Strength in silence: the journey of mothers raising children with hydrocephalus
Jazyk angličtina Země Německo Médium print-electronic
Typ dokumentu časopisecké články
PubMed
38981902
DOI
10.1007/s00381-024-06530-5
PII: 10.1007/s00381-024-06530-5
Knihovny.cz E-zdroje
- Klíčová slova
- Emotional toll, Financial strain, Healthcare challenges, Hydrocephalus, Pakistan, Social isolation, Unmet needs,
- MeSH
- dítě MeSH
- dospělí MeSH
- hydrocefalus * psychologie chirurgie MeSH
- kojenec MeSH
- kvalitativní výzkum MeSH
- lidé MeSH
- matky * psychologie MeSH
- osoby pečující o pacienty psychologie MeSH
- předškolní dítě MeSH
- psychický stres psychologie MeSH
- sociální izolace psychologie MeSH
- sociální opora MeSH
- společenské stigma MeSH
- zjišťování skupinových postojů MeSH
- Check Tag
- dítě MeSH
- dospělí MeSH
- kojenec MeSH
- lidé MeSH
- mužské pohlaví MeSH
- předškolní dítě MeSH
- ženské pohlaví MeSH
- Publikační typ
- časopisecké články MeSH
- Geografické názvy
- Pákistán MeSH
BACKGROUND: Raising a child with hydrocephalus can be very challenging, especially in low- and middle-income countries. In Pakistan, mothers being the primary caregivers for their hydrocephalic children are under tremendous stress. METHODS: This study explores the challenges faced by Pakistani mothers raising children with hydrocephalus, employing a qualitative methodology through focus group discussions comprising ten mothers of hydrocephalic babies at Tertiary Care Hospital in Pakistan. RESULTS: The findings highlight three main themes: emotional toll, social isolation, and financial strain. Mothers experience significant emotional stress due to societal stigma and a lack of support, particularly from their husbands and family. Social isolation is prevalent, as mothers fear sharing their burdens and face physical confinement due to their children's needs. Financial strain is another major issue, with high medical costs adding to their economic difficulties. CONCLUSION: The study emphasizes improved access to specialized care, awareness campaigns to reduce stigma, financial assistance, and stronger community support networks to support these mothers better. Addressing these unmet needs is crucial for empowering Pakistani mothers in their caregiving roles and improving the quality of life for their children with hydrocephalus.
Department of Neurosurgery Neurosurgery Clinic Birgunj Nepal
Khyber Medical College Peshawar Pakistan
Zobrazit více v PubMed
Rizvi S, Raza R, Anjum Q (2005) Hydrocephalus in children. J Pak Med Assoc 55(9):502–507 PubMed
Faghih Jouibari M, Baradaran N, Shams Amiri R, Nejat F, El Khashab M (2011) Huge hydrocephalus: definition, management, and complications. Childs Nerv Syst 27:95–100 PubMed DOI
Dewan MC, Rattani A, Mekary R, Glancz LJ, Yunusa I, Baticulon RE, Fieggen G, Wellons JC, Park KB, Warf BC (2018) Global hydrocephalus epidemiology and incidence: systematic review and meta-analysis. J Neurosurg 130(4):1065–1079 PubMed DOI
World Health Organization (2003) New WHA resolution to accelerate efforts on food micronutrient fortification. https://www.who.int/news/item/29-05-2023-new-wha-resolution-to-accelerate-efforts-on-food-micronutrient-fortification . 29 May 2023
Kancherla V, Botto LD, Rowe LA, Shlobin NA, Caceres A, Arynchyna-Smith A, Zimmerman K, Blount J, Kibruyisfaw Z, Ghotme KA, Karmarkar S (2022) Preventing birth defects, saving lives, and promoting health equity: an urgent call to action for universal mandatory food fortification with folic acid. Lancet Glob Health 10(7):e1053–e1057 PubMed DOI
Qadir MA, Amir S, Bano SH (2017) Prevalence and associated risk factors of congenital anomalies at a tertiary care hospital. Pakistan J Med Health Sci 11(3):942–945
Anele CO, Omon HE, Balogun SA, Ajekwu TO, Komolafe EO (2021) Hydrocephalus management challenges in a low-income country: a review article. J West Afr Coll Surg 11(3):29–34. https://doi.org/10.4103/jwas.jwas_57_2
Kurji Z, Premani ZS, Mithani Y (2016) Analysis of the health care system of Pakistan: lessons learnt and way forward. J Ayub Med Coll Abbottabad 28(3):601 PubMed
Ahmed F, Malik NI, Zia S, Akbar AS, Li X, Shahid M, Tang K (2023) Rural mothers’ beliefs and practices about diagnosis, treatment, and management of children health problems: a qualitative study in marginalized Southern Pakistan. Front Public Health 4(10):1001668 DOI
National Assembly Secretariat (34th Pakistan drops 7 places to 161st rank in Human Development Index. 9 September 2022. Pakistan’s HDI falls 2 notches to 154th position. www.thenews.com.pk . Retrieved 2022–05–09. “| Human Development Reports”. hdr.undp.org. Retrieved 2022–05–09. Session)” (PDF). p. 18. Retrieved 7 December 2016
Maghanga C. Challenges of mothers bearing children with hydrocephalus: a case study of Mombasa county, Kenya (Doctoral dissertation, Pwani University).
Neoh MJY, Airoldi L, Arshad Z, Bin Eid W, Esposito G, Dimitriou D (2022) Mental health of mothers of children with neurodevelopmental and genetic disorders in Pakistan. Behav Sci 12:161. https://doi.org/10.3390/bs12060161
Muir RT, Wang S, Warf BC (2016) Global surgery for pediatric hydrocephalus in the developing world: a review of the history, challenges, and future directions. Neurosurg Focus 41(5):E11 PubMed DOI
Gürol A, Erdem Y, Tasbasi FY (2015) The experienced problems of mothers having children with hydrocephalus: a qualitative study. Int J Caring Sci 8(2):435–442
Sukeri S, Bakar RS, Othman A, Ibrahim MI (2017) Barriers to unmet needs among mothers of children with disabilities in Kelantan, Malaysia: a qualitative study. J Taibah Univ Med Sci 12(5):424–429. https://doi.org/10.1016/j.jtumed.2017.05.002 PubMed DOI PMC
Magganga C. Challenges of mothers bearing children with hydrocephalus: a case study of Mombasa County, Kenya. [Pwani University, Doctoral dissertation].
Nakamanya S, Siu GE, Lassman R, Seeley J, Tann CJ (2015) Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study. Disabil Rehabil 37(16):1470–1476. https://doi.org/10.3109/09638288.2014.972582
Farmer JE, Marien WE, Clark MJ, Sherman A, Selva TJ (2004) Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs. J Pediatr Psychol 29(5):355–67. https://doi.org/10.1093/jpepsy/jsh039
Akçakın M, Erden G (2001) Mental symptoms in parents of children diagnosed with autism. Turkish J Child Adolesc Mental Health 8(1):2–10
Yıldırım G, Gökyıldız Ş (2004) Exploring the psychosocial challenges faced by parents who experience infertility or struggle to conceive a healthy child. J Anatolia Nurs Health Sci 7(3):74–82
Corcnan H, Noonan K, Reichman NE (2005) Mothers’ labor supply in fragile families: the role of child health. East Econ J 31(4):601–616
Lindblad BM, Holritz-Rasmussen B, Sandman PO (2007) A life enriching togetherness–meanings of informal support when being a parent of a child with disability. Scand J Caring Sci 21(2):238–246. https://doi.org/10.1111/j.1471-6712.2007.00462.x PubMed DOI
Clavering EK (2007) Enabling carers to care: processes of exclusion and support for parents of young disabled children. J Poverty Soc Justice 15(1):33–44 DOI
Buran CF, Sawin K, Grayson P, Criss S (2009) Family needs assessment in cerebral palsy clinic. J Spec Pediatr Nurs 14(2):86–93. https://doi.org/10.1111/j.1744-6155.2008.00176.x PubMed DOI
Sen E, Yurtsever S (2007) Difficulties experienced by families with disabled children. J Spec Pediatr Nurs 12(4):238–252. https://doi.org/10.1111/j.1744-6155.2007.00119.x PubMed DOI
Harris H (2008) Meeting the needs of disabled children and their families: some messages from the literature. Child Care Pract 14(4):355–369 DOI
Perrin EC, Lewkowicz C, Young MH (2000) Shared vision: concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics 105(1 Pt 3):277–285 PubMed DOI
Scotland C (2003) Nobody ever wants to play with me. Capability Scotland, Edinburgh
Powers ET (2003) Children’s health and maternal work activity: estimates under alternative disability definitions. J Human Resour 38(3):522–556 DOI
Corcnan H, Noonan K, Reichman NE (2005) Mothers’ labor supply in fragile families: the role of child health. East Econ J 31(4):601–616
Ou JJ, Shi LJ, Xun GL, Chen C, Wu RR, Luo XR, Zhang FY, Zhao JP (2015) Employment and financial burden of families with preschool children diagnosed with autism spectrum disorders in urban China: results from a descriptive study. BMC Psychiatry 22(15):3. https://doi.org/10.1186/s12888-015-0382-4 DOI