Beyond Care: An Occupational Perspective on the Role of Grandmothers and Grandfathers as Caregivers of Children with Disabilities

Abstract

Introduction: Increased life expectancy and the growing prevalence of disability have led grandmothers and grandfathers to assume a significant role in the care of grandchildren with disabilities. However, their experiences have been scarcely explored from a qualitative and occupational perspective. Objective: To examine the experiences of grandmothers and grandfathers in relation to their participation in caregiving tasks for grandchildren with disabilities. Methods: A qualitative exploratory study framed within a constructivist–interpretive paradigm was conducted. Eleven grandparents of children with disabilities participated and were selected through criterion-based purposive sampling complemented by snowball recruitment. Data were collected through flexible semi-structured interviews and a field diary and were analyzed using inductive thematic analysis. Results: Three main themes emerged: (1) caregiver time, characterized by constant availability and occupational reorganization; (2) emotional impact, with predominant feelings of satisfaction, fulfillment, and strengthening of the emotional bond; and (3) adaptation to change, described as a progressive process of learning, acceptance, information seeking, and negotiation of family roles. Conclusions: The caregiving experience profoundly transforms the daily lives of grandmothers and grandfathers, constituting a highly demanding yet meaningful occupation. The findings highlight the need to recognize their role within the family system and to incorporate an occupational perspective into the support provided to this population.

1. Introduction

The sustained increase in life expectancy has redefined intergenerational relationships and the role of older adults within the family, fostering greater presence and participation of grandparents in the everyday lives of younger generations. Spain—one of the countries with the highest life expectancy in Europe, at 84.01 years in 2024, and with a cultural tradition of strong intergenerational family solidarity—provides a particularly relevant context for examining these dynamics. As longevity continues to rise [1], the likelihood that older adults will assume active caregiving roles over a prolonged period has increased significantly. Grandparents frequently act as caregivers and co-participants in childrearing, providing instrumental support (e.g., accompaniment, transportation, supervision, and day-to-day assistance) that helps sustain family dynamics [2,3]. This involvement is associated with intergenerational resource exchange [4], maintenance of family well-being [5], transmission of values [6], and intergenerational learning [7]. In parallel, population data indicate a sustained increase in the prevalence of disability: approximately 4.32 million people in Spain had some form of disability in 2020 (INE, 2022). In the family context, a substantial share of care falls on the extended family—with grandparents frequently assuming sustained caregiving responsibilities, especially when childhood disability is present.

From an occupational perspective, occupations are conceptualized as everyday activities performed individually, within families, or in communities that structure time and give meaning to life; they include what people need, want, or are socially expected to do and are considered central to health, identity, and a sense of competence [8]. Within this framework, caregiving can be understood as a core occupation that reorganizes routines, priorities, and roles, with direct effects on occupational identity and balance among meaningful activities. The literature has described how occupational changes associated with caregiving influence identity construction and participation in other occupations [9,10,11], and how caregiving burden may compromise occupational balance and well-being [9,10]. For grandparents, caregiving spans a continuum from occasional support to more intensive and sustained modalities, particularly when complex needs related to childhood disability are present [11]. This variability in caregiving intensity has been linked to differences in impact on older adults’ health and daily lives, distinguishing between intensive and non-intensive care [12].

Available evidence suggests that assuming a caregiving role is associated with ambivalent effects on grandparents’ well-being. In terms of burden, higher probabilities of depressive symptoms and psychological distress have been reported, especially when caregiving involves co-residence or intensive responsibilities [13], as well as lower family quality of life in households headed by grandmothers raising grandchildren with disabilities [14]. Recent studies also indicate relevant risks of anxiety and depression among family caregivers—including grandparents—of children with disabilities, together with pronounced needs for financial, rehabilitative, and psychosocial support [15]. In parallel, from a salutogenic perspective, several studies emphasize that caregiving can provide meaning, purpose, intergenerational connection, and experiences of accomplishment, particularly when adequate resources and support are available [16] and when caregiving intensity remains compatible with the older person’s health and autonomy [12]. Nevertheless, much of this knowledge derives from quantitative designs focused on health and well-being indicators [17], while understanding of how these tensions and rewards are lived and made meaningful in everyday life—especially when caregiving is linked to childhood disability—remains comparatively limited, despite emerging qualitative evidence [1,18,19]. Anticipatory concern about the continuity of care as aging progresses emerges recurrently, reinforcing the need to explore these experiences from the subjective perspective of grandparents themselves [20]. The caregiving role also shapes occupational balance and participation in leisure and social life, with implications for subjective well-being [21].

Contemporary conceptions of disability are grounded in a relational approach, whereby functioning emerges from the dynamic interaction between health conditions, personal factors, and contextual factors. This perspective—aligned with the International Classification of Functioning, Disability and Health—positions the environment as a key determinant of participation: it may operate as a barrier when it introduces physical, communicative, or attitudinal restrictions, or as a facilitator when it incorporates support and reasonable accommodations that enhance autonomy and inclusion [22]. Rights-based approaches further shift the focus from individual ‘deficits’ toward the social and political conditions that produce avoidable disadvantage, reinforcing the need to understand how caregiving families experience and narrate such barriers in their daily lives [23]. The arrival of a grandchild with a disability often intensifies family emotions and reconfigures expectations, routines, and support needs, with particular relevance for grandparents as part of the extended caregiving network [24]. Evidence shows that intergenerational support can buffer psychological distress within the family system [25], while grandparents’ understanding of disability—shaped by beliefs, prior experiences, and access to information—influences the quality of support provided. In families of children with autism spectrum disorder, specific needs for information and guidance for grandparents have been described [26,27], underscoring the relevance of qualitatively exploring the meanings that organize caregiving practices.

Care demands also vary according to the type of disability and the profile of required support. In autism spectrum disorder (ASD), greater needs for information and family adjustments have been described, conditioning grandparents’ participation and family balance [26,27]. In Down syndrome, qualitative studies have highlighted the value of intergenerational accompaniment, including the potential role of digital tools in sustaining connection [28]. Low-prevalence conditions with high communicative complexity, such as deafblindness, present unique challenges, suggesting differentiated caregiving demands and more intensive needs for relational support [29,30]. Studies of caregiving grandparents in ASD contexts have also shown associations between assumed roles and psychological well-being [31], reinforcing the need to understand not only ‘how much’ they care, but also ‘how’ they live and make sense of caregiving within their everyday occupations. From a gender perspective, evidence indicates an unequal distribution of care reproduced in intergenerational caregiving: population-based studies show that grandmothers more frequently report direct caregiving activities (e.g., caring for a child when the child is ill, helping with schoolwork, school pick-up), whereas grandfathers tend to concentrate more on peripheral or accompaniment support suggesting a task division consistent with traditional gender patterns [32]. Intensity and type of involvement may also differ by sex, with differentiated effects on health and well-being [12,33].

Despite growing interest in family caregiving in disability contexts, scientific production has tended to focus on parental figures and on burden or well-being indicators, while evidence on grandparents remains comparatively limited, fragmented, and qualitatively underexplored from an occupational perspective. Although grandparents contribute substantially to the care of children with disabilities, little is known about how this caregiving role is experienced and reorganized occupationally in everyday life or how it affects occupational balance and identity in later life. In response to this gap, the present study examines the experiences of grandparents caring for grandchildren with disabilities, with particular attention to the meanings attributed to caregiving, the activities performed, and the positive and negative impacts on everyday life from a qualitative and occupational perspective.

2. Materials and Methods

2.1. Study Design

A qualitative exploratory study was conducted, framed within a constructivist–interpretive paradigm [34]. This approach was selected because the aim of the study was to understand how grandmothers and grandfathers make sense of their caregiving role, how they organize everyday occupations around care, and how they attribute meaning to these experiences in their family context.

The design was informed by an interpretive interest in lived experience, but the study did not seek to apply a formal interpretative phenomenological analysis protocol. Instead, flexible semi-structured interviews were used to elicit participants’ accounts, and the data were examined through inductive thematic analysis. This methodological alignment made it possible to identify shared patterns and relevant divergences across narratives while preserving the contextual and subjective character of each account [35,36].

Interpretive phenomenological analysis (IPA) was not applied in this study; IPA-specific procedures, such as idiographic case-by-case analysis prior to cross-case examination, were not used. The study is a qualitative exploratory study within a constructivist–interpretive paradigm, using inductive thematic analysis as the primary analytic method.

2.2. Participants and Sampling

Participants were recruited between February and April 2024 using criterion-based purposive sampling, complemented by snowball recruitment. The sampling strategy sought participants who could provide rich and relevant information about the phenomenon under study and aimed to obtain variation in sex, age, place of residence, type of disability of the grandchild, and level of caregiving involvement. However, the final composition of the sample was determined by the availability of eligible participants and their willingness to participate during the recruitment period.

The inclusion criteria were: (1) being a biological or adoptive grandmother or grandfather of a child with a disability; (2) the grandchild having a formal diagnosis of disability (physical, intellectual, sensory, or developmental); and (3) being actively involved in the child’s care or support, either regularly or occasionally. The exclusion criterion was having a grandchild older than 18 years at the time of the study.

The final sample comprised 11 participants (8 grandmothers and 3 grandfathers) from Toledo, Talavera de la Reina, and Madrid. The grandchildren primarily had diagnoses of autism spectrum disorder (ASD) and Down syndrome. The sample mainly reflects caregiving experiences in early and middle childhood; no grandparents caring for adolescents were recruited during the study period. Sociodemographic and family characteristics are presented in

Table 1. Sociodemographic and Caregiving Characteristics of Participants.

Code	Sex	Age (Years)	Setting	Disability Type (Grandchild)	Co-Residence	Caregiving Intensity	Hours/Day or Weekly Pattern	Interview Modality *
P1	Female	67	Rural	ASD	Yes	Daily/intensive	~24 h/day	F
P2	Female	79	Urban	ASD	No	Occasional	Weekends	T
P3	Female	70	Urban	Down syndrome	No	Occasional	During visits	T
P4	Male	73	Urban	Down syndrome	No	Occasional	During visits	F
P5	Female	59	Urban	Down syndrome	No	Occasional	~Monthly	T
P6	Female	75	Urban	Down syndrome	No	Regular	Mon–Fri mornings	T
P7	Female	53	Urban	ASD	Yes	Daily/intensive	All day except school + nights	T
P8	Female	73	Rural	Down syndrome	No	Regular	Almost daily (afternoons)	T
P9	Male	72	Urban	Developmental delay	No	Regular	Daily after school	T
P10	Female	78	Urban	Down syndrome	No	Daily/intensive	Near-daily, all activities	F
P11	Male	77	Urban	Down syndrome	No	Daily/intensive	“Always on call”	F

* T = telephone; F = face-to-face.

.

The sample size was not determined a priori but was guided by the principle of informational sufficiency [37], which holds that adequacy depends not on a fixed number of participants but on the informational power of each case, defined by the specificity of the study aim, the richness of the sample, the quality of the dialog, and the analytic strategy. Given the focused research objective, the criterion-based purposive sampling strategy, the depth of the interviews (20–60 min each), and the thematic saturation observed (no new thematic content emerged during the final interviews), the sample of 11 participants was considered to provide sufficient informational power.

2.3. Procedure

Recruitment began with the distribution of an information sheet to professionals, non-governmental organizations, and special education centers in the Toledo area, with the aim of facilitating contact with potential participants. Subsequently, snowball sampling was used, and initial participants were asked to identify other individuals who met the inclusion criteria and could provide relevant information [35]. Once potential participants were identified, telephone contact was established to explain the purpose of the study in detail and address any questions. An interview appointment was then scheduled. Participants were offered the possibility of a face-to-face or telephone interview. Telephone interviews were included to reduce travel burden, facilitate participation among older adults with caregiving responsibilities or health constraints, and include participants living in different locations. Study information and informed consent were provided in person or, when the interview was arranged by telephone, verbal consent was recorded.

The verbal consent procedure was explicitly approved by the Bioethics Committee of the University of Extremadura (protocol code 48/2022). For participants interviewed by telephone, the principal investigator followed a standardized script covering: (a) the purpose and nature of the study; (b) voluntary participation, with no consequences for withdrawal; (c) guarantees of anonymity and confidentiality; (d) audio recording and destruction of the recording after verbatim transcription; and (e) the right to ask questions or withdraw at any time. Verbal consent was audio-recorded as part of the interview. These informational elements were equivalent to those provided in writing to face-to-face participants.

Participation was emphasized as voluntary, with guarantees of anonymity and confidentiality, and participants were informed of their right to withdraw from the study at any time without consequences.

Regarding non-participation, information sheets were distributed in-person to one entity in the Toledo area, where the researcher’s contact details were also left; however, no individuals from that entity subsequently contacted the research team. Additionally, through an indirect snowball referral, a small number of potential participants were identified but did not take part, as they became emotionally distressed when the topic was raised with them by the intermediary contact. The researcher had no direct contact with these individuals at any stage. No formal documentation of non-participation was generated for these cases, given the absence of direct contact and the emotional sensitivity of the topic.

2.4. Data Collection

Data were collected through in-depth semi-structured interviews and the researcher’s field diary. Interviews were guided by a flexible interview guide (

Table 2. Interview Guide.

Thematic Area	Guiding Questions
Initial experience	What did you think and feel when you learned that your grandchild had a disability?
Care tasks	What caregiving tasks do you usually perform?
Care intensity	How much time per day do you devote to these caregiving activities?
Support network	Does anyone else collaborate in these caregiving tasks? If so, what are they responsible for?
Life changes	Have you noticed changes since your grandchild entered your life? In what way?
Impact on daily life	How does caring for your grandchild influence your daily life?
Occupational compatibility	How do you perceive balancing caregiving with other daily activities?
Occupational reorganization	Have you replaced activities that were previously part of your routine? Which ones?
Self-care and leisure	How much time do you dedicate to yourself? What leisure or free-time activities do you engage in?
Meaning of the role	How would you define the role you play in your grandchild’s life?
Information and support	Do you consider that you have sufficient information from professionals and family members regarding your grandchild’s situation and care needs? *
Time shared	How much time per day do you spend with your grandchild? *

* Additional questions were flexibly incorporated during the interviews to further explore relevant emerging aspects.

), designed in line with the study objectives. This format allowed key topics to be addressed while also enabling deeper exploration of relevant emerging issues during the dialog, fostering a rich and contextualized understanding of the narrated experiences [36].

Most interviews were conducted by telephone; four participants opted for face-to-face interviews, which were held in quiet and familiar settings. The interview modality was therefore participant-led rather than imposed by the research team. The same flexible guide was used in both modalities, and the interviewer encouraged participants to expand, clarify, and provide examples beyond the guiding questions. All interviews were audio-recorded, lasted approximately 20–60 min, and were transcribed verbatim. Identifying data were removed, and audio files were destroyed after transcription. All interviews were conducted by the principal investigator. The field diary was used to record contextual observations, impressions, emotional reactions, and analytic reflections, contributing to researcher reflexivity and analytical rigor. Diary entries were reviewed alongside the interview transcripts during analysis and were used to identify contextual elements (e.g., non-verbal cues in face-to-face interviews and the emotional tone of conversations) that informed the interpretation of specific passages. Field diary content was not coded as a primary data source but served to triangulate and contextualize emerging interpretations, and to document the collaborative analytic process.

2.5. Data Analysis

Interviews were transcribed with the support of Amberscript and organized for analysis using ATLAS.ti. Analysis followed an inductive thematic approach within an interpretive qualitative orientation. First, each transcript was read repeatedly to gain a holistic understanding of the accounts. Second, meaning units related to caregiving activities, time organization, emotional experience, family roles, and adaptation processes were identified and coded. Third, codes were compared across cases to examine similarities, contrasts, and nuances and were progressively grouped into broader categories.

This iterative process generated 779 initial codes, which were subsequently integrated into 60 subcategories and synthesized into three themes representing central dimensions of the caregiving experience: time organization, emotional experience, and adaptation to change. ATLAS.ti version 23 was used to support the organization, traceability, and internal auditing of the analytic process [38]. Analysis was conducted collaboratively with a second researcher to contrast interpretations and enhance the credibility of the findings. Codes were grouped into subcategories based on semantic similarity and thematic relevance, and the subcategories were subsequently examined for conceptual coherence and theoretical salience before being synthesized into overarching themes. At each stage, the two researchers discussed divergent interpretations and reached consensus through dialog.

Table 3. Analytic Hierarchy: Themes, Subcategories, and Representative Codes.

Theme	Subcategory	Representative Codes
Theme 1. Caregiver Time: “We Are Always on Call”	Constant availability and total dedication	“always on call”; “always on duty”; “24 h a day, body and soul”; “full-time grandmother”
	Occupational reorganization of daily routines	daily routine reconfiguration; personal time subordinated to caregiving; caregiving as primary occupation
	Gendered task distribution	grandmothers’ physical care (feeding, dressing, hygiene); grandfathers’ accompaniment and transport
	Displacement of personal occupations	leisure curtailment; reduced social participation; self-care deprioritized
	Health management tensions	deferred medical appointments; own health deprioritized; health–care balance
Theme 2. Emotional Impact: “I Feel Fulfilled”	Initial impact of the grandchild’s diagnosis	initial shock; emotional overwhelm; worry for the future
	Fulfillment, satisfaction, and sense of purpose	emotional reward; pride in grandchild’s progress; “they give you calm, joy”; sense of contribution
	Differential emotional bond and occupational identity	particularly intense bond; “feeling something is missing”; identity as caregiving grandparent
	Regulation of family emotional climate	calming effect on family; emotional anchor; relief in conflict situations
	Emotional strain sustained by love	emotional burden acknowledged; love as protective factor; “because I love them”
Theme 3. Adaptation to Change: “Until Something Happens in Your Own Home, You Are Not Interested”	Situated and practical learning about disability	learning by doing; knowledge through experience; disability-specific skill acquisition
	Acceptance and normalization of caregiving routines	normalization of daily routines; valuing small developmental achievements; adjusted expectations
	Redefinition of priorities and personal role	new occupational identity as caregiving grandparent; priorities reoriented; revised self-narrative
	Negotiation of intergenerational family boundaries	complementary to parents; not replacing parental authority; supportive positioning

illustrates the analytic hierarchy, showing representative codes, subcategories, and the themes to which they belong.

All interviews were conducted and analyzed in Spanish (Castilian), the native language of both the participants and the research team, to preserve semantic nuance and cultural meaning. Verbatim quotations were subsequently translated into English by a professional translator, and the authors reviewed all translations for accuracy and conceptual fidelity before inclusion in the manuscript.

ATLAS.ti version 23 was used for organizational and traceability purposes: to store and manage transcripts, attach and organize codes to textual segments, generate code lists and frequency reports supporting subcategory grouping, and maintain an audit trail linking themes and subcategories to their constituent codes and source segments. All interpretive and analytic decisions were made by the researchers; ATLAS.ti served as a support tool for organization and transparency.

Collaborative analysis with the second researcher (P.A.C.-G.) proceeded across three stages: (1) after initial independent coding by the first researcher, the code list and preliminary subcategory groupings were reviewed and discussed by both researchers; (2) at the subcategory-to-theme stage, both researchers examined the proposed theme structure and discussed alternative interpretations, reaching consensus through dialog; and (3) the final thematic descriptions and exemplary quotations were reviewed by the second researcher for coherence and representativeness. This process was documented in the field diary.

2.6. Methodological Rigor

Study rigor was ensured by adhering to the criteria of credibility, transferability, dependability, and confirmability, in line with qualitative research recommendations and the COREQ checklist [39]. Credibility was strengthened through prolonged engagement with the data, verbatim transcription of interviews, the use of verbatim quotations in presenting results, and triangulation between interviews and the field diary. Additionally, the analysis was reviewed by two researchers to enhance interpretive coherence. Regarding researcher positionality, all interviews were conducted by the first author (B.S.-S.), a graduate of Occupational Therapy with training in qualitative research methodology, working under the supervision of the second author (P.A.C.-G.), an experienced qualitative researcher. There was no prior relationship between the interviewer and any participant; all recruitment occurred through third-party entities and snowball referrals. Neither researcher had a pre-existing personal or professional acquaintance with any participant. Transferability was addressed by providing detailed descriptions of the study context, participant characteristics, and the data collection and analysis processes, enabling readers to assess applicability to similar contexts. Dependability was ensured through a systematic and transparent description of the methodological process, from participant selection to data analysis, allowing traceability of the research process. Finally, confirmability was reinforced through the use of the field diary and researcher reflexivity, as well as consensus-building between researchers during analysis, minimizing the influence of personal assumptions on data interpretation. Member checking was not employed in this study, as re-contacting participants after analysis was not feasible within the research timeline. This represents a limitation with respect to confirmability, as participants did not have the opportunity to verify or comment on the interpretations derived from their accounts. Findings should therefore be interpreted with this constraint in mind.

2.7. Ethical Considerations

The study was approved by the Bioethics Committee of the University of Extremadura (Code: 48/2022). All procedures were conducted in accordance with the ethical principles for research involving human participants. The study complied with European and Spanish data protection regulations, including the General Data Protection Regulation (GDPR; EU Regulation 2016/679) and Organic Law 3/2018 on the Protection of Personal Data and the Guarantee of Digital Rights, as well as Law 14/2007 on Biomedical Research and the EU Charter of Fundamental Rights.

The research was conducted in accordance with the Declaration of Helsinki. All participants were fully informed about the purpose and procedures of the study and provided informed consent prior to participation. Participation was voluntary, anonymity and confidentiality were ensured, and participants were informed of their right to withdraw from the study at any time without any consequences.

3. Results

The thematic analysis of the interviews made it possible to identify three main themes that describe the experiences of grandparents in relation to their participation in caregiving tasks for grandchildren with disabilities. These themes emerged from an inductive analysis of the narratives, reflecting the lived experience and meanings constructed from the grandparents’ own perspectives: (1) Caregiver time: “We are always on call”; (2) Emotional impact: “I feel fulfilled”; and (3) Adaptation to change: “Until something happens in your own home, you are not interested.”

Taken together, these themes show how assuming the caregiving role profoundly affects time organization, emotional experience, and adaptation processes in older adults, shaping a complex, dynamic, and highly meaningful experience in their everyday lives.

3.1. Caregiver Time: “We Are Always on Call”

The time devoted to caring for grandchildren with disabilities varies according to the child’s needs and the availability of other family members. Some participants describe intensive and continuous care, while others share responsibilities with parents or other relatives. Nevertheless, all coincide in a common element: the perception of constant availability and total dedication during the time spent with their grandchildren. Some participants expressed this as follows:

“(…) I was a grandmother full-time, 24 h a day; I devoted myself body and soul to my granddaughter. Body and soul.”

(P10)

“We are always on call, in a word. Always.”

(P11)

This permanent availability translates into a reorganization of everyday life, in which personal time becomes subordinated to caregiving demands. Dedication is perceived as an unquestionable priority, regardless of the level of involvement or the actual number of hours of care.

From an occupational perspective, this experience reflects a profound occupational disruption: habitual routines, roles, and participation patterns are reconfigured around the demands of caregiving. Drawing on Wagman et al. [40], occupational balance refers to the individual’s perception of having the right amount and variation of occupations; the subordination of personal time described here suggests that this balance is placed under sustained pressure, even when caregiving itself is experienced as meaningful.

A clear gender differentiation emerges in the distribution of tasks. Grandmothers tend to assume responsibilities related to feeding, hygiene, and dressing, while grandfathers are mainly involved in accompaniment, transportation, play, or educational support. Participants described this as follows:

“The grandfather, the help I had from the grandfather was taking them to medical appointments, going shopping, taking them to school.”

(P1)

“He takes Mariano to daycare (…) he doesn’t change diapers or those kinds of things, but if he has to take her to the park for a while, he does.”

(P6)

Time shared with grandchildren is characterized by high emotional involvement and full presence, which leads to the displacement of usual leisure activities, self-care, or social participation. However, this reorganization is not perceived as a burden but rather as a naturally assumed choice.

Occupationally, this displacement reveals a reprioritization of the occupational repertoire in which caregiving ascends to the role of a primary occupation, crowding out leisure, self-care, and social participation. As Ludwig [41] found in a study of grandmothers’ meaningful occupations, the caregiving role can simultaneously restrict access to previously valued occupations while generating new sources of meaning and purpose—a tension that is clearly mirrored in the present data.

“No, because I’m on my own here and I have my daily activities, swimming and all that, except when I go with them. Of course, all the time is for them.”

(P5)

The life stage of grandparents nevertheless introduces an additional element: the management of their own health. Some participants acknowledged having postponed personal medical care in order to prioritize caring for their grandchildren, while others attempted to maintain a balance between both responsibilities. This is clearly illustrated in the following excerpts:

“Do you understand? (…) I can’t go to the dentist. I can’t go to the podiatrist. No, because I have to be with them.”

(P1)

This excerpt illustrates how self-care—a core occupation area in the AOTA Occupational Therapy Practice Framework—becomes systematically deprioritized in favor of caregiving. The postponement of health monitoring and personal care appointments represents a significant occupational risk for older adults, with potential downstream consequences for their own health and functional capacity.

“Now we are both at a stage where we probably have more medical appointments.”

(P3)

Despite these limitations, the caregiving role is valued as essential for strengthening the emotional bond and promoting mutual well-being. One participant expressed this very clearly:

“I am fully aware of the influence that a grandparent’s affection can have on a grandchild.”

(P4)

3.2. Emotional Impact: “I Feel Fulfilled”

Assuming the caregiving role entails an intense emotional experience. The arrival of a grandchild with a disability represents a significant initial impact; however, participants’ accounts predominantly highlight positive emotions associated with caregiving, such as fulfillment, satisfaction, pride, and a sense of purpose, as reflected in the following statement:

“They give you calm, they give you joy, they are grateful for everything. They are wonderful.”

(P10)

From an occupational science perspective, the positive affect described here is consistent with the experience of engagement in a meaningful occupation: one that generates subjective well-being, a sense of competence, and emotional reciprocity. Marsack et al. [42] similarly found that grandparent caregivers attributed deep personal meaning to their role, framing it not as a burden but as a valued and identity-affirming occupation.

Active participation in grandchildren’s development and progress generates a deep sense of personal fulfillment, which participants often found difficult to verbalize but repeatedly expressed:

“They have changed the way I see life (…) taking part in Juan’s development is something impressive for me.”

(P8)

This account speaks directly to the construction of a new occupational identity. As Hansson et al. [43] define it, occupational identity is the accumulated sense of who one is and wishes to become as an occupational being. The caregiving role for a grandchild with a disability appears to reshape this identity at its core, generating a revised self-narrative centered on contribution, presence, and intergenerational connection rather than on prior leisure or retirement roles.

When there are other grandchildren, participants stated that they felt equal love for all of them; nevertheless, they acknowledged a particularly intense emotional bond with the grandchild with a disability, linked both to caregiving needs and to the relationship built over time:

“I love my five grandchildren very much (…) but when I’m not with him, I feel like something is missing.”

(P8)

This emotional intensity translates into a strong identification with the caregiving role and difficulty disengaging emotionally, even during external activities or moments of rest. At the same time, the presence of the grandchild has a regulating effect on the family’s emotional climate, providing well-being and relief in situations of conflict or distress:

“When my little girl comes, everything passes.”

(P11)

Nevertheless, participants acknowledge the emotional strain and life impact involved in this role. Even so, love for their grandchildren acts as a protective factor that enables them to sustain the emotional demands of caregiving. One grandmother’s account is particularly illustrative:

“How do you cope? (…) because I love them, they are my girls.”

(P1)

3.3. Adaptation to Change: “Until Something Happens in Your Own Home, You Are Not Interested”

The third theme describes adaptation as a progressive and situated process. Participants did not present caregiving as a role for which they were fully prepared in advance. Rather, they described learning about disability, care needs, routines, and family adjustments as the relationship with the grandchild developed and as concrete needs appeared in daily life.

“I thought the world was crashing down on me at that moment, that it could not be, that why me, why my son… but you learn, you adapt, and now I would not change it for anything.”

(P10)

“Until something happens in your own home, you are not interested.”

This adaptation involved a movement from initial uncertainty toward practical learning. Grandparents reported that knowledge about the child’s disability became meaningful when it was connected to everyday tasks such as understanding routines, anticipating difficulties, accompanying the child to appointments, communicating with parents, or responding to behavioral and developmental needs. Information was therefore not experienced as abstract knowledge but as a resource that enabled safer and more confident participation in care.

“No, honestly, I knew nothing about it until my granddaughter came into my life; I did not know what disability was, I did not know what autism was.”

(P5)

Adaptation was also expressed through acceptance and the redefinition of expectations. Participants described changes in the way they understood disability and in the way they interpreted their own role within the family. The caregiving experience led them to normalize certain routines, value small developmental achievements, and adjust their priorities to the needs of the grandchild and the family system.

“Well, we took it in our stride… I took it well from the beginning… and the thing is, every time you see that she is making a meaningful step forward, you feel a deep sense of satisfaction.”

(P9)

In occupational science terms, this process aligns with the concept of occupational adaptation: the active, ongoing process by which individuals adjust their occupational repertoire, habits, and roles in response to new demands and changed contexts. The gradual normalization of routines and redefinition of expectations described by participants reflect the emergence of a new occupational identity as a caregiving grandparent—one that integrates disability into the fabric of everyday life rather than experiencing it as a permanent disruption.

“It did change us, yes. Because we had never faced a problem of this kind before. When you see the problem in another family, you know about it, but you do not really appreciate it… Then you gradually come to terms with it, accepting that there is a problem, and you try to do everything you can to minimize it.”

(P9)

“When my little girl was born, my life changed. It turned 90 degrees. Everything changed for me. Everything. But it changed for the better.”

(P10)

“At first, I honestly felt a little scared because I did not know what the disability was about… But it is not an illness—now I feel very close to William, I know him, I understand him. For me now, it is not something to be afraid of.”

(P7)

A further component of this theme concerned the negotiation of family boundaries. Even when their involvement was intensive, participants tended to describe their role as complementary to that of the parents. Their accounts emphasized availability, support, and presence, while also recognizing the importance of not replacing parental decision-making. Thus, adaptation involved not only learning how to care for the child, but also learning how to occupy a supportive intergenerational role within the family.

“What grandparents should do when they are with their grandchildren is not to interfere in anything—simply accompany them, love them—because at that moment the parents are going through so much.”

(P4)

4. Discussion

The central contribution of this study is to demonstrate that grandparent caregiving for a grandchild with a disability is not simply an extension of family solidarity or supplementary help but constitutes a meaningful occupation in its own right—one that reorganizes time use, reconfigures occupational identity, intensifies emotional attachment, and places self-care and leisure under sustained pressure in later life. With this framing in mind, we discuss the findings in relation to existing evidence. The present study aimed to examine the experiences of grandparents in relation to their participation in caregiving tasks for grandchildren with disabilities from a qualitative and occupational perspective. The findings indicate that assuming this role has a profound impact on older adults’ time organization, emotional experience, and adaptation processes, shaping a complex caregiving trajectory that combines high demands with substantial meaning and personal satisfaction.

4.1. Caregiver Time and Occupational Reorganization

Consistent with the first theme (“we are always on call”), our findings show that grandparents describe caregiving as a state of continuous availability, beyond the objective number of hours invested or the formalization of the role. This “being on alert” experience aligns with the literature conceptualizing intergenerational care as a continuum ranging from occasional support to sustained caregiving, modulated by the child’s needs and family dynamics [11]. Qualitative studies with grandparents of children with disabilities have similarly documented patterns of constant presence (“being there”) and pragmatic adaptation to changing needs, particularly when care becomes more intensive or unpredictable [1].

From an occupational perspective, such availability translates into a reconfiguration of the occupational repertoire and of the balance among self-care, leisure, social participation, and family responsibilities. The Occupational Therapy Practice Framework emphasizes that health and well-being are sustained, in part, through a balanced and meaningful occupational pattern [8]. In research on informal caregivers, reduced occupational balance has been associated with poorer perceived health and lower well-being, reinforcing the plausibility that the time reorganization observed in our study has meaningful implications, even when experienced as valuable [21]. In this regard, our findings extend previous evidence by showing that occupational reorganization is not experienced solely as a “loss” of activities but also as a deliberate prioritization of caregiving that reshapes the meaning of everyday time. Critically, however, this subjective acceptance of occupational reorganization does not neutralize its potential health consequences. As Eklund et al. [44] demonstrate, the linkage between occupational patterns and occupational balance has direct implications for health and well-being: a pattern dominated by a single occupation—however meaningful—is structurally associated with reduced balance and a heightened risk of role overload. The present findings suggest that grandparent caregivers may be particularly vulnerable to this dynamic, given the intersection of intensive caregiving with the health demands and reduced resilience typical of later life.

Moreover, caregiving impact appears stratified by intensity and enabling conditions (e.g., geographic proximity, availability, and health), confirming the heterogeneity of the caregiving role among grandparents. In Europe, longitudinal evidence has shown that grandchild care may be associated with different health outcomes depending on intensity and that the relationship is neither linear nor universal [12,32]. Complementarily, fixed-effects analyses suggest that some positive associations observed between supplementary care and health may partly reflect health selection (healthier grandparents provide more care) [45]. Our qualitative data nuance this debate: those providing full-time care report greater strain and more restrictions, whereas those caring part-time frequently express a desire for greater presence, particularly when distance constrains involvement. Nevertheless, both profiles converge on a shared sense of responsibility and availability.

Finally, regarding the distribution of tasks, our findings support a gendered differentiation: grandmothers tend to concentrate on ongoing basic care (feeding, hygiene, dressing, and routines), whereas grandfathers more often engage in accompaniment, transportation, and play. This pattern is consistent with population-based evidence documenting gender differences in what grandparents do when providing care [32]. In custodial or childrearing contexts, assuming intensive care has also been described as reconfiguring occupational participation in later life, with practical and psychosocial implications [33]. Overall, these findings suggest that caregiving-related occupational reorganization is shaped not only by role intensity but also by gender norms and expectations that structure the everyday experience of “always being on call.”

4.2. Emotional Impact and Meaning of the Caregiving Role

The second theme (“I feel fulfilled”) indicates that, in this study, the caregiving role is narrated predominantly through positive affective registers (pride, gratification, and a sense of purpose), even while participants acknowledge the daily demands of care. This finding resonates with qualitative research describing complex emotional trajectories among grandparents of children with disabilities, in which initial distress coexists with, and gradually gives way to, processes of acceptance and “family pride” in response to the family system’s capacity to adapt [46]. Consistently, other studies have shown that many grandparents adopt strategies of emotional containment and a positive orientation to sustain the family, interpreting their contribution as a moral and affective commitment [47].

From an occupational standpoint, the sense of fulfillment appears linked to meaning-making and to the affirmation of identity derived from “being present” in the grandchild’s development, particularly when caregiving participation is perceived as valuable and necessary. This interpretation aligns with studies describing protective bonds and an active search for meaning (“striving for answers”) among grandparents of children with autism spectrum disorder as part of their lived experience [48]. Similarly, recent research in the Spanish context suggests that some grandparents do not experience caregiving primarily as a “burden” but rather as a “necessity” or relational responsibility; moreover, being unable to engage may elicit powerlessness rather than relief, underscoring the centrality of the bond in interpreting the role [49].

Nevertheless, the predominance of positive emotions should not be interpreted as an absence of psychosocial risk. Evidence indicates that sustained caregiving provision may be associated with depressive symptomatology among caregiving grandparents in certain contexts and vulnerability profiles [13]. More recent studies including grandparents as caregivers of children with disabilities report a notable prevalence of anxiety and depression and highlight the moderating role of support—particularly psychological and family support [15]. Specifically, intergenerational analyses suggest that family cohesion and contextual factors (e.g., accessibility and environmental barriers) are associated with a lower probability of depression among caregiving grandparents [15].

Taken together, these findings extend the literature by showing how the emotional dimension of caregiving can be organized around affective reciprocity and meaning without denying the coexistence of tensions and potential costs. This pattern is consistent with available syntheses emphasizing the heterogeneity of grandparents’ experiences (roles, emotional adjustments, needs, and future concerns) and the need for narrative-centered approaches to understand which conditions foster well-being, purpose, and sustained participation [19,24].

4.3. Adaptation to Change, Learning, and Coping

The third theme (“until something happens in your own home, you are not interested”) indicates that the arrival of a grandchild with a disability activates an adaptive process that often begins with emotional shock, uncertainty, and a sense of unpreparedness. The results show that this adaptation is not a single event but a progressive trajectory of learning, acceptance, and role negotiation. This trajectory is consistent with evidence syntheses on grandparents of children with disabilities, which describe a transition from initial bewilderment toward active information seeking, role redefinition, and progressive adjustment to new demands [24]. In line with this, qualitative studies in childhood disability contexts show that continued coexistence with disability facilitates a more situated understanding of the child’s needs and a more integrated acceptance through everyday learning and family readjustments [1].

A key component of this process is the need for information and practical guidance. The literature shows that grandparents of children with autism spectrum disorder report pronounced needs regarding information, caregiving strategies, and support for the nuclear family, reinforcing our interpretation that “interest” emerges when the situation becomes personally relevant and that adaptation progresses as available knowledge and perceived competence increase [26,27]. This informational dimension is not merely instrumental; in experiential terms, it functions as a resource that reduces uncertainty, restructures expectations, and enables safer participation in the child’s daily life.

Adaptation is also expressed through the negotiation of intergenerational boundaries: even when care is intensive, participants describe “being there without interfering” as a guiding norm, positioning themselves as support that complements—but does not replace—the parental role. This balance between involvement and non-intrusion has been described as a recurrent pattern among grandparents of children with disabilities, serving a protective function for family cohesion and the prevention of intergenerational conflict [1].

4.4. Implications, Limitations, and Future Research Directions

The results provide qualitative evidence on an often-invisible actor in the care of children with disabilities: grandparents. From an occupational perspective, caregiving emerges as a central occupation that reorganizes routines, priorities, and participation in other meaningful activities (leisure, self-care, and social participation), with effects that are simultaneously demanding and meaning-generating. Practically, this has several implications: (1) childhood disability services frequently focus on parents; however, our findings support the relevance of explicitly incorporating grandparents into care plans, training, and care coordination, particularly when their involvement is sustained or intensive; (2) constant availability (“always on call”) signals a risk of occupational imbalance, suggesting that occupational therapy and social work interventions may prioritize: (a) time-management strategies and role negotiation; (b) preservation of rest and leisure spaces; and (c) self-care planning and adherence to health monitoring, especially among older adults; and (3) anticipatory concern about “what will happen when they can no longer provide care” points to the need to integrate medium-term planning (support networks, formal support, respite services, and community resources) into clinical and social support.

This study should be interpreted in light of several limitations. First, its exploratory nature and sample size constrain transferability to other settings, particularly outside the geographic area studied. Second, the sample includes heterogeneity in caregiving intensity (continuous vs. partial/occasional care), which enriches variability but may introduce substantial differences in experiences that are not always directly comparable. Third, although the sampling strategy sought variation, the final sample was not balanced by gender and did not include grandparents caring for adolescents; consequently, the findings mainly reflect the experiences of grandparents involved with younger grandchildren and should not be generalized across all developmental stages. Fourth, most interviews were conducted by telephone. This modality facilitated access and reduced participant burden, but it may have limited the observation of non-verbal communication compared with face-to-face interviews. Finally, although collaborative analysis strengthens credibility, procedures such as systematic member checking or external triangulation were not incorporated and could further strengthen confirmability. In particular, systematic member checking was not conducted, partly for pragmatic reasons (geographic dispersion and timeline constraints) and partly because, within an interpretive framework, themes represent the researchers’ construction of meaning rather than factual summaries to be verified by participants. This should be considered when evaluating confirmability.

Regarding recruitment transparency: no formal record of non-participation was generated for individuals identified through indirect referral who did not take part. While this does not alter the substantive findings, it limits the ability to fully characterize potential recruitment bias. Future studies should systematically document non-participation at all stages of recruitment.

With respect to transferability, further boundaries should be noted: the geographic restriction to the Toledo–Talavera de la Reina–Madrid corridor limits applicability to other regions or countries with different family support structures and welfare systems; the gender imbalance (predominantly grandmothers) reflects the real-world distribution of caregiving but limits insight into grandfathers’ specific experiences; the absence of grandparents caring for adolescents means findings primarily reflect caregiving in early and middle childhood; and the concentration of diagnoses around ASD and Down syndrome means that the findings may not capture the full heterogeneity of disability types. Each of these boundaries points to productive directions for future research.

The findings also open several priority avenues for future research. First, extending the focus to other family members—particularly siblings of children with disabilities—would improve understanding of relational effects, attention distribution, and occupational adjustments within the household. Second, it would be important to examine the mechanisms that explain the coexistence of positive experiences (fulfillment and purpose) with high demands, by analyzing protective factors (family support, community resources and meaning attributed to care) and risk factors (intensity, caregiver health, and isolation).

5. Conclusions

This study shows that the role of grandparents in caring for grandchildren with disabilities has a significant impact on their everyday lives, particularly in relation to time organization, occupational participation, and emotional experience. Assuming this role becomes a central occupation, characterized by high availability and commitment, which transforms habitual routines and reorders daily priorities.

Despite the substantial demands associated with caregiving, the findings reveal a predominance of positive meanings, such as satisfaction, fulfillment, and strengthened emotional bonds, which contribute to grandparents’ sense of purpose. The study also identifies a progressive process of adaptation to change, marked by learning and acceptance of disability and shaped by family-related and contextual factors.

Overall, the results underscore the need to acknowledge and make visible the role of grandparents as key caregivers within the family system and to incorporate an occupational perspective into family-centered support strategies for this population.