Skip to main content
Top
Published in: BMC Palliative Care 1/2020

Open Access 01-12-2020 | Care | Research article

Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan

Authors: Sameena Shah, Faizan Qaisar, Iqbal Azam, Khairunnisa Mansoor

Published in: BMC Palliative Care | Issue 1/2020

Login to get access

Abstract

Background

Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach.

Method

A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence’s, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant.

Results

Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes.

Conclusion

Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.
Literature
3.
go back to reference Higginson IJ, Evan CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J Sci Am. 2010;16(5):423–35. Higginson IJ, Evan CJ. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J Sci Am. 2010;16(5):423–35.
4.
go back to reference Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health. 2019;7(7):883-892. Available from: doi:https://doi.org/10.1016/S2214-109X(19)30172-X. Epub. Sleeman KE, de Brito M, Etkind S, Nkhoma K, Guo P, Higginson IJ, et al. The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. Lancet Glob Health. 2019;7(7):883-892. Available from: doi:https://​doi.​org/​10.​1016/​S2214-109X(19)30172-X. Epub.
6.
go back to reference Shad A, Ashraf MS, Hafeez H. Development of palliative-care services in a developing country: Pakistan. J Pediatr Hematol Oncol. 2011;33(Suppl 1):S62–3.CrossRef Shad A, Ashraf MS, Hafeez H. Development of palliative-care services in a developing country: Pakistan. J Pediatr Hematol Oncol. 2011;33(Suppl 1):S62–3.CrossRef
7.
go back to reference Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med. 2008;22(2):153–71.CrossRef Docherty A, Owens A, Asadi-Lari M, Petchey R, Williams J, Carter YH. Knowledge and information needs of informal caregivers in palliative care: a qualitative systematic review. Palliat Med. 2008;22(2):153–71.CrossRef
8.
go back to reference Benini F, Fabris M, Pace DS, Verno V, Negro V, de Conno F, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Ann Ist Super Sanita. 2011;47(3):253–9.PubMed Benini F, Fabris M, Pace DS, Verno V, Negro V, de Conno F, et al. Awareness, understanding and attitudes of Italians regarding palliative care. Ann Ist Super Sanita. 2011;47(3):253–9.PubMed
9.
go back to reference Matsuyama RK, Balliet W, Ingram K, Lyckholm LJ, Wilson-Genderson M, Smith TJ. Will patients want hospice or palliative care if they do not know what it is? J of Hosp Palliat Nurs. 2011;13(1):41–6.CrossRef Matsuyama RK, Balliet W, Ingram K, Lyckholm LJ, Wilson-Genderson M, Smith TJ. Will patients want hospice or palliative care if they do not know what it is? J of Hosp Palliat Nurs. 2011;13(1):41–6.CrossRef
10.
go back to reference Hirai K, Kudo T, Akiyama M, Matoba M, Shiozaki M, Yamaki M, et al. Public awareness, knowledge of availability, and readiness for cancer palliative care services: a population-based survey across four regions in Japan. J Palliat Med. 2011;14(8):918–22.CrossRef Hirai K, Kudo T, Akiyama M, Matoba M, Shiozaki M, Yamaki M, et al. Public awareness, knowledge of availability, and readiness for cancer palliative care services: a population-based survey across four regions in Japan. J Palliat Med. 2011;14(8):918–22.CrossRef
11.
go back to reference Abbas SQ, Muhammad SR, Mubeen SM, Abbas SZ. Awareness of palliative medicine among Pakistani doctors: a survey. J Pak Med Assoc. 2004;54(4):195–9.PubMed Abbas SQ, Muhammad SR, Mubeen SM, Abbas SZ. Awareness of palliative medicine among Pakistani doctors: a survey. J Pak Med Assoc. 2004;54(4):195–9.PubMed
12.
go back to reference Singh T, Harding R. Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes. BMC Res Notes. 2015;8(1):172.CrossRef Singh T, Harding R. Palliative care in South Asia: a systematic review of the evidence for care models, interventions, and outcomes. BMC Res Notes. 2015;8(1):172.CrossRef
13.
go back to reference Love AW, Liversage LM. Barriers to accessing palliative care: a review of the literature. Prog Palliat Care. 2014;22(1):9–19.CrossRef Love AW, Liversage LM. Barriers to accessing palliative care: a review of the literature. Prog Palliat Care. 2014;22(1):9–19.CrossRef
14.
go back to reference McAteer R, Wellbery C. Palliative care: benefits, barriers, and best practices. Am Fam Physician. 2013;88(12):807–13.PubMed McAteer R, Wellbery C. Palliative care: benefits, barriers, and best practices. Am Fam Physician. 2013;88(12):807–13.PubMed
15.
go back to reference Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–14.CrossRef Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–14.CrossRef
16.
go back to reference Choi S, Seo J. Analysis of caregiver burden in palliative care: an integrated review. Nurs Forum. 2019;54(2):280–90.CrossRef Choi S, Seo J. Analysis of caregiver burden in palliative care: an integrated review. Nurs Forum. 2019;54(2):280–90.CrossRef
17.
go back to reference Veloso VI, Tripodoro VA. Caregivers burden in palliative care patients: a problem to tackle. Curr Opin Support Palliat Care. 2016;10(4):330–5.CrossRef Veloso VI, Tripodoro VA. Caregivers burden in palliative care patients: a problem to tackle. Curr Opin Support Palliat Care. 2016;10(4):330–5.CrossRef
18.
go back to reference Dionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care. 2019;17(6):643–9.CrossRef Dionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care. 2019;17(6):643–9.CrossRef
19.
go back to reference Mcllfatrick S, Hasson F, McLaughlin D, Johnston G, Roulston A, Rutherford L, et al. Public awareness and attitudes toward palliative care in Northern Ireland. BMC Palliat Care. 2013;12(1):1–7.CrossRef Mcllfatrick S, Hasson F, McLaughlin D, Johnston G, Roulston A, Rutherford L, et al. Public awareness and attitudes toward palliative care in Northern Ireland. BMC Palliat Care. 2013;12(1):1–7.CrossRef
20.
go back to reference Wallace J. Public awareness of palliative care: report of the findings of the first national survey in Scotland into public knowledge and understanding of palliative care. Edinburgh (SCT): Scottish Partnership for Palliative Care; 2003. 22 p. Wallace J. Public awareness of palliative care: report of the findings of the first national survey in Scotland into public knowledge and understanding of palliative care. Edinburgh (SCT): Scottish Partnership for Palliative Care; 2003. 22 p.
22.
go back to reference Dahlberg L, Demack S, Bambra C. Age and gender of informal carers: a population-based study in the UK. Health Soc Care Commun. 2007;15(5):439–45.CrossRef Dahlberg L, Demack S, Bambra C. Age and gender of informal carers: a population-based study in the UK. Health Soc Care Commun. 2007;15(5):439–45.CrossRef
23.
go back to reference Chauhan K. Patriarchal Pakistan: Women’s representation, gender inequality in the public sector in Pakistan. New York: Palgrave Macmillan; 2014. 57 p. Chauhan K. Patriarchal Pakistan: Women’s representation, gender inequality in the public sector in Pakistan. New York: Palgrave Macmillan; 2014. 57 p.
24.
go back to reference Rehman A, Jingdong L, Hussain I. The province-wise literacy rate in Pakistan and its impact on the economy. Pac Sci Rev B. 2015;1(3):140–4. Rehman A, Jingdong L, Hussain I. The province-wise literacy rate in Pakistan and its impact on the economy. Pac Sci Rev B. 2015;1(3):140–4.
26.
go back to reference Morris SM, King C, Turner M, Payne S. Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med. 2015;29(6):487–95.CrossRef Morris SM, King C, Turner M, Payne S. Family carers providing support to a person dying in the home setting: a narrative literature review. Palliat Med. 2015;29(6):487–95.CrossRef
27.
go back to reference Ramirez A, Addington-Hall J, Richards M. ABC of palliative care. The carers. BMJ. 1998;316(7126):208.CrossRef Ramirez A, Addington-Hall J, Richards M. ABC of palliative care. The carers. BMJ. 1998;316(7126):208.CrossRef
28.
go back to reference Bill McInturff and Elizabeth Harrington. Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. New York (USA): Center to Advance Palliative Care;2003.3p. Bill McInturff and Elizabeth Harrington. Public Opinion Research on Palliative Care: A Report Based on Research by Public Opinion Strategies. New York (USA): Center to Advance Palliative Care;2003.3p.
30.
go back to reference Walczak A, Butow PN, Clayton JM, Tattersall MH, Davidson PM, Young J. Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers. BMJ Open. 2014;4(6):1–11.CrossRef Walczak A, Butow PN, Clayton JM, Tattersall MH, Davidson PM, Young J. Discussing prognosis and end-of-life care in the final year of life: a randomised controlled trial of a nurse-led communication support programme for patients and caregivers. BMJ Open. 2014;4(6):1–11.CrossRef
31.
go back to reference Zafar W, Hafeez H, Jamshed A, Shah MA, Quader A, Yusuf MA. Preferences regarding disclosure of prognosis and end-of- life care: a survey of cancer patients with advanced disease in a lower-middle-income country. Palliat Med. 2016;30(7):661–73.CrossRef Zafar W, Hafeez H, Jamshed A, Shah MA, Quader A, Yusuf MA. Preferences regarding disclosure of prognosis and end-of- life care: a survey of cancer patients with advanced disease in a lower-middle-income country. Palliat Med. 2016;30(7):661–73.CrossRef
32.
go back to reference Ishaque S, Saleem T, Khawaja FB, Qidwai W. Breaking bad news: exploring patient's perspective and expectations. J Pak Med Assoc. 2010;60(5):407–11.PubMed Ishaque S, Saleem T, Khawaja FB, Qidwai W. Breaking bad news: exploring patient's perspective and expectations. J Pak Med Assoc. 2010;60(5):407–11.PubMed
33.
go back to reference Mohanti BK. Ethics in palliative care. Indian J Palliat Care. 2009;15(2):89–92.CrossRef Mohanti BK. Ethics in palliative care. Indian J Palliat Care. 2009;15(2):89–92.CrossRef
35.
go back to reference Shad A, Ashraf MS, Hafeez H. Development of palliative-care services in a developing country: Pakistan. J Pediatr Hematol Oncol. 2011;33:S62–3.CrossRef Shad A, Ashraf MS, Hafeez H. Development of palliative-care services in a developing country: Pakistan. J Pediatr Hematol Oncol. 2011;33:S62–3.CrossRef
36.
go back to reference Aljawi DM, Harford JB. Palliative Care in the Muslim-Majority Countries: The Need for More and Better Care. In: Chang E, editor. Contemporary and Innovative Practice in Palliative Care. [Internet]. Shanghai:InTech; 2012.[2020 Jul 3]. Chapter 9. Available from: InTech-Palliative_care_in_the_muslim_majority_countries_the_need-for-more-and-better_care.pdf. Aljawi DM, Harford JB. Palliative Care in the Muslim-Majority Countries: The Need for More and Better Care. In: Chang E, editor. Contemporary and Innovative Practice in Palliative Care. [Internet]. Shanghai:InTech; 2012.[2020 Jul 3]. Chapter 9. Available from: InTech-Palliative_care_in_the_muslim_majority_countries_the_need-for-more-and-better_care.pdf.
37.
go back to reference Ddungu H. Palliative care: what approaches are suitable in developing countries? Br J Haematol. 2011;154(6):728–35.CrossRef Ddungu H. Palliative care: what approaches are suitable in developing countries? Br J Haematol. 2011;154(6):728–35.CrossRef
38.
go back to reference Maddocks I. Palliative care education in the developing countries. J Pain Palliat Care Pharmacother. 2004;17(3–4):211–21.CrossRef Maddocks I. Palliative care education in the developing countries. J Pain Palliat Care Pharmacother. 2004;17(3–4):211–21.CrossRef
39.
go back to reference Stjernswärd J. Palliative care: the public health strategy. J Public Health Policy. 2007;28(1):42–55.CrossRef Stjernswärd J. Palliative care: the public health strategy. J Public Health Policy. 2007;28(1):42–55.CrossRef
Metadata
Title
Perceptions, knowledge and attitudes towards the concept and approach of palliative care amongst caregivers: a cross-sectional survey in Karachi, Pakistan
Authors
Sameena Shah
Faizan Qaisar
Iqbal Azam
Khairunnisa Mansoor
Publication date
01-12-2020
Publisher
BioMed Central
Keyword
Care
Published in
BMC Palliative Care / Issue 1/2020
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-020-00688-w

Other articles of this Issue 1/2020

BMC Palliative Care 1/2020 Go to the issue