Older Caregivers of Children with Physical Disabilities: A Dual Challenge for Social Participation?

Abstract

Older people’s social participation is being shaped by the current context of “liquid modernity,” characterized by the erosion of traditional roles and identity, fragile social ties, individualism, economic precariousness, and uncertainty. The challenges entailed by these trends can be exacerbated when a circumstance, such as being the parent of an adult with a physical disability, is combined with old age. This study aimed to explore how this dual condition influences processes of aging and community participation. This work presents the findings of a phenomenological study conducted in 2025 through semi-structured interviews with a sample of 24 elderly people with children diagnosed with spina bifida. The results show that the children’s support needs, especially when they live with their parents, but also if they have become independent, impact the parents’ aging and social participation processes. Likewise, concern for the future is identified as a recurring aspect due to the children’s lack of support from a social network. It was concluded that public administrations and non-profit organizations should develop social intervention strategies aimed at promoting social participation, guaranteeing external assistance in the home, and providing coexistence resources.

1. Introduction

Zygmunt Bauman conceptualizes “liquid modernity” as a phenomenon characterizing this historical era, defined by volatility and uncertainty in structures previously considered stable, such as the state, politics, social classes, the family, personal relationships, work, and the economy. This conception is used in contrast to an earlier stage, that of “solid modernity,” during which solid and immovable elements prevailed and the period was defined by permanent, recognized, and socially validated institutions. Under conditions of liquid modernity, continuous transformations take place, and some defining elements stand out, such as the weakening of organizations, political ambivalence, the fracturing of social bonds, and a decrease in any sense of community. Other patterns include greater indeterminacy in the construction of identity, multiple possibilities of choice for individuals, understood as freedom, in addition to professional instability, among others [1].

The use of terms such as “solid” and “liquid” in relation to different social contexts, past and present, seeks to draw a distinction between the permanent and lasting, on the one hand, and the inconsistent and transitory, on the other [2]. In today’s liquid world, there is a continuous need for transformation and change, which entails uncertainty, accompanied by individualism and temporality, all of which affect human relationships [3]. Interactions no longer occur in private spaces but rather in public ones with a greater number of people, with fragile links between them. This means that people only have their own resources to face their particular situations of vulnerability, without being able to count on others or institutions [4]. Relationships tend to be temporary, not long-lasting, and defined by a lack of commitment [5]. Bauman relates these concepts to different areas of life [6].

In Spain, 20.1% of the population consists of people 65 and over, of which 6% are over 80 years of age, and 1.3% are over 90 [7]. The average age in Spain is on course to rise even further, according to the projections of the National Institute of Statistics, which highlights that in 2050, 31.4% of people in Spain will be over 65 years old and that, among them, 11.6% will be over 80 [8].

Healthy aging is defined as “the process of developing and maintaining a functional capacity that makes possible well-being in old age” [9] (p. 14). It is important to promote social participation and take steps to prevent those situations that cause older people to be excluded through social policies that take into account the diversity of older people’s characteristics [10]. Another important concept related to this group established by the World Health Organization is that of active aging, which rests on four key pillars, one of which is participation, in addition to health, safety, and lifelong learning [11].

Older people are a heterogeneous population, sharing some characteristics but differing in others. Sometimes health, psychological, social, economic, cultural and provenance variables are taken into account to understand the differences [12]. A shared aspect is that their social support networks tend to shrink with respect to previous stages in their lives. Therefore, their social participation in different activities is important to forge relationships outside the family circle [13].

Numerous factors have been studied in relation to the social participation of older people. However, little in the scientific literature has addressed an exceptional circumstance experienced by some families, one which reduces their opportunities for social participation; in this case, we are talking about having a child with a physical disability—specifically, spina bifida [14,15].

As a physical disability, spina bifida is the most serious pathology compatible with life [16,17], entailing the need for primary and specialized care throughout these people’s lives [18]. In Spain there are 31,700 people with spina bifida and/or hydrocephalus [19]. Spina bifida is a condition affecting the central nervous system (CNS) characterized by incomplete closure of the neural tube, or spine [17,20,21]. The neural tube lines the central nervous system, formed by the brain and spinal cord, during the embryonic stage. When this failure of neural tube fusion occurs, it produces a herniation, with or without meningeal protrusion, i.e., the meninges and/or spinal cord protrude from the spine, leaving that area unprotected by bone, with this having lifelong consequences [22].

The studies that have been carried out on the subject estimate that some 86% of people with spina bifida do not live alone as adults [23], so it is necessary to turn our attention to older people who have children with this pathology and how it affects different aspects of these parents’ lives, such as their social participation and other characteristics that Bauman relates to liquid modernity: the construction of identity, fragile relationships, and concern for the future.

In relation to the focus of this article, liquid modernity connects, especially, with the fragility of today’s relationships and individualism. The aim was to ascertain the perspectives of older caregivers of children with physical disabilities in this historical context characterized by neoliberal policies and cutbacks in the Welfare State. It would be valuable to know whether these characteristics of liquid modernity generate insecurity and vulnerability in these people due to the personal and social resources they have, or lack, to meet their children’s support needs. Moreover, within the framework of liquid modernity, identity is conceived as something unstable and undergoing constant reconstruction, something that can be freely chosen without being shaped by aspects unrelated to oneself. This study, thus, sought to explore whether, in old age, having a child with spina bifida entails responsibilities as in previous moments of the life cycle, responsibilities that determine the construction of one’s identity. The uncertainty defining this historical stage is connected to the older persons’ worries regarding their own futures and care for their children with disabilities, a key aspect to understand their experiences in this final stage of life. The lack of guaranteed ongoing care can constitute an added emotional burden for these people. Finally, social participation, a central topic of this article, was interpreted with reference to the participation spaces typical of this context and the offerings of consumer products meeting the demands of these people in exceptional situations.

This reality is relevant to this study, as it involves the social support networks of families, with their parents and siblings, especially as they are related to Bauman’s identification of weakening traditional structures, including families [1].

This study took an exploratory look at the social participation of older people who have children with spina bifida, in terms of their attendance at and involvement in activities carried out in their communities. It also examined the role that their children’s disability plays in the construction of their identities, in the present, as well as their concerns and expectations regarding the future. In order to address these objectives, semi-structured interviews were carried out and a thematic analysis was applied to interpret the results from a phenomenological perspective, seeking to understand the experiences of older people with children with spina bifida in the context of liquid modernity.

2. Theoretical Framework

People with spina bifida have medical care needs related to urinary and fecal incontinence, tethered spinal cords, scoliosis, obesity, hypertension, sleep apnea, pressure ulcers, pain, bone fractures, depression, anxiety, sexual function, and hydrocephalus [24]. As for their mobility, depending on the severity of the consequences of their injury, they use different devices for travel: walking aids, crutches or wheelchairs. There are also those who can walk with the help of splints, crutches, a walker, or without any support or orthopedic device [25]. This complex and multidimensional landscape presented by people with spina bifida means that their caregivers may be affected by support needs [26], as is also the case with caregivers of people with other disabilities [27].

Medical and social advances in caring for this pathology have increased the life expectancy of the population with spina bifida [28]. Therefore, older relatives find themselves at advanced ages facing additional challenges in caring for their adult children with spina bifida. In previous stages, these parents adapted their work, social participation, and leisure dynamics to the needs of their children with spina bifida, often with the support of professionals, organizations, and family, nuclear and extended [14]. However, losses of family members, such as parents and/or siblings, are common in the last stage of life. Therefore, it is worth asking whether these parents, now older, face the care alone or can continue to count on family members in their social networks [29] to support them with their adult children with disabilities. The family life cycle [30,31,32,33] may have been altered by a child with a physical disability in the sense that the care needs of the son or daughter continue to shape family dynamics, as in previous stages [34].

2.1. Family and Identity Construction

The family is constituted as an institution characterized by solidarity, security, and protection. Their dynamics also shape their members’ social and community participation. Intergenerational relationships facilitate care for those of different ages, although, at times, conditions arise determining that coexistence is not subject to the choice and independence typical of the “liquid” but rather the dependence defining the “solid” [35]. In the era of solid modernity, the family furnished its members with stability and security. In this time of liquid modernity, in contrast, relationships within the family have become more inconsistent [36]. Liquid modernity means that, increasingly, families are institutions in which each member takes his own path, even if other members face difficult situations [37].

Identity is constructed in relation to one’s family. During the period of solid modernity, identity was secure, irrefutable, and stable, providing people with security [38]. Identity is conceived as a project to be carried out by choosing between different alternatives that can constantly change, in a process influenced by uncertainty, instability, and helplessness [39,40,41,42]. However, there are people who, due to different circumstances, do not have the opportunity to choose their identities, because it is imposed on them [43]. The birth of a child with a disability, specifically spina bifida, inevitably alters the process of constructing one’s subjective identity, which revolves around care, without possible alternatives. These fall especially on mothers, providing a solid anchor despite the liquidity of the circumstances associated with this type of upbringing. Continuous changes occur (insecurity due to health conditions, surgical interventions, treatments, added difficulties in training processes, employment, independence, and community inclusion) [14]. All this entails that these parents develop adaptive styles of positive coping and resilience. These are characterized by optimism, openness, seeking positive reinforcement, an orientation toward caring for and meeting the needs of others rather than oneself, and limited involvement in social activities [44].

2.2. Social Participation

The prism of liquid modernity can also be applied to social participation, in the sense that it reveals changes in the way people relate to each other in the spaces of interaction. In this dynamic era, relationships between people occur within the framework of leisure activities and at shopping centers, while during the era of solid modernity, workplaces were where people maintained relationships [36]. In connection with the above, older people no longer participate in workplaces, giving rise to other spaces for socialization, many of them revolving around leisure activities specific to the group organized by public bodies [45]. In these new contexts of social participation, there is little commitment and stability, as social participation activities that require long-term permanence or active involvement are avoided [28].

In any case, the concept of social participation is not unique and can be understood in different ways, although three aspects are usually taken into account: focus, context, and the people involved [46]. Referring to older people and aging, social participation can be understood as “a person’s involvement in activities that provide interaction with others in society or the community” [47] (p. 2148).

Social participation focused on older people can include multiple activities. These include providing informal support to others, having an online social media account, seeing one’s children, meeting friends, belonging to a club or group, and volunteering. Also, they include leisure activities of a physical, intellectual, religious, or social nature, such as attending movies, theater, or sports, cultural, or socio-educational activities, such as university programs for older people [48,49,50,51]. Factors that may impact the degree of older people’s social participation include their health and well-being [50]. Attitude is also an important factor; that is, if the person assigns importance to the activity in relation to their well-being, values, and autonomy. Social influence, especially from peers and children, and personal effectiveness, understood as one’s confidence in their own abilities, and a perception of the effort involved in participating and the result obtained with it, are also factors that affect older people’s social participation [52].

Rural settings represent a particular context for social participation by older people, their needs being related to personal factors, the social environment, and the physical one. To be able to participate, there are common and particular elements in rural areas, such as transport, information about the activities, adaptation to their interests, having company at the activities, assistance by volunteers, adaptation to health situations, having a support network, and being recognized [53].

Within those public services to promote social participation, in Spain, 27% of the members of this utilize senior centers [45]. A challenge faced by public policies, especially local ones, is precisely that of promoting social relations between older people by promoting their participation in social, cultural, leisure and sports activities specifically designed for this group or their involvement in the community’s social fabric, such as through volunteering [54]. Social action professionals, such as social workers, can help to mitigate the social isolation of older people by encouraging their social participation and the generation of support through groups, associations, and clubs, constituting suitable contexts for sharing feelings and experiences [55].

In the world of solid modernity, the working world was where people maintained relationships, while in the liquid world, they revolve around leisure activities and shopping centers [36]. In these contexts, these relations feature little commitment or stability [29]. Older people no longer participate in the working world, so other socialization spaces are set up, many of them centering on leisure activities specific to the group, as has been pointed out. In relation to older people’s social participation, another characteristic of liquid modernity must be taken into account: consumption [56]. Life during this time of liquidity hinges on one’s ability to consume [2,39,57]. However, there is a growing number of people who have no capacity to consume, as they face situations of poverty and exclusion, with their economic impotence marginalizing them as abnormal, according to current social norms [58,59]. In the specific case of the population studied, older people with children with spina bifida constitute a heterogeneous group in terms of the size of their municipalities of residence. Social participation can be shaped by context, as has been pointed out [46]: the range of activities offered, both in general and those specifically aimed at older people, varies depending on one’s geographical area of residence. Participants’ health problems, including reduced mobility and pain, in some cases, affect their social participation. The marital status of those comprising the participating group, in particular those who have lost their wives or husbands, with the ensuing lack of company to attend activities, and the demotivation, depression, and sadness associated with this, will be factors on which to focus to understand the experience as regards social participation. However, there are issues specific to this unique group requiring special attention, such as accessibility when traveling with children and a lack of centers that can care for them temporarily. All this can constitute added obstacles to the social participation of these people, and it was this study’s main focus. Among these other aspects that impact their capacity to consume, it was found that offerings are limited compared with the general population, for example, with regard to trips attended by people with physical disabilities and who use a wheelchair [60]. During this era of liquid modernity, another circumstance that may affect consumption by older people with disabled children is the limited availability of services that can take care of their children while they participate in social activities [61].

2.3. Fragile Relationships and Apprehension About the Future

Closely linked to social participation is, as mentioned, are relationships between people. During the era of solid modernity, the bonds between people were focused on community objectives, aimed at helping others. The literature does indicate, however, that friendships between older people have increased in the last thirty years, possibly thanks to a public and social commitment to active aging and social participation [62]. Thus, in this “liquid” present, the circumstances of relationships and the contexts where people interact are more related to consumption than to empathy and commitment [37,38,63]. There is no place for the forging of relationships based on solidarity, ones that require responsibility, or assistance, and this entails new forms of exclusion [64,65]. In the current era, life experiences are faced alone, without social support. This can happen when an older person lives with a child with a physical disability. To this is added their uncertainty about the future, another characteristic inherent to liquid modernity [29].

As noted above, families with children with spina bifida have experienced a liquid reality, their daily lives characterized by unpredictable health complexities that, inevitably, must be dealt with immediately and whose outcomes are uncertain. Consequently, the changes in their children’s health generate changes in family dynamics. These circumstances mirror the short-term nature and flexibility typical of liquid modernity [36]. In old age, unexpected situations continue to occur, due to both their own health situations and those of their children with disabilities.

This uncertainty is not only limited to the present but also the future, as it is not possible to predict what may happen, taking into account that the structures consolidated in the past are disappearing or becoming fragile [66]. One of these structures is the Welfare State. Given its progressive weakening, those who received its services and benefits are expected to meet their needs individually and using the market, in accordance with the neoliberal policies and consumerism that characterize liquid modernity [67,68,69]. The Welfare State in Spain has historically been based on cornerstones such as universal and free health care, education, and social services, as well as a pension system. However, since the 2008 crisis, there has been a progressive reduction in public spending, cuts to these cornerstones, and privatization of services. Shortly before, in 2006, the Law on the Promotion of Personal Autonomy and Care for Persons in Situations of Dependency (Dependency Law) had been approved, introducing services, programs, and benefits for persons with disabilities. The Dependency Law was also affected by budget cuts and has been implemented unevenly and very slowly, without generating the desired protection [70]. This law includes, for example, day centers, home care, relief programs, residential resources, and financial benefits for caregivers. The overload faced by caregivers and the lack of institutional support stemming from the crisis experienced by the Welfare State can affect those caring for people with disabilities, undercutting, for example, their social participation [34,61].

It was, precisely, the baby boomers who participated in protests for the implementation of the Welfare State, and they are now the ones who are dealing with the effects of its disappearance. Uncertainty has a particular impact on vulnerable people, considered new outcasts by liquid modernity because they do not participate in the workplace [36,37,58,59,64,65]. In this scenario, calls for social rights only have a collective place when coming from a group of people who share a characteristic that distinguishes them from the rest, a community [71].

In relation to care, when it is provided in the home setting, it is carried out with an approach in line with liquid modernity. This approach to care is more individualized, allowing for greater flexibility and control over processes and decision-making by family members and the person cared for. Despite this, when health situations worsen, more solid forms of care, at institutions, begin to be proposed, as these provide greater certainty that care will be provided properly, reducing the anxiety associated with uncertainty. Awareness of these situations and concerns related to care and liquid modernity can help health and social professionals, as well as politicians and managers of social and health services, to implement policies that reduce the insecurity and concerns of caregivers in the home setting [72]. In addition, it is necessary to know that alternatives, in the form of cohabitation or residential facilities for children with physical disabilities and older parents, are insufficient in the territorial context in which the research presented is framed. Of the seventy-seven homes with support for people with disabilities in the Valencian Public System of Social Services, only five are geared toward people with physical disabilities, only one of them being in the province of Alicante. In addition, this Spanish province only has one residence for people with physical disabilities [73].

3. Materials and Methods

This study employed a qualitative exploratory approach due to the scarcity of previous research on the impact on older parents of caring for children with spina bifida in several areas, including social participation, social construction, the fragility of social networks, and worries regarding the future. The qualitative methodology allowed for the degree of profundity that was desirable in this study.

As regards the participants, the study is based on fifteen semi-structured interviews with twenty-four older people; specifically, their ages ranged from 65 to 88 years old. Their places of residence were nine different municipalities in the province of Alicante (Spain), varying from less than 1500 inhabitants to more than 350,000. Ten men and fourteen women participated. Ten participants were married, and four were widowed (Appendix A contains more detailed sociodemographic information of the sample). These older people belonged to the Alicante Spina Bifida and Hydrocephalus Association (AEBHA), which signed an agreement with the University of Alicante to carry out a broader study within the framework of this article. In summary, the inclusion criteria were the following: (1) being 65 years of age or older, (2) having a child with spina bifida, or a family member with whom parental authority has been exercised in the past, without an associated intellectual disability, and (3) being a member of the AEBHA. People with children with associated intellectual disabilities were excluded from the sample because their precise needs, as well as the specific resources aimed at them, differ from those who only have physical disabilities. The universe of people over 65 years of age was made up of thirty-four people, coinciding with the census registered in this non-profit organization’s members database, which served as a source for obtaining contact information. Given the small size of this universe and its total accessibility, a census strategy was chosen, understood as the inclusion of all available units of analysis, without resorting to sampling techniques. This methodological decision was aimed at maximizing the inclusion of potential participants, thus covering the entire target population [74]. Some data on the total of fifteen children with spina bifida of the older participants that can help the reader understand the phenomenon are that nine live with their parents at the family home, and six live independently, alone (3) or with their partners (3). The typologies, in terms of forms of ambulation for short distances, were the following: without support products (5), crutches (3), manual wheelchair (5), and electric wheelchair (1). Six people used electric devices for long distances: wheelchair (1), hand bike (3), and scooter (2).

Regarding the procedure, firstly, an information document on the study was sent to AEBHA’s partners via the usual communication channel used by the entity with its members. Subsequently, telephone and/or face-to-face contact was established with all the people who made up the study’s universe. In some cases, the initial contact was directly with the participants (14), while in others it was made indirectly, through their children (10), because at the time, they were the ones who maintained a regular relationship with the association, or because the contact details appearing in the organization’s database corresponded to their children (10). In the latter cases, the second contact was managed directly with the participants to coordinate the place and time of the interview, depending on their availability (4), or the children again acted as intermediaries (6). Of the total universe, some refused to participate (6), while others did not respond by the deadline established for their inclusion in the study (4).

In relation to the data collection instrument, an ad hoc coherence table was prepared with topics and subtopics, with thematic blocks that guided the semi-structured interview. For the purposes of this study, the specific topics and subtopics were social support networks (subtopics: needs and support people), ageing and social participation (subtopics: identity building and participation in cultural, social, educational or sports activities), and concern for the future (subtopics: the future of one’s child with a disability, and one’s own future). The interview has been semi-structured, and a single, open question was chosen to head each of the subtopics. Some examples are the following: What support needs does your child have on a day-to-day basis? How do you think being a caregiver influences your identity? Do you regularly participate in any cultural, social, educational or sports activities away from home? What worries you about your own future?

The research and data collection instrument was approved by the Research Ethics Committee of the University of Alicante (UA-2024-11-24), as it complies with the Good Clinical Practice standards and the international ethical principles applicable to human research, in accordance with the Declaration of Helsinki. In the analysis, the coding system used to anonymously identify the participants followed the design of certain elements from the table in Appendix A and was completed with the following structure: (1) Gender: Male (M) or Female (F); (2) Interviewee number; (3) Child’s residence modality: Independent Living (IL) or With Family (WF). For example, the following coding was used: F9-WF (Female–Interviewee number 9–With Family). The interviews were carried out in person, at the home of the people interviewed (8); at an external space chosen by them in their municipality of residence (1); or at the headquarters of the Alicante Spina Bifida and Hydrocephalus Association (5). Despite the geographical dispersion of the participants’ places of residence, the face-to-face interview was chosen, taking into account the digital divide with the group of older people, which could have resulted in a lower response rate if other technological means were used to carry out the interviews, which were conducted from January to March 2025. The average length of the interviews was 50 min.

A thematic analysis was carried out with a deductive approach, starting from the coherence table, which had been previously designed based on basic conceptual elements of liquid modernity. Next, the interviews were carried out, which were recorded on digital media and transcribed verbatim. ATLAS.ti 7 (version 7.5.18) qualitative analysis software was used to identify categories and codes, linked to the topics and subtopics according to the participants’ responses, to systematically organize the findings, aligned with the initial thematic axes. A triangulation was carried out between the authors, establishing a review of the codes and discussion, and consensus meetings were held to determine the most appropriate ones based on the data and perspectives appearing in the interviews. In this way, the impartiality and consensual selection of the codes that informed the data’s subsequent systematization and interpretation were guaranteed.

4. Results

Below is a representative selection of the results obtained by the study, which makes it possible to configure a relevant overview of the phenomenon studied. To understand the results in the areas studied, it is necessary to contextualize in advance the type of support needed by the adult population with spina bifida. On the one hand, Basic Activities of Daily Living (BADL), such as moving about, dressing, showering and addressing incontinence are facilitated by their older parents, usually when they live with them:

Now, as his father has to put him to bed, well, he has to go to bed when his father does (…). He can’t even wash himself. Because he can’t even comb his hair, or anything (…) he needs everything done to him.

(F9-WF)

As regards Activities of Daily Living (ADL), the participants indicate that they need help. This help is especially necessary when their children live at home and, at times, even when they have become independent. By Instrumental Activities of Daily Living (IADL) we mean, among others, moving about, preparing meals, managing incontinence materials, taking out the trash, etc.

He gets dressed and so on. The only thing is that I have to wash his things and make the food. Because with the food it’s not possible, because he would burn it, or he would drop everything.

(F15-WF)

What has to do with diapers, yes, I take care of that (…) I take the cart because they give me the package, I put it in the cart, the catheters, and it scares me, in case she falls or anything. I take care of that.

(F17-WF)

Generally speaking, when children become independent, they do not need help from their parents. On rare occasions, when parents and children still live together in the family home, it is stated that the children do not need support, or very little:

He practically does the housework. If he’s alone, he makes his food, goes to the store, buys his food, and manages to bathe. A lady comes to put the washing machine…but he’s quite independent. At the superficial level of survival, he can get by quite well. With more complicated things, like cleaning, preparing his clothes, or something like that, he has difficulties.

(F11-WF)

4.1. The Influence of Being a Caregiver on the Construction of Identity

Opinions about whether having a child with a disability currently impacts the construction of the parents’ identities vary. Some older parents indicate that their role is not defined at this time by being caregivers for their children, but they do state that it has had an impact in the past. This happens especially when the children live independently or have minor mobility impairments:

It was all about taking care of him. Now we do our stuff, and he does his.

(F8-IL)

No, no. Sometimes, maybe. There have been times when, yes. But not now, not now. Not at all. With him, I feel very liberated. Very liberated (…). Now I don’t have that burden, that feeling.

(F2-IL)

However, there are older people who, despite the fact that their children are already adults, continue to define their identities based on their roles as caregivers, usually in cases where the children live in the family home:

Our freedom has been taken from us (…) because we have always been paying attention to what she has needed and we are. In other words, our golden years are not easy.

(M13- WF)

The fact that parents’ identities revolve around caring for their children is accepted in such a way that it is expressed as something that will remain so throughout their lives:

Being alive, and able, I’m not going to leave him. Do you understand me, or not? As long as I can, I’m not going to leave him.

(M10-WF)

Mutual care between parents and children is not common in the participants’ accounts, but it is highlighted in cases of widowhood, where there is no support from a partner in everyday life, or when one of the parents is ill and needs help. Another finding is the feminization of care when the family lives together with both parents in traditional families where the woman previously served as the child’s caregiver at home while the father worked outside it:

I’m there to help him, and he also helps me with other things (…) as long as I’m there, he has everything (…) if he weren’t there, well, I would be there, I would have less work.

(F3-IL)

It is clear that the burden is borne by her mother. She carries it, the whole burden (…) 90% is her mother.

(M6-WF)

4.2. Community Participation

When it comes to community participation, most family members whose children live independently, or those who are not dependent on performing AIDL, participate in senior activities. These are usually organized by public services and/or entities near them. Also, they are part of the boards of organizations or less structured activities outside an organized framework:

On Mondays we do yoga, on Tuesdays we dance and do exercises. On Wednesdays we do yoga, and on Fridays we dance and go exercises.

(F22-IL)

I’m in a cultural group. I’m learning to dance the jota. We do small, free performances around here, at churches, town halls and such, for free. Now I’ve been appointed secretary, precisely.

(M12-WF)

I already have my hunting and fishing (…) and apart from that I also walk, I often walk (…) no, I’m not overwhelmed. And, socially, I have many people, I know many people and… my game, Dominos.

(M6-WF)

Another relevant aspect in this study is its gauging of the possibility of travelling when caring for adult children with spina bifida. Again, people who do not live with their children are those who have the greatest capacity to participate in activities where they must spend several days away from home, although in some cases, feelings of guilt are expressed:

Look, this year I’ve already taken three, and in April I’ll take another. Very good, right? We’re retired. You can take up to five (….) fantastic

(F22-IL)

Yeah, yeah. It’s just that I like to travel, but, of course, it also hurts to go 4 or 5 days (…) but I leave him alone. It’s a problem.

(F3-IL)

When families live together and, especially, when the children must move about in a wheelchair, accessibility emerges as a circumstance that limits the types of trips that can be taken. This highlights differences in consumption, typical of liquid modernity, relative to the rest of the population, who do not have to take this issue into account when organizing travel:

There are some places here we haven’t been able to go with him, and that’s just that. We’ve always chosen places where he has mobility and won’t have much trouble moving around. It does limit you, it limits you a lot.

(M21-WF)

In other cases, especially when children have greater needs with Basic and Instrumental Activities of Daily Life, there is daily coexistence and a lack of formal and informal support networks. Older parents can participate in activities in the community and travel, but they are constricted when doing so:

My day to day life, I live for her, I live for her, I live for her. I don’t go out anywhere, other than for the work at my house, because I can’t leave her (…)I don’t go out with friends, to the movies or to the theater. She… my life revolves around her, her obligations (…) nothing, I don’t sign up for a trip or anything.

(F5-WF)

If we wanted to go, for example, on a trip, which we aren’t going to do because, when we went, we went with him, but we can’t leave him anywhere.

(F9-WF)

He has painting on Tuesdays, and he goes on Mondays to hike in the mountains. I go to Pilates, or to History classes (…) but one of us is always there for him, him or me.

(F20-WF)

In addition to the care required by an adult child with a physical disability, suffering grief or having health problems reduces parents’ social participation. Although manifested by a small number of people, it is important to highlight this particularity, which is common to older people as a group and, in the case of this study, particularly affects widows. This is relevant because when carrying out local activities, company is important, and feelings of sadness and a lack of motivation are associated with this type of situation. These added circumstances mean that activities tend to be carried out more at home, in a solitary way, or that doing them outside the home entails an onerous effort:

What happens is that, of course, there was the pandemic, then my husband died, then there was the mourning. Well, I didn’t go out, except on Saturdays and Sundays, but there’s not that joy anymore. (…) you have to make an effort, because you don’t always feel like it. You start to make new friends, they’re all widows.

(F3-IL)

No, I don’t have the time, or the desire, because I can’t walk.

(F14-WF)

4.3. Apprehension over the Future

Uncertainty and concern about the future, which are characteristic of a liquid society, are recurrent themes among the participants, who often worry about what will happen to children with disabilities when they die. This widespread concern is expressed particularly by widows, whether they live with family, their children live independently, or when they do not have a partner:

You think about her being alone and not being able to manage. That really worries me (…) her. Her, because I see the others more or less on track, but not her. That’s my worry. Her. Ever since she was born.

(F5-WF)

That’s my worry, that’s what I… It’s that, being gone and leaving things unstable. Because I know that I have to go.

(F4-WF)

The job insecurity that affects the group of people with disabilities, in general, the health issues inherent to a chronic pathology such as spina bifida and low income, also concern parents looking to the future, whether they live with their children or not:

And I know that when I go, I’ll say, “Well, look, good luck, son. Because the living conditions you have are not like those of others. And the moment you lose this job, due to some kind of bad luck, some misfortune, you’re not going to find one” (…) if I have my son, I’ll worry my whole life.

(M7-IL)

Because, of course, with what she gets paid, I don’t think she’ll be able to (…) she doesn’t even have enough to pay the housing association fee (…) because she can’t have a job either, and every day she’s sick.

(M13-WF)

However, in some cases, as their children have developed greater autonomy, have become independent, or have found partners, their concerns have diminished: The burden of care is shifted from mothers, who have primarily served as caregivers of their children in the past, to the children themselves or their spouses. Another factor that emerges as a stress reducer due to the present and future situation is when both parents are still living, as care can be shared, and parents may reason that, even if one of them passes away, the other will be able to continue supporting the child:

That has been my great worry for the last 20 years, my great worry… the day we aren’t here, (…) now it is true that I worry less because I seeing that he can manage.

(F2-IL)

When (son’s name) got married, it got a lot better. Because I know he has someone to replace me. But I used to always think: “if something happens to me, my (son’s name), what is going to happen to him?” But, since he got married, that’s given me a lot of peace of mind.

(F18-IL)

Yes, it is true that you always think that if one of us dies, it would be much more difficult, of course, because now, between the two of us, well, we can handle it.

(F20- WF)

Finally, in terms of apprehension about their own future and present, it is generally related to the death of their spouse or their own health, although having plans in place in terms of decisions to be made in case of serious illness provides some peace of mind:

And I want us to be together. I always ask the Lord to watch over him (…) we talk, we argue, we fight and everything. But in the end you say, “Oh, Lord, watch over him.” We keep each other company.

(F23-IL)

I’m worried … Am I going to stay here, or is it going to get worse? And, how fast? That worries me. I never want to be a burden for him or anyone else.

(F11-WF)

I’ve already told him, I said: “Don’t worry, I will make my wishes clear at the residential center. I’m worried about suffering before I die (…) because my family, on my mother’s side, they all died of cancer. I don’t want to suffer. And I want to leave everything in order. That’s the only thing that worries me. Everything else … to have health, for things to go well. To be able to enjoy my daughters and my grandson. And that’s it.

(F17-WF)

4.4. Fragile Relationships

A factor highlighted by older relatives of children with physical disabilities is the absence of people in their social network whom they can count on, both at present and when looking for caregivers. A fragility of ties prevails in the current era as compared to preceding ones. Sometimes, there are other children who help, from time to time, to care for a sibling with a disability. Despite this, parents believe that, generally, external support will be necessary because there are no family members who can take on the responsibility for caring for children with disabilities in the future:

His sister, well, she’s the one who, if we’re going to spend a day, if we go here or there, she comes. And it is she who stays here at home with him (…). If we didn’t have more children, it would be more worrying. I always think that his siblings will always look out for him, that’s the way I think… but, of course, he’ll have to have help, someone to help him.

(F20-WF)

Then he’ll have to look for tools. He’ll have to ask for help from neighbors, he’ll have to ask for help from friends, but he’ll have to ask for help and get used to the idea (…) he could get person who is there two or three hours a week.

(M1-IL)

In any case, the lifestyles of the rest of the children, especially due to work issues or geographical distances, mean that they are not relied on as sources of support for the disabled sibling when the parents can no longer help him or her, due to illness or death:

My son can’t manage. The other one can’t manage. With the job he has right now he couldn’t help him because he’s out practically all day.

(M10-WF)

Finally, people who live with their children and provide them with daily support with both ADL and IADL believe that the best option when they are no longer able to help them will be a residential facility where they can receive the care they need. Although support is currently being provided at home, the lack of resources and people in the institutional and primary social network leads them to think that their children will not be able to continue living alone in the community environment:

When I am gone and he… they’ll have to take him to a residential facility.

(F15-WF)

If he doesn’t go to one of these centers, he can’t be alone at home.

(M21-WF)

5. Discussion

The results of this study provide valuable information on how having a child with spina bifida influences the social participation of older people in the current framework of liquid modernity. In this context, the parents’ experiences surrounding this exceptional situation and how they affect the construction of their identities, the fragility of their relationships and support networks, and their concerns for the future, feature differences with respect to other people of the same age, highlighting a special vulnerability and insecurity, according to the findings.

First, regarding the type of activities in which older caregivers participating in the study engage, they usually provide them with forums for interaction with other people in the community [53]. These are leisure activities, specifically, social, sports and cultural ones (dances, birthday parties, yoga, or gymnastics) [48,49]. Some belong to clubs or groups, and others are less organized activities, such as meeting friends. The results corroborate that among the factors that keep these people from participating is the deterioration of their own health, especially physical, which tends to keep them at home [50]. Losses, including the death of family members, in some cases, are another relevant factor discouraging them from participating in activities outside the home. This tendency is specifically related to the influence of spouses and children, often necessary to persuade them to participate. One’s own attitude and perception of the effort involved in participating [52] are also key. The findings suggest that community participation is carried out through specific activities for older people, whether managed by public entities, senior centers, or trips organized by the Institute for Seniors and Social Services [45]. The social participation of older people in the study concurs, therefore, with the characteristics of the “liquid modernity” that currently prevails. This sociological phenomenon, as Bauman explained, entails a weakening of social ties and a dissolution of community ones [2]. Mirroring this, the relationships and social participation of the people interviewed occur in contexts entailing little commitment and stability [29] and within the framework of leisure activities [36]. People can easily enter and leave groups based on their current interests, existing offerings, and particular situations.

Precisely linked to a particular situation is the one that the participants highlight in terms of the influence of providing care for their children with disabilities Buckley et al., 2013, cited in [10,26] their isolation, caused by the care that their children with spina bifida need, which can prevent or hinder them from participating in community activities, in line with the findings of the previous literature [14,15,44].

Regarding consumption, another aspect crucial to liquid modernity, the study’s participants refer to it in terms of the possibility of participating in trips, especially. Participation in this type of activity, which involves spending the night away from home for several days, is more problematic for those who have children with spina bifida and require care. On the one hand, accessibility is an important issue when they want to travel accompanied by their children with reduced mobility [60], with barriers existing in transport and cities being indicated. It is confirmed that the range of centers or services taking care of people with disabilities, in the event that their parents travel, is not perceived as broad or affordable for families, so this is also a circumstance that complicates or makes travel impossible [61]. These older people do not have a wide range of alternatives at their disposal. Therefore, they are in situations of exclusion, as they cannot “consume” like the rest of society [58,59].

In line with the above, older people find themselves taking care of their adult children with spina bifida alone, which is in keeping with the patterns of liquid modernity, as they cannot count on other people in their social network or institutions [4]. Their other siblings cannot support them on a day-to-day basis because they are busy with their own work dynamics, which prevent them from being present and caring for their vulnerable siblings [37]. As can be seen from this study’s findings, as long as these parents are in good health and willing to help, security and stability will be provided by the family, as an institution [35,36]. However, when health problems begin to arise, or the years go by and these parents contemplate their death, or that of their own spouse, these families suffer significant worry in their daily lives. This anxiety and uncertainty correspond to liquid modernity as Bauman defined it [29]. Older parents report that when children with spina bifida have become independent or have a partner, they feel less insecure, although they are concerned about whether they will be able to keep a job or they will be able to afford to cover their needs, as their health affects their access to and permanence in the labor market. This uncertainty is palpable when the children live together at home, since there will be no people in the primary network who can replace them as caregivers at home. Thus, they end up considering coexistence resources, such as residential or assisted living facilities. For this reason, from the liquidity of current care, in the home setting, the focus turns to the solidity of these entities [72]. However, there are not enough public slots for people with physical disabilities [73] and, again, there are insufficient options to meet care needs, this time in the long term, even on the market, despite the fact that liquid modernity upholds this solution [67,68,69].

Consequently, the results suggest that these older people’s construction of their identities does not correspond to the prevailing social representations of aging, because they are not cared for by subsequent generations but rather continue to provide support to their adult children when they continue to live together, concurring with the previous literature [34]. The findings, therefore, reveal a gap in life cycles, since these families continue to experience characteristics of previous stages, when their children were young or adolescents. They never experience that moment when the children have left the home, redefining roles and addressing situations that were set aside as a couple upon the birth of their children. During their later years, they do not experience the concerns typical of this stage, as they are focused not on themselves but rather on their children [31,32,33]. All this links more to solid modernity than to the characteristics of liquid modernity, because there is no choice, there are no alternatives to function as a family in another way, nor can identity be built, because it is already determined by one’s need to provide care [39,40,41,42].

Strengths and Limitations

The main strength of this study lies in its consideration of the role of caregivers. This is posited as a relevant factor when analyzing the elements that facilitate or limit social interaction with peers, or the consumption of socio-cultural activities, especially in the context of liquid modernity. Studies focusing on older people and discussing their social participation have regularly ignored this role. This is the first study in Spain to survey older people with children with spina bifida to gather their perceptions of this issue from a social perspective.

A limitation of this study is that the sample is representative in the territorial area explored, the province of Alicante, which limits the transferability of the results to geographical contexts in other countries with different regulatory frameworks and social policies in terms of services and resources for older caregivers of family members with physical disabilities. In addition, in these other contexts, there could be different cultural, religious, or social factors that affect these group perceptions and experiences. However, this study could be a starting point that might be replicated in other regions of Spain or in other countries, thus making it possible to better understand this topic through subsequent research.

In addition, the gender perspective, regarding the feminization of care, has not been sufficiently explored in this study, so this is also a limitation of the study, which suggests future lines of research focused on it. Furthermore, this study has not accounted for the fact that the needs and difficulties of older caregivers may be different depending on their age, as the health and autonomy of people over 80 years of age may be different from those of younger members of this older population. This perspective may be worth exploring in further studies with this group.

Finally, it is noted that one of the authors is also a social worker at the Alicante Spina Bifida and Hydrocephalus Association (AEBHA). This circumstance generated confidence and motivation among the older parents, encouraging them to participate in this study. The possible bias in the design of the interviews, data collection and analysis, and interpretation of the results was offset by the neutrality of the other author, with no previous relationship with any participants or entity and with extensive experience as a researcher at the University. In addition, periodic meetings for reflection and consensus building were held to ensure ethics and rigor in the methodological process and the interpretation of the results.

6. Conclusions

The social participation of older people occurs in spaces specifically designed for this group, mostly organized by public entities. These activities allow for entertainment involving little engagement. Those who cannot participate in any way are older people with children living in the family home, and who have greater care needs. When they want to do so, they find that consumer product offerings are insufficient, excluding them. Lacking are, for example, accessible travel, specialized centers, home services, and support products. Thus, neoliberal policies push individuals to meet their needs in the marketplace, but, without adequate options in it, this specific group of older people is doomed to exclusion by liquid society, which is dominated by consumption.

The human fragility characterizing liquid modernity affects the situation under study, since the social support networks of previous times have weakened or disappeared in this last stage of life, and these parents’ other children, if any, cannot take care of their siblings with disabilities. Therefore, during old age, these parents often remain unable to configure their identities, which are built in a solid way. The liquidity of the era does not influence them because it is linked to a very strong bond, that between parents and children, and the latter’s daily needs.

Older caregivers are providing care for their children with spina bifida when they need support at home. Therefore, today’s fluid reality offers an opportunity to change the rigid way in which care has been provided, in line with national and international guidelines for deinstitutionalization. The flexibility of liquid modernity offers the ideal context for care in the home and community environment, as long as professional accompaniment and public resources are sufficient to ensure that these older people and their children are unattended in the privacy of their homes and without adequate and sufficient support. This reality is aggravated by the insufficient coverage of social policies, which do not guarantee protection mechanisms either in the present or in future scenarios, such as the death of the caregivers. Consequently, apprehension about the future emerges as a feature of liquid modernity that increases in the case of these older caregivers.

Older people who exercise care functions are, then, often helpless, especially when, for economic reasons, limitations in their personal resources, or an absence of social support networks, they encounter serious difficulties caring for their children with spina bifida. This scenario of insecurity is shaped, for these older caregivers, by aspects common to their peers, such as their own health and the loss of the capacity to continue carrying out the same activities. However, in the population under study, their main concern is how to continue supporting their children with their health-related situations and, especially, where their children will be provided with the care they need, and who will support them when they die or cannot take care of them because their health has declined.

This complex and multidimensional panorama should encourage social intervention professionals, such as social workers, to focus on assisting the family as a system but also to uphold the rights of these older people and their children. It is essential to evaluate, together with the families, as a whole, the potentialities and risks of home care environments, in order to be able to make decisions, as well as to inform them regarding resources, and to request the support products necessary to increase their quality of life. A particularly vulnerable subgroup is that of widows, who suffer additional concerns and face care overloads when they are alone, which calls for specific interventions: accompanying other children to listen to and assuage their fears and insecurities about the future of their siblings when their parents pass away and also, the identification of possible support and its types. This is whether their siblings stay at home, prefer to live in apartments, live in residential facilities, or have independent living experiences.

Finally, social workers have an important role to play in the development of children’s social skills and empowerment training for them, coordination with other professionals for training in Basic and Instrumental Activities of Daily Living, family interventions to promote greater autonomy, support in the process of living independently, and future planning programs. The application of the critical model is also essential, especially from Social Work, to call for, together with people with disabilities and their families, home support resources, apartments with supervision or professional assistance, or residential centers, so that they can choose the care model that accords with their present and future realities. All this will provide these older caregivers with the necessary scenario to reduce their anxiety about the future, favor redefinitions of their identities, and give them time to think and exercise their social participation on an equal basis with other older people.