REVIEW ARTICLE

The motherhood of blind women: possible nursing contributions

^IAssociate Professor in the Faculty of Nursing of the State University of Rio de Janeiro. Brazil. E-mail: rosangelaUFRJ@gmail.com
^IIAssistant Professor of the Nursing Undergraduate Degree of the State University of the Southwest of Bahia. Brazil. E-mail: vmribeiro@uesb.edu.br

DOI: http://dx.doi.org/10.12957/reuerj.2018.32355

ABSTRACT

Objective: to identify the state of the art of the maternity context of blind women. Method: This integrative literature review was conducted by an online search for articles indexed in CAPES Journal Portal and the Virtual Health Library, using the terms in Portuguese and their correspondent in English: mothers and visual impairement; blind mother. The inclusion criteria were: all articles published between 2000 and 2016, in Portuguese and English, with full text available, focusing on visual impairment and maternity. Results: the examined studies highlighted mother/child communication and interaction as the main concern. Conclusion: the studies of blind mothers - their longings, their life experiences regarding themselves and their new social role - can strengthen and improve health care and indicate to which issues the nursing can effectively direct the health care.

Descriptors: Vision disorders; maternal and child health; nursing care; mother-child relations.

INTRODUCTION

Maternity is something extremely particular in a woman's life, and playing this role can be wonderful, however also rather complex. For all women, whether they have or not any type of disability, it is a period of life adaptation, when nursing care can be extremely valuable¹.

According to the National Health Policy for Persons with Disabilities, there is a total of 24.5 million people with disabilities in Brazil, of which 48.1% are visually impaired. The World Health Organization estimates that 57% of all blind people in the world are women and this ratio grows proportionally with age. In health services these women are gradually occupying their spaces, but they are not yet perceived in their singularity^2-4.

Sexual and reproductive rights exist founded on the definition of reproductive health by the World Health Organization (WHO) made in 1994 and such definition connects social rights to individual rights of non-interference and non-discrimination. Among those rights is the right to freely and responsibly decide whether women want or not to have children, how many children they want to have and at what point in their lives; Right to have information on means, methods and techniques for having or not having children and the right to exercise sexuality and reproduction freely from discrimination, coercion and violence^5,6.

Just as any other individual, a person with a disability has the right to have relationships and have their sexual and reproductive rights guaranteed, as well as have access to health services which can offer guidance and monitor their needs, such as the will or not of living and experiencing maternity^5,6.

However, women with disabilities may suffer prejudice to live sexuality and maternity as well as face disbelief from society as for their capability of assuming the roles of caretaker, wife and mother⁷. In this context, it is common that the family of disabled women react with surprise upon their decisions of having an active sexual life and having children^8,9.

Health needs of persons with disabilities pervade the ideas of autonomy and independence, support and help, supported by attitudes of respect, understanding and acceptance of their differences and, in the context of fulfilling the maternal role, it is necessary to exist a welcoming and facilitative environment so that they can build the capacity to adapt to this new situation^10,11.

There are some studies dealing with the perspective of blind children^12-17 and blind women^18,19, however, there are none addressing blind women who are mothers. Thus, in order to collaborate with the knowledge on the subject and understand how the context of blind women who are mothers is approached in the scientific production in the health area, the following guiding question was drawn: Which aspects of the blind women maternity are discussed in the health area scientific production? To deepen the question, an integrative review was performed with the following objective: identify the state of the art of the context of maternity of blind women.

METHODOLOGY

Integrative review is a type of study which enables the analysis of scientific research in a systematic and broad way. It favors the characterization and dissemination of the knowledge produced, aiming to make an analysis about the knowledge produced on a certain subject ^20,21. For the construction of this research, six stages were followed as a methodological route for an integrative revision, which are: identification of the topic with formulation of the guiding question; literature search and careful selection of research; categorization of the studies found; analysis of included studies; interpretation of results and comparison to other research; and reporting of the review and synthesis of the knowledge evidenced in the research^20-23.

For the identification of the studies, an online search was conducted encompassing January and February of 2017 in articles indexed to the website Capes Portal for Journals and to the Virtual Library on Health, more specifically in the databases of Latin American and Caribbean Literature in Health Sciences (LILACS), in the Nursing Database (BDENF) of the Medical Literature Analysis and Retrieval System Online (Medline) and PubMed Unique Identifier (PUBMED). The key-words in Portuguese and their correspondent in English were used: "mães e deficiência visual" or "mothers and visual impairment"; "mãe cega" or "blind mother". The criteria for the inclusion of articles were: all articles published between 2000 and 2016, in Portuguese and English, available in full, with focus on visual impairment and maternity, as described in Figure 1.

FIGURE 1: Search in article databases for review, in the period of January/February 2017.

The key-words used retrieved a total of 90 studies. Upon using the filters described, a total of 50 articles were left, of which, after reading of the titles and the abstracts, 15 remained. The studies which appeared in duplication were excluded, remaining in total, seven studies pertinent to the subject, published between 2010 and 2015, which were used for the analysis. According to the criteria adopted, no articles published from 2000 to 2009 and in 2016 were found.

After the selection of the articles, the data analysis process was started and performed in two stages. In the first, the data of the articles were identified and presented in a list for better visualization, facilitating the selection of our interest. In the second stage the analysis was performed, gathering articles by similarity and content and the elaborating categories of analysis.

RESULTS AND DISCUSSION

The seven studies identified^24-30 can be found in Figure 2, where the synthesized data detailed, showing in which database and periodical the articles were found, their title, year of publication, what was the focus of each study as well as their participants. These were gathered based on the similarities found in the studies, aiming to contribute to the analysis of the categories devised: Mother-child interaction; The experience of maternity of blind mothers .

FIGURE 2: Identification of selected articles focusing on visual impairment and maternity. 2017.

Mother-child interaction

Among the studies selected, there are three articles that address the verbal and non-verbal communication of the same blind mother and her child, in different aspects^{24, 25, 26}.

The first of those three studies analyzed the communication process of the blind mother during the hygiene care routine of her child²⁴. The mother in this context was 22 years old and had limitations in both lower limbs and in one upper limb. The interaction between mother/child and mother/nurse was filmed in different moments and then analyzed by six valuators. The mother/baby interaction was compared to evaluate the mother's communication during the baby's hygiene and to observe the interest and care provided by her, as well as to observe her interaction with the nurse. The mother did not present any verbal difficulties in establishing the communicative process between mother/child and mother/nurse during the baby's bath. As for the non-verbal communication, the mother and child bond was observed through physical contact, in the form of touch, caresses, and others²⁴.

The second study analyzed the verbal and nonverbal communication of the same mother during breastfeeding. When this study was performed the baby was one month and seventeen days old and was fed exclusively by breastfeeding. Visits were made to the mother and these were recorded and filmed. According to the authors, breastfeeding is a time of intense communication between mother and child, where intimate contact between them occurs and various forms of communication are used to interact with the child²⁵. For the participant mother, her verbal communication showed no impairment, she interacted with the child to stimulate her to suckle, and demonstrated concern when the child cried, verbalizing her doubts to the nurse. During the breastfeeding process, the mother related the importance and meaning of the child in her life, in the attempts to make the baby suckle and, in the success, and failure of breastfeeding moments. The absence of visual contact between mother and child was observed in different positions when breastfeeding, making communication difficult²⁵.

According to the study, the fact that the mother was blind interfered with the visual code because the mother kept her head low and did not direct her face at her child, however, it was observed that even with the mother keeping her head down the child tried to look at her face she breatfed²⁵.

The third study aimed to analyze the verbal and nonverbal communication of the blind mother with her child and with the nurse during the feeding of the child. In this case study, the behavior of the mother in relation to the child and the nurse was observed as the sender or recipient of the communication²⁶.

It was observed how the messages were passed on/transmitted, the subject prevalent in the context, the contact, and the common code used. The child in the context was being fed through a bottle, and even with visual and motor difficulties there was no impairment in verbal communication between mother and child and between mother and nurse. Interactions with the child took place through physical contact, touch and caresses. A relationship of trust was established with the nurse, and it was perceived how relevant is the nurse`s performance in the mother/child care²⁶.

The fourth study also addressed communication, broadening the study and including not only blind mothers, but also blind fathers and their children. The study was attended by five sighted children from blind parents and 51 sighted children from sighted parents. The lactating children were evaluated longitudinally between 6 to 10 months, 12 to 15 months and 24 to 47 months. The objective was to evaluate the role of face-to-face communication in the development of the process to see, in the development of social skills and in the development of the brain in general²⁷.

Results indicated that children are able to learn to change their sensory channels to social communication, so as to adapt to their blind parents, suggesting some degree of plasticity in the development of nonverbal communication. Although they were raised with a significant reduction of eye contact and sight behavior processes, that was not deterrent to children from blind parents to develop typical eye processing and other social communication skills. Even so, the authors pointed out as necessary to alternate different types of communication strategies to improve other skills during the development of those children²⁷.

As for the interaction between blind mothers and their children, a study published in 2015, the fifth article, addressed the analysis of sight, facial expressions, voice and physical contacts during mother-child communicative interactions through filming of spontaneous play interaction between seven blind mothers and their sighted children aged 06 months to 03 years. These pairs were compared to a control group of seven mothers and sighted children, where four modes of communication and interaction were analyzed: gaze, physical contacts, verbal productions, and facial expressions²⁸.

The results of this study showed that the facial expressions of blind mothers differed from those of sighted mothers, especially regarding the movements of the forehead, leading to an impoverishment of the transmitted meaning. The children of blind women directed their gaze to the observer longer than the children of sighted mothers, and the mothers of both groups equally directed the gaze mostly to their son's face. As for the frequency of directions to which sight was directed, sighted mothers looked more often at the face of their child or at an object than the blind mothers. It showed that visually impaired mothers and their children use compensatory strategies, physical contact and verbal productions were predominant in the interaction of blind mothers and their children²⁸. The duration of physical contacts tended to be higher among blind mothers and their children than comparatively among sighted mothers and their children, which was also found in another research¹⁸. The authors observed that the children from blind mothers demonstrated an adaptation between different modes of communication and that, in spite of differences in the forms of communication, visual impairment does not prevent a harmonious interaction from the mother with the child²⁸.

As in the first three studies^24-26, articles^27-28 also aimed at assessing mother-child communication, the blind mother's relationship with her child, and the care provided, observed by the researchers with films and verbalizations, but without necessarily deepening into the perspective of the mother

The experience of maternity of blind mothers

The sixth study, on coping of blind mothers with the accompanying of their children, was published in 2014, with emphasis on health promotion, risk prevention and education. This study included nine blind mothers, with no age limit, with physical and emotional conditions to care for their children who were up to 12 years of age. Coping was used as a theoretical approach and the semi-structured interview was used for data collection. Results of the analysis of the interviews were categorized into three topics for analyzes: adaptation of home environment for the prevention of domestic accidents; strategy for health promotion and care for children and accompanying of school life²⁹.

The expectations found in society are that women with disabilities should not have children, and those in this condition seeking maternity can be judged for failing to fit into the profile of the ideal mother¹. However, the authors of the study observed that the mothers showed awareness and determination, offering answers that are consistent with the situation experienced, using their personal resources to cope with child care ²⁹.

They also reported the knowledge and the effort of those mothers to adapt the home environment as a strategy to avoid domestic accidents, reinforcing the interaction between the person and the environment as a way of coping with the condition. Family support for blind women has been reported as of being of great relevance to them, it being something that drives them to deal with the difficult situations of life²⁹.

All participants sought the health system, whether for vaccination, child care consultation or clinical assistance to their child, monthly, semi-annually or whenever they felt the need to consult with a doctor. Five of them reported to have felt discriminated and poorly served at the health services facilities, a situation that is different from what is advocated and established, which is the integral attention to the health of the person with disability, where the person must have an offer of health actions and services destined to the sexual and reproductive health care, childbirth and the puerperium, guaranteeing safe and humane delivery, and caring for the child^{2, 3, 5, 6, 30}.

Mothers reported to have identified health problems using sensory perceptual means, using the touch, the hearing and the smell, thus confirming any change to their children's health such as sore throat and fever; however, some mothers demonstrated to have difficulties in medicating their children.

As for the care with food supply from mothers to the children, it was observed that the correct manipulation and the appropriate hygienic procedures were used, and the residences were adequate to prevent accidents with children.

Regarding education, the authors reported the efforts of mothers to educate their children through the stimulation of extracurricular activities, encouraging them to read, home monitoring and that they provided with good examples of life and citizenship. Mothers demonstrated to adapt to stressors, some with the help of third parties, recreating strategies and methods to adequately implement all the necessary care to accompany their children^8,29.

The seventh study sought to examine cases of discrimination that blind mothers in the USA suffered from medical professionals, nurses, and social workers during the postnatal hospital period. The author, also a blind mother and a participant of the National Federation of the Blind in the United States, identified postnatal care as the moment when mothers may be likely to face stigmatizing interactions with these professionals, which is when skepticism about their competence as mothers is at its peak. In total, 26 blind mothers participated in the study, of which 14 participated in individual interviews and 15 participated in three focal groups ³⁰.

Participants in the seventh study reported that information provided by medical professionals on alternative methods of baby care for blind parents was rare. They also reported that while rehabilitation programs are designed to teach independent living techniques to blind people, they do not provide training on parenting. These women sought information mostly from other blind mothers on alternative techniques of caring for the baby. The article also reports on the high expectations on the role of blind mothers when having their first child and this expectation to be much higher because they are blind, without consideration that is their first maternity experience. The author reasoned on mothers being involved in a contradiction, as on the one hand, they are patients who must depend on the specialized help and guidance of the professionals, but on the other hand, they report that professionals expect them to demonstrate their capacity for independent maternity almost immediately after childbirth³⁰; that is also reported in another study³¹.

By listening to the mothers, the studies gathered in this category differ because they address the topic of mothering from the perspective of the subject, although in specific aspects of the mother-child relationship and in the blind woman's ability to provide adequate care for the children, whether they are at school-age or newborns. The two studies display the care needs of blind women who become mothers and the stigmas they face on the part of health professionals, giving clues as to how they could be better accompanied and supported^29,30.

It is important to emphasize the importance of the nursing professional in caring for this public, and the need to improve and implement actions to favor the development of maternity with autonomy, quality of life and social inclusion³².

CONCLUSION

Mother-child communication and interaction were highlighted in most studies addressing the maternity of blind women. Those, however, do not directly address the perspective of the mothers, only the studies of one category have done so, having focused the care with the children, the school accompaniment and the health care.

Further studies on health care for blind women who are mothers can indicate to which aspects or situations nursing care should be directed. It can contribute in improving nursing care for these women by providing them with new, evidence-based information on the transition to maternity. Aiming to encourage the independence and autonomy of the blind person and guaranteeing their rights, it is necessary to improve health care for blind mothers, who are gradually occupying their spaces but are still invisible to health services.

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