Publicação
Variations in the Access and Outcomes of Bereavement Support for Family Carers of Cancer Patients
| Resumo: | Introduction: Cancer is the leading cause of death in the European Union and worldwide, and will be the main driver of palliative care needs in the future, with many deaths following prolonged care trajectories. For some, caregiving extends into bereavement. Key questions remain about who requires bereavement support, when, and what kind. This thesis examined variations in access to and outcomes of formal bereavement support for family carers of cancer patients. Its objectives were: to determine levels of need for, access to and helpfulness of formal bereavement support among family carers at population level; to identify groups who do not access or find support unhelpful; to examine relationships between access, caregiving burden and receipt of palliative care; and to develop and test a survey methodology for measuring access and outcomes of bereavement support at service level. Methodology: Two studies were conducted. Study 1 was a secondary analysis of QUALYCARE, a population-based mortality follow-back study with bereaved relatives of adults who died from cancer in London (2009–2010). Multivariate logistic regression (backwards likelihood-ratio model) was used to examine the extent to which caregiving burden and palliative care explained use or non-use of bereavement support, adjusting for confounders identified through bivariate analysis and literature. Sensitivity analyses compared variable selection methods (backward, forward) and assessed differences between cases included and excluded due to missing data. Study 2 was a cross-sectional service-based pilot with cognitive interviews among bereaved relatives (13–19 months post-death) of cancer patients at a Lisbon hospital. Participants were consecutively recruited via a palliative care service. Analyses aimed to identify survey response errors and sources of distress. Deductive coding (Tourangeau’s Cognitive Model; Feinstein’s Sensibility Framework) and inductive coding of emergent themes were applied. NVivo matrix queries explored links between cognitive processes, survey experiences, and grief intensity.Results: In Study 1, 523 family carers participated (66% women, mean age 59, 43% spouses/partners, 41% adult children); 149 (28.8%) used formal bereavement support (73.8% women, mean age 60, 55% spouses/partners, 36% adult children). Bivariate analyses confirmed expected associations, but most were not retained in multivariate models. Significant factors were presence at death (AOR use = 1.769, 95% CI = 1.044–2.994; AOR non-use = 0.566, 95% CI = 0.334–0.958) and grief intensity (AOR use = 1.036, 95% CI = 1.015–1.058; AOR non-use = 0.965, 95% CI = 0.945–0.985). Only 10% (n=15) rated bereavement support as unhelpful, too few for further analysis. In Study 2, 20 bereaved participants (14 women, median age 59, range 28–76; 8 parental, 7 partner, 3 sibling, 2 adult child losses) were interviewed 16–19 months post-death. Errors, mostly related to comprehension, were identified and corrected. Survey sections were reordered to reduce emotional burden and improve completion. Participation was distressing yet considered meaningful and relevant for improving bereavement support. Data demonstrated the survey’s ability to capture variability across key dimensions. As in Study 1, helpfulness ratings showed little variation: all rated support received as very or extremely helpful.Conclusion: Analysis of population-level data highlighted how subjective and situational factors, especially grief intensity and presence at death, shape access to formal bereavement support. These findings stress the importance of continuity between caregiving and bereavement trajectories. Further research is needed into the complex interplay of caregiving, bereavement and access to services. The developed survey methodology offers a practical tool for improving bereavement support while safeguarding participants’ well-being. The pilot demonstrated feasibility for measuring variations in access and outcomes at service level, capturing key heterogeneity, and laying the foundation for future large-scale research. |
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| Autores principais: | Brito, Maja Furlan de |
| Assunto: | cuidadores familiares cuidados paliativos luto qualidade de cuidados de saúde serviço de oncologia bereavement caregivers oncology service palliative care quality of health care |
| Ano: | 2025 |
| País: | Portugal |
| Tipo de documento: | tese de doutoramento |
| Tipo de acesso: | acesso aberto |
| Instituição associada: | Universidade de Coimbra |
| Idioma: | inglês |
| Origem: | Estudo Geral - Universidade de Coimbra |
| Resumo: | Introduction: Cancer is the leading cause of death in the European Union and worldwide, and will be the main driver of palliative care needs in the future, with many deaths following prolonged care trajectories. For some, caregiving extends into bereavement. Key questions remain about who requires bereavement support, when, and what kind. This thesis examined variations in access to and outcomes of formal bereavement support for family carers of cancer patients. Its objectives were: to determine levels of need for, access to and helpfulness of formal bereavement support among family carers at population level; to identify groups who do not access or find support unhelpful; to examine relationships between access, caregiving burden and receipt of palliative care; and to develop and test a survey methodology for measuring access and outcomes of bereavement support at service level. Methodology: Two studies were conducted. Study 1 was a secondary analysis of QUALYCARE, a population-based mortality follow-back study with bereaved relatives of adults who died from cancer in London (2009–2010). Multivariate logistic regression (backwards likelihood-ratio model) was used to examine the extent to which caregiving burden and palliative care explained use or non-use of bereavement support, adjusting for confounders identified through bivariate analysis and literature. Sensitivity analyses compared variable selection methods (backward, forward) and assessed differences between cases included and excluded due to missing data. Study 2 was a cross-sectional service-based pilot with cognitive interviews among bereaved relatives (13–19 months post-death) of cancer patients at a Lisbon hospital. Participants were consecutively recruited via a palliative care service. Analyses aimed to identify survey response errors and sources of distress. Deductive coding (Tourangeau’s Cognitive Model; Feinstein’s Sensibility Framework) and inductive coding of emergent themes were applied. NVivo matrix queries explored links between cognitive processes, survey experiences, and grief intensity.Results: In Study 1, 523 family carers participated (66% women, mean age 59, 43% spouses/partners, 41% adult children); 149 (28.8%) used formal bereavement support (73.8% women, mean age 60, 55% spouses/partners, 36% adult children). Bivariate analyses confirmed expected associations, but most were not retained in multivariate models. Significant factors were presence at death (AOR use = 1.769, 95% CI = 1.044–2.994; AOR non-use = 0.566, 95% CI = 0.334–0.958) and grief intensity (AOR use = 1.036, 95% CI = 1.015–1.058; AOR non-use = 0.965, 95% CI = 0.945–0.985). Only 10% (n=15) rated bereavement support as unhelpful, too few for further analysis. In Study 2, 20 bereaved participants (14 women, median age 59, range 28–76; 8 parental, 7 partner, 3 sibling, 2 adult child losses) were interviewed 16–19 months post-death. Errors, mostly related to comprehension, were identified and corrected. Survey sections were reordered to reduce emotional burden and improve completion. Participation was distressing yet considered meaningful and relevant for improving bereavement support. Data demonstrated the survey’s ability to capture variability across key dimensions. As in Study 1, helpfulness ratings showed little variation: all rated support received as very or extremely helpful.Conclusion: Analysis of population-level data highlighted how subjective and situational factors, especially grief intensity and presence at death, shape access to formal bereavement support. These findings stress the importance of continuity between caregiving and bereavement trajectories. Further research is needed into the complex interplay of caregiving, bereavement and access to services. The developed survey methodology offers a practical tool for improving bereavement support while safeguarding participants’ well-being. The pilot demonstrated feasibility for measuring variations in access and outcomes at service level, capturing key heterogeneity, and laying the foundation for future large-scale research. |
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