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“Keeping the Light On”: A Qualitative Study on Hope Perceptions at the End of Life in Portuguese Family Dyads

Author

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  • Carlos Laranjeira

    (School of Health Sciences, Polytechnic of Leiria, Campus 2, Morro do Lena, Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal
    Centre for Innovative Care and Health Technology (ciTechCare), Rua de Santo André—66-68, Campus 5, Polytechnic of Leiria, 2410-541 Leiria, Portugal
    Research in Education and Community Intervention (RECI I&D), Piaget Institute, 3515-776 Viseu, Portugal)

  • Maria Anjos Dixe

    (School of Health Sciences, Polytechnic of Leiria, Campus 2, Morro do Lena, Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal
    Centre for Innovative Care and Health Technology (ciTechCare), Rua de Santo André—66-68, Campus 5, Polytechnic of Leiria, 2410-541 Leiria, Portugal)

  • Isabel Semeão

    (Hospital Palliative Care Team, Hospital Center of Leiria-Hospital de Santo André, R. de Santo André, 2410-197 Leiria, Portugal)

  • Sara Rijo

    (Hospital Palliative Care Team, Hospital Center of Leiria-Hospital de Santo André, R. de Santo André, 2410-197 Leiria, Portugal)

  • Catarina Faria

    (Hospital Palliative Care Team, Hospital Center of Leiria-Hospital de Santo André, R. de Santo André, 2410-197 Leiria, Portugal
    Palliative Care Unit, Hospital Center of Leiria-Hospital Bernardino Lopes de Oliveira, Rua do Hospital–Apartado 70, 2460-051 Alcobaça, Portugal)

  • Ana Querido

    (School of Health Sciences, Polytechnic of Leiria, Campus 2, Morro do Lena, Alto do Vieiro, Apartado 4137, 2411-901 Leiria, Portugal
    Centre for Innovative Care and Health Technology (ciTechCare), Rua de Santo André—66-68, Campus 5, Polytechnic of Leiria, 2410-541 Leiria, Portugal
    Center for Health Technology and Services Research (CINTESIS), NursID, University of Porto, 4200-450 Porto, Portugal)

Abstract

Hope performs an important role in how patients and their families cope with suffering and stressful events. To better inform practice and theory on hope, palliative care research should include both patients and their family carers, given their strong interdependence. The aim of this study was to explore how hope is experienced in dyads formed by end-of-life patients and their family carers. In this qualitative study, data were collected by in-depth interviews with seven Portuguese family dyads. Analysis followed a thematic analysis approach. The analysis of the interviews shed light on the importance of hope for all participants, and the challenges involved. Family dyads noted several barriers and facilitators to perceptions of hope. Barriers to hope included limitations imposed by illness, feelings of anguish and helplessness, and poor communication with clinicians. Hope facilitators included supportive others, positive thinking and sense of humour, connection with nature, faith in religion and science, and a sense of compassion with others and altruism. Given the multidimensional scope of hope, the main challenge for family dyads is to look beyond the disease itself. Thus, palliative care teams should be encouraged to support and foster realistic hope, helping families prepare for death, in the context of advanced cancer.

Suggested Citation

  • Carlos Laranjeira & Maria Anjos Dixe & Isabel Semeão & Sara Rijo & Catarina Faria & Ana Querido, 2022. "“Keeping the Light On”: A Qualitative Study on Hope Perceptions at the End of Life in Portuguese Family Dyads," IJERPH, MDPI, vol. 19(3), pages 1-12, January.
  • Handle: RePEc:gam:jijerp:v:19:y:2022:i:3:p:1561-:d:738352
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    References listed on IDEAS

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    1. Louise Bramley & Milika Matiti, 2014. "How does it really feel to be in my shoes? Patients' experiences of compassion within nursing care and their perceptions of developing compassionate nurses," Journal of Clinical Nursing, John Wiley & Sons, vol. 23(19-20), pages 2790-2799, October.
    2. Bożena Baczewska & Bogusław Block & Beata Kropornicka & Antoni Niedzielski & Maria Malm & Agnieszka Zwolak & Marta Makara-Studzińska, 2019. "Hope in Hospitalized Patients with Terminal Cancer," IJERPH, MDPI, vol. 16(20), pages 1-10, October.
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    Cited by:

    1. Ana Querido & Carlos Laranjeira, 2023. "Hope-Based Program for Portuguese Outpatients with Advanced Chronic Illness in a Community Setting: A Randomized Control Trial," IJERPH, MDPI, vol. 20(2), pages 1-14, January.
    2. Eleandro Prado & Sonia Marcon & Luciana Kalinke & Marcelle da Silva & Mayckel Barreto & Angelica Takemoto & Marcela Birolim & Carlos Laranjeira, 2022. "Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study," IJERPH, MDPI, vol. 19(20), pages 1-16, October.

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