Gaining Experience Over Time: The Family Caregivers' Perception of Patients with a Tracheostomy in Home Care

Saied Daraie, Shirin Hasanvand, Fateme Goudarzi, Maryam Rassouli, Saied Daraie, Shirin Hasanvand, Fateme Goudarzi, Maryam Rassouli

Abstract

Background: The transition of tracheostomy patients to the home poses many challenges for both the patient and the family. Identifying and understanding the experiences of family caregivers pave the road for discovering and meeting care needs. This study has been aimed to explain the experiences of family caregivers of patients with a tracheostomy about patient care at home.

Materials and methods: This qualitative study was conducted using a conventional content analysis approach from September 2018 to January 2019. Participants included nine family caregivers and one professional caregiver who were selected through purposive sampling method. The in-depth interviews were conducted at home or in health centers using field notes. Data were recorded manually and analyzed using the five-step method proposed by Granehim and Lundman.

Results: The data led to the emergence of 1591 initial codes, 23 subcategories, and 6 categories. Categories include the need for training, the need for receiving care support, care challenges, care burden, gaining experience, hope, and inner satisfaction.

Conclusions: In this study, the family caregivers faced with lots of challenges in caring patients with tracheostomy so that they were in needs of training and support from professionals. Although they got skillful in care and endure burden, they were so hopeful and satisfied with their attempts. Hence, there is a need for official nongovernmental organizations with the aim of maintaining care and protecting their families.

Keywords: Caregivers; IRAN; family; home nursing; nurses; tracheostomy.

Conflict of interest statement

Nothing to declare.

Copyright: © 2021 Iranian Journal of Nursing and Midwifery Research.

References

    1. Breneol S, Belliveau J, Cassidy C, Curran JA. Strategies to support transitions from hospital to home for children with medical complexity: A scoping review. Int J Nurs Stud. 2017;72:91–104.
    1. Twohig B, Manasia A, Bassily-Marcus A, Oropello J, Gayton M, Gaffney C, et al. Family experience survey in the surgical intensive care unit. Appl Nurs Res. 2015;28:281–4.
    1. Zhu H, Das P, Woodhouse R, Kubba H. Improving the quality of tracheostomy care. Breathe. 2014;10:286–94.
    1. Becqué YN, Rietjens JA, van Driel AG, van der Heide A, Witkamp E. Nursing interventions to support family caregivers in end-of-life care at home: A systematic narrative review. Int J Nurs Stud. 2019;97:28–39.
    1. Gong S, Wang X, Wang Y, Qu Y, Tang C, Yu Q, et al. A descriptive qualitative study of home care experiences in parents of children with tracheostomies. J Pediatr Nurs. 2019;45:7–12.
    1. Callans KM, Bleiler C, Flanagan J, Carroll DL. The transitional experience of family caring for their child with a tracheostomy. J Pediatr Nurs. 2016;31:397–403.
    1. McCormick ME, Ward E, Roberson DW, Shah RK, Stachler RJ, Brenner MJ. Life after tracheostomy: Patient and family perspectives on teaching, transitions, and multidisciplinary teams. Otolaryngol Head Neck Surg. 2015;153:914–20.
    1. Agazio JG. Family transition through the termination of private duty home care nursing. J Pediatr Nurs. 1997;12:74–84.
    1. Mylén J, Nilsson M, Berterö C. To feel strong in an unfamiliar situation; Patients' lived experiences of neurosurgical intensive care. A qualitative study. Intensive Crit Care Nurs. 2016;32:42–8.
    1. Liang Z, Choi J. Challenges for ICU survivors and their caregivers. Respir Care. 2016;61:566–8.
    1. Alaviani M, Khosravan S. Caring needs of discharged patients from medical-surgical wards of Gonabad hospitals. Nursing Journal of the Vulnerable. 2015;2:25–35.
    1. Nakarada-Kordic I, Patterson N, Wrapson J, Reay SD. A systematic review of patient and caregiver experiences with a tracheostomy. Patient. 2018;11:175–91.
    1. Sherlock ZV, Wilson JA, Exley C. Tracheostomy in the acute setting: Patient experience and information needs. J Crit Care. 2009;24:501–7.
    1. Al Humaid M, Wiechula R. The experience of adult patients who have tracheostomy tubes in situ: A systematic review. Saudi Crit Care J. 2017;1:24–42.
    1. Hartnick C, Diercks G, De Guzman V, Hartnick E, Van Cleave J, Callans K. A quality study of family-centered care coordination to improve care for children undergoing tracheostomy and the quality of life for their caregivers. Int J Pediatr Otorhinolaryngol. 2017;99:107–10.
    1. Patel MR, Zdanski CJ, Abode KA, Reilly CA, Malinzak EB, Stein JN, et al. Experience of the school-aged child with tracheostomy. Int J Pediatr Otorhinolaryngol. 2009;73:80–975.
    1. Mosazade SZ, Maleki M, Aashzadeh F, Mehrabi Y. The level of observing standard tracheostomy care and some barriers from perspective of nurses. Med Surg Nurs. 2015;4:39–46.
    1. Vatandoust S, Mohammadi N, Farahani M, Mehran A. The efficacy of education film on quality of life and satisfaction in patient with tracheostomy. J Arak Uni Med Sci. 2015;17:80–7.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24:105–12.
    1. Graneheim UH, Lindgren B-M, Lundman B. Methodological challenges in qualitative content analysis: A discussion paper. Nurse Educ Today. 2017;56:29–34.
    1. Polit DF, Beck Ch T. Essentials of Nursing Research: Appraising Evidence for Nursing Practice. 9th ed. Philadelphia: Lippincott Williams & Wiilking; 2012.
    1. Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract. 2018;24:4–120.
    1. Choi J, Lingler JH, Donahoe MP, Happ MB, Hoffman LA, Tate JA. Home discharge following critical illness: A qualitative analysis of family caregiver experience. Heart Lung. 2018;47:401–7.
    1. Ravari A, Mirzaei T, Salamizadeh A, Askari Majdabadi H. Effect of the spiritual care training on anxiety reduction in home caregivers of the elderly with Alzheimer disease. Koomesh. 2017;19:467–74.
    1. Gholami M, Mohammadi F, Fallahi M, Seyed Bagher Maddah S, Ahmadi F, Rafii F, et al. Quality of nursing care in chronic heart diseases: Concept analysis based on hybrid model. Nurs Midwifery J. 2013;11(3)
    1. Azhar AS, Zaher ZF, Abu-Ouf NM, Al-Ata J, Alsheblie STA. Determinants of successful medical education of caregivers of children with congenital heart diseases. J Saudi Heart Assoc. 2018;30:28–39.
    1. Salehi NS, Azami M, Motamedi F, Sedighi B, Ssahesmaeli A. The effect of web-based information intervention in caregiving burden in caregivers of patients with dementia. JHBMI. 2017;4:181–91.
    1. Jacobs EJ, van Steijn ME, van Pampus MG. Internet usage of women attempting pregnancy and pregnant women in the Netherlands. Sex Reprod Healthc. 2019;21:9–14.
    1. Bamari F, Madarshahian F, Barzgar B. Reviews burden of caring caregivers of patients with type II diabetes referred to diabetes clinic in the city of Zabol. J Diabetes Nurs. 2016;4:59–67.
    1. Bonacasa M, Rosa E, Camps C, Martínez-Rubio D. A translational approach to design effective intervention tools for informal caregivers of dependent cancer patients. Public Health. 2019;168:50–8.
    1. Khalatbary J, Ghorbanshiroudi S. Effectiveness of stress coping skills training with psycho-educational approach among caregiversof schizophrenic patients on family function and psychological wellbeing. Holist Nurs Midwifer. 2016;26:46–54.
    1. Crist JD, Montgomery ML, Pasvogel A, Phillips LR, Ortiz-Dowling EM. The association among knowledge of and confidence in home health care services, acculturation, and family caregivers' relationships to older adults of Mexican descent. Geriatr Nurs. 2018;39:689–95.
    1. Ullgren H, Tsitsi T, Papastavrou E, Charalambous A. How family caregivers of cancer patients manage symptoms at home: A systematic review. Int J Nurs Stud. 2018;85:68–79.
    1. Kohn J, McKeon M, Munhall D, Blanchette S, Wells S, Watters K. Standardization of pediatric tracheostomy care with “Go-bags”. Int J Pediatr Otorhinolaryngol. 2019;121:154–6.
    1. Stanley TA, Battles M, Bezruczko N, Latty C. Efficacy of simulation for caregivers of children with a tracheostomy. Clin Simul Nurs. 2019;31:9–16.
    1. Tolotti A, Bagnasco A, Catania G, Aleo G, Pagnucci N, Cadorin L, et al. The communication experience of tracheostomy patients with nurses in the intensive care unit: A phenomenological study. Intensive Crit Care Nurs. 2018;46:24–31.
    1. Farhadi A, Noroozian M, Mohammadi F, Foroughan M, Rassouli M, Sadeghmoghadam L, et al. Positive experiences of caregiving in family caregivers of older adults with dementia: A content analysis study. Iran South Med J. 2018;21:319–34.
    1. Labbé D, Rushton PW, Mortenson WB, Demers L, Miller WC. Longitudinal outcomes among family caregivers of power mobility users. Arch Phys Med Rehabil. 2019;100:656–62.
    1. Bastani F, Alijanpoor M, Malek A, Saadat Hossein S, Salehabad S, Ghezelbash S. Relationship between general health and burden in female caregivers of patients with Alzheimer disease. JSUMS. 2015;21(6):1134–43.
    1. Nemati S, Rassouli M, Baghestani AR. The spiritual challenges faced by family caregivers of patients with cancer: A qualitative study. Holist Nurs Pract. 2017;31:110–7.

Source: PubMed

3
Subscribe