Factors that influence customer and family satisfaction with palliative care

scoping review

Authors

  • Igor Pinto Universidade Católica Portuguesa, Instituto de Ciências da Saúde, Porto, Portugal https://orcid.org/0000-0003-3739-2020
  • Sónia Novais Escola Superior de Saúde Norte da Cruz Vermelha Portuguesa, CINTESIS, Universidade do Porto, Oliveira de Azeméis, Portugal https://orcid.org/0000-0002-4328-3755
  • Maribel Carvalhais Escola Superior de Saúde Norte da Cruz Vermelha Portuguesa, CINTESIS, Universidade do Porto, Oliveira de Azeméis, Portugal https://orcid.org/0000-0002-2206-2582
  • Sara Gomes Universidade Católica Portuguesa, Instituto de Ciências da Saúde, Porto, Portugal https://orcid.org/0000-0003-4599-7345
  • Custódio Soares Escola Superior de Saúde Norte da Cruz Vermelha Portuguesa, Oliveira de Azeméis, Portugal https://orcid.org/0000-0002-8629-4411

DOI:

https://doi.org/10.29352/mill0217.25317

Keywords:

palliative care, patient satisfaction, hospice and palliative care nursing, caregivers

Abstract

Introduction: The assessment of satisfaction with palliative care (PC) from the perspective of its primary beneficiaries is essential and is consolidated with the ethical duty of health professionals to provide the best care.

Objective: To synthesize the scientific evidence on the factors that influence the assessment of customer satisfaction with PC and identify the instruments used for its assessment.

Methods: Review according to the Joanna Briggs Institute method for carrying out a scoping review. The search was carried out in Scopus, CINAHL Complete and Web of Science databases, and in OpenGrey, and Dart-Europe in July 2021. The selection was carried out by two independent researchers and the data were grouped into themes according to their contents.

Results: Forty studies were included. From the analysis carried out, researchers concluded that the factors that influence the assessment of satisfaction were grouped into five themes: Availability of Care, Physical Care, Psychosocial Care, Communication of Information and Care for the Patient in Imminent Death.

Conclusion: FAMCARE is the most widely used measurement instrument to assess customer satisfaction with PC. Knowledge of influencing factors allows both organizations and professionals to promote better personalization of care, to ensure safety and quality, and to adjust to the expectations of clients and caregivers.

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References

Alshammary, S., Duraisamy, B., Salem, L., & Altamimi, A. (2020). Integration of Palliative Care Into Primary Health Care: Model of Care Experience. CUREUS, 12(6). https://doi.org/10.7759/cureus.8866

Andrade, C. G. de, Costa, S. F. G. da, & Lopes, M. E. L. (2013). Cuidados paliativos: A comunicação como estratégia de cuidado para o paciente em fase terminal. Ciência & Saúde Coletiva, 18, 2523–2530. https://doi.org/10.1590/S1413-81232013000900006

Capelas, M. (2014). Indicadores de Qualidade para os Serviços de Cuidados Paliativos.

Chan, C. W., Chui, Y. Y., Chair, S. Y., Sham, M. M., Lo, R. S., Ng, C. S., Chan, H. Y., & Lai, D. C. (2014). The evaluation of a palliative care programme for people suffering from life-limiting diseases. Journal of Clinical Nursing (John Wiley & Sons, Inc., 23(1–2), 113–123. https://doi.org/10.1111/jocn.12094

Comissão Nacional de Cuidados Paliativos (CNCP). (2019). Plano Estratégico para o desenvolvimento dos Cuidados Paliativos para o biénio 2019/2020. Retrieved from: https://apcp.com.pt/152795/aprovacao-do-plano-estrategico-para-o-desenvolvimento-dos-cuidados-paliativos-para-o-bienio-2019-2020

D’Angelo, D., Punziano, A. C., Mastroianni, C., Marzi, A., Latina, R., Ghezzi, V., Piredda, M., & De Marinis, M. G. (2017). Translation and Testing of the Italian Version of FAMCARE-2: Measuring Family Caregivers’ Satisfaction With Palliative Care. Journal of Family Nursing, 23(2), 252–272. https://doi.org/10.1177/1074840717697538

Detering, K., Hancock, A., Reade, M., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial. BMJ-British Medical Journal, 340. https://doi.org/10.1136/bmj.c1345

Fakhoury, W. (1998). Satisfaction with palliative care: What should we be aware of?. International Journal of Nursing Studies, 35(3), 171–176. https://doi.org/10.1016/S0020-7489(98)00026-1

Flöther, L., Pötzsch, B., Jung, M., Jung, R., Bucher, M., Glowka, A., & Medenwald, D. (2021). Treatment effects of palliative care consultation and patient contentment: A monocentric observational study. Medicine, 100(12), e24320–e24320. https://doi.org/10.1097/MD.0000000000024320

Gade, G., Venohr, I., Conner, D., Mcgrady, K., Beane, J., Richardson, R., Williams, M., Liberson, M., Blum, M., & Della Penna, R. (2008). Impact of an inpatient palliative care team: A randomized controlled trial. Journal of Palliative Medicine, 11(2), 180–190. https://doi.org/10.1089/jpm.2007.0055

Gelfman LP, Meier DE, Morrison RS, Gelfman, L. P., Meier, D. E., & Morrison, R. S. (2008). Does palliative care improve quality? A survey of bereaved family members. Journal of Pain & Symptom Management, 36(1), 22–28. https://doi.org/10.1016/j.jpainsymman.2007.09.008

Grande, G., Stajduhar, K., Aoun, S., Toye, C., Funk, L., Addington-Hall, J., Payne, S., & Todd, C. (2009). Supporting lay carers in end of life care: Current gaps and future priorities. Palliative Medicine, 23(4), 339–344. https://doi.org/10.1177/0269216309104875

Heyland, D. K., Jiang, X., Day, A. G., & Cohen, S. R. (2013). The Development and Validation of a Shorter Version of the Canadian Health Care Evaluation Project Questionnaire (CANHELP Lite): A Novel Tool to Measure Patient and Family Satisfaction With End-of-Life Care. Journal of Pain & Symptom Management, 46(2), 289–297. https://doi.org/10.1016/j.jpainsymman.2012.07.012

Huen, K., Huang, C., Liu, H., Kwan, L., Pannell, S., Laviana, A., Saucedo, J., Lorenz, K., Bennett, C., & Bergman, J. (2019). Outcomes of an Integrated Urology-Palliative Care Clinic for Patients With Advanced Urological Cancers: Maintenance of Quality of Life and Satisfaction and High Rate of Hospice Utilization Through End of Life. American Journal of Hospice & Palliative Medicine, 36(9), 801–806. https://doi.org/10.1177/1049909119833663

Kingsley, C., & Patel, S. (2017). Patient-reported outcome measures and patient-reported experience measures. BJA Education, 17(4), 137–144. https://doi.org/10.1093/bjaed/mkw060

Korfage, I. J., Carreras, G., Arnfeldt Christensen, C. M., Billekens, P., Bramley, L., Briggs, L., Bulli, F., Caswell, G., Červ, B., van Delden, J. J. M., Deliens, L., Dunleavy, L., Eecloo, K., Gorini, G., Groenvold, M., Hammes, B., Ingravallo, F., Jabbarian, L. J., Kars, M. C., & Kodba-Čeh, H. (2020). Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial. PLoS Medicine, 17(11), 1–16. https://doi.org/10.1371/journal.pmed.1003422

Krawczyk, M., & Gallagher, R. (2016). Communicating prognostic uncertainty in potential end-of-life contexts: Experiences of family members. BMC Palliative Care, 15(1), 59. https://doi.org/10.1186/s12904-016-0133-4

Lo C, Burman D, Rodin G, Zimmermann C, Lo, C., Burman, D., Rodin, G., & Zimmermann, C. (2009). Measuring patient satisfaction in oncology palliative care: Psychometric properties of the FAMCARE-patient scale. Quality of Life Research, 18(6), 747–752. https://doi.org/10.1007/s11136-009-9494-y

London, M., & Lundstedt, J. (2007). Families speak about inpatient end-of-life care. JOURNAL OF NURSING CARE QUALITY, 22(2), 152–158. https://doi.org/10.1097/01.NCQ.0000263105.08096.b1

McDarby, M., & Carpenter, B. D. (2019). Barriers and Facilitators to Effective Inpatient Palliative Care Consultations: A Qualitative Analysis of Interviews With Palliative Care and Nonpalliative Care Providers. The American Journal of Hospice & Palliative Care, 36(3), 191–199. https://doi.org/10.1177/1049909118793635

Mehdinezhad, M., Naji, S., & Hazini, A. (2016). Investigate the effect of palliative care on the satisfaction of patients with cancer who referred to Imam Reza Clinic-Seyedoshohada Hospital and Entekhab Center in Isfahan in 2014. International Journal of Medical Research & Health Sciences, 5(11), 199–203.

Miceli PJ & Mylod DE. (2003). Satisfaction of families using end-of-life care: Current successes and challenges in the hospice industry. American Journal of Hospice & Palliative Care, 20(5), 360–1p. https://doi.org/10.1177/104990910302000510

Morita, T., Chihara, S., & Kashiwagi, T. (2002). A scale to measure satisfaction of bereaved family receiving inpatient palliative caret. Palliative Medicine, 16(2), 141–150. https://doi.org/10.1191/0269216302pm514oa

Morita T, Chihara S, & Kashiwagi T. (2002). Family satisfaction with inpatient palliative care in Japan. Palliative Medicine, 16(3), 185–193. https://doi.org/10.1191/0269216302pm524oa

Naoki, Y., Matsuda, Y., Maeda, I., Kamino, H., Kozaki, Y., Tokoro, A., Maki, N., & Takada, M. (2018). Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home. Palliative & Supportive CarE, 16(3), 260–268. https://doi.org/10.1017/S1478951517000232

Ng, A., & Wong, F. (2018). Effects of a Home-Based Palliative Heart Failure Program on Quality of Life, Symptom Burden, Satisfaction and Caregiver Burden: A Randomized Controlled Trial. Journal of Pain and Symptom Management, 55(1), 1–11. https://doi.org/10.1016/j.jpainsymman.2017.07.047

Ng, Z., Tan, P., Theophilus, M., & Ng, Z. Q. (2017). Stapled Mesh stomA Reinforcement Technique (SMART) in the prevention of parastomal hernia: A single-centre experience. Hernia, 21(3), 469–475. https://doi.org/10.1007/s10029-016-1548-9

NHS Finance and Operations. (2016). Our Commitment to you for end of life care: The Government Response to the Review of Choice in End of Life Care. gov.uk; London. Retrieved from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/536326/choice-response.pdf

Observatório Português de Cuidados Paliativos. (2018). Observatório Português de Cuidados Paliativos partilha Relatório de Outono. Retrieved from: https://ics.lisboa.ucp.pt/news/observatorio-portugues-de-cuidados-paliativos-partilha-relatorio-de-outono-10066

Ornstein, K., Penrod, J., Schnur, J., Smith, C., Teresi, J., Garrido, M., McKendrick, K., Siu, A., Meier, D., & Morrison, R. (2017). The Use of a Brief 5-Item Measure of Family Satisfaction as a Critical Quality Indicator in Advanced Cancer Care: A Multisite Comparison. Journal of Palliative Medicine, 20(7), 716–721. https://doi.org/10.1089/jpm.2016.0442

Ornstein, K., Teresi, J., Ocepek-Welikson, K., Ramirez, M., Meier, D., Morrison, R., & Siu, A. (2015). Use of an Item Bank to Develop Two Short-Form FAMCARE Scales to Measure Family Satisfaction With Care in the Setting of Serious Illness. Journal of Pain and Symptom Management, 49(5), 894-+. https://doi.org/10.1016/j.jpainsymman.2014.10.017

Ozcelik, H., Cakmak, D., Fadiloglu, C., Yildirim, Y., & Uslu, R. (2015). Determining the satisfaction levels of the family members of patients with advanced-stage cancer. Palliative & Supportive Care, 13(3), 741–747. https://doi.org/10.1017/S1478951514000534

Ozcelik, H., Fadiloglu, C., Karabulut, B., & Uyar, M. (2014). Examining the Effect of the Case Management Model on Patient Results in the Palliative Care of Patients With Cancer. American Journal of Hospice & Palliative Medicine, 31(6), 655–664. https://doi.org/10.1177/1049909113506980

Paramanandam, G., Boohene, J., Tran, K., & Volk-Craft, B. (2020). The Impact of a Hospital-Community Based Palliative Care Partnership: Continuum from Hospital to Home. Journal of Palliative Medicine, 23(12), 1599–1605. https://doi.org/10.1089/jpm.2020.0090

Parker, S. M., Remington, R., Nannini, A., & Cifuentes, M. (2013). Patient Outcomes and Satisfaction With Care Following Palliative Care Consultation. Journal of Hospice & Palliative Nursing, 15(4), 225–232. https://doi.org/10.1097/NJH.0b013e318279f4ce

Parpa, E., Galanopoulou, N., Tsilika, E., Galanos, A., & Mystakidou, K. (2017). Psychometric Properties of the Patients’ Satisfaction Instrument FAMCARE-P13 in a Palliative Care Unit. American Journal of Hospice & Palliative Medicine, 34(7), 597–602. https://doi.org/10.1177/1049909116645511

Peters, M., Godfrey, C., McInerney, P., Munn, Z., Trico, A., & Khalil, H. (2020). Chapter 11: Scoping Reviews. In E. Aromataris & Z. Munn (Eds.), JBI Manual for Evidence Synthesis. JBI. https://doi.org/10.46658/JBIMES-20-12

Proot I, Schrijnemaekers V, van Hoef L, Courtens A, & Huijer HA. (2006). Measuring patient and family satisfaction with terminal care: The development and testing of the Maastricht Instrument on Satisfaction with Terminal Care (MITTZ). Supportive & Palliative Cancer Care, 3(1), 7–14. Retrieved from: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=106205200&lang=pt-br&site=ehost-live

Ribeiro, O., Lima, S., & Duarte, J. (2020). Satisfação da família com os cuidados paliativos. Milleniu - Journal of Education, Technologies, and Health, 5e, Article 5e. https://doi.org/10.29352/mill0205e.22.00322

Ringdal, G., Jordhoy, M., & Kaasa, S. (2003). Measuring quality of palliative care: Psychometric properties of the FAMCARE Scale. Quality of Life Research, 12(2), 167–176. https://doi.org/10.1023/A:1022236430131

Rosser, M., & Walsh, H. (2014). Fundamentals of palliative care for student nurses.

Roza, K. A., Lee, E. J., Meier, D. E., & Goldstein, N. E. (2015). A Survey of Bereaved Family Members To Assess Quality of Care on a Palliative Care Unit. Journal of Palliative Medicine, 18(4), 358–365. https://doi.org/10.1089/jpm.2014.0172

Sandsdalen, T., Wilde-Larsson, B., & Grondahl, V. (2019). Patients’ Perceptions Of The Quality Of Palliative Care And Satisfaction—A Cluster Analysis. Journal of Multidisciplinary Healthcare, 12, 903–915. https://doi.org/10.2147/JMDH.S220656

Slort, W., Schweitzer, B. P. M., Blankenstein, A. H., Abarshi, E. A., Riphagen, I. I., Echteld, M. A., Aaronson, N. K., van der Horst, H., & Deliens, L. (2011). Perceived barriers and facilitators for general practitioner-patient communication in palliative care: A systematic review. Palliative Medicine, 25(6), 613–629. https://doi.org/10.1177/0269216310395987

Strasser F, Sweeney C, Willey J, Benisch-Tolley S, Palmer JL, & Bruera E. (2004). Impact of a half-day multidisciplinary symptom control and palliative care outpatient clinic in a comprehensive cancer center on recommendations, symptom intensity, and patient satisfaction: A retrospective descriptive study. Journal of Pain & Symptom Management, 27(6), 481–491. https://doi.org/10.1016/j.jpainsymman.2003.10.011

Teresi, J. A., Ornstein, K., Ocepek-Welikson, K., Ramirez, M., & Siu, A. (2014). Performance of the Family Satisfaction with the End-of-Life Care (FAMCARE) measure in an ethnically diverse cohort: Psychometric analyses using item response theory. Supportive Care in Cancer, 22(2), 399–408. https://doi.org/10.1007/s00520-013-1988-z

Teresi, J., Ocepek-Welikson, K., Ramirez, M., Kleinman, M., Ornstein, K., & Siu, A. (2015). Evaluation of measurement equivalence of the Family Satisfaction with the End-of-Life Care in an ethnically diverse cohort: Tests of differential item functioning. Palliative Medicine, 29(1), 83–96. https://doi.org/10.1177/0269216314545802

Thery, L., Anota, A., Waechter, L., Laouisset, C., Marchal, T., Burnod, A., Angellier, E., Djoumakh, O., Thebaut, C., Bredart, A., Dolbeault, S., Mino, J., & Bouleuc, C. (2021). Palliative care in day-hospital for advanced cancer patients: A study protocol for a multicentre randomized controlled trial. BMC Palliative Care, 20(1). https://doi.org/10.1186/s12904-021-00754-x

Tierney, R., Horton, S., Hannan, T., & Tierney, W. (1998). Relationships between symptom relief, quality of life, and satisfaction with hospice care. Palliative Medicine, 12(5), 333–344. https://doi.org/10.1191/026921698670933919

Tricco, A. C., Lillie, E., Zarin, W., O’Brien, K. K., Colquhoun, H., Levac, D., Moher, D., Peters, M. D. J., Horsley, T., Weeks, L., Hempel, S., Akl, E. A., Chang, C., McGowan, J., Stewart, L., Hartling, L., Aldcroft, A., Wilson, M. G., Garritty, C., … Straus, S. E. (2018). PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation. Annals of Internal Medicine, 169(7), 467–473. https://doi.org/10.7326/M18-0850

van Soest-Poortvliet, M., van der Steen, J., de Vet, H., Hertogh, C., Deliens, L., & Onwuteaka-Philipsen, B. (2015). Comfort goal of care and end-of-life outcomes in dementia: A prospective study. Palliative Medicine, 29(6), 538–546. https://doi.org/10.1177/0269216315570409

Vitacca, M., Comini, L., Tabaglio, E., Platto, B., & Gazzi, L. (2019). Tele-Assisted Palliative Homecare for Advanced Chronic Obstructive Pulmonary Disease: A Feasibility Study. Journal of Palliative Medicine, 22(2), 173–178. https://doi.org/10.1089/jpm.2018.0321

Wentlandt, K., Seccareccia, D., Kevork, N., Workentin, K., Blacker, S., Grossman, D., & Zimmermann, C. (2016). Quality of Care and Satisfaction With Care on Palliative Care Units. Journal of Pain & Symptom Management, 51(2), 184–192. https://doi.org/10.1016/j.jpainsymman.2015.10.006

World Health Organization. (2020). Global Atlas of Palliative Care at the End of Life (London). 2nd ed.; Worldwide Palliative Care Alliance. www.thewhpca.org

Zimmermann, C., Riechelmann, R., Krzyzanowska, M., Rodin, G., & Tannock, I. (2008). Effectiveness of specialized palliative—Care a systematic review. JAMA- Journal of the American Medical Association, 299(14), 1698–1709. https://doi.org/10.1001/jama.299.14.1698

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Published

2021-12-29

How to Cite

Pinto, I., Novais, S., Carvalhais, M. ., Gomes, S. ., & Soares, C. (2021). Factors that influence customer and family satisfaction with palliative care: scoping review. Millenium - Journal of Education, Technologies, and Health, 2(17), 41–51. https://doi.org/10.29352/mill0217.25317

Issue

No. 17 (2022): Série 2 Nº17

Section

Life and Healthcare Sciences

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