to communicate complex factual and emotionally charged information to the newly diagnosed patient.

Most women, upon being informed of their breast cancer diagnosis fall into an emotional paralysis which can temporarily prevent proper comprehension of factual information. Understanding the clinical implications of a cancer diagnosis requires the ability to comprehend complex medical concepts that are seldom explained well enough for any patient to feel she possesses the necessary confidence dominating the material provided.

Due to overwhelming burden on our traditional medical system, many doctors and other health professionals actively discourage patients from asking questions. For Latina women, the element of respect for authority figures further inhibits the likelihood that pertinent questions will be asked.

Health professionals and those providing support services to survivors of breast cancer, must understand the significance of this diagnosis on the physical and overall well being of Latina women and their families. The provision of information and services must be delivered and administered within a framework that emphasizes cultural sensitivity and cultural competence.

This article will highlight some factors to consider when delivering services and support to Latina women and their loved ones who are struggling with breast cancer.

Latinas, upon being informed of a breast cancer diagnosis, are more likely to be concerned about the impact of disclosure upon their children and family than even upon their own well-being. Women, particularly Latinas, frequently find self meaning in the strong matriarchal roles they assume within their respective families.

In the Latino culture, men might play the strong, silent provider role, but women are the emotional and effective conduits for entire future generations of men and women alike. Men may not be socialized to express emotions, frustrations, fears and insecurities, but women intuitively seem to know how to read the quiet signs of male turmoil and insecurities.

It is easy to see how Latinas too often carry the emotional and psychological health of their entire family. Therefore, when the “expressive” head of a Latino family is stricken with breast cancer, her first concern too often is to protect her children and her husband from the devastating news and subsequent trauma. This means that often, newly diagnosed Latina women do not give themselves sufficient time and emotional resources to internalize the diagnosis and its implications.

While majority women tend to surround themselves with professionals and social relationships that offer support and encouragement, Latina women tend to instinctively focus on the impact the diagnosis will have upon their ability to care for their children and family.

At this point Latinas have a tendency to inconsistently follow-up or want to withdraw from services. This fear and uncertainty regarding treatment is typically interpreted as resistance to treatment or denial about the seriousness of illness. In actuality, Latinas might be attempting to keep their children and family from being hurt.

In our main steam culture, a focus on the self and the expression of the needs of the self are considered healthy ways of exercising one’s autonomy and assertiveness. Well meaning professionals often advice their Latina patients to focus on themselves first rather than on their families and children.

Many professionals believe that the over identification of Latinas as the female head of the house has resulted in a self denying attitude which has contributed to poor health. Rather than directly challenging the clients self reference, it might be more beneficial for the professional to actively encourage the patient to build a support system which may involve timely disclosure of her diagnosis to children and other relatives who might be of support.

Disclosure of information and inclusion of family members in treatment can be achieved when the professional and/or paraprofessional is as receptive to teaching as to learning from the patient. Having an emotional language to discuss feelings and personal thoughts is a skill that is valued as we are socialized in the majority culture.

The permission to disclose, the required emotional language and the skill set needed to express one’s inner feelings, are skills not necessarily taught or encouraged in other cultures. While Latina patients might benefit from personal disclosure, the person working must be able to effectively teach these skills. The professional must learn about Latino family dynamics, communication styles and processes of acculturation and assimilation.

Respect and familialismo dictate the hierarchy and supportive roles children and older adults can play within the family structure. To be effective, the professional and/or paraprofessional must be willing to join and learn from the patient and her family. The manner in which the professional engages with family members can either increase stress and tension or create an extended family network of support.

Health professionals and support staff can be crucial in the education of patients. Actively learning about the patients’ daily routines, customs and traditions can, not only yield vital information about the culture, but can also serve to further involve the patient in her care. Concurrently, family members can become the best allies and assist in treatment while learning and modeling improved communication.

Having the emotional vocabulary and learning how to apply language to feelings can ease tensions and improve wellness. Mothers will benefit from knowing that, while children may be frightened and confused about the meaning of a diagnosis of breast cancer, in the long run, the benefits of direct, honest and timely disclosure far outweigh the negatives.

The strongest ally a Latina woman will have during the treacherous treatment course will be the support of her significant other, her children and her family members. Even if women are successfully engaged in peer support services, without inclusion and support of the husband or significant other, attendance and participation can be compromised.

In heterosexual couples, informing the male partner requires respect and sensitivity to the male role within the couple and within the family. Latino couples tend to have a difficult time discussing delicate issues such as sexuality which is typically viewed as taboo subject. Female professionals are often assigned to translate or relate information to males regarding their partner’s condition. For men, this can be an uncomfortable situation.

Many will agree with everything and will not want to disrespect or make a bad situation worse. The reality is that too frequently, men walk away confused, afraid and uninformed since they seldom are able to hear what is presented. Latino men tend to be more comfortable and will tend to ask more questions, if the information is presented by another male, particularly another male from their own culture.

Regardless of country of origin or years of residence, education and support services tend to be most effective when the professional is familiar with the patient’s culture of origin and materials are prepared and presented with that knowledge in mind. Given the lack of health professionals who are representative or even experienced and trained in provision of services to Latinas, some organizations have successfully explored peer education models. Organizations such as, “Latinas Contra Cancer” in San Jose, California, have identified the importance and efficacy in employing successful program participants as peer educators and service providers.

These “train the trainer” models utilize the experiences and cultural contributions of each client to create a relevant curriculum and effective treatment approaches. For new Latina breast cancer patients, the relationship with peer educators, who come from and understand the experiences of culture, serve to empower and provide hope. One example of successful, culture specific materials developed is Latina Contra Cancer’s adaptation of the classic “Loteria” (bingo) game.

The game, not only provides opportunities for socialization, but offers useful information and education in a non-intimidating manner.

Addressing the male partner’s anxieties and fears significantly improves patient’s treatment compliance and reduces emotional stressors. Although support groups for men are less common, groups such as “Los Compadres” in Concord, California have successfully employed a peer empowerment model with Latino men.

Services are provided to all participants free of charge. For years now, the group has taken on every negative Latino male stereotype and has effectively dispelled each and every one of them while demonstrating the power and nurturance that men can provide. The group works because male peer participants have an ability to respect and understand each other’s role within the culture and the context of the family.

Men are given an opportunity to introduce themselves formally and say as little or as much as they would like about their challenges. Referrals for services are made by other peer participants. Other support systems are introduced with minimum pressure and assistance is offered as necessary. In a recent visit to Los Compadres, the American Cancer Society reported being impressed with the receptive manner and tenderness with which men approached the traditionally difficult subject.

To inquire further about Los Compadres, please contact Dr. Hector Rivera Lopez at Contra Costa Mental Health Center (925) 646-5486 or (925) 646-5691.

Women and men will likely have many questions about the impact such a diagnosis will have upon elements of their psychosocial and psychosexual life, but will likely feel embarrassed and inhibited from asking direct questions. With this in mind, health and support professionals should speak about sexuality and other delicate subjects, in a clear, easy to understand, no nonsense manner.

Even when information is presented and adequately captured, Latino couples often tend to underestimate the impact and complications that treatment will have upon their sexual life. While women typically experience a decline in sexual drive, all too often, men tend to judge the health and strength of the relationship by the frequency and regularity of sexual activity.

Men are more likely than women to attribute declines in sexual activity to problems with the relationship. Women, on the other hand, are more likely to attribute their decreased sexual drive to the breast cancer than to the emotional stressors of feeling pressured. During the course of treatment, women are likely to experience pain, discomfort and sensitivity.

Lack of sexual drive is not only related to the physiological changes taking place due to treatment, but also to the related emotional implications. Women for example, will typically try to maintain a sense of normalcy in the relationship and are likely to feel inadequate if they cannot effectively cover-up the pain and suffering they endure. In their efforts to “be all to all,” Latinas often feel they must protect their partners and family from undue stress, resulting in a patient’s inability to effectively communicate their needs.

Given the impact that breast cancer might have upon a woman’s life, it is important for professionals to remain impartial and centered. Helping professionals and paraprofessionals are effective only when they are able to stay focused in the middle of the emotional turmoil which typically results from receiving or sharing such delicate information.

Compassion for the patient requires that the professional possess a healthy ability to address their own emotional issues. Medical, support and therapeutic professionals who take on the issues of the patients and their families as their own, render themselves ineffective.

The professional who becomes overly involved and impacted by their assigned cases, loses the ability to stay impartial. For this reason, it is important for all professionals working with this population, to have formal and regular support mechanisms. It is only within the safe confines of these professional support venues where exploration of personal emotional reactions is appropriate.

Since patients can become overwhelmed with the information presented, it is most important for the professional to maintain a clear sense of next steps and the direction treatment must take.

That sense of direction should be conveyed regularly in a calm manner. It is equally important to request that the patient re-iterate what has been presented so as to assure that information has been accurately understood.

It is not unlikely for some Latinas to feel their illness is the punishment of God, or to hold other false causal attributions Professionals should not directly challenge such beliefs as ignorant or superstitions.

Directly confronting such beliefs can only serve to alienate Latina patients, causing them to feel ridiculed for holding on to traditional belief systems. The power of religion, particularly the Catholic Church upon the Latino community has been unequivocal and its influence has manifested itself in every element of life. A belief in divine punishment can be related to feelings of guilt, shame and regret. The professional can view these believes as an opportunity to challenge erroneous assumptions of self worth.

While the Catholic Church has dominated the religious life of many Latinas, receiving a diagnosis of breast cancer often opens the doors for broader discussions of personal spirituality. Women diagnosed, frequently state that ironically, breast cancer sometimes brings the gift of self care. The diagnosis frequently forces women to closely analyze their lives, paying more attention to the personal meaning of self fulfillment. Women, who have been consumed by caring for their families, are able to receive permission and devote attention to self care.

For many, the diagnosis of breast cancer brings about a context to ask larger existential questions about the personal significance of life and spiritual direction. In many instances, Latinas have not previously questioned religious teachings, nor have they thought about personal implications of beliefs and traditions. Many are able to find deeper personal meaning in principles and ideals that before were taken at face value.

During this time, many women report a more profound ability to differentiate dogmatic religious teachings from a personal spiritual sense of direction. The results of spiritual exploration often yield a revitalized sense of purpose and direction that frequently have positive impact upon physical health and well being.

Most of us have become aware of the numerous and ever growing number of studies exploring the power of prayer and meditation in improving physical health. This treatment technique is consistent with Latino traditions of health and well-being.

For any individual working with and bringing services to Latinas impacted with breast cancer, obtaining adequate training in multicultural issues and cultural competence is most important. While it is not mandatory that a professional match the ethnic and cultural make-up of the clients being served, maintaining an open and receptive attitude will allow the professional to learn from the patient.

Empowering the patient with information presented in a language and at a level that can be readily understood, will increase patient’s compliance. In a culture that values connections, mutual support and a sense of extended family, the quality of relationships established will greatly determine treatment compliance and success.

Working with Latinas involves working with their families and their significant relationships. Professionals are likely to be seen as an extension of the family. What a contrast that is from the traditional, boundary obsessed models of interaction. Many Latinas have come from a life riddled with struggles, pain and sacrifice.

Finding a professional, or peer, interested in stretching out a supportive and compassionate hand, can bring about a peaceful respite from the storms.

 

Copyright © Dr. Jorge Partida