Beneficios de pertenecer a un grupo de apoyo de cuidadoras de niños con discapacidad múltiple: un estudio cualitativo

María Elena Rodríguez-Vélez; Claudia Patricia Cantillo-Medina; Alix Yaneth Perdomo-Romero

doi:10.17843/rpmesp.2024.411.13218

Authors

María Elena Rodríguez-Vélez Universidad Surcolombiana. Facultad de Salud, Programa de Enfermería. Huila, Colombia https://orcid.org/0000-0003-1071-9695
Claudia Patricia Cantillo-Medina https://orcid.org/0000-0003-0173-9619 https://orcid.org/0000-0003-0173-9619
Alix Yaneth Perdomo-Romero Universidad Surcolombiana. Facultad de Salud, Programa de Enfermería. Huila, Colombia https://orcid.org/0000-0003-1390-9718

DOI:

https://doi.org/10.17843/rpmesp.2024.411.13218

Keywords:

Self-Help Group, Disabled Children, Social Support, Community Nursing, Qualitative Research

Abstract

Objective. To explore the perceived benefits of participating in a support group of caregivers of children with multiple disabilities. Materials and methods. This was a qualitative stud with a focused ethnographic approach, conducted from October 2022 to February 2023, in which we applied convenience
sampling. We included 20 caregivers of children with multiple disabilities. Information was collected through participant observation, focus groups and semi-structured interviews. Thematic analysis was performed applying Braun and Clark’s proposals. Results. The emerging themes were: social support network: integrating, informing and helping each other; learning space: learning to take care and to take care of oneself; promoting empowerment: identifying and facing access barriers. Conclusions. We found that the support group functions as a social support network, provides information, reduces uncertainty, facilitates coping and resilience after the birth and upbringing of a child with multipledisabilities. It is a space where one learns to care for and take care of oneself and where empowerment for the defense of the rights of children with disabilities is promoted.

Downloads

Download data is not yet available.

References

Olusanya BO, Boo NY, Nair MKC, Samms-Vaughan ME, Hadders-Algra M, Wright SM, et al. Accelerating progress on early childhood development for children under 5 years with disabilities by 2030. Lancet Glob Health. 2022;10:e438–44. doi: 10.1016/S2214-109X(21)00488-5.

N’Dri KM, Yaya I, Zigoli R, Endemel Ayabakan F, Ipou SY, Lambert Moke B. Impact du polyhandicap de l’enfant sur les familles à Abidjan. Sante Publique (Paris) 2018; 30(1):135–41. doi: 10.3917/spub.181.0135.

World health Organization. Disability 2023. https://www.who.int/newsroom/fact-sheets/detail/disability-and-health.

Pan American Health Organization. 57th Directing Council 71st Session of the regional committee of who for the americas. Washington, D.C: 2019.

Kuper H, Heydt P. The Missing Billion. London: 2019.

Cubillos Alzate JC, Perea Caro SAlberto. Boletines poblacionales: Personas con Discapacidad Diciembre 2020. Bogotá D.C: 2020.

United Nations Children’s Fund. Seen, Counted, Included. New York: 2021.

Bright T, Wallace S, Kuper H. A Systematic Review of Access to Rehabilitation for People with Disabilities in Low- and Middle-Income Countries. Int J Environ Res Public Health. 2018;15(10):2165. doi: 10.3390/IJERPH15102165.

Ministerio de Salud y Protección Social. Lineamientos generales para la implementación de la Política Pública Nacional de Discapacidad e Inclusión Social en entidades territoriales 2013 – 2022. Bogotá D.C: 2022.

Batista Conceição dos Santos D, Vázquez-Ramos V, da Costa Cunha Oliveira C, López-Arellano O. Accesibilidad en salud: revisión sobre niños y niñas con discapacidad en Brasil-Perú-Colombia. Rev Latinoam Cienc Soc Niñez Juv. 2019;17(2):1–20. doi: 10.11600/1692715x.17206.

Zuurmond M, Nyante G, Baltussen M, Seeley J, Abanga J, Shakespeare T, et al. A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers. Child Care Health Dev. 2019;45(1):45–53. doi: 10.1111/cch.12618.

Farhadi A, Bahreini M, Moradi A, Mirzaei K, Nemati R. The predictive role of coping styles and sense of coherence in the post-traumatic growth of mothers with disabled children: a cross-sectional study. BMC Psychiatry. 2022;22(1):708. doi: 10.1186/s12888-022-04357-5.

Freitas PSS, Soares GB, Mocelin HJS, Lamonato LCXL, Sales CMM, Linde‐Arias AR, et al. How do mothers feel? Life with children with congenital Zika syndrome. Int J Gynecol Obstet. 2020;148:20–8. doi: 10.1002/ijgo.13044.

Marquis SM, McGrail K, Hayes M. Mental health of parents of children with a developmental disability in British Columbia, Canada. J Epidemiol Community Health. 2020;74(2):173–8. doi: 10.1136/jech-2018-211698.

Asa GA, Fauk NK, Ward PR, Mwanri L. The psychosocial and economic impacts on female caregivers and families caring for children with a disability in Belu District, Indonesia. PLoS One. 2020;15(11):e0240921. doi: 10.1371/journal.pone.0240921.

Bourke-Taylor HM, Joyce KS, Grzegorczyn S, Tirlea L. Profile of Mothers of Children with a Disability Who Seek Support for Mental Health and Wellbeing. J Autism Dev Disord. 2022;52(9):3800–13. doi: 10.1007/s10803-021-05260-w.

Lovell B, Elder GJ, Wetherell MA. Sleep disturbances and physical health problems in caregivers of children with ASD. Res Dev Disabil.

;113:103932. doi: 10.1016/j.ridd.2021.103932.

Yoosefi lebni J, Ziapour A, Khosravi B, Rahimi khalifeh kandi Z. Lived experience of mothers of children with disabilities: a qualitative study of Iran. J Public Health (Berl) 2021;29:1173–9.doi: 10.1007/s10389-020-01215-0.

Laza-Vásquez C, Gea-Sánchez M, Briones-Vozmediano E. Qualitative evaluation of a support group for women with children with Zika congenital syndrome in Southern Colombia. Disabil Rehabil 2022;44(20):6009–16. doi: 10.1080/09638288.2021.1955308.

Williams NA, Villachan-Lyra P, Hatton-Bowers H, Marvin C, Chaves E, Hollist C, et al. Family-Centered Practices and Caregiver Mental Health in a Developmental Intervention for Young Children With Congenital Zika Syndrome. Infants Young Child 2023;36(1):21–36. doi: 10.1097/IYC.0000000000000230.

Ministerio de Salud y Protección Social. Lineamientos Nacionales De Rehabilitación Basada En La Comunidad - RBC . Bogotá D.C: 2014.

Dembo RS, Huntington N, Mitra M, Rudolph AE, Lachman ME, Mailick MR. Social network typology and health among parents of children with developmental disabilities: Results from a national study of midlife adults. Soc Sci Med. 2022;292:114623. doi: 10.1016/j.socscimed.2021.114623.

Rashid M, Caine V, Goez H. The Encounters and Challenges of Ethnography as a Methodology in Health Research. doi: 10.1177/1609406915621421.

Hammersley M, Atkinson P. Ethnography: Principles in Practice. Taylor & Francis; 2019.

Etikan I. Comparison of Convenience Sampling and Purposive Sampling. American Journal of Theoretical and Applied Statistics. 2016;5(1):1. doi: 10.11648/j.ajtas.20160501.11.

Tenny S, Brannan JM, Brannan GD. Qualitative Study. StatPearls (Internet); 2024.

Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Health. 2019;11(4):589–97. doi: 10.1080/2159676X.2019.1628806.

Kenny T, Bogart K, Freedman A, Garthwaite C, Henley S, Bolz-Johnson M, et al. The importance of psychological support for parents and caregivers of children with a rare disease at diagnosis. Rare Dis Orphan Drugs J. 2022;2:7. doi: 10.20517/rdodj.2022.04.

Joo JH, Bone L, Forte J, Kirley E, Lynch T, Aboumatar H. The benefits and challenges of established peer support programmes for patients, informal caregivers, and healthcare providers. Fam Pract 2022;39(5):903-912. doi: 10.1093/fampra/cmac004.

Iacob CI, Avram E, Cojocaru D, Podina IR. Resilience in Familial Caregivers of Children with Developmental Disabilities: A Meta-analysis. J Autism Dev Disord. 2020;50(11):4053–68. doi: 10.1007/S10803-020-04473-9.

Klein O, Walker C, Aumann K, Anjos K, Terry J. Peer support groups for parent-carers of children with attention deficit hyperactivity disorder: the importance of solidarity as care. Disabil Soc. 2022;34(9-10):1445–61. doi: 10.1080/09687599.2019.1584090.

Mohamed IN, Elseed MA. Utility of WhatsApp in healthcare provision and sharing of medical information with caregivers of children

with neurodisabilties: experience from Sudan. Sudan J Paediatr. 2021;21(1):48-52. doi: 10.24911/SJP.106-1596913564.

Smythe T, Matos M, Reis J, Duttine A, Ferrite S, Kuper H. Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil. PLoS One. 2020;15(9):e0238850. doi: 10.1371/journal.pone.0238850.

Fothergill-Misbah N, Moffatt S, Mwithiga H, Hampshire K, Walker R. The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy. Glob Public Health. 2022;17:1773–83. doi: 10.1080/17441692.2021.1954227.

Lamba N, Van Tonder A, Shrivastava A, Raghavan A. Exploring challenges and support structures of mothers with children with Autism Spectrum Disorder in the United Arab Emirates. Res Dev Disabil. 2022;120:104138. doi: 10.1016/J.RIDD.2021.104138.

Chafouleas SM, Iovino EA, Koriakin TA. Caregivers of Children with Developmental Disabilities: Exploring Perceptions of Health-Promoting Self-Care. J Dev Phys Disabil. 2020;32:893–913. doi: 10.1007/S10882-019-09724-X.

Leyva-López A, Rivera-Rivera L, Márquez-Caraveo ME, Toledano-Toledano F, Saldaña-Medina C, Chavarría-Guzmán K, et al.

Estudio de la calidad de vida en cuidadores familiares de personas con discapacidad intelectual. Salud Publica Mex. 2022;64(4):397–405.

doi: 10.21149/13325.

Bunning K, Gona JK, Newton CR, Andrews F, Blazey C, Ruddock H, et al. Empowering self-help groups for caregivers of children with

disabilities in Kilifi, Kenya: Impacts and their underlying mechanisms. PLoS One. 2020;15(3):e0229851. doi: 10.1371/journal.pone.0229851.