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Care Burden and Psychological Resilience of Mothers Accompanying Their Children with Chronic Illnesses Hospitalized in Pediatric Wards

Year 2024, Volume: 12 Issue: 3, 66 - 72, 29.10.2024
https://doi.org/10.21765/pprjournal.1522203

Abstract

Abstract
Background: Psychological resilience plays a pivotal role in managing the caregiving burden experienced by mothers of hospitalized young children with chronic illnesses. The resilience of these mothers is not only critical for their own mental health but also for the well-being and development of their child.
Aim: This study aimed to assess the care burden, psychological resilience, and associated factors of mothers with hospitalized children aged 0-2 years who have chronic diseases.
Materials and Methods: The participants included 134 mothers of hospitalized children. Data were gathered utilizing a personal information form, the Zarit Burden Interview, and the Brief Resilience Scale.
Results: Working mothers with a bachelor’s degree had higher Zarit Burden Interview scores than non-working mothers. Mothers of children with epilepsy and neurological diseases had higher Zarit Burden Interview scores than those with other chronic diseases. Mothers receiving instrumental and spiritual support had significantly higher Brief Resilience Scale scores.
Discussion: Among mothers who accompany their children with a chronic illness diagnosis in the hospital, those who are university graduates, employed, or have children diagnosed with epilepsy and neurological diseases are particularly at risk in terms of the burden of care and psychological resilience.
Conclusion: Physicians and especially pediatric nurses can enhance the psychological resilience of these mothers identified as a risk group in this study and alleviate their care burden by providing instrumental and moral support in the clinical setting. The support given to these accompanying mothers can contribute more significantly to the child's quality of life and care.

Ethical Statement

(iv) Ethical approval for the research was obtained from the ethics committee of the university (Approval date:1 March 2021, Decision No: 496). In addition, the hospital where the study was conducted received institutional permission, and the participants gave written and verbal consent.

Supporting Institution

No funding

Project Number

No number

Thanks

No thanks

References

  • 1. WHO. 2023. Noncommunicable diseases. https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases
  • 2. Koch KD, Jones BL. Supporting parent caregivers of children with a life-limiting illness. Children 2018;5:85.
  • 3. Shore CP, Austin JK, Dunn DW. Maternal adaptation to a child's epilepsy. Epilepsy Behav 2004;5:557-568.
  • 4. Lee MH, Matthews AK, Park C. Determinants of health-related quality of life among mothers of children with cerebral palsy. J Pediatr Nurs 2019;44:1–8.
  • 5. Toledano-Toledano F, Moral de la Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. BioPsychoSocial Med 2018;12:20
  • 6. Önder A, Gülay H. Examining the relationship between mothers' level of acceptance and their children's empathy skills. PAUEFD 2007;2:23-30.
  • 7. Cipolletta S, Marchesin V, Benini F. Family functioningis a constituent aspect of a child’s chronic illness. J Pediatr Nurs. 2015 30:e19–e28.
  • 8. Sharma N, Sharma P, Mishra TA. Burden of Care Among Mothers Having Children with Congenital Heart Diseases. JNPS 2020; 40:72-77.
  • 9. Pedrón-Giner C, Calderón C, Martínez-Costa C, Borraz Gracia S, Gómez-López L. Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition. Chİld Care Hlth Dev 2014;40: 389–397.
  • 10. Palacio GC, Krikorian A, Gómez-Romero MJ, Limonero JT. Resilience in Caregivers: A Systematic Review. Am J Hosp Palliat Care 2020; 37:648–658.
  • 11. Luthar SS, Cicchetti D, Becker B. The construct of resilience A critical evaluation and guidelines for future work. Child Dev 2000;71:543-562.
  • 12. Çöp E, Dinç GŞ, Kültür SEÇ. Relationship with Psychiatric Symptoms: A Preliminary Report Coping Styles of Mothers of Children with Chronic Diseases and Their. Türkiye Çocuk Hast Derg. 2016;10(3):170-6.
  • 13. Köse S, Arar AT, Yıldırım G. The relationship between caregiving burden and anxiety levels in parents of children diagnosed with cancer. J Educ Res Nurs 2019;16:282-287.
  • 14. Lee I, Lee EO, Kim HS, Park YS, Song M, Park YH. Concept development of family resilience: A study of Korean families with a chronically ill child. J Clin Nurs 2004;13:636-645.
  • 15. Taşçıoğlu G, Beyazıt U, Ayhan A. Examination of Caregiving Burden in Parents of Children Hospitalized for Treatment. Adnan Menderes University Journal of Health Sciences Faculty 2017;1:10-19.
  • 16. Zan H, Scharff RL. The heterogeneity in financial and time burden of caregiving to children with chronic conditions. Matern Child Health J 2015;19: 615-625.
  • 17. Zarit SH, Reever KE, Bach-Peterson J. Relatives of The Impaired Elderly Correlates of Feelings of Burden. Gerontologist 1980;20:649-655.
  • 18. İnci FH, Erdem M. Adaptation, Validity, and reliability of the caregiving burden scale into Turkish. Atatürk University Journal of Nursing School 2008;11:85-95.
  • 19. Smith BW, Dalen J, Wiggins K, Tooley E, Christopher P, Jennifer Bernard J. The brief reslience scale: Assessing the ability to bounce back. Int J Behav Med 2008;15:194–200.
  • 20. Doğan T. Adaptation of the Brief Resilience Scale into Turkish: A Validity and Reliability Study. The Journal of Happiness & Well-Being 2015;3:93-102.
  • 21. Family Caregiver Alliance (FCA). Family Caregiver Alliance Caregiver Statistics: Work and Caregiving. https://www.caregiver.org/resource/caregiver-statistics-work-and-caregiving/ accessedc Mart 9, 2019.
  • 22. Çalışır H, Karabudak SS, Karataş P, Tosun AF, Meşealan İ. Family burden and hopelessness levels of mothers with children with cerebral palsy. Dokuz Eylül University Faculty of Nursing Electronic Journal 2018;11:147-156.
  • 23. Turan M, Yayan EH. Examining the Effect of Caregiver Burden of Parents whose Child has a Metabolic Problem on the Perceived Social Support and Life Quality. AUHSJ 2021;12:445-451.
  • 24. Türe E, Yazar A, Akın F, Aydın A. Assessment of Caregiving Burden among Caregivers of Chronically Ill Children. Bozok Medical Journal 2018;8:46.
  • 25. Budak MA, Geçkil E. Determining the caregiving burden of mothers of children with chronic illness and their levels of anxiety and depression. AUHSJ. 2020;3:391-399.
  • 26. Werner H, Latal B, Buechel EV, Beck I, Landolt MA. The impact of an infant’s severe congenital heart disease on the family: a prospective cohort study. Congenit Heart Dis 2014;9:203–210.
  • 27. Alahan NA, Aylaz R, Yetiş G. The caregiving burden of parents with children having chronic illness. Annals of Health Sciences Research 2015;4:1-5.
  • 28. Kobos E, Imiela J. Factors affecting the level of burden of caregivers of children with type 1 diabetes. Appl Nurs Res 2015;28:142-149.
  • 29. Gharaibeh HF, Gharaibeh MK. Quality of life of working and non-working Jordanian mothers caring for chronically ill child and its associated factors. Heliyon 2021;7-3: e06320.
  • 30. Olagunju AT, Bioku A, Ohaeri JU, Oluwaniyi SO, Li A, Olagunju TO et al. A comparative study of perceived burden in parent caregivers of adolescents with epilepsy in a resource-restricted setting: Investigating the explanatory factors of perceived burden. E&B 2021;120:107992.
  • 31. Russell BS, Tomkunas AJ, Hutchison M, Tambling RR, Horton AL. The protective role of parent resilience on mental health and the parent–child relationship during COVID-19. Child Psychiatry Hum Dev 2022;53:183-196.
  • 32. Fossati M, Negri L, Fianco A, Cocchi MG, Molteni M, Delle Fave A. Resilience as a moderator between Objective and Subjective Burden among parents of children with ADHD. Arch Psychiatr Nurs 2020;34:53–63.
  • 33. Lindsey RA, Barry TD. Protective factors against distress for caregivers of a child with autism spectrum disorder. J Autism Dev Disord 2018;48:1092–1107.
  • 34. Wee LX, Tan PST, Chen HC. Experiences and needs of families caring for children and adolescents with chronic kidney disease: A meta-Synthesis. J Pediatr Nurs 2022;63:52–63.
  • 35. Ebrahim MT, Alothman AA. Resilience and social support as predictors of post-traumatic growth in mothers of children with autism spectrum disorder in Saudi Arabia. Res Dev Disabil 2021;113:103943.
  • 36. Yüksel H, Tanrıverdi A. Social Problems and Coping Mechanisms in Families of Children with Special Needs. Ankara University Faculty of Educational Sciences Journal of Special Education 2019;20:535-559.
  • 37. Eccleston C, Fisher E, Law E, Bartlett J, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev 2015;4:4:CD009660.
  • 38. Kaplan HB. Toward an understanding of resilience. In M. D. Glantz & J. L. Johnson (Eds.), Resilience and development. Springer, Boston, MA. 1999. pp17-83.
  • 39. Keniş-Coşkun Ö, Atabay CE, Şekeroğlu A, Akdeniz E, Kasıl B, Bozkurt G et al. The Relationship Between Caregiver Burden and Resilience and Quality of Life in a Turkish Pediatric Rehabilitation Facility. J Pediat Nurs 2020;52:e108–e113.
  • 40. Mostafavi M, Areshtanab HN, Ebrahimi H, Vahidi M, Amiri S, Norouzi S. Caregiver burden and related factors in Iranian mothers of children with attention-deficit hyperactivity disorder. Nurs Midwifery Stud 2020;9:149-56

Pediatri servislerinde kronik hastalık tanısı ile yatan çocuklarına refakat eden annelerin bakım yükü ve psikolojik dayanıklılıkları

Year 2024, Volume: 12 Issue: 3, 66 - 72, 29.10.2024
https://doi.org/10.21765/pprjournal.1522203

Abstract

Özet
Giriş: Psikolojik dayanıklılık, kronik hastalığı olan hastanede yatan küçük çocukların annelerinin yaşadığı bakım yükünü yönetmede çok önemli bir rol oynar. Bu annelerin dayanıklılığı sadece kendi ruh sağlıkları için değil, aynı zamanda çocuğun iyilik hali ve gelişimi için de kritiktir.
Amaç: Bu çalışmanın amacı, hastanede kronik hastalık nedeniyle yatan 0-2 yaş arasındaki çocuklarına refakat eden annelerin bakım yükü, psikolojik dayanıklılık durumları ve ilişkili faktörleri incelemektir.
Gereç ve Yöntemler: Katılımcılar, hastanede yatmakta olan çocukların annesini (134 kişi) içermektedir. Veriler, kişisel bilgi formu, Zarit Bakım Yükü ve Kısa Dayanıklılık Ölçeği kullanılarak toplanmıştır.
Bulgular: Çalışan ve lisans mezunu olan annelerin bakım yükü puan ortalamaları çalışmayan annelerden daha yüksek bulunmuştur. Epilepsi veya nörolojik hastalık tanısı ile izlenen çocukların annelerinin bakım yükü puan ortalamaları, çocukları diğer kronik hastalıklara sahip olan annelerden daha yüksek çıkmıştır. Araçsal ve manevi destek alan annelerin psikolojik dayanıklılıkları, bu desteği almayanlardan anlamlı olarak daha yüksek bulunmuştur.
Tartışma: Kronik hastalık tanısı ile izlenen çocuklarına hastanede refakat eden anneler arasında özellikle; lisans mezunu, çalışan, epilepsi ve nörolojik hastalık tanısı ile izlenen çocuğa sahip anneler bakım yükü ve psikolojik dayanıklılık bakımından risk grubundadır.
Sonuç: Hekimler ve özellikle de pediatri hemşireleri, bu çalışmanın sonucunda risk grubu olarak belirlenmiş annelere klinik ortamda araçsal ve manevi destek sağlayarak, annelerin psikolojik dayanıklılıklarını artırabilir ve bakım yükünü hafifletebilirler. Refakatçı annelere verilen bu destek çocuğun yaşam kalitesi ve bakımına daha fazla katkı sağlayabilirler.

Project Number

No number

References

  • 1. WHO. 2023. Noncommunicable diseases. https://www.who.int/news-room/fact-sheets/detail/noncommunicable-diseases
  • 2. Koch KD, Jones BL. Supporting parent caregivers of children with a life-limiting illness. Children 2018;5:85.
  • 3. Shore CP, Austin JK, Dunn DW. Maternal adaptation to a child's epilepsy. Epilepsy Behav 2004;5:557-568.
  • 4. Lee MH, Matthews AK, Park C. Determinants of health-related quality of life among mothers of children with cerebral palsy. J Pediatr Nurs 2019;44:1–8.
  • 5. Toledano-Toledano F, Moral de la Rubia J. Factors associated with anxiety in family caregivers of children with chronic diseases. BioPsychoSocial Med 2018;12:20
  • 6. Önder A, Gülay H. Examining the relationship between mothers' level of acceptance and their children's empathy skills. PAUEFD 2007;2:23-30.
  • 7. Cipolletta S, Marchesin V, Benini F. Family functioningis a constituent aspect of a child’s chronic illness. J Pediatr Nurs. 2015 30:e19–e28.
  • 8. Sharma N, Sharma P, Mishra TA. Burden of Care Among Mothers Having Children with Congenital Heart Diseases. JNPS 2020; 40:72-77.
  • 9. Pedrón-Giner C, Calderón C, Martínez-Costa C, Borraz Gracia S, Gómez-López L. Factors predicting distress among parents/caregivers of children with neurological disease and home enteral nutrition. Chİld Care Hlth Dev 2014;40: 389–397.
  • 10. Palacio GC, Krikorian A, Gómez-Romero MJ, Limonero JT. Resilience in Caregivers: A Systematic Review. Am J Hosp Palliat Care 2020; 37:648–658.
  • 11. Luthar SS, Cicchetti D, Becker B. The construct of resilience A critical evaluation and guidelines for future work. Child Dev 2000;71:543-562.
  • 12. Çöp E, Dinç GŞ, Kültür SEÇ. Relationship with Psychiatric Symptoms: A Preliminary Report Coping Styles of Mothers of Children with Chronic Diseases and Their. Türkiye Çocuk Hast Derg. 2016;10(3):170-6.
  • 13. Köse S, Arar AT, Yıldırım G. The relationship between caregiving burden and anxiety levels in parents of children diagnosed with cancer. J Educ Res Nurs 2019;16:282-287.
  • 14. Lee I, Lee EO, Kim HS, Park YS, Song M, Park YH. Concept development of family resilience: A study of Korean families with a chronically ill child. J Clin Nurs 2004;13:636-645.
  • 15. Taşçıoğlu G, Beyazıt U, Ayhan A. Examination of Caregiving Burden in Parents of Children Hospitalized for Treatment. Adnan Menderes University Journal of Health Sciences Faculty 2017;1:10-19.
  • 16. Zan H, Scharff RL. The heterogeneity in financial and time burden of caregiving to children with chronic conditions. Matern Child Health J 2015;19: 615-625.
  • 17. Zarit SH, Reever KE, Bach-Peterson J. Relatives of The Impaired Elderly Correlates of Feelings of Burden. Gerontologist 1980;20:649-655.
  • 18. İnci FH, Erdem M. Adaptation, Validity, and reliability of the caregiving burden scale into Turkish. Atatürk University Journal of Nursing School 2008;11:85-95.
  • 19. Smith BW, Dalen J, Wiggins K, Tooley E, Christopher P, Jennifer Bernard J. The brief reslience scale: Assessing the ability to bounce back. Int J Behav Med 2008;15:194–200.
  • 20. Doğan T. Adaptation of the Brief Resilience Scale into Turkish: A Validity and Reliability Study. The Journal of Happiness & Well-Being 2015;3:93-102.
  • 21. Family Caregiver Alliance (FCA). Family Caregiver Alliance Caregiver Statistics: Work and Caregiving. https://www.caregiver.org/resource/caregiver-statistics-work-and-caregiving/ accessedc Mart 9, 2019.
  • 22. Çalışır H, Karabudak SS, Karataş P, Tosun AF, Meşealan İ. Family burden and hopelessness levels of mothers with children with cerebral palsy. Dokuz Eylül University Faculty of Nursing Electronic Journal 2018;11:147-156.
  • 23. Turan M, Yayan EH. Examining the Effect of Caregiver Burden of Parents whose Child has a Metabolic Problem on the Perceived Social Support and Life Quality. AUHSJ 2021;12:445-451.
  • 24. Türe E, Yazar A, Akın F, Aydın A. Assessment of Caregiving Burden among Caregivers of Chronically Ill Children. Bozok Medical Journal 2018;8:46.
  • 25. Budak MA, Geçkil E. Determining the caregiving burden of mothers of children with chronic illness and their levels of anxiety and depression. AUHSJ. 2020;3:391-399.
  • 26. Werner H, Latal B, Buechel EV, Beck I, Landolt MA. The impact of an infant’s severe congenital heart disease on the family: a prospective cohort study. Congenit Heart Dis 2014;9:203–210.
  • 27. Alahan NA, Aylaz R, Yetiş G. The caregiving burden of parents with children having chronic illness. Annals of Health Sciences Research 2015;4:1-5.
  • 28. Kobos E, Imiela J. Factors affecting the level of burden of caregivers of children with type 1 diabetes. Appl Nurs Res 2015;28:142-149.
  • 29. Gharaibeh HF, Gharaibeh MK. Quality of life of working and non-working Jordanian mothers caring for chronically ill child and its associated factors. Heliyon 2021;7-3: e06320.
  • 30. Olagunju AT, Bioku A, Ohaeri JU, Oluwaniyi SO, Li A, Olagunju TO et al. A comparative study of perceived burden in parent caregivers of adolescents with epilepsy in a resource-restricted setting: Investigating the explanatory factors of perceived burden. E&B 2021;120:107992.
  • 31. Russell BS, Tomkunas AJ, Hutchison M, Tambling RR, Horton AL. The protective role of parent resilience on mental health and the parent–child relationship during COVID-19. Child Psychiatry Hum Dev 2022;53:183-196.
  • 32. Fossati M, Negri L, Fianco A, Cocchi MG, Molteni M, Delle Fave A. Resilience as a moderator between Objective and Subjective Burden among parents of children with ADHD. Arch Psychiatr Nurs 2020;34:53–63.
  • 33. Lindsey RA, Barry TD. Protective factors against distress for caregivers of a child with autism spectrum disorder. J Autism Dev Disord 2018;48:1092–1107.
  • 34. Wee LX, Tan PST, Chen HC. Experiences and needs of families caring for children and adolescents with chronic kidney disease: A meta-Synthesis. J Pediatr Nurs 2022;63:52–63.
  • 35. Ebrahim MT, Alothman AA. Resilience and social support as predictors of post-traumatic growth in mothers of children with autism spectrum disorder in Saudi Arabia. Res Dev Disabil 2021;113:103943.
  • 36. Yüksel H, Tanrıverdi A. Social Problems and Coping Mechanisms in Families of Children with Special Needs. Ankara University Faculty of Educational Sciences Journal of Special Education 2019;20:535-559.
  • 37. Eccleston C, Fisher E, Law E, Bartlett J, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev 2015;4:4:CD009660.
  • 38. Kaplan HB. Toward an understanding of resilience. In M. D. Glantz & J. L. Johnson (Eds.), Resilience and development. Springer, Boston, MA. 1999. pp17-83.
  • 39. Keniş-Coşkun Ö, Atabay CE, Şekeroğlu A, Akdeniz E, Kasıl B, Bozkurt G et al. The Relationship Between Caregiver Burden and Resilience and Quality of Life in a Turkish Pediatric Rehabilitation Facility. J Pediat Nurs 2020;52:e108–e113.
  • 40. Mostafavi M, Areshtanab HN, Ebrahimi H, Vahidi M, Amiri S, Norouzi S. Caregiver burden and related factors in Iranian mothers of children with attention-deficit hyperactivity disorder. Nurs Midwifery Stud 2020;9:149-56
There are 40 citations in total.

Details

Primary Language English
Subjects Pediatric Health and Illnesses Nursing, Health Care Administration
Journal Section Original Articles
Authors

Esra Karakaya 0000-0003-3278-4391

Songül Kamışlı 0000-0002-2709-3433

Project Number No number
Publication Date October 29, 2024
Submission Date July 25, 2024
Acceptance Date September 1, 2024
Published in Issue Year 2024 Volume: 12 Issue: 3

Cite

Vancouver Karakaya E, Kamışlı S. Care Burden and Psychological Resilience of Mothers Accompanying Their Children with Chronic Illnesses Hospitalized in Pediatric Wards. pediatr pract res. 2024;12(3):66-72.