Cultural Meanings and Lived Experiences of Grief Among Mothers of Children With Cerebral Palsy in Northeast Thailand

Ethical Considerations

This study was conducted in accordance with established ethical principles for research involving human participants and adhered to the Consolidated Criteria for Reporting Qualitative Research (Tong et al., 2007). Ethical approval was obtained from the Institutional Review Board of Nakhon Phanom University (Approval No. HE2868). The study underwent a full board review process due to the involvement of potentially vulnerable participants and the sensitive nature of the research topic.

Participants were informed about the study purpose, procedures, and their rights, including voluntary participation and the ability to withdraw at any time without consequences. Written informed consent was obtained prior to data collection. All data were anonymized, and identifying information was removed during transcription and analysis. Interviews were conducted with careful attention to participants’ emotional well-being, and participants were able to pause or decline to answer any questions.

Study Design

A qualitative descriptive design with interpretive elements was employed (Turale, 2020), guided by a constructivist perspective (B. Smith & Sparkes, 2020). An inductive thematic approach, as outlined by Braun and Clarke (2006), was used to explore how grief is experienced and meaningfully constructed within specific cultural and spiritual contexts among mothers caring for children with CP in Northeast Thailand.

Participants and Sampling

Participants were mothers recruited through a registry of 65 children diagnosed with CP maintained by the Nakhon Phanom Provincial Center for Special Education. This registry represented all children with CP registered at the Center at the time of data collection and served as the initial sampling frame. Eligible participants were mothers who were the primary caregivers of a child with cerebral palsy, had provided care for at least 1 year, and were able to communicate in Thai. This criterion was applied to ensure sufficient caregiving experience, particularly within extended family contexts where caregiving roles may be shared across generations. Exclusion criteria, consistent with the original study protocol, included mothers with a diagnosed mental health condition or those currently receiving treatment for psychological disorders.

A total of 34 mothers met the inclusion criteria, and none met the exclusion criteria. All eligible participants were approached for participation, and none declined. Although 34 mothers met the inclusion criteria and agreed to participate, data collection ceased at 25 interviews as thematic saturation had been reached. Purposive sampling was used to capture variation in caregiving experiences, including differences in caregiving duration, family structure, and child functional status. See Figure 1.

OPEN IN VIEWER

Figure 1.

Participant recruitment and sampling process.

Access to participants was facilitated through collaboration with the special education center and community gatekeepers. These gatekeepers, including local educators and community members familiar with the families, assisted in identifying eligible participants, coordinating initial contact, and supporting the arrangement of home visits. This collaborative approach enhanced cultural sensitivity, facilitated trust-building within the community, and supported accurate verification of children’s diagnoses, while ensuring that participation decisions remained voluntary and free from coercion.

Data collection proceeded until thematic saturation was reached, defined as the point at which no new themes or meanings emerged from the data. Saturation was determined collaboratively by the research team through ongoing, concurrent data analysis. Saturation was achieved after the 22nd interview, at which point no new codes or conceptual insights were identified, and three additional interviews were conducted to confirm the stability and redundancy of the thematic structure, resulting in a final sample of 25 participants. Participants received a modest compensation of 100 Thai Baht to acknowledge their time.

Data Collection

Data collection was conducted between December 2024 and July 2025 using semi-structured, in-depth interviews in the Northeastern Thai (Isan) dialect. Interviews were conducted by the primary researcher, a female PhD-prepared nurse educator with training in qualitative methodology and experience working with families of children with disabilities, supporting culturally sensitive communication and rapport. Reflexive awareness was maintained throughout to minimize potential influence of the researcher’s background on participants’ responses.

The interview guide was developed based on relevant literature and refined through expert review by three qualitative research specialists to ensure cultural and conceptual validity. It was designed to elicit detailed narratives of mothers’ grief experiences using open-ended and reflective prompts. Table 1 lists the outline of interview questions. Although the guide included predefined topics, it was applied flexibly, allowing participants to shape the direction and depth of discussion. Probing questions were adapted during interviews to minimize leading responses and to ensure that participants’ meanings emerged naturally from their narratives.

OPEN IN VIEWER

Table 1.

Outline of Interview Questions.

1. Can you describe your experience when you first learned about your child’s diagnosis? 2. How would you describe your life since you began caring for your child? 3. What kinds of experiences have been most meaningful or impactful for you as a caregiver? 4. Can you describe situations or moments that you have found particularly challenging? 5. How do you usually respond when you encounter difficulties in caring for your child? 6. What role, if any, do your beliefs, values, or cultural practices play in your experiences? 7. Can you describe your experiences of support from others in your caregiving journey?

Interviews explored caregiving experiences, including perceived impacts on daily life, emotional responses, spiritual beliefs, and significant or challenging moments. Each interview lasted approximately 45–60 min and was audio-recorded with participants’ consent. Audio recordings were transcribed verbatim shortly after each interview, and field notes were documented to capture contextual details and nonverbal cues.

Most interviews were conducted in participants’ homes. In some instances, family members such as children, spouses, or grandparents were present. The researcher ensured that participants were able to speak freely and minimized interruptions where possible. Occasional distractions or brief interjections occurred but did not substantially affect the depth or continuity of the interviews. Follow-up interviews were conducted with selected participants when clarification or elaboration of emerging themes was required. These follow-ups were carried out either in person or by telephone and focused on deepening interpretation and ensuring accuracy of participants’ meanings.

Translation Procedures

All interviews were transcribed verbatim in Thai and initially analyzed in the original language to preserve cultural meanings and contextual nuances. Transcripts and selected quotations were subsequently translated into English by two bilingual translators with expertise in qualitative health research. Back-translation was performed for key excerpts to ensure semantic equivalence between Thai and English versions (Brislin, 1970). Any discrepancies were discussed among the translators and research team until consensus was reached. Particular attention was given to culturally embedded concepts to maintain the integrity of meaning during translation.

Data Analysis

Data were analyzed using inductive thematic analysis (Braun & Clarke, 2006). Transcripts were read repeatedly to achieve immersion, followed by open coding to identify meaning units related to experiences of grief. Codes were iteratively grouped into categories and developed into themes reflecting shared patterns across participants. Initial coding was conducted independently by two researchers. Subsequently, all three researchers were actively involved in reviewing codes, refining categories, and developing themes through iterative discussions and consensus. Differences in interpretation were resolved collaboratively with reference to the original transcripts. Analysis was conducted primarily in Thai to preserve cultural meanings, with selected excerpts translated into English. An audit trail was maintained, including coding frameworks, analytic memos, and records of team discussions. Trustworthiness was enhanced through member checking, peer debriefing, reflexive discussions, and examination of divergent cases (Lincoln & Guba, 1985; Nowell et al., 2017).

Participant Characteristics

A total of 25 mothers participated in this study. Participants varied in age, caregiving duration, and family structure, reflecting diverse caregiving contexts in Northeast Thailand. All participants were primary caregivers of children with CP for at least 1 year. Children with CP ranged in age from 3 to 15 years. Family arrangements included both nuclear and extended systems. In several cases, caregiving occurred within extended family contexts where grandparents provided supportive roles; however, all participants were mothers who assumed primary caregiving responsibility. This variation provided a broad range of perspectives on caregiving experiences and the meaning of grief within the local cultural setting. Participant characteristics are summarized in Table 2.

OPEN IN VIEWER

Table 2.

Participant Characteristics (N = 25).

Participant ID	Age	Marital status	Family type	Occupation	Birth order	Child gender	Child age
P01	32	Married	EF	Agriculture	1	Male	4
P02	32	Divorced	EF	General laborer	1	Female	5
P03	32	Married	EF	Housewife	2	Female	5
P04	33	Married	EF	Agriculture	2	Female	5
P05	33	Divorced	EF	Agriculture	2	Female	3
P06	34	Married	NF	Housewife	2	Female	6
P07	36	Married	NF	Agriculture	2	Male	7
P08	37	Married	NF	Agriculture	1	Male	7
P09	37	Married	EF	Agriculture	2	Male	8
P10	37	Married	NF	Housewife	1	Male	9
P11	39	Married	NF	Housewife	2	Male	5
P12	41	Widowed	EF	Agriculture	3	Female	12
P13	41	Widowed	EF	Agriculture	3	Male	12
P14	42	Married	NF	Housewife	2	Male	10
P15	43	Married	EF	Agriculture	2	Male	11
P16	46	Married	NF	Agriculture	3	Male	6
P17	46	Married	NF	Agriculture	3	Male	6
P18	47	Married	NF	Agriculture	2	Male	14
P19	47	Married	NF	Agriculture	2	Male	13
P20	48	Married	EF	General laborer	2	Male	11
P21	48	Married	NF	Agriculture	2	Female	13
P22	52	Married	EF	Agriculture	3	Male	3
P23	50	Married	EF	Agriculture	2	Male	15
P24	50	Married	EF	Agriculture	2	Male	16
P25	51	Married	EF	Agriculture	2	Female	12

Note. EF = Extended Family; NF = Nuclear Family. Cultural Context Note: Xiow (a sworn friendship bond in the local dialect) refers to a culturally recognized form of lifelong friendship characterized by mutual support and enduring relational commitment. Kong Sibsi (the 14 moral rules in the local dialect) refers to a traditional moral framework guiding appropriate conduct within families and communities, emphasizing values such as respect, reciprocity, compassion, and social responsibility. Karma, a core Buddhist concept, refers to the understanding that present circumstances are shaped by past actions, providing a moral and existential framework through which individuals interpret and accept life experiences.

The analysis generated three interrelated themes that elucidate how grief was constituted and negotiated within the context of caregiving for children with CP: (1) confronting a disrupted life trajectory, (2) embodying continuous caregiving as lived loss, and (3) negotiating meaning through relational and cultural resources. Collectively, these themes demonstrate that grief extended beyond an episodic emotional response and was enacted as an ongoing, culturally mediated process shaped by caregiving practices, relational dynamics, and moral frameworks embedded within the Northeastern Thai context.

Theme 1: Confronting a Disrupted Life Trajectory

The diagnosis of CP was experienced as a critical rupture that destabilized mothers’ anticipated life trajectories and reconfigured expectations of motherhood. In this context, grief emerged as the loss of an imagined future rather than solely an immediate emotional reaction. Participants described an abrupt sense of cognitive and emotional arrest at the point of diagnosis:

When I first heard, my mind froze. I couldn’t think of anything . . . it felt like my whole world stopped. (P03)

Everything I had hoped for my child disappeared in that moment. (P11)

These accounts illustrate how grief was anchored in the collapse of future-oriented expectations and maternal identity. The diagnosis marked a decisive turning point, initiating an ongoing process of uncertainty and reinterpretation of the maternal role. Variation in initial responses was evident. Mothers with prior exposure to disability within their family or community described a more moderated and gradual adjustment. This pattern suggests that familiarity with disability shaped both the intensity and trajectory of initial grief, attenuating the immediacy of emotional disruption and enabling a more incremental process of meaning-making.

Theme 2: Embodying Continuous Caregiving as Lived Loss

Grief extended beyond the point of diagnosis and became embedded within the ongoing, embodied realities of caregiving. Participants described caregiving as physically demanding, temporally unbounded, and emotionally sustained, such that grief was enacted through everyday practices rather than experienced as discrete episodes. Participants emphasized the cumulative physical demands of caregiving tasks, particularly those involving lifting, carrying, and sustained bodily effort over time:

I wake up, my arms ache, I feel weak . . . but I still have to keep going every day. (P07)

The absence of temporal boundaries further intensified this experience, as caregiving responsibilities were continuous and without respite:

There is no break. Even when I’m tired, I cannot stop being a mother. (P15)

Taken together, these accounts demonstrate how grief was embodied through the physical and temporal conditions of caregiving. The strain described by participants reflects not only fatigue but also a deeper form of lived loss, encompassing diminished autonomy, restricted life opportunities, and the enduring weight of responsibility, alongside underlying moral and emotional tensions associated with sustaining caregiving roles. In this sense, caregiving constituted both the context and the mechanism through which grief was continuously experienced.

However, this embodiment of grief was not uniform. Some mothers described a gradual normalization of caregiving demands, integrating these routines into daily life with limited emotional expression. Others framed caregiving primarily as a moral obligation, emphasizing endurance and responsibility over the articulation of distress.

These variations indicate that while caregiving demands were consistently present, the meanings attributed to these experiences differed. Grief, therefore, was not only embodied but also interpreted through individual meaning-making processes and culturally embedded expectations of maternal responsibility.

Theme 3: Negotiating Meaning Through Relational and Cultural Resources

Mothers actively negotiated the meaning of their caregiving experiences through engagement with interpersonal relationships and culturally grounded belief systems. These resources functioned not as isolated supports but as interconnected frameworks through which grief was interpreted, managed, and, in some cases, transformed.

Support from family members, particularly husbands and grandparents, was experienced as meaningful when it reduced isolation and enabled shared caregiving responsibilities:

My husband helps when he can, and my mother stays with my child when I am tired . . . I don’t feel alone. (P09)

Within extended family contexts, such support reflected culturally normative caregiving arrangements and reinforced a sense of collective responsibility. Beyond kinship networks, participants also described meaningful emotional support grounded in culturally specific relational bonds. The concept of Xiow, or sworn friendship, emerged as a distinctive source of enduring mutual commitment and psychosocial support:

My female Xiow, a lifelong friend, always visits and encourages me, saying we share this life’s path together. That keeps me strong. (P04)

This form of relationship extends beyond conventional friendship, reflecting a culturally recognized bond characterized by emotional closeness, shared life trajectories, and an expectation of unwavering support. Within this relational framework, caregiving was not experienced solely as an individual burden but as part of a broader network of sustained interpersonal connectedness.

Support from the Nakhon Phanom Provincial Center for Special Education and special education instructors was described primarily in instrumental terms. Participants emphasized the value of practical guidance and caregiving knowledge, which enhanced confidence and competence rather than directly alleviating emotional distress:

The teacher showed me how to care for my child better . . . it made me feel more confident. (P18)

At a deeper interpretive level, participants drew upon spiritual beliefs to make sense of their experiences. Beliefs related to karma provided an existential framework through which suffering was understood and contextualized:

I believe this is our karma. I have to take care of my child as part of my duty. (P05)

Through this lens, caregiving was interpreted not as a random misfortune but as part of a broader moral and spiritual order, enabling some mothers to reframe their experiences in ways that supported acceptance and endurance. Complementing this existential understanding, the principles of Kong Sibsi (the fourteen moral rules) guided how participants responded to these circumstances in their daily lives:

The fourteen moral rules guide us to be patient and kind. I follow that every day to stay peaceful. (P15)

These moral teachings emphasized patience, compassion, and social responsibility, shaping caregiving as an ethically grounded practice rather than solely an emotionally driven experience. While karmic beliefs helped explain why suffering occurred, Kong Sibsi informed how participants enacted their roles within that reality. Engagement with Buddhist practices and interactions with monks further reinforced these interpretive processes, contributing to a sense of acceptance and inner stability for some mothers. Despite the availability of these relational and cultural resources, their effects were not uniform. Four mothers described persistent distress and an absence of meaningful solace:

People tell me to accept it, but I still feel lost . . . nothing really helps. (P21)

What distinguished these cases was not merely limited access to support, but the absence of meaningful integration of these frameworks into their personal understanding. These mothers reported difficulty connecting with relational support, limited engagement with spiritual practices, or challenges in reconciling cultural beliefs with their lived realities.

This divergence underscores that relational and cultural resources functioned as contingent rather than universal mechanisms of meaning-making. When these frameworks—including relational solidarity expressed through Xiow, existential interpretations grounded in karma, and moral guidance derived from Kong Sibsi—resonated with participants’ lived experiences, grief could be reinterpreted and integrated. When such alignment did not occur, grief remained unresolved and resistant to transformation.

These findings suggest that grief is shaped by the interplay of relational, spiritual, and moral frameworks within the local cultural context, highlighting the culturally situated nature of caregiving.