Family Life of Parents With Visual Disabilities and Their Sighted Children: How their Families Could Be Empowered From the Social Work Point of View

Abstract

Families with parents with visual disabilities and sighted children continue to be viewed with suspicion and prejudice; however, when suitable conditions are provided, these families can function in a healthy manner. Social work, as a profession, is of great importance in terms of empowering these families. The aim of this article is to understand how such families function. We interrogate how disability affects functioning and consider the circumstances under which healthy family functioning occurs. Interviews were conducted with nine mothers and nine fathers with visual disabilities, and nine sighted children in Türkiye. The findings indicate that family members’ autonomy, their ability to adapt, and the social support they receive play key roles in the existence of a functional, strong family. Finally, suggestions are presented for social workers on how they can help families to make them stronger.

Plain language summary

The purpose of this article is to explore how the family life of parents with visual disabilities and their sighted children function in a healthy way. To deeply understand their experience, qualitative method was chosen and interviews were carried out with nine mothers and nine fathers with visual disabilities, and nine sighted children in Türkiye. The findings indicate that family members’ autonomy, their ability to adapt, and the social support they receive play key roles in the existence of a functional, strong family. The most significant limitation of the study is that almost all of the parents participating are from a particular socio-economic-cultural background and they have already gained the awareness and skills of independent living. The majority are well-educated. To overcome these difficulties, the data were evaluated from a solution-oriented perspective and the factors that empower family functioning were revealed through the existing positive examples. To empower these families, implications are presented on the basis of social work at the micro-messo and macro level.

Keywords

empowerment family functioning sighted child social work parent with visual disabilities

Introduction

Over the course of history, people with disabilities have experienced a range of different problems that have generally seen them excluded and, at least by today’s standards, deprived of fundamental rights (Pfeiffer, 1994). After many years of injustice, people with disabilities have gained certain social and civil rights and have begun to participate in society as equal citizens. Nevertheless, in a realistic sense they still suffer to some extent from the inability to exercise their rights fully, and in terms of their full acceptance by society. Current research demonstrates that both mothers (e.g., Grue & Laerum, 2002; Kent, 2002; Tefera et al., 2017; Wolowicz-Ruszkowska, 2016) and fathers with disabilities (e.g., Duvdevany et al., 2008; Kilkey & Clarke, 2010) remain effectively unrecognized as parents, and their parenting capacities are viewed with a certain degree of suspicion by society. In addition, it is a common societal belief that children with parents with disabilities inevitably take responsibility beyond their capacities; even professionals who work with the most dysfunctional families can take this belief for granted. These children could be regarded as “young carers.” However, regardless of this apparent belief, there is little hard data on the subject (Campion, 1995, p. 138). If we consider the situation in Türkiye since the establishment of the Republic, policies regarding people with disabilities have been developed and, indeed, individuals with disabilities have played a considerable role in this field. However, the real development in this area only began to occur in the 2000s with the development of awareness of rights, at which point associations for people with disabilities began to organize on the basis of rights. In 2005, the Law of People with Disabilities was enacted at the national level, with the United Nations Convention on the Rights of the Persons with Disabilities subsequently adopted in 2009 (Ardahanlıoğlu, 2022, pp. 47–48). With these conventions, the view of the concept of disability has since shifted from one of a medical to a social and human rights-based perspective, and people with disabilities have begun to be approached in their environment. Despite such developments, the ableist understanding and attitude within society continues (Ardahanlıoğlu, 2022, pp. 57–58; Burcu, 2011). Similarly, in Türkiye, people with disabilities are exposed to various discriminations, including being excluded from the process, while raising a family. The idea that men with disabilities can be breadwinners and women with disabilities can be caregivers is seen as impossible by society as a result of their disabilities (Burcu et al., 2006). Both women (Keser, 2023, pp. 165–166) and men (Türkiye, 2023, pp. 89–90) face a range of problems in being accepted as parents.

Nevertheless, parents with disabilities, who are considered unable to demonstrate classical parenting standards, also get married and have children. It should not be forgotten that “being a parent” involves more than giving care; a successful parent-child relationship is possible under a variety of different circumstances. Besides, in due course, a child will become self-sufficient, and the parent-child relationship will take on a new form. On the other hand, support and materials help families to cope with difficult situations (Campion, 1995, p. 146). It is entirely understandable that parents with disabilities might well face particular difficulties because of sight loss, but it is nevertheless the case that they are capable of overcoming such hardships, and in various ways. Apart from this, the factors that affect the functioning of families with parents with disabilities are already similar to those of families without. It is of particular importance that social workers are aware of how families function in a healthy manner. However, parents with visual disabilities and their children’s family lives have been surprisingly understudied, a gap in the literature that the present study intends to fill. Our main research aim is to attempt to explore how parents with visual disabilities and their sighted children family life functions; through this, we can attempt to understand the factors that affect their family functioning in terms of their disability, and indeed the circumstances under which healthy family functioning occurs.

Literature

As McMaster states, the factors affecting family functioning comprise six basic dynamics: role, problem solving, behavior control, emotional responsiveness, communication, and emotional involvement (Miller et al., 2000, pp. 170–173). The effective functioning of these six dynamics increases the overall functioning of the family. However, some dynamics in families with parents with disabilities may involve various differences in terms of functioning. Issues such as problem solving, behavior control, and emotional responsiveness are mostly related to families’ internal dynamics. It is thought that disabilities have little or no effect on the dynamics in these areas. However, in those areas where sight plays a significant role, such as communicating, emotional involvement, and role sharing, the question of how disability affects the associated functioning arises. At this point, it is thought that system theory can be of use; according to this theory, the family is a system, all of whose parts are interrelated. The functioning of the family is affected by its constituent parts and the relations between them (Miller et al., 2000, p. 169). Even when there is a problem in the system, the system adapts to accommodate the new conditions (Payne, 2016, p. 187); thus, individuals adapt to changes in either themselves or their ecosystems (Forder, 1982, p. 4). Therefore, when considered systemically, it can be understood that families can be shaped according to their differing experiences of disability and functioning in a healthy manner. In this context, it is thought that the concepts of autonomy, adaptation, and social support play key roles. First of all, the existence of an autonomous family atmosphere emerges as a prominent area that empowers family functioning, because in these families the distribution of roles may change due to the parental disability and, with the associated increase in the child(ren)’s stress, domestic problems, which indirectly affect the functioning of a family may occur (Pakenham & Cox, 2012). In order to avoid such problems, it is vital to consider the extent to which parents’ independent living awareness and skills are developed. From the study by Olkin et al. (2006), it can be understood that there is no difference between the domestic work performed by children with parents with disabilities and those without. However, in some families, children are forced to take on domestic responsibilities to the extent that they essentially change roles with their parents (Bolas et al., 2007). However, mutual aid relationships are a natural part of being a family (Nagl-Cupal & Hauprich, 2018, p. 535). Children who help their parents also get help from their parents; that is, the nature of relationship includes the principle of reciprocity (McDonald et al., 2009, p. 119). At this point, one should note that the roles children are assigned should not exceed their capacities and risk the loss of their childhoods (Cohen, 1998; Grue & Laerum, 2002; Olsen & Clarke, 2003).

The family system that can adapt to different conditions is another empowering factor. The kind of atmosphere family members experience is of great importance in terms of dynamics, such as emotional involvement and communication, which affect family functioning and are themselves affected by the disability factor. Those few studies that focus on the family experience of parents with visual disabilities show that family members can shape their relationship according to the disability factor and continue their family functioning in a healthy manner. According to related literature, it can be understood that in both parent-child communication (Chiesa et al., 2015; Collis & Bryant, 1981; Ganea et al., 2018) and emotional involvement (Moghadam-Behboodi et al., 2017), the disability factor does not intrinsically lead to any problems.

Finally, social support is another factor that empowers families. Studies have shown that social support affects families’ well-being (Armstrong et al., 2005) and has positive effects on the lives of parents and children alike (Bono et al., 2016; Whitman et al., 1987). In fact, the needs of parents with disabilities are basically similar to those of parents without (Olsen & Clarke, 2003, p. 37). However, various studies have shown that people with disabilities need different and/or higher levels of support. Bruce et al. (2007) found that individuals with visual disabilities are particularly susceptible to a lack of social support compared to their sighted peers. In Cohen’s (1998) study, some mothers with visual disabilities stated that a majority of tasks required additional energy and time, while others stated that they needed support to perform housework and shopping. Pagliuca et al. (2009) also state that parents with visual disabilities become more autonomous and cope with problems by making use of support networks in cases related to childcare. Selander and Engwall (2021) state that the support received from personal assistants plays a complementary and facilitating role in the parenting of mothers and fathers, especially when children need care. In fact, many studies show that social support affects parents’ lives in a positive manner (Feldman et al., 2002, p. 315; Kroese et al., 2002).

Families in Turkish Context

“Turkish society is undergoing rapid social change from being a traditional, rural, patriarchal society to being an increasingly urbanized, industrial society” (Aslan, 2009, p. 162). Looking at the current situation, Türkiye is considered to be a largely urbanized and industrialized country where gender awareness has increased over the last decade. Families’ lifestyles, habits, and values are heterogeneous. While a modern lifestyle is typically adopted in metropolitan cities, a more traditional lifestyle is apparent in rural areas and city outskirts (Hacettepe University Institute of Population Studies, 2009, p.3). However, some families use both Western and local practices at the same time in their daily life (Kavas & Thornton, 2013, p. 224). When we consider child-rearing attitudes, while modern families have developed more egalitarian attitudes in this regard, traditional families can be more authoritarian (Canatan et al., 2020). With the increasing social and economic welfare, the expectations of the child to help with the housework and contribute economically or to provide care in old age have decreased, and children have come to the fore as beings that bring positive emotions such as joy and pleasure (Kagitcibasi & Ataca, 2005). Despite the positive attitudes toward gender (Kadir Has University Gender Women Studies Research Center, 2020, p. 61), it can be seen that, in general, gender roles are continuing in practice. Although men commonly contribute to the performance of domestic chores, this is mostly in the form of work such as repairs and shopping. Daily chores such as laundry, dishes, and cooking remain predominantly carried out by women (Kadir Has University Gender Women Studies Research Center, 2020, p. 14). At this point, men’s strong cultural and economic capital allows them to move away their family relations from patriarchal understanding (Topçu, 2018). New generation fathers eschew authoritarian fatherhood, acting in a more child-centered manner and taking much greater responsibility for childcare (Ördek-İnceoğlu & Aktaş-Arnas, 2020). Domestic activities that contribute to the functioning of the family (eating together, watching television, out-of-home activities) are carried out in a similar manner to Westernized/industrialized countries for families living in cities and having a certain economic competence (Zabriskie et al., 2018). However, “traditional” families living in cities mostly gather at domestic events and provide a family atmosphere. Another important feature that is generally seen amongst Turkish families is that family members have close emotional ties and relatedness, regardless of their socio-economic status, but the autonomy of family members is lower amongst those living in rural areas and/or who are at a socio-economically low level (Sen et al., 2014). In Türkiye, where a collectivist cultural structure is deemed common, one might consider that the family boundaries are lost. Nevertheless, families living in cities are not as enmeshed in this regard as one might otherwise believe (Türkdoğan et al., 2019). Of course, family relations in rural areas are more traditional (Sunar & Fişek, 2005). However, considering the high rate of urbanization in Türkiye (Yüceşahin et al., 2004), maintaining the traditions of rural culture is far from common.

Method

In this study, a phenomenological pattern was chosen from qualitative research methods in order to reveal the experiences of both parents and children in depth.

Determination of Participants

The working group includes parents with visual disabilities prior to marriage (functionally or totally) and their children aged 12 and above. Families were reached via the snowball sampling method. Firstly, the announcement text was prepared by the researcher and sent to two colleagues working in the disability field as an activist and an association member. This text was then shared via WhatsApp and mail groups. These groups consisted of people with disabilities. The researcher was further introduced to two association presidents through these colleagues. Nine families were reached through people working in the disability field (activist, head of disability associations, and association members and their friends). Nine mothers, nine fathers, and nine children from nine families were interviewed separately, from which it was thought that the data had reached saturation point and the interviews were discontinued. Ethics committee approval with decision number 178 was obtained from Ankara University Ethics Committee.

Participants

In qualitative research, the anonymization of the participants’ personal information is crucial (Saunders et al., 2015). It is thought that giving detailed information about the family (occupation, history of illness), which is used from time to time in family-based studies, may represent a risk of incomplete anonymization of the families’ identities (Botkin, 2001, pp. 208–209). Hence, all participants were assigned pseudonyms. In order to eliminate possible risks, attention should be paid to these points and the way this information is presented. Due to ethical sensitivities, the participants’ socio-demographic information was presented in a general way in this study. Accordingly, both understanding and clarity of transmission were ensured in the themes presented, and the personal information of the participants was protected. Nine families participated in this study. The ages of the parents ranged from 40 to 56, and the ages of the children from 14 to 17, though one of the participants in the children’s group was 20 years old. Although this person was over the age of 18, he was included in the study because he lived with his parents and continued to have common family-oriented experiences. All of the parents were with visual disabilities prior to marriage. In addition, all of them used a cane and/or voice-speaking programs in daily life. None of the children had any disabilities. Educational status varied from the secondary school and high school to the university level. The professions of the parents ranged from lawyers, teachers, housewives, switchboard operators, and tradespeople, to retired civil servants. Educational levels varied from high school to associate degrees, to having completed undergraduate studies.

Data Collection Process

The interviews were held in four different Turkish cities, namely Istanbul, Ankara, Izmir, and Gaziantep. Consent was obtained from all participants. Before starting the interviews, they were reminded again that the voice recorder would be turned on and were asked whether this would pose a problem for them. Both participants and interviewer were native Turkish speakers. The interviewer has a relationship with the disabled communities and has had some friends from there since 2013, and accordingly is acquainted with people with disabilities and is aware of the disability culture. Interviews with parents lasted an average of 113 min, and those with children an average of 67 min. Interview times varied depending on the participants’ ability to understand what was asked, power to convey experiences, wealth of experience, and tendency to be open during the interviews. Interviews were carried out between June 12, 2019, and April 10, 2020, at participants’ homes, association room, workplaces, cafes, or in the park. While face-to-face interviews were completed by January 26, 2020, additional telephone interviews continued until April 10, 2020.

Data Analysis

In this study, descriptive analysis was used as a method of data analysis. In this method, a framework is prepared according to the research questions and/or the data obtained during the interview/observation processes. According to this framework, the data is processed, and the findings defined and interpreted (Yıldırım & Şimşek, 2011, p. 224). Firstly, transcripts of the decoded audio recordings were analyzed via NVivo 12. Thereafter, codes and sub-codes were created according to the themes and sub-themes determined in accordance with the interview questions. In line with certain codes, new themes and sub-themes also emerged.

Findings

An Autonomous Family Atmosphere and the Elements That Support It

In general manner, an autonomous family atmosphere plays a prominent role in facilitating family functioning. More specifically, assuming roles within the capacities of parents and children, independent living in the public sphere, styles of upbringing that support the independence of family members, seeing the child as an independent and separate individual, and the awareness and skills of parents and children to act independently are important to ensuring this atmosphere.

Sharing of Roles According to the Capacities of Family Members

First of all, it is highly significant that there is role-sharing in the family that is appropriate to the capacities of the members. While this shows that parents have independent living consciousness and skills, it also indicates that family responsibilities are not concentrated on only one of its individuals. It is thought that sharing of basic duties such as cooking and cleaning between parents, regardless of gender, and children fulfilling their own responsibilities and providing assistance to their parents from time to time facilitate the functioning of the family. Children, in particular, play a role in jobs where the need for vision is significant, for instance reading labels while shopping, by acting as a “personal assistant” to their parents when going to the bank, or by being a visual assistant at home (spot control, finding lost items, etc.).

I tidy my room, put my clothes into the wash basket. My mother cooks. My mother and father share the laundry, ironing, and dishes. We go shopping together. My mother has needs, like going to the bank. We both do those jobs during the day. My father has always been more interested in housework like this for as long as I can remember. My mother also likes to cook. (Child—Sercan)

Using Independent Living Consciousness and Skills in the Public Sphere

In line with the researcher’s observations and the information obtained from the field, parents with visual disabilities are able to use their independent living skills more comfortably at home, but they experience greater hesitation and difficulties when using them in public spaces. At this point, it is understood that the awareness and skills possessed are crucial, because otherwise family role balances and relationships may be adversely affected. It was found that almost all of the parents have such consciousness and skills.

So, if a person doesn’t have individual independence and uses a cane, physical access is very difficult, a big distress. You become dependent on another person, and it is not optional. We, among the people with visual disabilities, always say, ‘Someone should not be a handbag.’ Whoever he is… It may be a wife, a child or a sibling… Someone should not have to stay with me for 24 hours [a day]. For example, if I go with the children, I always have my walking cane with me. At first, the children were reacting by saying what the need was. And I say, if something comes up or you run into a friend, why should I keep you waiting there. (Father—Devin)

Upbringing Model That Promotes Independent Living Lifestyle

When acquiring independent living skills, the upbringing model applied has a significant effect. Evolvement of independent living consciousness and skills becomes easier for people who were raised away from protective behaviors and who took responsibility for themselves. The majority of the parents stated that they grew up in a family atmosphere where independent living skills were developed.

They (mother and father) trusted us. Also, my mum and dad were very different as they were forward thinking. We (she and her blind brother) were doing everything in the village, such as cooking and agricultural labour. In the field, we used to do what they were doing in the same way. Since they did not discriminate, they knew what we could do. (Mother—İnci)

At this point, it has been understood that a traditional lifestyle also shapes behaviors toward children with disabilities. People in rural areas are busy with heavy work, so there is generally insufficient time to take care of children. People with disabilities can, of course, learn how to do things such as cooking and taking care of themselves without the need for a formal education. It might also be added that one of the fathers, Devin, went to a particular school for blind people and stayed in the dormitories there throughout his education. Most probably, his lifestyle and education allowed him to gain independent living skills, too.

For example, most of the people with disabilities of our age came from rural areas. Life in the countryside is brutal. Imagine your family goes to the field in summer, you are left alone. You learn to feed yourself somehow, but as the society becomes urbanized, this does not happen. What then? The other members of the family are trying to meet all the needs of the people with disabilities. What then? The people with disabilities can’t gain self-confidence, cannot learn. (Father—Devin)

Character Traits That Support an Independent Lifestyle

The character traits of the individuals participating in this study will have had a crucial effect on the acquisition of independent life skills. They do not hesitate to take responsibility and make their own decisions.

It is remarkable that the parents displayed behaviors that were somewhat “courageous” in nature and open to development, and that they took responsibility for and made their own decisions without hesitation.

For example, I had some friends. Their mothers or relatives were taking care of their children… Later on, we sat down with my wife and talked about this situation. If you look at it superficially, ‘Oh, how well helped’ may seem like your work gets easier. But when we think about it, you have to be grateful or dependent on others no matter what. I didn’t want to be dependent on anyone either. We said we would get over it. We could make a mistake, we could have a hard time. We could have two difficulties, but with the third, we get used to it, like any human being. (Father—Saygın)

Consciousness That the Child is a Separate and Independent Individual

Being aware of the fact that the child is a separate and independent individual, and acting accordingly, plays a key role in family functioning. Otherwise, both children’s and parents’ personal boundaries are violated, and the roles of parent and child may change. People with disabilities are aware that they can and will exist independently, even when their children are not with them. It can be seen that almost all of the parents take this approach, and only look for support from their children when they really need it.

When we go out, maybe we need him when shopping at the market, but we have never needed to be taken from any one neighbourhood to other. Because we know that our son was not there when we got married, and he will not be in the future. (Father—Özcan)

The Effort to Raise the Child as an Autonomous Individual

It has been noticed that the majority of the parents are also trying to raise their children autonomously. It is a known fact that the autonomy of children in families without disabilities is a factor that empowers that family. However, in an inaccessible environment and in a world where awareness of disability is not prevalent, it is thought that the autonomy of children with parents with disabilities is particularly noteworthy. This achievement also potentially leads to children struggling with internal and external problems.

The endeavor on the part of parents to raise their children autonomously is noteworthy. Efforts by parents to raise autonomous children were also reflected in the discourses and behaviors of some of the children; the researcher’s own observations further support this supposition. Some children were able to behave in a safer and freer manner than their peers.

When I was little, Zuhal (my friend) and I used to go to the Y district. Those days I was 12-13 years old. For example, we have a friend, she cannot go by herself, from X district to Y district. But we could go anywhere freely like this. (Child—Sinem)

It appeared that the attempt was being made to bring some of the children up autonomously in terms of their emotions. Democratic environments were being created for children so that they would feel they were individuals, allowing their own identities to come to the fore.

We always tried to respect his preferences even when he was small. When we went shopping, we said to him ‘Look son, this and that suit your needs, but which one do you choose?’ We even said to him ‘My son, you choose, let’s put them all in the basket; afterwards, you can try the appropriate one.’ We have always allowed his preferences to form. (Father—Engin)

A Family System That Can Adapt to Differences

It can be seen that there is an adaptation among family members at the point of functioning of dynamics that requires the use of sense of sight, and which subsequently affects family functionality. The answers given to the question of how visual impairment shapes communication show that this occurs in an atmosphere where feelings and sounds are made extensive use of. The effective use of the senses makes up for visual deficiency. For this reason, it is crucial that family members have a wide emotional repertoire and sense capacity.

To be Able to Communicate Using Other Senses in the Absence of Sight

First of all, when we look at the communication dynamic that affects family functioning, it can be seen that sensory factors have an effect both between the two parents and between child and parent. Children can also see their parents’ gestures and facial expressions. Apart from this, parents and children analyze each other’s tones of voice and even follow their behaviors, such as the manner of their walking and slamming doors to make their current feelings clear.

Of course, you know, visual communication is very important in human relations. But when there is no visual communication, different emotions come to the fore. For example, people’s tone of voice, movements, walking, closing and opening the door even when entering a washroom… Other non-visual communication elements become more powerful.

- As I understand that’s the case with both your wife and your son?

- Yes, same for both. (Mother—Şeniz)

Children can also be made to understand their parents’ feelings through the expressive power of their tone of voice. Instead of using gestures and mimicry, more verbal expressions can be used in communication with parents. The remarkable point here is that some children have not experienced the effects of the visual factor in communication; this factor is somewhat out of context for them, since they have had parents with visual disabilities all their lives.

I don’t know, because I grew up like that, I’m not aware of it anyway. You know, normally, not by gestures, by showing or expressing something… After all, you have to say everything verbally. Because the person next to you doesn’t see it. Let’s say you’re angry, you can reveal it with your tone of voice. (Child—Fırat)

Even at a very young age, children realize that their parents cannot see and thus determine how to communicate with them even before they start to talk. Parents and children can also develop unique, tactile styles of communication. Indeed, the sense of touch is another crucial point.

You know, people say that you cannot see, so how can you look after a child? My son was crying, he was saying something, but how could I understand, I couldn’t see. I was saying to my son ‘what happened’ and he was taking my arm and doing like this (mother acts as if her shoulder was a pillar). He was saying that he wanted to sleep. (Mother—Leman)

The Breadth of Sensing Capacity. I Don’t See It, but I Understand That the Other Has a Problem

In relation to the dynamic of emotional involvement, it can be understood that family members do not have visual disability-related problems in terms of understanding each other’s problems; parents and children alike can do so by using their other senses.

How can I say that? I can understand from his tone that he (her son) is very sad. (Mother—Mine)

If I’m sad and I don’t want to say it, but I want to be understood, they (mother and father) can’t understand that I’m sad from my face. But they can undestand and feel my sadness from my behaviour. (Child—Işıl)

Blind parents can also sense each other’s problems from their tones of voice and behaviors.

So, I immediately understand. It is immediately evident from the tone of voice and even the body movements. A happy, sad, or thoughtful person is immediately apparent. (Father—Özcan)

A Complementary Element that Facilitates Family Functioning: Social Support System

Parents with visual disabilities who have gained independence can do almost any job, though, the time to complete such work may be considerably increased. One of the participants, Mother Müzeyyen said, “I do everything myself for better or worse, Ms. Z., whatever a woman does… ironing, cleaning… Well, we do it four times instead of twice or three times to make it a little better. What a person does in an hour, we do it in an hour and a half, but does that work finish in the end? Yes! I do this to make it better and to avoid missing anything. Otherwise, we are doing what everyone else is doing.” She expressed the situation quite clearly with the above. However, it should not be forgotten that parents with visual disabilities whose independent living skills are not sufficiently developed also need increased levels of support. On the other hand, parents with highly developed independent living skills may also experience certain difficulties due to visual factors such as teaching the child to read and write and go shopping. It can be seen that the parents participating in the study also receive formal and informal support in various areas (childcare, child education, housework) to facilitate family functioning. Social support in these areas not only makes the parents’ lives easier, it also increases the quality of family life.

Childcare and Social Support

It can be understood that care assistance received when the child is small is one of the most vital forms of support. The fact is that working life has a crucial effect on the need for care assistance. The majority of the participants emphasized that they received care support like all working parents, but this was not related to their childcare skills but rather stemmed from their lack of time. Parents could receive support from a close circle or professional sources to raise their children.

My grandfather took care of me when my parents were working. (Child—Işıl)

There was a childminder though. (Mother—Zerrin)

Both working and non-working parents received short-term support from their neighbors, especially during their initial experiences such as bathing the child or when the child was ill or not silent.

My neighbours never left me alone. All of my neighbours in the neighbourhood were housewives, I used to take a bath with them. Then I got used to it. (Mother—Duygu)

Children’s Educational Life and Social Support

Parents generally experience problems when their children first start school. Providing visual support to children who do not recognize letters and numbers can be difficult. During this period, families benefit from social support resources such as private teachers, study centers, etc.

As a parent with visual disabilities, teaching reading and writing to [our] child was a big challenge for us. I solved it through [the] study centre. (Father—Devin)

Neighbors can also provide short-term assistance to children regarding their lessons.

If needed, our neighbours’ children also helped. (Mother—Müzeyyen)

Domestic Functioning and Social Support

Another significant means of support is the instrumental support related to domestic functioning. Some parents reported that they received assistance from general cleaning staff. However, considering that parents with disabilities do their own daily cleaning, the support received seems to make life easier. People can see also benefit from this support when they need it.

She comes to our house every fortnight; I love her very much. She (the assistant cleaner) has become like a member of our family now… Here, our general cleaning, windowpanes, doors… After these, bathroom, kitchen, toilet… She does it all. (Mother—Şeniz)

With the development of technology and online shopping systems, the lives of many families have become easier in terms of shopping, and accordingly their support needs in this regard have largely disappeared. Families’ economic status also plays a significant role in the preference for online shopping.

In other words, we can buy it from the greengrocer, we can also buy it from nearby markets. But since most items will be heavy, we use the internet, online shopping. Because now everything is much easier. It wasn’t like this before, it was harder. (Mother—İnci)

Discussion

This study has explored the how families with parents with visual disabilities and sighted children in Türkiye function from a systemic perspective, and attempted to understand how such families could be empowered. In line with the information obtained, the factors that empower the functioning of such families are presented according to three main themes. First of all, it has been revealed that an autonomous family atmosphere and the various associated elements (independent living consciousness and skill, etc.) that contribute to this atmosphere empower the functioning. Parents have independent living skills that allow them to adopt the main responsibilities of housework, regardless of gender, with children providing support in auxiliary roles and, in particular, in areas that call for visual facilitation/support. It is clear that not all parents with disabilities’ children can be evaluated as being “young carers.” This findings are in accord with the literature. There are also families in which children play a role according to their capacities (Cohen, 1998, p. 171; Grue & Laerum, 2002, p. 680). Despite this, there are some parents with disabilities who are not aware of their children’s capacity and willingness for help. Those parents also tend to lack independent living skills. Children who live with this kind of parents are at risk of parentification. At the point of parents gaining independent living skills, it is of particular importance that independent character traits and independent living skills are taught and supported by their families. Similarly, as noted by Pascall and Hendey (2004, p. 171), individuals with disabilities stated that the encouragement given by their parents had an effect on their transitions to independent lives. In addition, it has been revealed that parents’ acceptance of their children as independent individuals, and indeed helping them to grow up as such, are also crucial to their development. It can be seen that supporting the autonomy of both parents and children in the psychological and physical fields empowers the family as a whole. Bowen (1993) also emphasized the importance of the autonomy of the family from a psychological perspective, drawing attention to the necessity of the separation of the selves of the family members to contribute to overall family health. It has been understood that an adaptable family system is another factor that empowers the family. It enables family members to communicate with each other through other senses and to understand each other’s problems; indeed, the breadth of sensing capacity plays a crucial role in this regard. Other studies also indicate that a lack of sight does not pose a problem in terms of communication (Chiesa et al., 2015; Collis & Bryant, 1981; Ganea et al., 2018) or, indeed, in emotional involvement (Moghadam-Behboodi et al., 2017).

Finally, it has been revealed that the family support system empowers its functioning. Receiving instrumental support for care, education, and domestic functioning enables more active parenting and facilitates family functioning. Other studies have shown that the social support received by parents with disabilities positively affects their lives (Feldman et al., 2002, p. 315; Kroese et al., 2002; Pagliuca et al., 2009; Selander & Engwall, 2021). Further, parents’ well-being indirectly affects family functioning. It is noteworthy that some of the support commonly received is of an informal origin, from which it is thought that the existence of traditional culture is still effective in Türkiye.

Conclusion

The article is produced based on first author’s PhD thesis focusing on parents with visual disabilities and their sighted children’s family lives. The most crucial data obtained from this study is presented and discussed, from which we have ascertained that parents with visual disabilities and their sighted children can have a functional family life when appropriate conditions are met. In the studies conducted, it has been found that the use of a systemic view of the concept of family, rather than a problem-oriented view, helps to reveal the existing potential power. It is obvious that the concepts of autonomy, adaptation, and social support play key roles in empowering the functioning of families with parents with visual disabilities and sighted children. Similarly, to ensure a healthy family, Drew-Rivera (2009) also emphasized parents with visual disabilities’ autonomy, appropriate social support systems, and reciprocity between parents and children. The most significant limitation of the study is that almost all of the parents participating are from a particular socio-economic-cultural background, and who have already gained the awareness and skills of independent living. The majority are well educated. Many of the participants included in the study also stated that their friends or friends’ friends, who had dissimilar levels of consciousness, skill, and of lower economic status, suffered from various problems in their family lives. In order to overcome these difficulties, the data were evaluated from a solution-oriented perspective and the factors that empower family functioning were revealed through the existing positive examples. However, it can be seen that the existence of social policy and social work practices are necessary to prevent problems that may arise in the absence of the above-mentioned factors.

Implications

To empower these families, we might consider the implications of this work with regard to social workers and social policy. The findings reported in this study highlight the need for social workers to develop a better understanding of how to practice with families with parents with visual disabilities and sighted children. Having specialized information (from families’ lived experiences) ensures appropriate assessment and intervention. Some parents could have difficulty in adapting to an independent style of living, especially those parents who might regard their children as personal assistants. As we can see from the research, unbalanced role-sharing leads to family dysfunction. Indeed, taking part in family role-sharing as a child is indispensable to children’s psychosocial development. Besides, a healthy family requires an interdependent relationship. Valuing helping behaviors is beneficial for both the child and society. On the other hand, if a child takes—or is forced to take—excessive responsibility, this could be detrimental to their development and ongoing life experience. Only under these circumstances could a be child put under protection (Alridge & Becker, 1999, pp. 313–314). Besides, in some cultures, it is considered quite normal for children to serve their parents and take responsibility for domestic chores (McDonald et al., 2009, pp. 120–121). Social workers must be culturally sensitive but of course must painstakingly differentiate parentification and proper role sharing. In order to determine that the child is parentified or not, it is very important to understand to what extent the child’s desire and capacity to participate in daily chores compromise with the parent’s wishes and expectations from the child (Haxhe, 2016). Already, family social work aims to keep children with their families as much as possible and support families in terms of being functional (Collins et al., 2013, p. 4). Firstly, social workers should define which factors affect family functioning. If problems arise from a lack of independent living awareness on the part of the parents, social workers can suggest awareness-raising activities. These could be performed via psycho-education, group work, etc. However, if such problems are related to independent living skills, again social workers can make them aware of the importance of independent living, and a parent with disabilities could be referred to a rehabilitation center to receive further education. Same parents might not have the fortitude to use their independent living skills, especially in public places. If parents feel inadequate in this regard and do not want to be educated in terms of improving such skills, social workers could use motivational techniques to make the person more aware and confident. More to the point, parents of children with disabilities can be extremely protective, and are typically unaware of the effects of their behaviors on their children (Deshen, 1987, p. 139). From the outset, the families of children with disabilities must be trained to raise their children. On the other hand, parents with disabilities themselves could be a burden to their child. They are not sufficiently aware of the effects of their role-reversal behaviors. To solve this problem, at the social policy level, parental education programs must be structured to be inclusive of both parents of children with disabilities, and parents with disabilities themselves. Social workers can be trained in such child-centric structured education and/or coaching to ensure an appropriate service can be offered to parents. The other important issue is to offer counseling to the family. In fact, regardless of a parent having a disability or otherwise, every family can encounter problems in terms of role sharing, communication, etc., but when it comes to such families, social workers must assess the dynamics that affect family functioning but in particular must focus on problems that can arise due to disability. For instance, the problem could be related to sensing capacity where, in the circumstances, counseling could be performed by a parent with disabilities or could be referred to a psychologist to improve sensing ability. The other point of note is to provide sufficient instrumental support to families who are in greater need of such, for example, offering appropriate care support to families who are unable to access childcare services or educational support, especially for people whose child is at the stage of learning to read and write, in the first year of their educational life, and daily support to parents who do not have sufficient independent living skills in terms of cleaning and shopping. Well-structured support systems must be made available and should be guaranteed by social policies. Finally, people with disabilities, from their childhood onward, encounter various barriers (e.g., family protectiveness, societal attitude, inaccessible environment) (Hodge & Runswick-Cole, 2013). In order to negate such an atmosphere, advocating people with disabilities’ rights and carrying out awareness-raising activities could also ensure the empowerment of family functioning.

Footnotes

Author’s Note

The article is produced based on the dissertation entitled “An Analysis of Experiences of Visually Disabled Parents and Children Who Have Disabled Parent in terms of System Approach” by Zeliha Tören. The thesis was completed in 2021 and supervised by Professor Elif Gökçearslan.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Ethical Approval

Ethics committee approval with decision number 178 was obtained from Ankara University Ethics Committee on 27.07.2018.

ORCID iD

Zeliha Tören

Data Availability Statement

Data can’t be shared publicly beacuse participants of the study didn’t give consent to share all their data as an open source.

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