Investigation of The Relationship Between Care Burden and Psychological Resilince of Parents with Medical Technology-Dependent Children
Abstract
Background: The care burden of parents with technology-dependent children increases and they experience emotional difficulties.
Objectives: It was aimed to examine the relationship between the burden of care and psychological resilience of parents who have children dependent on medical technology.
Methods: The research is of descriptive type. The sample of the study consisted of 100 parents. The data of the research were collected between May 2021 and December 2022. Introductory Information Form, Caregiver Burden Scale and Psychological Resilience Scale were used to collect the data.
Results: The total mean score of the caregiving burden scale of the parents participating in the study was 38.78±12.12 and the total mean score of the psychological resilience scale for adults was 123.23±18.43. It was determined that there was a significant relationship between the education level of the parents and the duration of caring for their child and the Care Burden Scale (p<0.05). It has been determined that there is a significant relationship between the duration of care for their children by the parents and the Resilience Scale for Adults.
Conclusion: As a result of this study, it was determined that there is a relationship between the care burden of parents with technology-dependent children and their psychological resilience. It is recommended to evaluate the care burden and psychological resilience levels of parents and to make projects for this purpose.
References
- Basım, H. N.,& Çetin, F. (2011). Yetişkinler için psikolojik dayanıklılık ölçeği’nin güvenilirlik ve geçerlilik çalışması. Türk Psikiyatri Dergisi, 22(2), 104-114.
- Boyden, J. Y.,Hill, D. L., Nye, R. T., Bona, K., Johnston, E. E., Hinds, P., ... & PPCRN SHARE Project Group. (2022). Pediatric palliative care parents’ distress, financial difficulty, and child symptoms. Journal of Pain and Symptom Management, 63(2), 271-282.
- Caicedo, C. (2014). Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398-407.
- Didişen, N. A., Özdemir, H. N. Ç., & Keskin, E. (2017). Teknolojiye bağımlı çocuk ve evde bakım. J Pediatr Emerg Intensive Care Med, 123-9.
- Düzkaya, D. S., Bozkurt, G., & Yakut, T. (2017). Yoğun bakımdan taburcu olan tıbbi teknolojiye bağımlı çocuklara verilen evde bakım hizmetlerinin değerlendirilmesi. Sağlık Bilimleri ve Meslekleri Dergisi, 4(3), 204-211.
- Eshaghian-dorcheh, A.,Zandi, M., Rassouli, M., &Tahmasebi, M. (2019). The lack of systematic training for health care providers, a challenge for providing pediatric palliative home care: a comparativ study. International Journal of Pediatrics, 7(5), 9481-9496.
- Fereidouni, Z.,Kamyab, A. H., Dehghan, A., Khiyali, Z., Ziapour, A., Mehedi, N., &Toghroli, R. (2021). A comparative study on the quality of life and resilience of mothers with disabled and neurotypically developing children in Iran. Heliyon, 7(6), e07285.
- Foster, C. C.,Shaunfield, S., Black, L. E., Labellarte, P. Z., &Davis, M. M. (2022). Improving support for care at home: parental needs and preferences when caring for children with medical complexity. Journal of Pediatric Health Care, 36(2), 154-164.
- Friborg, O., Hjemdal, O., Rosenvinge, J. H., & Martinussen, M. (2003). A new rating scale for adult resilience: what are the central protective resources behind healthy adjustment?. International Journal of Methods in Psychiatric Research, 12(2), 65-76.
- Gürsoy, T. R., Eyuboglu, T. S., Aslan, A. T., Pekcan, S., Buyukkaya, E. Z., Hangul, M., ... & Soysal, S. (2022). The associations between the clinical course of children with tracheostomy and their mothers’ depression, burnout, burden, and self‐esteem. Journal of Clinical Nursing, 32 (13-14), 3412-3420.
- Heaton, J., Noyes, J., Sloper, P., &Shah, R. (2003). Technology-dependent children and family life. Children, 1, 11.
- İnci, F. H. & Erdem, M. (2008). Bakım Verme Yükü Ölçeği›nin Türkçe’ye uyarlanması geçerlilik ve güvenilirligi. Atatürk Üniversitesi Hemşirelik Yüksekokulu Dergisi, 11(4), 85-95.
- Karakul, A., Kıratlı, D., Akgül, E. A., & Çelik, T. (2022). The experiences of parents of children in pediatric palliative care: A qualitativestudy. Journal of Pediatric Nursing, 67, 107-115.
- Macedo, E. C.,Silva, L. R. D., Paiva, M. S., &Ramos, M. N. P. (2015). Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Revista Latino-Americana de Enfermagem, 23, 769-777.
- Matsuzawa, A.,Arai, J., Shiroki, Y., &Hirasawa, A. (2022). Health care for children depend on medical technology and parental quality of life in Japan. Pediatrics International, 64(1), E15006.
- Park, E. Y. (2022). Parental care giving burden, depression, social support, and life satisfaction: A multigroup analysis of social support for parents of young children with brain lesions. Rehabilitation Counseling Bulletin, 65(3), 227-237.
- Patel, A. D., Arya, A., Agarwal, V., Gupta, P. K., &Agarwal, M. (2022). Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. AsianJ ournal of Psychiatry, 70, 103030.
- Prieto, V.,Rozmus, C., Cohen, E., &Lobiondo-Wood, G. (2022). Caregiver burden, caregiving satisfaction, and health-related quality of life among caregivers of children with medical complexity. Pediatric Nursing, 48 (3), 111-121.
- Sarı, H. Y., &Öztornacı, BÖ. (2016). Özel sağlık bakım gereksinimi olan çocuklar: teknolojiye bağımlı çocuklar. Türkiye Klinikleri J Pediatr Nurs-Special Topics, 2, 54-9.
- Sobotka, S. A., Lynch, E., Quinn, M. T., Awadalla, S. S., Agrawal, R. K., &Peek, M. E. (2019). Unmet respite needs of children with medical technology dependence. Clinical Pediatrics, 58(11-12), 1175-1186.
- Suzuki, K.,Hiratani, M., Mizukoshi, N., Hayashi, T., &Inagaki, M. (2018). Family resilience elements alleviate the relationship between maternal psychological distress and the severity of children’s developmental disorders. Research in Developmental Disabilities, 83, 91-98.
- Tekerek, N. Ü., Dursun, A., & Akyıldız, B. N. (2017). Çocuklarda Ev Tipi Mekanik Ventilasyon Uygulamaları: Erciyes Üniversitesi Deneyimi. Journal of the Turkish Society of IntensiveCare/Türk Yogun Bakim Dernegi Dergisi, 15(1).
- Verberne, L. M., Kars, M. C., Schouten-vanMeeteren, A. Y., van den Bergh, E. M., Bosman, D. K., Colenbrander, D. A., ... &vanDelden, J. J. (2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European Journal of Pediatrics, 178, 1075-1085.
- Weaver, M. S.,Mooney-Doyle, K., Kelly, K. P., Montgomery, K., Newman, A. R., Fortney, C. A., ... &Hinds, P. S. (2019). The benefits and burdens of pediatric palliative care and end-of-life research: A systematic review. Journal of Palliative Medicine, 22(8), 915-926.
- Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of bur-den. The Gerontologist, 20(6), 649-655.
Tıbbi Teknolojiye Bağımlı Çocuğu Olan Ebeveynlerin Bakım Yükü ve Psikolojik Dayanıklılıkları Arasındaki İlişkinin İncelenmesi
Abstract
Giriş: Tıbbi teknolojiye bağımlı çocuğu olan ebeveynlerin bakım yükü artmakta ve duygusal zorluklar yaşamaktadır.
Amaç: Bu araştırmada, tıbbi teknolojiye bağımlı çocuğu olan ebeveynlerin bakım yükü ile psikolojik dayanıklılıkları arasındaki ilişkinin incelemesi amaçlanmıştır.
Yöntem: Araştırma, tanımlayıcı tiptedir. Araştırmanın örneklemini 100 ebeveyn oluşturmuştur. Araştırmanın verileri Mayıs 2021-Aralık 2022 tarihleri arasında toplanmıştır. Verilerin toplanmasında Tanıtıcı Bilgi Formu, Bakım Verme Yükü Ölçeği ve Psikolojik Dayanıklılık Ölçeği kullanılmıştır.
Bulgular: Araştırmaya katılan ebeveynlerin bakım verme yükü ölçeği toplam puan ortalaması 38.78±12.12 ve yetişkinler için psikolojik dayanıklılık ölçeği toplam puan ortalaması 123.23±18.43’tür. Ebeveynlerin öğrenim durumu ve çocuğuna bakım verme süresi ile Bakım Yükü Ölçeği arasında anlamlı ilişki olduğu belirlenmiştir (p<0.05). Ebeveynlerin çocuğuna bakım verme süresi ile Yetişkinler için Psikolojik Dayanıklılık Ölçeği arasında anlamlı ilişki olduğu belirlenmiştir.
Sonuç: Yapılan bu çalışmanın sonucunda, teknolojiye bağımlı çocuğu olan ebeveynlerin bakım yükleri ile psikolojik dayanıklılıkları arasında ilişki olduğu belirlenmiştir. Ebeveynlerin bakım yüklerinin ve psikolojik dayanıklılık düzeylerinin değerlendirilmesi ve buna yönelik projeler yapılması önerilmektedir.
References
- Basım, H. N.,& Çetin, F. (2011). Yetişkinler için psikolojik dayanıklılık ölçeği’nin güvenilirlik ve geçerlilik çalışması. Türk Psikiyatri Dergisi, 22(2), 104-114.
- Boyden, J. Y.,Hill, D. L., Nye, R. T., Bona, K., Johnston, E. E., Hinds, P., ... & PPCRN SHARE Project Group. (2022). Pediatric palliative care parents’ distress, financial difficulty, and child symptoms. Journal of Pain and Symptom Management, 63(2), 271-282.
- Caicedo, C. (2014). Families with special needs children: family health, functioning, and care burden. Journal of the American Psychiatric Nurses Association, 20(6), 398-407.
- Didişen, N. A., Özdemir, H. N. Ç., & Keskin, E. (2017). Teknolojiye bağımlı çocuk ve evde bakım. J Pediatr Emerg Intensive Care Med, 123-9.
- Düzkaya, D. S., Bozkurt, G., & Yakut, T. (2017). Yoğun bakımdan taburcu olan tıbbi teknolojiye bağımlı çocuklara verilen evde bakım hizmetlerinin değerlendirilmesi. Sağlık Bilimleri ve Meslekleri Dergisi, 4(3), 204-211.
- Eshaghian-dorcheh, A.,Zandi, M., Rassouli, M., &Tahmasebi, M. (2019). The lack of systematic training for health care providers, a challenge for providing pediatric palliative home care: a comparativ study. International Journal of Pediatrics, 7(5), 9481-9496.
- Fereidouni, Z.,Kamyab, A. H., Dehghan, A., Khiyali, Z., Ziapour, A., Mehedi, N., &Toghroli, R. (2021). A comparative study on the quality of life and resilience of mothers with disabled and neurotypically developing children in Iran. Heliyon, 7(6), e07285.
- Foster, C. C.,Shaunfield, S., Black, L. E., Labellarte, P. Z., &Davis, M. M. (2022). Improving support for care at home: parental needs and preferences when caring for children with medical complexity. Journal of Pediatric Health Care, 36(2), 154-164.
- Friborg, O., Hjemdal, O., Rosenvinge, J. H., & Martinussen, M. (2003). A new rating scale for adult resilience: what are the central protective resources behind healthy adjustment?. International Journal of Methods in Psychiatric Research, 12(2), 65-76.
- Gürsoy, T. R., Eyuboglu, T. S., Aslan, A. T., Pekcan, S., Buyukkaya, E. Z., Hangul, M., ... & Soysal, S. (2022). The associations between the clinical course of children with tracheostomy and their mothers’ depression, burnout, burden, and self‐esteem. Journal of Clinical Nursing, 32 (13-14), 3412-3420.
- Heaton, J., Noyes, J., Sloper, P., &Shah, R. (2003). Technology-dependent children and family life. Children, 1, 11.
- İnci, F. H. & Erdem, M. (2008). Bakım Verme Yükü Ölçeği›nin Türkçe’ye uyarlanması geçerlilik ve güvenilirligi. Atatürk Üniversitesi Hemşirelik Yüksekokulu Dergisi, 11(4), 85-95.
- Karakul, A., Kıratlı, D., Akgül, E. A., & Çelik, T. (2022). The experiences of parents of children in pediatric palliative care: A qualitativestudy. Journal of Pediatric Nursing, 67, 107-115.
- Macedo, E. C.,Silva, L. R. D., Paiva, M. S., &Ramos, M. N. P. (2015). Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Revista Latino-Americana de Enfermagem, 23, 769-777.
- Matsuzawa, A.,Arai, J., Shiroki, Y., &Hirasawa, A. (2022). Health care for children depend on medical technology and parental quality of life in Japan. Pediatrics International, 64(1), E15006.
- Park, E. Y. (2022). Parental care giving burden, depression, social support, and life satisfaction: A multigroup analysis of social support for parents of young children with brain lesions. Rehabilitation Counseling Bulletin, 65(3), 227-237.
- Patel, A. D., Arya, A., Agarwal, V., Gupta, P. K., &Agarwal, M. (2022). Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder. AsianJ ournal of Psychiatry, 70, 103030.
- Prieto, V.,Rozmus, C., Cohen, E., &Lobiondo-Wood, G. (2022). Caregiver burden, caregiving satisfaction, and health-related quality of life among caregivers of children with medical complexity. Pediatric Nursing, 48 (3), 111-121.
- Sarı, H. Y., &Öztornacı, BÖ. (2016). Özel sağlık bakım gereksinimi olan çocuklar: teknolojiye bağımlı çocuklar. Türkiye Klinikleri J Pediatr Nurs-Special Topics, 2, 54-9.
- Sobotka, S. A., Lynch, E., Quinn, M. T., Awadalla, S. S., Agrawal, R. K., &Peek, M. E. (2019). Unmet respite needs of children with medical technology dependence. Clinical Pediatrics, 58(11-12), 1175-1186.
- Suzuki, K.,Hiratani, M., Mizukoshi, N., Hayashi, T., &Inagaki, M. (2018). Family resilience elements alleviate the relationship between maternal psychological distress and the severity of children’s developmental disorders. Research in Developmental Disabilities, 83, 91-98.
- Tekerek, N. Ü., Dursun, A., & Akyıldız, B. N. (2017). Çocuklarda Ev Tipi Mekanik Ventilasyon Uygulamaları: Erciyes Üniversitesi Deneyimi. Journal of the Turkish Society of IntensiveCare/Türk Yogun Bakim Dernegi Dergisi, 15(1).
- Verberne, L. M., Kars, M. C., Schouten-vanMeeteren, A. Y., van den Bergh, E. M., Bosman, D. K., Colenbrander, D. A., ... &vanDelden, J. J. (2019). Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European Journal of Pediatrics, 178, 1075-1085.
- Weaver, M. S.,Mooney-Doyle, K., Kelly, K. P., Montgomery, K., Newman, A. R., Fortney, C. A., ... &Hinds, P. S. (2019). The benefits and burdens of pediatric palliative care and end-of-life research: A systematic review. Journal of Palliative Medicine, 22(8), 915-926.
- Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: correlates of feelings of bur-den. The Gerontologist, 20(6), 649-655.
Details
| Primary Language | Turkish |
|---|---|
| Subjects | Nursing (Other) |
| Journal Section | Research Articles |
| Authors | |
| Early Pub Date | April 15, 2024 |
| Publication Date | |
| Published in Issue | Year 2024 Volume: 17 Issue: 2 |
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