- Merel Van Klinken (Amsterdam, Netherlands)
Cultural determinants of end of life
- Gulcan Bagcivan (Istanbul, Turkey)
Gero-oncology integrative view on palliative care
- Wendy H. Oldenmenger (Rotterdam, Netherlands)
Navigating parental cancer when a mum or dad is at end of life
- Cherith J. Semple (Dundonald, United Kingdom)
CN24 - The perceptions of healthcare professionals on the provision of palliative and end-of-life care in prisons
- Grigorios Kotronoulas (Glasgow, United Kingdom)
Abstract
Background
The health of incarcerated individuals is worse than the general population. As a result, they are at greater risk of developing life-limiting and chronic conditions, which require palliative and potentially end-of-life care. Understanding healthcare professionals’ perceptions of challenges and practicalities around providing palliative and end-of-life care in prisons is key to advance the state of services.
Methods
Three databases were searched (CINAHL, EMBASE and MEDLINE) from 2011 to 2021. The PRISMA reporting guideline and Joanna Briggs Institute methodological guideline informed the searches. Search terms included ‘healthcare professionals’, ‘palliative’, ‘end of life care’, and accounted for differences in terminology, e.g. ‘prisons’ (UK) and ‘correctional facilities’ (USA). Critical appraisal of methodological quality and narrative synthesis of findings were conducted.
Results
853 records were retrieved and screened. Six qualitative studies were retained, which were published between 2015 and 2021 in the UK (n=2), Australia (n=1), France (n=1) and USA (n=2). Barriers (compassionate release, the presence of prison staff, mistrust between HCPs and incarcerated individuals, the prison system and HCPs being unsure of the scope of their practice), facilitators (specialist facilities and compassionate release, training and education, and technology) and opportunities (education, development of policy and guidelines, utilising available resources and prison volunteers) for the provision of palliative and end-of-life care were found. The reviewed research was of reasonably good quality and fairly credible, with clear implications for practice.
Conclusions
Barriers to palliative and end-of-life care in prisons have yet to be resolved. Specialist and general training for healthcare professionals is recommended for future practice. Revision and implementation of policies, such as allowing for healthcare professionals time with patients without prison officers present, the process of compassionate leave being simpler, and an unlocked door policy at the end-of-life are recommended.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
CN25 - Bereaved parents’ experience of adapting to life after the death of a parent with cancer who has dependent children
- Jeffrey R. Hanna (Jordanstown, United Kingdom)
Abstract
Background
Bereavement is often a period of major transition for individuals. Where a parent of dependent children has died with cancer, the bereaved parent is navigating their own and each of their children’s grief. Dependent children are more susceptive to adverse psychological reactions following the death of a parent. However appropriate familial support can mediate for such reactions, especially that of the bereaved parent. Through the lens of the bereaved parent, the aim of this study is to explore bereaved parents’ experience of adapting to life when a parent of dependent children has died with cancer.
Methods
23 in-depth interviews were conducted with bereaved parents when a co-parent died with cancer. Data were analysed using Braun and Clake’s reflexive thematic analysis approach.
Results
Bereaved parents highlighted the children as their key focus after the death of a parent with cancer, as they effortfully strived to be a ‘perfect parent’. While some bereaved parents struggled to adapt to the role as a sole parent, others described the importance of maximising social networks to help with the practical aspects of parenting. However, most bereaved parents described intense feelings of loneliness as they navigated parenting alone. To help navigate this post-bereavement period, bereaved parents considered it important for their children to openly talk about the deceased parent. Also, meeting others who have experienced similar situations was helpful for the bereaved parent and children, providing hope for the future. Results are discussed under two themes: (1) adapting to life without the parent, and (2) keeping the memory alive of the parent that died with cancer.
Conclusions
The bereaved parent is central to helping their children navigate grief following the death of a co-parent with cancer. Bereaved parents should be reassured that showing emotion in front of the children is healthy and could facilitate better grief experiences for the whole family. Bereaved parents should be encouraged to practice self-care when a co-parent has died from cancer so they can appropriately meet the needs of their children.
Legal entity responsible for the study
The authors.
Funding
Department for Economy, UK.
Disclosure
All authors have declared no conflicts of interest.
CN27 - Exploring the quality of dying and death of patients with cancer undergoing palliative care (PC)
- STYLIANOS KATSARAGAKIS (Athens, Greece)
Abstract
Background
The aim was to explore the quality of dying and death of patients with cancer undergoing PC in a Palliative Care Unit in Athens, as perceived by bereaved caregivers.
Methods
Descriptive cross-sectional design. A convenience sample of 52 caregivers (RR: 66.7%) of patients with cancer who died, while receiving PC were recruited from March to June 2021. Study selection criteria: a) patients admitted at least one week before death and death in the period up to one year before data collection, b) caregivers determined by patients as their primary caregiver, with no known psychiatric disorder. Patients’ demographic, clinical characteristics and the last score of functional status assessed by Palliative Performance Scale-PPS, (scored 100-0%) were taken by files retrospectively. Caregivers who consented, filled the translated in Greek Quality of Dying and Death (QODD) questionnaire, which is consisted of 31 questions graded on a scale of 0 (terrible experience) to 10 (almost perfect experience), divided in 6 domains: Whole Person Concerns (WPC), Symptoms and Personal Care (SPC), Preparation for Death (PD) Moment of Death (MD), Family (F), Treatment Preferences (TP). Total score is a percent %, with higher rates indicating a better quality of death. The minimum level of statistical significance was set up to 95%.
Results
The majority of patients were women (69.2%), mean age 75.18 (± 12.25) years old, lung cancer diagnosis (28.8%) and poor mean PPS 26.92% (± 15.66). Caregivers were mainly women (67.3%), mean age 53.71 (± 13.01) years old. The mean Overall QODD score was 65.86 (±8.83), described as “neither good nor bad” experience. The MD domain had a high mean score (80.13 ± 14.1). The F and WPC had 73.83 ± 11.12 and 72.18 ± 8.83 respectively. Lower scores were in TP (68.91 ± 13.63) and PD (63.62 ± 10.15), with lowest in SPC (49.07 ± 15.39). Total QODD score was moderately positively correlated with the caregiver’s age (p=0.029, rho=0.385) and negatively correlated with the patient's PPS (rho = -0.41, p = 0.019).
Conclusions
Overall quality of dying and death of patients with cancer receiving PC was described as “moderate to good”. Despite the study limitations, results are in agreement with literature. Further study is needed to explore factors affecting good death.
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.
CN23 - The end of life – a topic we avoid: The Croatian National Cancer Patient Experience Survey
- Andreja Sajnic (Zagreb, Croatia)
Abstract
Background
Croatian Coalition of Associations in Healthcare designed an online questionnaire with aim to determine patient experience relating to the pathways from diagnosis to the oncology treatment. Initiative was supported by national patient’s oncology associations from twelfth Central and Eastern Europe countries.
Methods
All sixty-nine questions were proposed and formulated by patient representatives and translated on native language participating countries. Only registered members (subjects with confirmed cancer diagnosis) of the national patient oncology associations in each participating country were allowed to access and complete the online questionnaire (n=16,458). Data were collected between Oct. 2018 to Feb. 2019. The Croatian Coalition of Health Associations enabled the authors of this paper to use the collected data from a sample of the Croatian population (n=2,460) for the purpose of publication.
Results
Only 76.30% (n=1,877) participants wanted to answer questions in section relate to issues about death and dying, including thoughts and feelings about their own death. The study revealed: (i) 41.67% participant strongly agree that talking about death and dying is something that people don't like to talk about, (ii) 9.27% participants constantly and 23.58% often have thoughts about the possibility to die from cancer, (iii) 5.08% participants constantly and 13.5% often had fear od death, (iv) the highest positive response with which people they share their thoughts or feelings about death or dying are: partners (38.17%), family (34.11%) and friends (32.52%), (v) 43.09% responded that they would like die at home if they will have right care and support, and (vi) 69.23% of participants would like at the end of their life that their caregivers have support.
Conclusions
Based on the obtained data death and dying are still topics that are avoided in Croatian subgroup. The results oblige us that all members of the team caring for cancer patients must be proactive in providing support and encouragement not only during cancer treatment but also in the end of life.The results oblige us that all members of the team caring for cancer patients must be proactive in providing support and encouragement not only during cancer treatment but also in the end of life.
Editorial acknowledgement
We thank Mr. Ivica Belina, President of the Croatian Coalition of Health Associations, for giving us permission to use the data.
Legal entity responsible for the study
Croatian Coalition of Associations in Healthcare.
Funding
Has not received any funding.
Disclosure
All authors have declared no conflicts of interest.