Analysis of COMPASsion and Humanisation of Adolescents Facing the End-of-life Processes.

NCT06310434 | Enrolling By Invitation

• 1 other identifier: PI23/00409
• Study Type: observational
• Target: 1,852
• Locations: 1 country
• Sites: 1

Brief Summary

The investigators want to work on compassion, understood as the recognition of the suffering of others that motivates us to try to alleviate it. The goal of this Multicenter project, with a mixed sequential transformative methodology, is to analyze the impact of a participatory process of awareness and reflection on compassion, in the face of end-of-life processes, in adolescents aged 12-23 years in 6 Spanish provinces, and to understand how the participatory process can transform and improve their compassion. As the adolescents must be the protagonists of change, the study will be conducted with students enrolled in one public secondary school and in one degree in a public University, that belongs to the same "health area" in each province. The investigators also include families' and teachers' knowledge of the context because it can support the interventions of change proposals. Compassion will be assessed using the Compassion for the Lives of Others Scale (COOLS), comprising 26 items. Similarly, adolescents' attitudes toward death are another important concept and will be explored through the Death Anxiety Scale (DAS), which has 15 questions. Both scales will be distributed to the adolescents, requesting their permission anonymously. After the survey, a second phase will start with a Participatory Action Research (PAR) with different activities. The objective is to generate awareness of the need to improve it, allowing the participants to design the interventions, based on evidence-based proposals (cinema forum, colloquiums with testimonies of volunteers accompanying palliative patients, organization of Death Cafe, artistic and literary activities, generation of grief groups, etc.). At the end of the project, the investigators will evaluate the adolescent compassion level and create discussion groups again to understand the impact of the interventions. With this project, the investigators will empower new generations of people to encourage, facilitate, support, and celebrate mutual care and family and community development in end-of-life processes. The translation and implications of the results for clinical practice will contribute to reducing inequalities in health research in a vulnerable group of special interest, especially when treatments can do nothing for their survival but with interventions such as those in this study, the investigators can ensure quality and dignity of life as long as there is life.

Conditions

Compassion; Death Anxiety; Adolescent Behavior

Keywords

Compassion; Death Anxiety; Multicenter Study; Adolescent; Qualitative Research

Outcome Measures

Primary Outcomes (2)

• Describe and improve the level of compassion of high school and university students.

  Compassion is understood as the recognition of the suffering of others that motivates us to try to alleviate it. Compassion will be assessed using the "Compassion for the Lives of Others Scale" (COOL Scale), which comprises 26 items, of which 13 correspond to the empathy dimension and the remaining 13 to the relief of suffering dimension, presented on a 7-point Likert scale format, graded according to agreement with the statement (from 1 = strongly disagree to 7 = strongly agree). The scale provides an overall score for the degree of compassion towards others as well as a score for each subscale (empathy and relief of suffering).

  first 8 weeks and the last 8 weeks of the academy year

• Describe and improve the attitude towards death of high school and university students.

  The Death Anxiety Scale (DAS) assesses "fear of death, fear of illness, preoccupation with time, preoccupation with death", it comprises 15 self-administered dichotomous (true or false) response items. Items 1, 4, 8, 9, 10, 11, 12, 13, and 14 are scored 1 point if the answer is true and 0 points if it is false; conversely, the other six items, 2, 3, 5, 6, 7, and 15, are scored 1 point if the answer is false. The range of total scores for Death Anxiety was between 0 and 15, with higher scores indicating higher Death Anxiety.

  first 8 weeks and the last 8 weeks of the academy year

Study Arms (2)

University adolescents

Adolescents attending a public university that belongs to the same "health area" with similar population characteristics in each province. The inclusion criteria will be students enrolled in different undergraduate studies in a public University (18-23 years old), who don´t need curricular adaptation. We will exclude health science studies because we suppose that they are students who may have worked more on compassionate awareness.

Other: questionnaire; Other: Discussion group; Other: Reflective diary

High school adolescents

The inclusion criteria will be students enrolled in public secondary schools (12-17 years old), that belong to the same "health area". We also include families and teachers because we understand that their knowledge of the context can support the interventions of change proposals and are consistent with the participatory nature of the project. The inclusion criteria for families are parents, mothers, or legal tutors of minors with communication skills to participate in a group. Finally, all the teachers in every center will be invited to participate in the study.

Other: questionnaire; Other: Discussion group; Other: Reflective diary

Interventions

questionnaire OTHER

COOL Scale and DAS

High school adolescents; University adolescents

Discussion group OTHER

Through discussion groups with students in secondary schools and university separately, a compassionate plan will be designed

Also known as: PAR

High school adolescents; University adolescents

Reflective diary OTHER

Students can modify the interventions adapting them to their requirements to get the compassion needed for those in need.

High school adolescents; University adolescents

Eligibility Criteria

• Age: 12 Years - 23 Years
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64)
• Sampling Method: Probability Sample

Study Population

The project will be conducted in six "Health Areas" in 6 Spanish provinces: Baleares, Barcelona, Madrid, Murcia, Huelva, and Málaga. In each province, we will include all the public secondary schools and a public university that belong to the same "Health Area" with similar population characteristics in each province. In the 6 participating Universities there are 340 degrees and a total of 92103 students enrolled. In the 6 "Health Areas" of the study provinces, there are 61 high schools and the enrolled adolescents in school are 36486 students.

You may qualify if:

• University and high schools that belong to the same "Health Area"
• Students enrolled in public secondary schools (12-17 years old) and in different undergraduate studies in a public University (18-23 years old) during the development of the project
• Parents, mothers, or legal tutors of minors with communication skills to participate in a group

You may not qualify if:

• Students who need curricular adaptation
• Health science studies at the University

Sponsors & Collaborators

• Instituto de Salud Carlos III: lead

Study Sites (1)

Instituto Murciano de Investigación Biosanitaria

Murcia, MU, 30120, Spain

Location

Related Publications (22)

• Abel J. Compassionate communities and end-of-life care. Clin Med (Lond). 2018 Feb;18(1):6-8. doi: 10.7861/clinmedicine.18-1-6.

  PMID: 29436431 BACKGROUND

• Kellehear, A. Lowton, Karen. Compassionate Cities. Public Health and End of Life Care. Sociology of health & illness Volume: 30 Issue 1 (2008) ISSN: 0141-9889

  BACKGROUND

• Abel J, Bowra J, Walter T, Howarth G. Compassionate community networks: supporting home dying. BMJ Support Palliat Care. 2011 Sep;1(2):129-33. doi: 10.1136/bmjspcare-2011-000068.

  PMID: 24653223 BACKGROUND

• Vanderstichelen S. Palliative care volunteering: Pressing challenges in research. Palliat Med. 2022 Apr;36(4):564-566. doi: 10.1177/02692163221089483. Epub 2022 Mar 31. No abstract available.

  PMID: 35360995 BACKGROUND

• Soderhamn U, Flateland S, Fensli M, Skaar R. To be a trained and supported volunteer in palliative care - a phenomenological study. BMC Palliat Care. 2017 Mar 14;16(1):18. doi: 10.1186/s12904-017-0193-0.

  PMID: 28288598 BACKGROUND

• Chambers E, Gardiner C, Thompson J, Seymour J. Patient and carer involvement in palliative care research: An integrative qualitative evidence synthesis review. Palliat Med. 2019 Sep;33(8):969-984. doi: 10.1177/0269216319858247. Epub 2019 Jun 28.

  PMID: 31250702 BACKGROUND

• Hasson N, Urtaran-Laresgoiti M, Nuno-Solinis R, Moreno I, Espiau G, Grajales M, Fonseca J. Community Based Participatory Research For The Development of a Compassionate Community: The Case of Getxo Zurekin. Int J Integr Care. 2022 Jan 17;22(1):2. doi: 10.5334/ijic.5707. eCollection 2022 Jan-Mar.

  PMID: 35087351 BACKGROUND

• Librada-Flores S, Nabal-Vicuna M, Forero-Vega D, Munoz-Mayorga I, Guerra-Martin MD. Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review. Int J Environ Res Public Health. 2020 Aug 28;17(17):6271. doi: 10.3390/ijerph17176271.

  PMID: 32872244 BACKGROUND

• Dumont K, Marcoux I, Warren E, Alem F, Alvar B, Ballu G, Bostock A, Cohen SR, Daneault S, Dube V, Houle J, Minyaoui A, Rouly G, Weil D, Kellehear A, Boivin A. How compassionate communities are implemented and evaluated in practice: a scoping review. BMC Palliat Care. 2022 Jul 20;21(1):131. doi: 10.1186/s12904-022-01021-3.

  PMID: 35854292 BACKGROUND

• Bakelants H, Vanderstichelen S, Chambaere K, Van Droogenbroeck F, De Donder L, Deliens L, Dury S, Cohen J. Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. Palliat Med. 2023 Feb;37(2):291-301. doi: 10.1177/02692163221146589. Epub 2022 Dec 28.

  PMID: 36576313 BACKGROUND

• Zarco Colón, J., Ramasco Gutiérrez, M., Pedraz Marcos, A., & Palmar Santos, A. M. (2019). Investigación cualitativa en salud (Vol. 58). CIS.

  BACKGROUND

• Ivankova, N. (2017). Applying mixed methods in community-based participatory action research: a framework for engaging stakeholders with research as a means for promoting patient-centredness. Journal of Research in Nursing, 22 (4), 282-294.

  BACKGROUND

• Ivankova, N., & Wingo, N. (2018). Applying mixed methods in actions research: methodological potentials and advantages. American Behavioral Scientist, 62(7), 978-997.

  BACKGROUND

• Farquhar MC, Ewing G, Booth S. Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliat Med. 2011 Dec;25(8):748-57. doi: 10.1177/0269216311417919. Epub 2011 Aug 1.

  PMID: 21807749 BACKGROUND

• Fabregues S, Hong QN, Escalante-Barrios EL, Guetterman TC, Meneses J, Fetters MD. A Methodological Review of Mixed Methods Research in Palliative and End-of-Life Care (2014-2019). Int J Environ Res Public Health. 2020 May 29;17(11):3853. doi: 10.3390/ijerph17113853.

  PMID: 32485830 BACKGROUND

• Tashakkori A, Teddlie C. (2012). Utilizing mixed-methods in psychological research. Weiner, I, Schinka JA, Velicer WF. Handbook of Psychology, Research Methods in Psychology. (N.º 2 edición. (19 octubre 2012). Wiley.

  BACKGROUND

• Kemmis S, McTaggart R, Nixon R. The action research planner: Doing critical participatory action research. The Action Research Planner: Doing Critical Participatory Action Research. 2014. 1-200 p.

  BACKGROUND

• Chang, Fresco, & Green. The Development and Validation of the Compassion of Others' Lives Scale (The COOL Scale). International Journal of Humanities and Social Science. 2014; 4 (5): 33-42.

  BACKGROUND

• Klos, M. C., & Lemos, V. N. (2018). Adaptación y validación de un instrumento para evaluar el constructo compasión. Revista Evaluar, 18(2), 31-44. Recuperado de https://revistas.unc.edu.ar/index.php/revaluar

  BACKGROUND

• Tomas-Sabado J, Gomez-Benito J. Psychometric properties of the Spanish form of Templer's Death Anxiety Scale. Psychol Rep. 2002 Dec;91(3 Pt 2):1116-20. doi: 10.2466/pr0.2002.91.3f.1116.

  PMID: 12585522 BACKGROUND

• Armas-Arraez MM, Alegre-De la Rosa O, Gutierrez-Barroso J. International Journal of Developmental and Educational Psychology. INFAD Revista de Psicología, Nº1 - Volumen 2, 2021. pp:83-96

  BACKGROUND

• Abad Corpa E, Delgado Hito P, Cabrero García J. La investigación-acción-participativa: Una forma de investigar en la práctica enfermera. Investig y Educ en Enfermería. 2010;28(3):464-74.

  BACKGROUND

Related Links

• World Health Organization (WHO) palliative care, facts and figures

MeSH Terms

Conditions

Necrophobia; Adolescent Behavior

Interventions

Surveys and Questionnaires

Condition Hierarchy (Ancestors)

Behavior

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Eva Abad-Corpa, PhD

  Instituto Murciano de Investigación Biosanitaria

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: CROSS SECTIONAL
• Target Duration: 3 Years
• Sponsor Type: OTHER GOV
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Head of Advanced Nursing Care Group.

Study Record Dates

• First Submitted: March 7, 2024
• First Posted: March 15, 2024
• Study Start: September 1, 2024
• Primary Completion (Estimated): December 1, 2026
• Study Completion (Estimated): December 1, 2026
• Last Updated: June 19, 2025

Record last verified: 2025-06

Locations

ES (1)