Exploring barriers to assessment of bereavement risk in palliative care: perspectives of key stakeholders

Abstract

BackgroundPalliative care standards advocate support for grieving caregivers, given that some bereaved people fail to integrate their loss, experience ongoing emotional suffering and adverse health outcomes. Research shows that bereavement support tends to be delivered on an ad hoc basis without formal assessment of risk or need. To align support with need, assessment of bereavement risk is necessary. The overall aim is to develop a bereavement risk assessment model, based on a three-tiered public health model, congruent with palliative care bereavement standards for use in palliative care in Western Australia. The specific aim of this phase of the study was to explore the perspectives of key stakeholders and to highlight issues in relation to the practice of bereavement risk assessment in palliative care.MethodsAction research, a cyclical process that involves working collaboratively with stakeholders, was considered as the best method to effect feasible change in practice. The nine participants were multidisciplinary health professionals from five palliative care services, and a bereaved former caregiver. Data were obtained from participants via three 90 min group meetings conducted over five weeks. An inductive thematic analysis approach was used to analyse data following each meeting until saturation was reached, and the research team was satisfied that the themes were congruent with research aims.ResultsExisting measures were found unsuitable to assess bereavement risk in palliative care. Assessment following the patient’s death presented substantial barriers, directing assessment to the pre-death period. Four themes were identified relating to issues in need of consideration to develop a risk assessment model. These were systems of care, encompassing logistics of contact with caregivers; gatekeeping; conflation between caregiver stress, burden and grief; and a way forward.ConclusionsThese group discussions provide a data-driven explanation of the issues affecting bereavement risk assessment in palliative care settings. A number of barriers will need to be overcome before assessment can become routine practice. We recommend the development of a brief, pre-death caregiver self-report measure of bereavement risk that may empower caregivers, lead to early intervention, and allow staff to remain focused on patient care, reducing burden on staff and palliative care services.

Towards a public health approach for palliative care: an action-research study focused on engaging a local community and educating teenagers

“…In fact, although specifically focused on a group of teenagers, our action-research study allowed the implementation of an education program about palliative care to parents and other citizens of the local community. Furthermore, our study used an action-research approach, which is considered both to be a relevant approach in palliative care research and in health education and promotion [27–29, 31–34, 53]. The inclusion of a wide range of instruments and techniques for data collection ensures the validity and reliability of our findings [40–49].…”

“…The latter was fully supported by the reverend who decided to open the education session to the local community. This is aligned with the principles and practices of action-research where the stakeholder participants have an active role in decision-making [31]. …”

“…Action-research seeks to bring together action (the education-intervention program) and reflection (how to make this education-program effective and positive, and how to create knowledge about palliative care among teenagers), theory and practice, in participation with others (teenagers, parents, catechists – i.e., people responsible for the religious education activities at a parish, the community, the educator-researcher) in the pursuit of practical solutions to issues of pressing concern to people [29–31]. This methodological approach is of special relevance in palliative care and education [31–34], particularly in terms of community-based interventions aimed at improving change [34–37].…”

“…This methodological approach is of special relevance in palliative care and education [31–34], particularly in terms of community-based interventions aimed at improving change [34–37]. Following the action-research approach, the education program was tailored to the specific context of its implementation [38].…”

“…The education program and action-research assumed the form of the typical cycle or spiral of action-research [31, 34, 35, 40] and embraced three intertwined stages:a preparatory stage, during which the participating teenagers were invited to write a sentence and/or question about palliative care;the education-intervention stage, i.e., an education session rooted and developed using the sentences/questions written by the teenagers during the preparatory stage;the evaluation stage, during which the participants assessed the overall education program using a questionnaire entailing a set of four dimensions: Organization of the overall education program, Preparatory stage, Education-intervention stage (session), and Evaluation stage (possibility to assess the education program), which were scored on a seven-point Likert scale ranging from 1 = very bad to 7 = very good. This evaluation tool also included two open questions entitled “Additional comments” and “Take-home message” resulting from the education-intervention stage.…”