Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting

Zavagli, Veronica; Raccichini, Melania; Ostan, Rita; Ercolani, Giacomo; Franchini, Luca; Varani, Silvia; Pannuti, Raffaella

doi:10.1007/s00520-021-06655-2

Cited by 13 publications

(8 citation statements)

References 43 publications

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“…The efforts of relatives (family and others, such as friends) are important in providing palliative care (PC) at home [1][2][3]. In this context, relatives take great responsibility, face many challenges and are at an increased risk of poor physical and mental health [2,[4][5][6].…”

Section: Introductionmentioning

confidence: 99%

“…General PC is usually provided by HPs with basic knowledge in PC, without it being their main activity [13]. Previous research describes challenges for relatives caring for a person receiving PC at home [3,6,8]. Wang et al [20] highlighted that relatives in different healthcare settings demonstrate different levels of unmet needs, but the highest level is reported in the home setting.…”

Section: Introductionmentioning

confidence: 99%

“…Support for relatives is not optimal, neither before nor after a patient's death [15,16,21], and there are deficiencies in the support provided to relatives when PC is provided at home [14,22]. Further research on relative's unmet support needs in the home PC setting is needed [3], and in general PC at home in Sweden, support for relatives before and after a patient's death needs to be improved [23]. Therefore, this study aimed to describe relative's suggestions to improve the support from HPs before and after a patient's death in general PC at home.…”

Section: Introductionmentioning

confidence: 99%

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Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study

Midlöv,

Lindberg,

Skär

2024

Scandinavian Caring Sciences

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IntroductionThe efforts of relatives in providing palliative care (PC) at home are important. Relatives take great responsibility, face many challenges and are at increased risk of poor physical and mental health. Support for these relatives is important, but they often do not receive the support they need. When PC is provided at home, the support for relatives before and after a patient's death must be improved. This study aimed to describe relatives' suggestions to improve the support from health professionals (HPs) before and after a patient's death in general PC at home.MethodsThis study had a qualitative descriptive design based on the data from open‐ended questions in a survey collected from the Swedish Register of Palliative Care. The respondents were adult relatives involved in general PC at home across Sweden. The textual data were analysed using thematic analysis.ResultsThe analysis identified four themes: (1) seeking increased access to HPs, (2) needing enhanced information, (3) desiring improved communication and (4) requesting individual support.ConclusionsIt is important to understand and address how the support to relatives may be improved to reduce the unmet needs of relatives. The findings of this study offer some concrete suggestions for improvement on ways to support relatives. Further research should focus on tailored support interventions so that HPs can provide optimal support for relatives before and after a patient's death when PC is provided at home.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study

Midlöv,

Lindberg,

Skär

2024

Scandinavian Caring Sciences

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“…The unmet needs of patients can increase the level of caregiver burden ( 4 , 18 ), leading caregivers themselves to experience unmet needs. Caregivers' unmet needs do not only decrease their own QOL, but also affect patients' health outcomes negatively ( 19 – 21 ).…”

Section: Introductionmentioning

confidence: 99%

Early palliative care for solid and blood cancer patients and caregivers: Quantitative and qualitative results of a long-term experience as a case of value-based medicine

Bigi

Borelli

Potenza

et al. 2023

Front. Public Health

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IntroductionCancer patients and their caregivers have substantial unmet needs, that negatively impact the clinical outcome and quality of life. However, interventions aimed to address such needs are still suboptimal, failing to answer the recent healthcare call for the adoption of value-based models of care. In the case of incurable oncologic and hematologic cancers, a value-based model of care should plan advanced care on patients' needs and include the quality of death as an outcome. The integration of early palliative care into standard oncologic care for patients with advanced cancers represents a recent innovative model of assistance whose benefits for patients and caregivers are now widely recognized. The key elements underlying the reasons behind these benefits are the multidisciplinary collaboration (teamwork), an honest and empathetic communication between the early palliative care team, the patient, and the caregiver (rapport building), and the ability to detect changes in the physical/psychosocial wellbeing of the patient, along the whole disease trajectory (constant monitoring).MethodsThis community case study documents the quantitative and qualitative results of a long term clinical and research experience in delivering early palliative care service to address both solid and blood cancer patients' and their primary caregivers' needs.ResultsData showed decreased use of chemotherapy, blood transfusions and referral to intensive care units near the end of life; increased life expectancy; improved symptom burden and mood; increased frequency of goals-of-care and advanced care planning conversations. Hope perception among bereaved caregivers was associated with resilience and realistic expectations raising from honest communication with the early palliative care team and appreciation toward the model. Patients and caregivers perceived the possibility of a good death as realistic and not as an unlikely event as it was for patients and caregivers on standard oncologic care only. Gratitude expressions toward the model and the team were frequently identified in their reports and positively associated with communication and spirituality.ConclusionsThese findings are discussed in the context of an updated literature review regarding value-based care and suggest that early palliative care integrated into standard oncology care may be considered as an effective model of value-based care.

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“…Many informal caregivers do not use these healthcare options. For instance, because they are unaware or unconcerned that their own HRQOL is being compromised, they are unaware of the available healthcare resources, they do not have access to these resources at the moment they need them, or they may feel that focusing at their own needs is at the expense of the patients' needs [16][17][18][19][20][21]. Delivering interventions through the Internet may help to reach a greater number of informal caregivers [17,[22][23][24].…”

Section: Introductionmentioning

confidence: 99%

Reach and efficacy of the eHealth application Oncokompas, facilitating partners of incurably ill cancer patients to self-manage their caregiver needs: a randomized controlled trial

Schuit

Rienks

Hooghiemstra

et al. 2022

Support Care Cancer

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Purpose Many partners of incurably ill cancer patients experience caregiver burden. The eHealth application “Oncokompas” supports these partners to manage their caregiver needs and to find optimal supportive care for themselves. The aim of this randomized controlled trial (RCT) was to investigate the reach of Oncokompas and its efficacy on caregiver burden, self-efficacy, and health-related quality of life (HRQOL). Methods The reach was estimated based on eligibility, participation rate, and an evaluation of the recruitment process. Efficacy on caregiver burden was measured using the Caregiver Strain Index + (CSI +). Secondary outcomes were self-efficacy (General Self-Efficacy Scale (GSE)) and HRQOL (EQ-5D VAS). Assessments were scheduled at baseline, 2 weeks after randomization and 3 months after baseline. Linear mixed models were used to compare longitudinal changes between the experimental and control group from baseline to the 3-month follow-up. Results The reach, in terms of eligibility and participation rate, was estimated at 83–91%. Partners were most likely reached via palliative care consultants, patient organizations, and palliative care networks. In the one-and-a-half-year recruitment period and via the 101 organizations involved, 58 partners were included. There were no significant effects of Oncokompas on caregiver burden, self-efficacy, or HRQOL. Conclusion The reach of Oncokompas among interested individuals was high, but the difficulties that were encountered to include partners suggest that the reach in real life may be lower. This study showed no effect of Oncokompas on caregiver burden, self-efficacy, or HRQOL in partners of incurably ill cancer patients. Relevance The results of this study may be used in the process of developing, efficacy testing, and implementing eHealth applications for caregivers of incurably ill cancer patients. Trial registration Netherlands Trial Register identifier: NTR7636/NL7411. Registered on November 23, 2018 (https://www.trialregister.nl/).

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Identifying the prevalence of unmet supportive care needs among family caregivers of cancer patients: an Italian investigation on home palliative care setting

Cited by 13 publications

References 43 publications

Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study

Relative's suggestions for improvements in support from health professionals before and after a patient's death in general palliative care at home: A qualitative register study

Early palliative care for solid and blood cancer patients and caregivers: Quantitative and qualitative results of a long-term experience as a case of value-based medicine

Reach and efficacy of the eHealth application Oncokompas, facilitating partners of incurably ill cancer patients to self-manage their caregiver needs: a randomized controlled trial

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