Research Article
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Palliative care experiences of the patient family

Year 2019, Volume: 44 Issue: Supplement 1, 358 - 365, 29.12.2019
https://doi.org/10.17826/cumj.559077

Abstract

Purpose: In order to provide patient-centred and high-quality palliative care services, it is crucial to acknowledge the perspectives and experiences of patients and their families; yet, there are not adequate number of studies about this subject. The aim of this study is to identify the perceptions of patient families of palliative care and to determine the challenges they have encountered based on their experience in the palliative care service.  

Materials and Methods: Qualitative and semi-structured interviews were conducted with 21 patient relatives of patients in the palliative care service. Content analysis method was used for the analysis of qualitative data. Giorgi’s four-step qualitative analysis method was used in qualitative data analysis process. 

Results: It has been determined that patient relatives who had had no prior knowledge on palliative care perceived palliative care services as “the place in which patient care is taught”, “a fundamentally crucial assistance service”, “a service which has recently been introduced to public knowledge and which must be proliferated”. 

Conclusion: Providing care services for end-of-life patients might be burdensome for caregivers. Therefore, the expectations and attitudes of patient families and the difficulties they experience in the palliative care process might provide beneficial insight to inform policy decisions in palliative care interventions. 


References

  • 1. Collins A, McLachlan SA and Philip J. Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers. Palliative medicine. 2017; 31: 825-32.
  • 2. Boersma I, Jones J, Coughlan C, et al. Palliative Care and Parkinson's Disease: Caregiver Perspectives. Journal of palliative medicine. 2017; 20: 930-8.
  • 3. Sampson C, Finlay I, Byrne A, Snow V and Nelson A. The practice of palliative care from the perspective of patients and carers. BMJ supportive & palliative care. 2014; 4: 291-8.
  • 4. Ciemins EL, Brant J, Kersten D, Mullette E and Dickerson D. A qualitative analysis of patient and family perspectives of palliative care. Journal of palliative medicine. 2015; 18: 282-5.
  • 5. Aoun S, Slatyer S, Deas K and Nekolaichuk C. Family Caregiver Participation in Palliative Care Research: Challenging the Myth. Journal of pain and symptom management. 2017; 53: 851-61.
  • 6. Ahmed N, Bestall J, Ahmedzai SH, Payne S, Clark D and Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative medicine. 2004; 18: 525-42.
  • 7. Hannon B, Swami N, Rodin G, Pope A and Zimmermann C. Experiences of patients and caregivers with early palliative care: A qualitative study. Palliative medicine. 2017; 31: 72-81.
  • 8. McDonald JC, Swami N, Hannon B, et al. Quality of life and satisfaction with care in caregivers of patients with advanced cancer: Results from a trial of early palliative care. Journal of Clinical Oncology. 2015; 33: 9513-.
  • 9. Giorgi A. Sketch of a psychological phenomenological method. Phenomenology and psychological research. 1985: 8-22.
  • 10. Creswell JW. Research Desing: Qualitative Quantitativeand Mixed Methods Approaches Thousand Oaks. California, SAGE2014.
  • 11. Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne. 2016; 188: E217-27.
  • 12. Benini F, Fabris M, Pace DS, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Annali dell'Istituto superiore di sanita. 2011; 47: 253-9.
  • 13. Fox S, Cashell A, Kernohan WG, et al. Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview. Palliative medicine. 2017; 31: 634-41.
  • 14. Maloney C, Lyons KD, Li Z, Hegel M, Ahles TA and Bakitas M. Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens. Palliative medicine. 2013; 27: 375-83.
  • 15. Ventura AD, Burney S, Brooker J, Fletcher J and Ricciardelli L. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliative medicine. 2014; 28: 391-402.
  • 16. Veloso VI and Tripodoro VA. Caregivers burden in palliative care patients: a problem to tackle. Current opinion in supportive and palliative care. 2016; 10: 330-5.
  • 17. Naoki Y, Matsuda Y, Maeda I, et al. Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home. Palliative & supportive care. 2018; 16: 260-8.
  • 18. Costa-Requena G, Espinosa Val MC and Cristofol R. Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliative & supportive care. 2015; 13: 583-9.
  • 19. Hughes MT and Smith TJ. The growth of palliative care in the United States. Annual review of public health. 2014; 35: 459-75.
  • 20. Spilsbury K and Rosenwax L. Community-based specialist palliative care is associated with reduced hospital costs for people with non-cancer conditions during the last year of life. BMC palliative care. 2017; 16: 68.
  • 21. Smith S, Brick A, O'Hara S and Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliative medicine. 2014; 28: 130-50.
  • 22. Lee JE, Shin DW, Cho J, et al. Caregiver burden, patients' self-perceived burden, and preference for palliative care among cancer patients and caregivers. Psycho-oncology. 2015; 24: 1545-51.

Hasta ailesinin palyatif bakım deneyimleri

Year 2019, Volume: 44 Issue: Supplement 1, 358 - 365, 29.12.2019
https://doi.org/10.17826/cumj.559077

Abstract

Amaç: Hasta merkezli ve kaliteli palyatif bakım hizmetleri sunmak için, hastaların ve ailelerinin bakış açılarının ve deneyimlerinin bilinmesi büyük öneme sahiptir; ama ne yazık ki bu konuda fazla çalışma bulunmamaktadır. Bu çalışmanın amacı; hasta yakınlarının palyatif bakım hakkındaki algılarını belirlemek ve palyatif bakım merkezlerinde yaşadıkları deneyimleri üzerinden yaşamış oldukları güçlükleri belirlemek amacıyla yapıldı.

Gereç ve Yöntem: Niteliksel yarı yapılandırılmış görüşmeler, palyatif bakım merkezlerinde hastası bulunan 21 hasta yakını ile gerçekleştirildi. Niteliksel verilerin analizinde ise içerik analizi (content analysis) yöntemi kullanıldı. Verilerin çözümlenmesinde Giorgi’nin geliştirmiş olduğu dört aşamalı niteliksel analiz adımları kullanıldı.

Bulgular: Daha önce palyatif bakım konusunda hiçbir bilgisi olmayan hasta yakınları palyatif bakımı “hastanın bakımının öğretildiği yer”, “çok önemli bir yardım hizmeti”, “ilk defa duyulan ancak yaygınlaştırılması gereken bir hizmet” olarak algıladıkları belirlendi. 

Sonuç: Yaşamın sonuna yaklaşan hastalara bakım sağlanması, bakım verenlere önemli bir yük getirebilir. Bu nedenle, hasta yakınlarının bu süreçte yaşamış oldukları zorluklar, beklentileri ve algıları palyatif bakımdaki müdahalelerle ilgili politika kararlarının yönlendirilmesi konusunda yararlı bilgiler sunabilir.


References

  • 1. Collins A, McLachlan SA and Philip J. Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers. Palliative medicine. 2017; 31: 825-32.
  • 2. Boersma I, Jones J, Coughlan C, et al. Palliative Care and Parkinson's Disease: Caregiver Perspectives. Journal of palliative medicine. 2017; 20: 930-8.
  • 3. Sampson C, Finlay I, Byrne A, Snow V and Nelson A. The practice of palliative care from the perspective of patients and carers. BMJ supportive & palliative care. 2014; 4: 291-8.
  • 4. Ciemins EL, Brant J, Kersten D, Mullette E and Dickerson D. A qualitative analysis of patient and family perspectives of palliative care. Journal of palliative medicine. 2015; 18: 282-5.
  • 5. Aoun S, Slatyer S, Deas K and Nekolaichuk C. Family Caregiver Participation in Palliative Care Research: Challenging the Myth. Journal of pain and symptom management. 2017; 53: 851-61.
  • 6. Ahmed N, Bestall J, Ahmedzai SH, Payne S, Clark D and Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliative medicine. 2004; 18: 525-42.
  • 7. Hannon B, Swami N, Rodin G, Pope A and Zimmermann C. Experiences of patients and caregivers with early palliative care: A qualitative study. Palliative medicine. 2017; 31: 72-81.
  • 8. McDonald JC, Swami N, Hannon B, et al. Quality of life and satisfaction with care in caregivers of patients with advanced cancer: Results from a trial of early palliative care. Journal of Clinical Oncology. 2015; 33: 9513-.
  • 9. Giorgi A. Sketch of a psychological phenomenological method. Phenomenology and psychological research. 1985: 8-22.
  • 10. Creswell JW. Research Desing: Qualitative Quantitativeand Mixed Methods Approaches Thousand Oaks. California, SAGE2014.
  • 11. Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced cancer and their caregivers. CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne. 2016; 188: E217-27.
  • 12. Benini F, Fabris M, Pace DS, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Annali dell'Istituto superiore di sanita. 2011; 47: 253-9.
  • 13. Fox S, Cashell A, Kernohan WG, et al. Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview. Palliative medicine. 2017; 31: 634-41.
  • 14. Maloney C, Lyons KD, Li Z, Hegel M, Ahles TA and Bakitas M. Patient perspectives on participation in the ENABLE II randomized controlled trial of a concurrent oncology palliative care intervention: benefits and burdens. Palliative medicine. 2013; 27: 375-83.
  • 15. Ventura AD, Burney S, Brooker J, Fletcher J and Ricciardelli L. Home-based palliative care: a systematic literature review of the self-reported unmet needs of patients and carers. Palliative medicine. 2014; 28: 391-402.
  • 16. Veloso VI and Tripodoro VA. Caregivers burden in palliative care patients: a problem to tackle. Current opinion in supportive and palliative care. 2016; 10: 330-5.
  • 17. Naoki Y, Matsuda Y, Maeda I, et al. Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home. Palliative & supportive care. 2018; 16: 260-8.
  • 18. Costa-Requena G, Espinosa Val MC and Cristofol R. Caregiver burden in end-of-life care: advanced cancer and final stage of dementia. Palliative & supportive care. 2015; 13: 583-9.
  • 19. Hughes MT and Smith TJ. The growth of palliative care in the United States. Annual review of public health. 2014; 35: 459-75.
  • 20. Spilsbury K and Rosenwax L. Community-based specialist palliative care is associated with reduced hospital costs for people with non-cancer conditions during the last year of life. BMC palliative care. 2017; 16: 68.
  • 21. Smith S, Brick A, O'Hara S and Normand C. Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliative medicine. 2014; 28: 130-50.
  • 22. Lee JE, Shin DW, Cho J, et al. Caregiver burden, patients' self-perceived burden, and preference for palliative care among cancer patients and caregivers. Psycho-oncology. 2015; 24: 1545-51.
There are 22 citations in total.

Details

Primary Language English
Subjects Health Care Administration
Journal Section Research
Authors

Nazan Torun 0000-0003-1793-3248

Publication Date December 29, 2019
Acceptance Date August 3, 2019
Published in Issue Year 2019 Volume: 44 Issue: Supplement 1

Cite

MLA Torun, Nazan. “Palliative Care Experiences of the Patient Family”. Cukurova Medical Journal, vol. 44, 2019, pp. 358-65, doi:10.17826/cumj.559077.