scholarly journals Corporeidade de adoecidos oncológicos em cuidados paliativos domiciliares: a vivência de familiares cuidadores / Corporeality of oncological patients in palliative home care: the experience of family caregivers

2018 ◽  
Vol 10 (2) ◽  
pp. 423
Author(s):  
Raisa Silva Martins ◽  
Antonio Jorge Silva Correa Júnior ◽  
Mary Elizabeth de Santana ◽  
Lucialba Maria Silva dos Santos
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Palliative Home Care ◽  
Oncological Patients

Objetivo: Descrever a vivência de cuidadores no que concerne aos cuidados às dimensões do corpo de adoecidos em cuidados paliativos domiciliares. Método: Estudo do tipo descritivo com abordagem qualitativa por intermédio da Análise de Conteúdo de Bardin, realizado com cuidadores domiciliares com familiares cadastrados pelo Serviço de Atendimento Domiciliar de um Centro de Assistência de Alta Complexidade em Oncologia. Resultados e Discussão: A população estudada compreendeu 10 cuidadoras que recebiam visitas domiciliares. A partir da análise dos códigos e conteúdos das mensagens, foram categorizadas unidades dos discursos em dois eixos. São eles: “Corporeidade: Cuidados vivenciados que atendem as Necessidades Orgânicas” e “Corporeidade: Cuidados Vivenciados que atendem as necessidades Psicoemocionais, Psicoespirituais e Ambientais”. Conclusão: o cuidado está compartimentalizado para os familiares que contrapõem os préstimos ao corpo social e préstimos ao corpo físico, recordando primeiramente do último.

scholarly journals Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention.Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks.Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them.Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care

2019 ◽  
Vol 22 (12) ◽  
pp. 1530-1535 ◽  
Author(s):  
Maja Holm ◽  
Kristofer Årestedt ◽  
Anette Alvariza
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Palliative Home Care

scholarly journals Higher levels of unmet support needs in spouses are associated with poorer quality of life – a descriptive cross-sectional study in the context of palliative home care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Maria Norinder ◽  
Kristofer Årestedt ◽  
Susanne Lind ◽  
Lena Axelsson ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Home Care ◽  
Family Caregivers ◽  
Emotional Health ◽  
Support Needs ◽  
Cross Sectional ◽  
Palliative Home Care ◽  
Life Threatening Illness ◽  
Life Threatening

Abstract Background Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers’ support needs and quality of life when caring for a spouse receiving specialized palliative home care. Methods A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness – Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. Results Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient’s life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient’s condition, and the family caregiver’s own physical and emotional health. Conclusion With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers’ QoL by revealing their problems and concerns. Thus, tailored support is needed.

Gendered Processes in Hospice Palliative Home Care for Seniors With Cancer and Their Family Caregivers

2015 ◽  
Vol 26 (7) ◽  
pp. 907-920 ◽  
Author(s):  
Nisha Sutherland ◽  
Catherine Ward-Griffin ◽  
Carol McWilliam ◽  
Kelli Stajduhar
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Palliative Home Care

scholarly journals Impact on place of death in cancer patients: a causal exploration in southern Switzerland

2020 ◽  
Author(s):  
Heidi Kern ◽  
Giorgio Corani ◽  
David Huber ◽  
Nicola Vermes ◽  
Marco Zaffalon ◽  
...  
Keyword(s):  
Home Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Patient Preference ◽  
End Of Life Care ◽  
Place Of Death ◽  
Life Care ◽  
Palliative Home Care ◽  
At Home

Abstract Background Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods A data mining algorithm (a classifier) and a causal probabilistic model (a credal network) for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family’s preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient’s preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion Concerning death at home, open communication about dying is essential. Furthermore, for the patient preference for home care to be respected, the family’s decision for the last place of care seems key. Early initiation of family-centred palliative care and provision of specialist palliative home care for patients who wish to die at home are suggested. Keywords Cancer; End-of-life care; Palliative Home care; Place of death; Communication; Family caregivers; Patient preference; Bayesian networks; Credal networks; Bayesian classifiers

scholarly journals Is early integration of palliative home care in oncology treatment feasible and acceptable for advanced cancer patients and their health care providers? A phase 2 mixed-methods study.

2020 ◽  
Author(s):  
Naomi Dhollander ◽  
Tinne Smets ◽  
Aline De Vleminck ◽  
Lore Lapeire ◽  
Koen Pardon ◽  
...  
Keyword(s):  
Home Care ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Control Group ◽  
Care Providers ◽  
Advanced Cancer Patients ◽  
Palliative Home Care ◽  
Early Integration

Abstract Background: To support the early integration of palliative home care (PHC) in cancer treatment, we developed the EPHECT intervention and pilot tested it with 30 advanced cancer patients in Belgium using a pre post design with no control group. We aim to determine the feasibility, acceptability and perceived effectiveness of the EPHECT intervention. Methods: Interviews with patients (n=16 of which 11 dyadic with family caregivers), oncologists and GPs (n=11) and a focus group with the PHC team. We further analyzed the study materials and logbooks of the PHC team (n=8). Preliminary effectiveness was assessed with questionnaires EORTC QLQ C-30, HADS and FAMCARE and were filled in at baseline and 12, 18 and 24 weeks. Results: In the interviews after the intervention period, patients reported feelings of safety and control and an optimized quality of life. The PHC team could focus on more than symptom management because they were introduced earlier in the trajectory of the patient. Telephone-based contact appeared to be insufficient to support interprofessional collaboration. Furthermore, some family caregivers reported that the nurse of the PHC team was focused little on them. Conclusion: Nurses of PHC teams are able to deliver early palliative care to advanced cancer patients. However, more attention needs to be given to family caregivers as caregiver and client. Furthermore, the home visits by the PHC team have to be further evaluated and adapted. Lastly, professionals have to find a more efficient way to discuss future care.

Availability as key determinant in the palliative home care setting from the patients’ and family caregivers’ perspectives: A quantitative-qualitative-content analysis approach

2020 ◽  
pp. 1-10
Author(s):  
Kim Dillen ◽  
Melanie Joshi ◽  
Norbert Krumm ◽  
Michaela Hesse ◽  
Holger Brunsch ◽  
...  
Keyword(s):  
Home Care ◽  
Family Caregivers ◽  
Professional Competence ◽  
Factor Model ◽  
Qualitative Content Analysis ◽  
Structured Interview ◽  
Patient Centeredness ◽  
Palliative Home Care ◽  
Sense Of Security ◽  
Three Factor

Abstract Objective A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients’ and family caregivers’ perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. Methods The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. Results One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. Significance of results The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

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