The study used a phenomenological approach to construct a grounded theory (Glaser and Strauss, 1967; Creswell and Poth, 2018). This qualitative study is part of a mixed-methods research which included a quantitative phase (questionnaires) followed by a qualitative phase (interviews). The qualitative study aimed to enable in-depth understanding of the unique difficulties, coping strategies and PB factors and consequences among non-Orthodox and ultra-Orthodox Jewish mothers of children W-SND with high or low levels of PB.

The quantitative study examined the level of PB of 176 mothers of children W-SND (compared to 176 mothers of children WO-SN), and their background data were collected after conducting a pilot study to validate the research system and tools (Findling et al., 2022). The results of the first quantitative phase of the research indicated that PB of mothers of children W-SND (non-orthodox and ultra-orthodox) was significantly higher than that of mothers of children WO-SN. Following these results, in order to identify the mothers’ level of PB, the risk levels were calculated according to the suggestion of Roskam et al.’s “A step forward in the conceptualization and measurement of Parental Burnout,” (Roskam et al., 2018) as follows: the sum of the responses (range 23–161 [23 × 1 through 23 × 7]) to all the items was categorized into a five-rank scale of risk of PB: 0 = no PB (< 35), 1 = low risk (Tix and Frazier, 1998; Tarakeshwar and Pargament, 2001; Green, 2007; Broberg, 2011; Neely-Barnes et al., 2011; Pisula, 2011; Pillay et al., 2012; Ahles et al., 2016; Gonen, 2016; Singal, 2016; Tsai et al., 2016; Vanegas and Abdelrahim, 2016; Ahmed and Al-Mosawi, 2018; Fusch et al., 2018; Mitter et al., 2019; Noble and Heale, 2019; Enea and Rusu, 2020; Tsibidaki, 2022), 2 = medium risk (54–70), 3 = high risk (71–88), and 4 = has PB (89+). Following this classification, 22 mothers of children W-SND who agreed to be interviewed in the quantitative questionnaire, were invited to participate in the study [12 with low risk for PB (Nelson et al., 2014)] and ten with high risk (Bristow et al., 2018) or have PB (Masefield et al., 2020). Twelve mothers, out of these 22 mothers, expressed agreement to be interviewed in the qualitative phase of the study.

Twelve mothers of children W-SND took part in this study: six of them with high PB (three from the ultra-Orthodox sector and three from the non- Orthodox sector) and six with low PB (three from the ultra-Orthodox sector and three from the non- Orthodox sector) see Table 1. According to the literature, the minimum sample size to achieve saturation in qualitative data analysis is at least 12 respondents (Fugard and Potts, 2015; Braun and Clarke, 2019; Kegler et al., 2019). The mean age of mothers with high PB was 41.2 years (SD = 2.3) and of mothers with low PB was 40.3 years (SD = 7.5). Most of them were married (83%, n = 10) with an academic education (mothers with high BP: 83%, n = 5, with low BP: 66.7%, n = 4). Half of them worked part-time, one-third full-time, and two (with high/low burnout) were not working.

Children W-SND in this study had an ongoing chronic disability (over a year) and were treated in a child developmental center, according to a physician’s diagnosis. The sample included children with the following disabilities: communication – 44.9%, physical – 30.1%, cognitive developmental – 27.8%, visual sensory – 6.8%, auditory sensor – 5.1%, and mental – 2.8%. The children’s age range was two and a half to five years, and most of them were boys (mothers with high BP: 83.3%, n = 5, with low BP: 66.7%, n = 4). The mean age of children of mothers with high PB was 4.1 years (SD = 1.1) and of children of mothers with low PB was 4.3 years (SD = 0.6). Overall, on average, families of mothers with high PB had fewer children (M = 3.5, SD = 1.5) than mothers with low PB (M = 4.5, SD = 3.0) (Table 1).

The data were collected using a semi-structured interview guide constructed by the researchers during January–March 2022. The first author interviewed the mothers remotely via Zoom due to a lockdown during a COVID-19 peak. The duration of each interview was between 1 h and an hour and a half. The mothers were asked to describe experiences, feelings, thoughts, and behaviors related to being mothers of children W-SND. The interview guide included the following questions: Tell me about your child W-SND; Are you experiencing difficulties as a mother of a child W-SND? If so, what are they? Which emotions do you feel as a mother of a child W-SND? What do you think society expects you to feel as a mother of a child W-SND? They were also asked about the factors they thought might contribute to the development of PB: How willing are you to accept help from others to care for your child? To what extent do you initiate getting help from others for caring for your child? To what extent do you feel burned out as a mother of a child W-SND? What are the factors that can contribute to PB, in your opinion? What are the factors that may protect mothers of children W-SND from PB, in your opinion? Do you have any insights, tools, or tips for coping with PB that you can recommend to mothers who have a child W-SND?

The answers were recorded (with the mothers’ consent) and transcribed by the first author qualified in advanced qualitative research methods; then, the entire transcriptions of the interviews were read twice. The transcribed interviews were formatted as a table, which included the identification of the mothers, the questions according to the interview guide, the mothers’ answers divided into “units of meaning” (from one word to a sentence or paragraph that expresses a single idea) and comments identified by labels. The grounded theory was constructed by labeling repeated data and comparing codes and categories, i.e., the constant comparative analysis procedure (Glaser and Strauss, 1967).

Following this, the first author identified and labeled repeated findings, coded and categorized them into similar contents, and divided them into themes, groups of themes, and main categories (Fram, 2013). The third author, an expert on qualitative research methods analyzed the data independently. The combined findings were approved by the second author, who has extensive experience in conducting mixed-methods research. The three authors conducted a peer debriefing procedure to ensure the reliability and validity of the thematic construct of the findings (Lincoln and Guba, 1985). The thematic construct was also presented to two mothers who participated in the interviews (selected randomly). The three researchers discussed the classification of themes and categories until full agreement and saturation were reached, according to the Comparative Method for Themes Saturation (CoMeTS) (Constantinou et al., 2017). Both the emic perspective of the mothers (inner view) and the etic theoretical perspective (external concepts) were combined for naturalistic inquiry (Fram, 2013). For each quote, the mother’s age, sector, and level of PB are presented in brackets to maintain their anonymity (see Results section). This procedure was carried out according to the Consolidated criteria for reporting qualitative research (COREQ, Tong et al., 2007).

The validity of the qualitative findings was ensured following the guidelines of Lincoln and Guba (1985), as follows: Credibility – internal validity was confirmed using a phenomenological approach to construct a theory grounded in the field. Transferability – an elaborated description of the ultra-Orthodox and non-Orthodox Jewish mothers of children W-SND samples was provided. The dependability of the data over time should be tested via further research, as this was a preliminary study of PB among mothers of children W-SND. Confirmability – all findings were based on quotes from the mothers’ answers. Authenticity – the interviews were conducted remotely via Zoom due to lockdowns. Nevertheless, it is recommended to conduct them in the familial natural environment, as was planned initially before the COVID-19 pandemic.

Triangulation was carried out through three methods: (i) methodological triangulation – the research design was a mixed methods design (first a quantitative survey followed by qualitative semi-structured interviews); (ii) data triangulation – data were gathered twice (through the questionnaire and later from the interviews) in different spaces (questionnaires were filled out in the centers and the interviews were carried out remotely via Zoom); and (iii) investigator triangulation – the qualitative data were analyzed independently by the two researchers (the first and third authors) and validated by the second author (Fusch et al., 2018; Noble and Heale, 2019).

The study was approved by the Helsinki Committee of Meuhedet Health Service Clinics (Approval number 02290120) and by Tel-Aviv University’s Ethics Committee (Approval number 0001222-2). The researcher explained to the mothers the purpose of the interview and the importance of their participation in the study. They were also assured that they could terminate their participation in the interview at any time, without the need for explanation, and that their identities would be kept confidential. The interviews were recorded and transcribed following the mothers’ consent.

The first theme dealt with the difficulties involved in the motherhood of a child W-SND (caregiver burden, task load, self-neglect and social neglect, recognition of the gap between the child W-SND and other children of the same age, and the environment’s contradictory expectations from the mother regarding their emotions and thoughts).

Four strategies emerged from the description of how mothers of children W-SND cope with the difficulties in raising a child W-SND. These encompassed practical, spiritual, social, and emotional coping strategies.

This theme reflected the implications of PB on mothers of children W-SND and the ways to cope with these implications, in the context of personal and environmental risk factors for PB, alongside personal and environmental protective resources.

According to the mothers, they experience difficulties due to caregiver burden, such as the amount of time needed to care for their child and the required constant attention, as well as task overload. The latter involves supervising daily tasks adapted to their child’s functional condition and coordinating their many required treatments, especially since the mothers see themselves as their child’s primary caregiver. These findings are supported by the literature which describes the heavy burden that is incurred when a child’s chronic disability affects their daily functioning and creates dependence on the parent, usually the mother as the primary caregiver (Masefield et al., 2020). Regarding the task overload, the literature emphasizes that mothers are required to balance the needs of their child W-SND (treatments, reorganization of the home for accessibility) and those of their other family members and the household (housekeeping, transportation to school and extracurricular activities, going to events) (Pisula, 2011; Masefield et al., 2020).

Additional difficulties mentioned by the mothers were physical and mental self-neglect and neglect of the family and social environment. Ultra-Orthodox mothers referred mainly to neglect within the family, such as their relationship with their spouse and other children in the family, while non-Orthodox mothers also related to their neglect of social relationships outside the family, such as good friends. These differences may be due to the social norms prevailing in ultra-Orthodox society which view the family institution and its existence as a supreme value (Gonen, 2016). Thus, there is the social and personal expectation to maintain marital and family relationships while simultaneously managing the daily challenges of raising a child W-SND.

Mothers with low PB said that over time they learned ways to adapt to their situation and become less neglectful of themselves and their environment. A possible conclusion from this finding is that a condition for effective coping with the difficulties faced by mothers of a child W-SND is that PB should be treated and reduced. Another difficulty expressed by the interviewed mothers was their perception of the functional gaps between their children with W-SND and those of other children of the same age. The literature describes various aspects of the developmental gap resulting from the unique challenges a child W-SND faces. A failure to meet expectations for an improvement in the child’s development exposes the child and the parent to pain, loneliness, and social exclusion (Neely-Barnes et al., 2011; Singal, 2016).

Another difficulty mothers report stems from conflicting societal expectations about how they should feel or function. On the one hand, they are expected to be strong, behave normally and continue functioning, while on the other hand, they feel worried and frustrated about the child’s situation. Ultra-Orthodox mothers described many expressions of friends, neighbors, and community members, such as, “God gave you a special child because you are special.” They found it difficult to hear these and other similar phrases, which made them feel anger and pain. Similarly, the literature noted the social discourse that reduces the value of those with disabilities, and therefore mothers might feel emotionally overloaded. Mothers may also have a positive attitude and optimism despite their child’s severe disability, which usually is not supported by society (Green, 2007; Broberg, 2011).

The mothers described four main ways of coping with the difficulties stemming from parenting a child W-SND, i.e., practical, spiritual, social, and emotional coping. Regarding practical coping strategies, most mothers with low PB were more willing to receive help for caring for their child from their spouse or close family members, compared to mothers with high PB, who preferred taking care of the child by themselves, mainly due to feeling guilty, the perception that caring for the child is solely their role, and an inability to trust others as caregivers. This is supported by previous studies where the feeling of guilt and exclusive responsibility for the child is explained by the mother’s recognition that only she has the necessary skills and knowledge to manage the child’s condition according to the severity of the disability, and their fear that other caregivers might harm or worsen the child’s clinical condition (Ahmed and Al-Mosawi, 2018; Tsibidaki, 2022). Our findings indicate that mothers’ willingness to accept practical assistance to help with their childcare may contribute to reducing their PB.

Only ultra-Orthodox mothers described spiritual coping strategies expressed in their belief in God and prayer that gave them the strength to cope, and a feeling described as an “anchor” from a feeling of “Divine Providence” leading to a sense of hope. Thus, their perception is that God owns the responsibility (and not only the doctor) and can make miracles and bring about positive change and improvement in their child’s condition. Previous studies have pointed out the strong connections between belief in divine forces and prayer (spiritual-religious coping) as an effective coping strategy that increases mental resilience (Tix and Frazier, 1998; Ahles et al., 2016). Indeed, faith and prayer have served as a positive coping mechanism for people with chronic illness and parents of children W-SND who experience prolonged stress (Tarakeshwar and Pargament, 2001; Tsai et al., 2016). Therefore, we conclude that spiritual religious coping may be an effective resource with PB if it is accepted by the mothers’ societal culture, in this case, the ultra-Orthodox community. However, it is important to note that the relationship between religious beliefs, prayer, and coping is complex, and people who do not hold religious beliefs may use other spiritual coping strategies that are effective for them (e.g., yoga, meditation).

Regarding social coping strategies, mothers with high levels of PB prefer to cope with the burden of care on their own because they do not trust others to care for their child, and therefore avoid receiving or seeking social support. This increases the degree of stress and difficulty they experience. This is supported by Vanegas and Abdelrahim (2016) who found that parents who received less support from family and society and had limited means of communication reported more stress than those who received this support. In addition, couples with poor-quality relationships and a lack of support from each other had lower general well-being and reported feeling more frustration and anxiety (Vanegas and Abdelrahim, 2016).

Ultra-Orthodox mothers reported receiving help and support from their community. In line with the literature, the ultra-Orthodox community follows an approach toward people with disabilities in the family that includes, inter alia, moral responsibility and kindness toward them (Shaked and Bilu, 2006; Taub and Werner, 2016). However, it was found that some mothers might experience stigma and discrimination by the community, leading to a reluctance to seek help and even social isolation (Mitter et al., 2019).

A unique and interesting contribution of this study which relates to emotional coping strategies is that in addition to expressing negative emotions (frustration, sadness, anxiety, and anger) while caring for their child, the mothers also expressed positive emotions, such as pride in the child when he/she succeeds, gratitude for their relative condition, hope for a future improvement, and joy from the child’s positive strengths. However, previous research has focused mainly on negative emotions (e.g., pressure and stress) related to raising a child W-SND (Pillay et al., 2012; Enea and Rusu, 2020). Together with reporting these negative emotions, some studies have described various interventions, such as spirituality and mindfulness, which can reduce stress and enhance resilience and which may arouse positive emotions (e.g., hope) as part of an emotional coping mechanism (Lloyd and Hastings, 2009; Cachia et al., 2016).

The previous theme focused on the mothers’ descriptions of the phenomenon of PB, its consequences, and their ways of coping. It should be noted that mothers with a low level of PB described the risk factors they assumed may lead to PB. For example, personal risk factors (such as worrying about the child’s future, and frustration due to no progress in the child’s condition despite efforts) and environmental risk factors (such as lack of support from the family). In contrast, mothers with a high level of PB described actually experiencing the risk factors which they believed led to their PB. For example, they reported having pessimistic thoughts, feeling anxiety regarding their child’s expected future, and suffering from constant worries that deprive them of sleep and causes them chronic fatigue. Other studies conducted among parents of children with chronic diseases have found that parental neuroticism (an imbalance in the emotional state) (Gérain and Zech, 2018; Lebert-Charron et al., 2022) is a personality risk factor for PB. Other studies found additional personal risk factors, such as lack of emotional control (Le Vigouroux and Scola, 2018), perfectionism (Kawamoto et al., 2018; Lebert-Charron et al., 2018), and depression (Roskam et al., 2017; Lebert-Charron et al., 2018). These findings emphasize the unique risk factors of PB found in the current study among mothers of children W-SND.

As a coping resource, mothers with a high level of PB have expressed a strong desire to talk to mothers in a similar situation as an environmental protective resource. According to the literature, parents of children W-SND have unique abilities and skills to help each other and to share and compare their experiences. Hence, they can provide support that cannot be given by others who lack practical experience in coping with PB (Nevin et al., 2022).

Mothers with low PB claimed that keeping optimistic, focusing mainly on the good things (personal), and intentionally asking the environment and society for help (environmental) can significantly reduce their parental stress and thus serve as protective resources against PB. Our study found that these protective resources involved cognitive coping strategies that can be learned (learned resourcefulness) (Rosenbaum, 1990).

Research among parents in general has found that positive thinking and self-compassion related to optimism, and receiving support from the family environment and society, are possible protective resources (Le Vigouroux et al., 2017; Mikolajczak et al., 2018a,b). Therefore, health caregivers may plan programs and workshops to help mothers of children W-SND learn and practice effective coping methods with PB.

Another significant personal protective resource found in the current study was going out to work, which allows mothers to disconnect for a while from caring for their child and his/her dependence on them. Going to work may provide them with a sense of value and routine, social interactions, and financial stability that can help cope with care challenges. As previously described in the literature, a possible explanation is that work may provide a break from the demands associated with caring for a child and provide a sense of accomplishment and independence leading to positive well-being and satisfaction in life (Ginevra et al., 2018).

Finally, mothers from the ultra-Orthodox sector, regardless of their level of burnout, described a unique personal strategy for coping with PB through their belief in God, whom they perceive as a significant positive resource that protects them from PB. Faith influences how the child’s disability is perceived since ultra-Orthodox Judaism dictates an unquestioning belief in the Divine Providence which gave life to the child. Similarly, it was found that caring for a child W-SND is seen by ultra-Orthodox parents as their mission that demands strength and tools to cope and which they believe will be provided by God (Kandel, 2010).

The sample included only Jewish mothers; in future studies, it is recommended to add other cultural, religious, and ethnic groups to represent additional social and cultural societies in the population that may show different risk factors for PB. Moreover, the current study was conducted among mothers of children W-SND only, as they are considered the ‘main informal caregivers’ in non-Orthodox and ultra-Orthodox societies (Kandel, 2010; Masefield et al., 2020). Although the sample size is sufficient to achieve saturation in the analysis of the qualitative data, it is relatively small. Thus, a future study on a larger sample is recommended. Due to the increasing involvement of fathers in the care of children in some sectors and classes in Israeli society (Cahaner and Malach, 2021), it is recommended to conduct a similar study among fathers of children with special needs and also among both parents. Expanding the sample from mothers only to both parents may contribute to the planning and development of intervention programs for the whole family. It should be borne in mind that the Jewish ultra-Orthodox religion tends to conceive disabilities as God’s will. Therefore, a main difference exists between ultra-Orthodox and non-Orthodox mothers (Kandel, 2010). Finally, social desirability might have affected the mothers’ answers (Vesely and Klöckner, 2020) e.g., avoidance of reporting difficulties that may be perceived as weaknesses, or that might threaten the family’s status in their community.