Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals

Hoffstädt, Hinke E.; Boogaard, Jannie A.; Tam, Marcella C.; Bodegom‐Vos, Leti van; Brinkman-Stoppelenburg, Arianne; Hartog, Iris D.; Linden, Yvette M. van der; Steen, Jenny T. van der

doi:10.1177/10499091221123006

Cited by 4 publications

(1 citation statement)

References 26 publications

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“…Relatives should also be informed of the possibility of using the available cash benefit -financial compensation for a relative who gives up paid work to care for or be with a dying loved one -for the care of closely related persons [12,13]. Although support for relatives is a fundamental component of PC, relatives do not receive the support they need before or after a patient's death [10,[14][15][16][17]. Support for relatives requires improvement [18] and since PC involves a holistic approach to care, the physical, psychological, social and existential needs of both the patient and the relatives should be met, including support for relatives before and after a patient's death [11,19].…”

Section: Introductionmentioning

confidence: 99%

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%

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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Support given by health professionals before and after a patient’s death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care

Mikaelsson Midlöv,

Lindberg,

Sterner

et al. 2023

Pall Supp Care

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Objectives General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient’s death to relatives involved in general PC at home. Methods A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys. Results The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient’s death. The findings also indicated differences in whether relatives received some support before and after a patient’s death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying. Significance of results There is potential for improvements regarding support for relatives, especially after a patient’s death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient’s death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient’s death when general PC is provided at home.

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Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients

White Makinde,

Pitzer,

Benson

et al. 2024

Am J Hosp Palliat Care

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Background Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver’s own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients. Methods Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling. Results A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = −.163, se = .057) when accounting for relevant covariates. Conclusion Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

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Practice of Supporting Family Caregivers of Patients with Life-Threatening Diseases: A Two-phase Study Among Healthcare Professionals

Cited by 4 publications

References 26 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

Support given by health professionals before and after a patient’s death to relatives involved in general palliative care at home in Sweden: Findings from the Swedish Register of Palliative Care

Does Family Functioning Matter? Understanding the Relationship Between Family Interactions and Depressive Symptoms for Caregivers of Cancer Patients

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