Children's Provision of Family Caregiving: Benefit or Burden?

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• Published: 08 May 2020

Burden of caregivers of children with cognitive palsy: an intersectional assay of gender, poverty, stigma, and public policy

BMC Public Health volume 20, Article number:645 (2020) Cite this article

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Abstract

Background

Caregivers of children with cerebral palsy suffer from a substantial psychosocial burden. Yet, there is a scarcity of documentation of the various sources of burden in low- and centre-income settings.

Methods

We conducted qualitative in-depth interviews among mothers of children with cerebral palsy attending a physiotherapy facility. Nosotros purposively sampled mothers from rural and peri-urban areas in Tamil Nadu, India, till the bespeak of data saturation. We analysed the transcripts using the socio-ecological model to identify the major dimensions of psychosocial burden among these mothers.

Results

At the individual level the mothers perceived aches and pains due to the heavy physical activity of caregiving. They likewise suffered from a feeling of guilt almost the kid'due south condition. Due to the difficulty in balancing family and work, they had meaning financial burdens. They also perceived a lack of knowledge and awareness most possible options for the treatment of their child. At the interpersonal level, the mothers lacked back up from their husband and family in the procedure of caregiving. They also had to suffer the ill effects of alcoholism and domestic violence from their husbands. They had to compromise on the care they provided to the other family unit members and their children without cerebral palsy. At the community level, the mothers had no support from the community members and felt isolated from others. The mothers also reported bigotry and lack of participation in social events. Environmental stressors similar lack of inclusive public spaces, lack of options for public transport and unfriendly piece of work timings and environment were major sources of brunt. The mothers felt that the disability welfare support offered by the authorities was grossly insufficient and there was no platform for interactions with other peers and mothers suffering from a similar brunt.

Conclusion

Caregivers of children with cerebral palsy have unique burdens in a typical low- and middle-income setting including an intersection of gender norms, poverty, stigmatization and not-inclusive public policy, which need to be addressed to meliorate the quality of life of caregivers.

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Background

Cerebral palsy (CP) is ane of the commonest causes of babyhood disability in India. The condition is associated with neuromuscular spasticity, cerebral dysfunction, behavioural abnormalities, speech, visual problems and bug in feeding and gastrointestinal functions [i]. Therefore, children with CP are highly dependent on caregivers. Mothers are the near common caregivers of children with cerebral palsy. In low- and middle- income settings these mothers are ofttimes burdened with the intendance of the family, earning a livelihood also as caring for the child with CP. This puts substantial brunt and stress on the parents due to the intersection between gender norms, poverty, social stigma and caregiving for a child with a inability.

Caregiving has been shown impair the quality of life of the caregiver. Caregivers often suffer from stress and depression [ii]. The level of stress and low suffered by the caregiver is inversely proportional to their cocky-efficacy and level of social support [3].

The burden of caregiving for children with CP is a neglected phenomenon. In addition to the psychological problems described above, the parents also feel socially isolated, unable to participate in social life, stigmatized and develop conflicts in their family and gild. Besides, they also undergo physical stress including lack of sleep, musculoskeletal aches and pains, and hypertension. Therefore, this neglected phenomenon of caregiver brunt must be understood conspicuously and addressed [4].

A qualitative exploration of psychosocial stress amid caregivers of children with CP washed in India revealed that the main problems were disturbed social relationships of the caregiver, health problems, financial problems, worry most the future of the kid and a need for more than supportive services [5]. A like Iranian study showed very similar stressors and likewise, rude and unsupportive interactions with the society [6].

The dimensions of caregiver stress in a typical south Indian population are non well documented. Therefore, this study was conducted equally a qualitative exploration to understand the physical, psychosocial, fiscal, and other stressors amongst caregivers of children with CP in a typical low socio-economic south Indian context in Tamil Nadu. The specific objective was to identify the intersection between gender, poverty, social stigma and caring for a child with a disability in causing burden to the caregivers, as the intersection of these social determinants is likely to worsen the psycho-social stress of the caregivers.

Methods

This report was conducted equally a qualitative exploration with the methodological orientation of thematic content analysis. Nosotros conducted semi-structured in-depth interviews to obtain introspective, experiential, and personal data from the caregivers of children with CP. In-depth interviews are nearly suited to obtain personal and lived experiences of individuals along with their unique perspectives and opinions.

Interviewers

The first and tertiary authors conducted all the interviews, the erstwhile a male and latter a female. Both of us are practicing physiotherapists specialized in caring for children with CP. Most of the interviews were conducted past u.s.a. together. As all the respondents were mothers of children with CP, nosotros felt that having a female interviewer during the interviews volition brand the respondent more comfortable. Both of usa had brief training in qualitative interview techniques. As nosotros are long term care providers of the children with CP, we had a good rapport with the respondents before the interviews.

Theoretical framework

The main theoretical approach of this exploration was the socio-ecological model of health. Bronfenbrenner's socio-ecological model of health states that an private'south health is influenced by multiple layers [7]. Private-level influences, inter-personal relationships, social factors, organizational surroundings, and policy level determinants play a part. This model has been used to study behaviour change and the perceived health of people. We are applying this theoretical framework to sympathize the burden and stressors of caregivers of children with CP. The theoretical supposition is that the caregiver burden is influenced by the caregiver'south characteristics, interpersonal relationships, social interactions, social support and organizational structure and the policy environment.

Sampling

Participants were mothers of children with CP. We sampled them purposively from among the mothers who brought their children for therapy to a tertiary care centre. We approached them face-to-face and obtained informed consent. There was no prior conclusion of a sample size. We conducted interviewsuntil the point of data saturation, which was obtained later conducting 9 interviews. The tenth interview was conducted to confirm the data saturation. All the participants who were approached consented to exist interviewed. The respondents were from lower to lower-centre socioeconomic classes, living in rural and semi-urban areas effectually the 3rd care centre serving the community.

Setting of interviews

We conducted interviews in the tertiary care centre in a private room. None other than the interviewers and the participants were nowadays in the room during the interviews. Afterward obtaining permission, the interviews were voice recorded using a digital vox recorder.

Interviews

A full of x interviews were conducted. All the participants were women in the age range of 30 to 40 years, mothers of children with CP. The children were five boys and 5 girls between the ages of 2–10 years. A semi-structured interview checklist was used to facilitate the interviews. All-encompassing field notes were made by the interviewers during the interview. Each interview terminal for about 40 min to an 60 minutes.

Transcription and analysis

We transcribed the data by advisedly listening to the audio recording of the interviews. The transcription was carried out in the English language, translating the original interviews which we conducted in the local language Tamil. We performed a thematic content analysis. The first and terminal authors read the interview transcripts and performed open up coding of the various statements. We and then developed a coding tree. The first author used this coding tree to code the residual of the transcripts. The concluding author verified the codes and wherever there were disagreements, we resolved them by discussion and consensus. The coding was performed using a Microsoft Excel spreadsheet. Later on the first circular of coding, nosotros grouped the codes into meaningful themes. The broad themes were informed by the socio-ecological theoretical framework. We as well identified verbatim quotes from the transcripts to support the various themes.

Nosotros attempted triangulation through coding by 2 researchers and verification and discussions with the other ii researchers. The key elements of the methods are presented in the COREQ flowchart in Fig. 1.

Fig. i

Study methods as per COREQ criteria

Total size image

The written report was approved by the Institutional Ethics Committee (Man Studies) of Sri Ramaswamy Memorial Institute of Science and Applied science, Kattankulathur with Blessing No. 1505/IEC/2018, dated 25.10.2018. Written informed consent for interviews was obtained from all participants. The privacy and confidentiality of all the participants was strictly maintained.

Results

Out of the total x respondents of the in-depth interviews, all were mothers of v boys and five girls with cerebral palsy. The coding and assay were based on the socio-ecological framework. We adopted the model to analyse the diverse levels of factors that deed equally stressors for caregivers of children with developmental disabilities. We present the results here nether the various dimensions of the socio-ecological framework as shown in Table 1.

Table 1 Stressors of caregivers classified based on the socio-ecological framework

Total size table

Individual stressors

There are several individual-level characteristics of the mothers who responded to the interviews which led to stress. These private-level characteristics are typically their knowledge, awareness, concrete abilities, beliefs, emotions and feelings. We found that the caregivers had many individual characteristics and attributes which precipitated stress.

Physical stressors

The primary caregiver of a child with a developmental disability is usually the mother and the major burden of household work is also usually thrust on her. Caregivers of children with developmental disabilities tend to deport a huge burden of physical work during the process of caregiving. This includes moving the child, cleaning the child, feeding him/her, providing physical therapy and playing with the kid, etc. In improver to all this, she likewise has the work of the household and caring for other children and family unit members. The women exercise not have acceptable time to rest and recuperate. The lack of residue led to aches and pains in the trunk and this hampered their ability to provide quality treat the child. This farther led to stress.

"I get some time for myself while my child is sleeping. And at that fourth dimension also I sometimes prefer to complete all the remaining housework. Residuum is not feasible in the present state of affairs of my home" – parent of a kid with cerebral palsy

Emotional stressors

Mothers carried the emotions of guilt, arraign and worry regarding the disability of their children. The feeling of guilt is potent in mothers. They felt that information technology must exist something that they did during their pregnancy that led to this status in their kid. They likewise felt that giving nascence to a child with a developmental disability is a failure of motherhood. The mothers also had to comport the arraign that the society leveled on them.

"The society still blames the parents for the child'south status. Arraign on the parents is very mutual." – parent of a child with cerebral palsy

Mothers worried near the future of their children. Their biggest business was well-nigh the future of the child with a disability after their lifetime.

"There is no hereafter for my child. I am e'er worried about what volition happen after our fourth dimension." – parent of a child with cerebral palsy

Financial stressors

The burden of caregiving prevents mothers from participating in financially gainful jobs. Even the mothers who are working find it difficult to salve money for the future. Invariably having a child with developmental disabilities leads to a financial brunt. Many times, these fiscal burdens are borne by the caregiver lonely. If a mother manages to save some money despite all these problems, that money gets spent on emergencies.

"Planning for future saving is itself very difficult because we employ any money saved for emergency purposes" – parent of a kid with cerebral palsy

Lack of knowledge

Though all the mothers who were interviewed expressed a loftier level of motivation and awareness about caregiving for a kid with disabilities, lack of cognition about options for caregiving, support systems, and other social welfare schemes was a major contributor to stress.

Interpersonal stressors

Interpersonal relationships of the caregivers tin can act as buffers against stress. Just sometimes they may as well contribute to stress for the caregiver. Frequently caregivers report the lack of interpersonal support and help as the major stressors. Interpersonal relationships comprise of the immediate family unit including the spouse and other siblings of the child with a inability, extended family unit including parents, in-laws, and siblings of the caregivers, neighbors, and friends.

Lack of spousal support

The caregivers who were mothers of the children with disability perceived that their husbands were non-supportive. This was a cause for major stress for the caregivers. In add-on to the lack of support, the mothers also felt stressed past their husband's alcoholism. The mothers besides feel emotionally stressed past the abuse at home. Ofttimes the abuse starts subsequently the nascency of the child with a disability.

"He drinks smokes and comes home. I don't let my children virtually him when he is drunk. I lock them in a room where they will sleep at dark. Even if my married man yells at me and beats me I will not open the door." – parent of a kid with cerebral palsy.

Compromised intendance for other children

The caregivers reported having other children without cerebral palsy. They were stressed past the fact that they were unable to provide the same kind of attention and care for other children. They also felt stressed when they institute others comparison the two children.

"All say that I am wasting my time by caring for this child, and sometimes they say that I should take intendance of the second child (without cerebral palsy) properly." – parent of a kid with cerebral palsy

"I have ii children, though I don't compare the ii children everyone else compares them and talk behind my back. This makes me experience hurt and spoils my mood." – parent of a child with cerebral palsy

Lack of support past extended family

Mothers who balance work, family as well as caregiving often experience stressed across their limits. They feel the need for support from their extended family. Simply they experience that extended families do not understand the troubles of caregivers and instead blame them.

"Once in a while, we need to be dependent on others because managing family and kids is very hard. But sometimes the family unit doesn't understand near the child and speaks ill near me and my husband." – parent of a child with cerebral palsy

Community stressors

Several characteristics of the customs influence the stress in the caregiver. Community structures in urban and rural Republic of india are very different. In urban areas communities are individualistic with very footling day to twenty-four hour period interactions in neighborhoods. In rural areas communities are more than open and day to day interactions are more. Based on this the extent of community stresses volition vary. In this report, the majority of the participants are from rural areas. Therefore, the findings are representative of rural communities.

Social bigotry against the child and the family

Caregivers perceived a sense of bigotry and isolation from the community. They felt unable to participate in community events, celebrations or festivals. The caregivers were blamed for the condition of their child. They also felt that the community members spoke behind their backs about their child's condition.

" I experience very low esteem by the style people around us look at us. I confront a lot of problems while traveling past bus and interact with people. " – parent of a child with cerebral palsy

No physical back up from community members

Community members did not understand the special needs of children with CP. They did not adjust with such children and caregivers and openly blamed such parents for bringing their children in public.

"In this order, at that place are two types of people some understand the kid, and some do not understand the situation of the parents with children like ours. Sometimes the kid will go and touch them, their saliva will drop on them. They go offended by these and do non understand." – parent of a child with cerebral palsy

Ecology stressors

Several characteristics of the environment stress the caregivers. The environment has been identified as ane of the major factors that influence the wellness and wellbeing of persons with disabilities [8]. Features of the surround, especially in low- and middle-income countries like India, pose a major bulwark to the active engagement of persons with disabilities with order. The environment comprises the physical environment, the social environment and the attitudinal aspects of the environmental gild. Some of the bones needs for a mother who cares for a child with a developmental inability are inclusive spaces where she can have the child out to interact with the society, ramps and footpaths where she can take the child out, disability-friendly public transport, good attitudes of the club towards children with disabilities and also workplaces which are agreement of the needs of a caregiver of children with special needs. When these are lacking, the caregiver is put through major stress.

Lack of accessible public transport

The master environmental interaction for many of the mothers caring for children with developmental disabilities in poor and depression resource settings is travel. The caregivers mainly complained about the public transport services which were either completely inaccessible to a female parent traveling with a child with special needs or had hostile co-passengers who made it hard to travel.

"Traveling on the public motorcoach with my child is a problem. The buses are overcrowded. If I leave even 1 motorbus to have the next one, I will miss the physiotherapy appointment" – parent of a child with cerebral palsy

"When I travel with my child, frequently I do not get a seat. In the case of long journeys, I cannot eat in the eye of the journey and there are no proper restrooms for my child." – parent of a kid with cerebral palsy

Lack of flexible timings in the workplace

Mothers who balance work, family responsibilities, and caregiving role, found it extremely difficult since the workplace timings are not flexible. Considering of this many caregivers are unable to work and back up the family financially.

Health arrangement and policy stressors

Insufficient disability support by the government

The government gives a inability alimony of Rs. 1500 (USD 22) for every child with developmental disabilities. The caregivers felt that this amount is more of a token corporeality and is insufficient for providing good quality care for the child.

"The inability card provides 1500 rupees every month, but information technology'south not enough for fifty-fifty the wellness care expenses." – parent of a kid with cerebral palsy

Lack of buffers for health expenditures

Caregivers reported heavy health-related expenses, especially expenses related to traveling to a health facility for physiotherapy for the child. They felt that there were no buffers to meet these expenses. The social welfare policies of the authorities must comprehend at to the lowest degree some of these health intendance-related expenses.

"I pawn my quondam jewelry for a sudden need for money as I face many fiscal bug related to my child'south intendance. I try to manage according to the state of affairs at home and spend money. I practice non want to compromise on the care for my kid, any the financial situation maybe." – parent of a child with cerebral palsy

Lack of support groups and data support

The authorities does non organize whatsoever support groups of parents with disabilities or exercise non disseminate whatsoever data related to the welfare measures provided for such children. This is a major stressor as the caregivers exercise not know where to get and what help to seek.

Discussion

To the all-time of our knowledge, this is the first qualitative report to explore in item the dimensions of the stress of caregivers of children with developmental disabilities in the context of Tamil Nadu in south Republic of india. Nosotros identified important stressors in the socio-ecological framework including individual, family unit, community, ecology and policy domains [seven]. Many of the stressors identified in this written report are similar to ones identified elsewhere in India and the earth [5]. Some of the findings such as guilt and self-blame of the parents, alcoholism of the married man and domestic violence experienced by the caregiver, non-inclusive public spaces and public transport and poor social welfare schemes for the families, are unique to this study and contribute to the broader agreement of stress and burden among caregivers of children with developmental disabilities in this context.

Individual-level factors such as physical discomfort and pain in various parts of the body of the caregivers due to the concrete stress of caregiving accept been described past other scholars [5, nine]. Like concrete aches and pains were identified in this study too. We noticed that the parents in our report perceived guilt and tend to blame themselves for the condition of their child. Previous systematic reports of such feelings of guilt and self-blame are not available in the literature. The parents tend to blame themselves for something they did wrong during the pregnancy for the condition of the kid.

Some other of import individual level stressor was the lack of cognition amid the mothers about how all-time to intendance for their children. This has besides been previously reported [5]. The lack of knowledge can lead to a feeling of helplessness and hopelessness. Addressing this is very of import for improving the health and wellbeing of the caregiver. If the caregiver is provided adequate informational support, she can effectively care for the kid. This, volition alleviate the stress levels amid the caregiver.

At the interpersonal level, we found that not-supportive family unit members were a major reason for worsening the stress. It made the mothers treat the child lonely. This has been described in previous studies where family-centered caregiving is associated with a lesser amount of stress [10]. Lack of spousal support in caregiving has also been previously described as a major stressor [5, 11]. In our setting, alcoholism is a major problem among the men belonging to the lower socio-economic class. Alcoholism and associated domestic violence substantially increase the levels of stress.

Several studies accept highlighted the importance of social support in caregiving [5, 12]. A community that does not understand the needs of a child with disabilities and a community that looks downwards upon such children greatly worsens the stress levels amid caregivers. The mothers in our study felt discriminated against. They felt left out and isolated from society. This has also been described in previous studies [xiii].

One of the of import highlights of our written report was the emphasis on environmental factors which led to stress. The mothers we interviewed mentioned that non-inclusive public spaces and non-inclusive public send are a major impediment for them to participate actively in this society. This is a great stressor for them in social club. Not simply does this restrict their movement and social participation, but it as well places a huge financial burden on these caregivers.

Several contextual factors nowadays in this study make the findings unique and important. The domains of stress identified in this sample of women relate to mothers who are the master caregivers in most low- and middle-income settings [14]. Women, in general, have a level of vulnerability in these societies as a upshot of prevalent patriarchy in these societies. Most of the women who were interviewed were also from a rural background and lower socio-economic status. Thus, the intersection of gender, poverty, and rural background puts these women at a high level of vulnerability [xv]. This loftier level of vulnerability is further compounded past the fact that they are burdened with the job of caregiving for their child with a developmental disability. This written report highlights the important dimensions of stress in the presence of these contextual factors. This written report identified that the important stressors in this context are gender-based violence exacerbated by rampant alcoholism, overburdening of women due to care-giving role because of gender norms, fiscal burdens complicating the stress due to poverty, and non-inclusive public spaces due to poor urban and rural planning.

The findings of this study have important implications for the do of public wellness in the land. The fact that the caregivers of children with developmental disabilities most likely are highly vulnerable persons places a smashing responsibility on the public health system to provide support systems and accept measures to ensure the wellbeing of these caregivers. Establishment of caregiver support groups can act as peer support systems where the caregivers tin can exchange notes, share information, provide physical, emotional and social support to one some other. This study as well provides important information that the financial support provided by the government as a welfare mensurate to children with disabilities is perceived to exist insufficient. There is a need to revise the financial back up. The authorities must accept advisable measures to ameliorate urban and rural planning to brand public spaces inclusive. Public transport must also have special provisions for caregivers traveling with children with special needs. The provision of these facilities will help reduce caregiver stress and burden.

At that place are several limitations to this study. The interviews with the caregivers were conducted in the health facility when they brought their children for physiotherapy. Therefore, the stressors that were identified are unique to the population who tin afford and who are motivated enough to bring their children for therapy. These findings may not apply to those who cannot afford to bring their children for physiotherapy. A more than purposive sampling of those women from the customs might provide further data on stressors amid them. Even among the women who were included and interviewed in the study, it was institute that the focus of the interviews was health care for the child. This is probably considering of the setting of the interviews and the researchers who conducted the interviews, who were therapists. Themes such every bit the caregiver's human relationship with the child, the caregiver'south relationships with their family unit and the rest of the members, and other dimensions of stress that bothers the caregiver never came up in the interviews. A more comprehensive study with purposive sampling in communities and interview past non-therapist researchers may help gain a deeper understanding. Despite these limitations, the study provides valuable information on the important stressors of caregivers of children with developmental disabilities.

Conclusions

Caregivers of children with cerebral palsy have unique stressors and burdens in the due south Indian context, which are dominated by the intersection of patriarchal gender norms, poverty, stigmatization, and poor public policy. A deeper exploration amid a community-based sample of caregivers will aid sympathize these stressors meliorate for guiding public health policies to support the caregivers and improve their quality of life.

Availability of data and materials

The datasets used and/or analysed during the current report are available from the corresponding author on reasonable request. Please write to vijay.gopichandran@gmail.com

Abbreviations

COREQ:

Consolidated criteria for reporting qualitative research

CP:

Cerebral Palsy

IEC:

Institutional Ethics Committee

USD:

Usa Dollars

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Acknowledgments

Not applicable.

Funding

The authors received no funding for this inquiry projection.

Writer information

Affiliations

1. College of Physiotherapy, SRM Institute of Science and Technology, Kattankulathur, Bharat

   Yard. Vadivelan & S. Shri Sruthi

2. Department of Paediatrics, SRM Medical College Hospital and Research Institute, SRM Institute of Science and Technology, Kattankulathur, India

   P. Sekar

3. Section of Community Medicine, ESIC Medical Higher and PGIMSR, KK Nagar, Chennai, 600078, India

   Vijayaprasad Gopichandran

Contributions

KV conceptualized the report, adult the protocol and interview checklist, conducted the interviews, transcribed the data, analysed and drafted the manuscript. PS contributed to the development of protocol and interview checklist, reviewed a draft of the manuscript. SSS contributed to the development of the checklist, conducted the interviews, supported in the transcription of data and helped in the analysis of data. VG conceptualized the study, developed the protocol and interview checklist, analysed the data, triangulated the analysis, drafted the manuscript and substantially edited the manuscript. All authors approve the final submitted version of the manuscript and take personal accountability to the findings of the study.

Corresponding writer

Correspondence to Vijayaprasad Gopichandran.

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Ethics approval and consent to participate

The written report was approved past the Institutional Ethics Committee (Man Studies) of the Sri Ramaswamy Memorial Constitute of Science and Engineering, Kattankulathur with Approval No. 1505/IEC/2018, dated 25.10.2018. Written informed consent for interviews was obtained from all participants. The privacy and confidentiality of all the participants was strictly maintained.

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The authors declare that they have no competing interests.

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Vadivelan, K., Sekar, P., Sruthi, S.South. et al. Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health twenty, 645 (2020). https://doi.org/x.1186/s12889-020-08808-0

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• Received: 19 February 2020

• Accepted: 29 April 2020

• Published: 08 May 2020

• DOI : https://doi.org/10.1186/s12889-020-08808-0

Keywords

• Caregiver
• Cerebral palsy
• Psycho-social brunt
• Gender
• Poverty
• Stigma
• Public policy

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