Family members' caregiving situations in palliative home care when sitting service is received: The understanding of multiple realities

2013 ◽  
Vol 12 (6) ◽  
pp. 425-437 ◽  
Author(s):  
Birgitta Wallerstedt ◽  
Birgitta Andershed ◽  
Eva Benzein
Keyword(s):  
Family Caregivers ◽  
End Of Life Care ◽  
Family Members ◽  
Care Organization ◽  
Illness Trajectory ◽  
Palliative Home Care ◽  
Multiple Realities ◽  
Direct Interpretation ◽  
Standard Solution ◽  
Categorical Aggregation

AbstractObjective:To deepen the understanding of the variation of complexity in family members' caregiving situations, when the private home is the place for care, dying, and sitting service.Methods:Seven relatives to a deceased family member from four different families were interviewed twice. Data were analyzed by direct interpretation and categorical aggregationResults:Various patterns of becoming a caregiver were showed, but family members' willingness to become family caregivers was strongly related to fulfilling the dying persons' wishes to be cared for in their own homes. Important factors for coping with the caregiving situation were their needs of support, the possibility to prepare for death related to a need of communication and planning, the length and predictability of the illness trajectory, and experiences of losses and grief. Sitting service was experienced as supportive for family caregivers when they had possibility to hand over care responsibilities, but as non-supportive when expected help not was received.Significance of the research:Family members' experiences of caregiving and their degree of vulnerability must be different, depending on whether it is a self-selected position or an imposed task. In general, family members in this study were willing to participate in caregiving for end-of life care, but subject to their own conditions. One way to decrease vulnerability is to assess the resources and competence in relation to the responsibility the person is expected to assume. The support and other efforts to help family caregivers must be related to their specific needs and reality, not only to what the care organization can offer as a standard solution.

What family caregivers learn when providing care at the end of life: A qualitative secondary analysis of multiple datasets

2014 ◽  
Vol 13 (3) ◽  
pp. 425-433 ◽  
Author(s):  
Laura M. Funk ◽  
Kelli I. Stajduhar ◽  
Linda Outcalt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Meaning Making ◽  
Family Members ◽  
Secondary Analysis ◽  
Secondary Data ◽  
Life Care ◽  
Essential Information ◽  
Individualized Educational Programs

AbstractObjective:Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care.Method:Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis.Results:Thematic and cross-comparative analyses found three general kinds of learning that were described—knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about “learning” appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase “I have had to learn.”Significance of Results:Findings can inform the development of individualized educational programs and interventions for family caregivers.

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 Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-417
Author(s):  
Hyo Jung Lee ◽  
Jacobbina Jin Wen Ng
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Adult Children ◽  
End Of Life Care ◽  
Death And Dying ◽  
Family Members ◽  
Life Care ◽  
Joint Decision ◽  
Aging Parents ◽  
Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

scholarly journals Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Critical Care ◽  
2021 ◽  
Vol 25 (1) ◽  
Author(s):  
Siew Tzuh Tang ◽  
Chung-Chi Huang ◽  
Tsung-Hui Hu ◽  
Wen-Chi Chou ◽  
Li-Pang Chuang ◽  
...  
Keyword(s):  
Social Support ◽  
Posttraumatic Stress ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Life Care ◽  
Ptsd Symptoms ◽  
Icu Patients ◽  
Clinically Significant ◽  
Bereaved Family

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

2021 ◽  
pp. 003022282199770
Author(s):  
Janet Sopcheck ◽  
Ruth M. Tappen
Keyword(s):  
Emergency Department ◽  
Nursing Home ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Members ◽  
Terminally Ill ◽  
South Florida ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

Late Referrals to Specialized Palliative Care Service in Japan

2005 ◽  
Vol 23 (12) ◽  
pp. 2637-2644 ◽  
Author(s):  
Tatsuya Morita ◽  
Tatsuo Akechi ◽  
Masayuki Ikenaga ◽  
Yoshiyuki Kizawa ◽  
Hiroyuki Kohara ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life Care ◽  
Response Rate ◽  
Care Service ◽  
Family Members ◽  
Palliative Care Service ◽  
Effective Response ◽  
Specialized Palliative Care ◽  
Palliative Care Units ◽  
Bereaved Family

Purpose To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. Subjects and Methods A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). Results Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. Conclusion In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Abstract 87: Assessment of Stroke Caregiver Readiness: A Primary Prevention Strategy

Stroke ◽  
2012 ◽  
Vol 43 (suppl_1) ◽  
Author(s):  
Barbara J Lutz ◽  
Mary Ellen Young
Keyword(s):  
Primary Prevention ◽  
Family Caregivers ◽  
Family Members ◽  
Inpatient Rehabilitation ◽  
Stroke Survivors ◽  
Post Discharge ◽  
Readiness Assessment ◽  
Increased Risk ◽  
Transition Home

Introduction: More than 3.5 million family caregivers provide assistance with activities and instrumental activities of daily living for stroke survivors living at home. Studies consistently indicate that stroke family caregivers are inadequately assessed and under prepared for their new caregiver roles and responsibilities as stroke survivors transition home from inpatient rehabilitation. Several tools exist to assess caregivers once they have assumed the caregiving role, however, there are no tools assess stroke caregiver readiness prior to discharge. Research has indicated the need for a thorough and systematic pre-discharge assessment of the caregiver’s ability to assume the caregiving role. The purpose of this presentation is to describe ten critical stroke caregiver readiness assessment domains and to discuss their relevance for long-term outcomes for stroke survivors and family caregivers. Methods: In this grounded theory study, data were collected from19 persons with stroke and 19 family caregivers. Semi-structured interviews were conducted during inpatient rehabilitation and within 6 months post-discharge. First interviews focused on expectations for recovery and caregiving needs post-discharge. Follow-up interviews focused on how families managed the transition from rehabilitation to home and how their initial expectations matched the reality of their post-discharge experience. Interviews were analyzed using dimensional analysis and coded in NVivo data management software. Findings: Participants indicated that stroke was an overwhelming, life changing crisis event. Family members felt abandoned, isolated, and under prepared to assume the fulltime caregiving role as stroke survivors transitioned home. They described using ineffective or risky caregiving strategies that resulted in safety and health issues for both stroke survivors and caregivers. Ten pre-discharge caregiver readiness assessment domains were identified in the interviews and a corresponding stroke caregiver readiness assessment interview guide was developed. Conclusion: Stroke survivors and family caregivers are extremely vulnerable as they transition home from inpatient rehabilitation leaving them at risk for poorer health, depression, and increased risk for injury. In order to prevent these deleterious outcomes, caregivers should be assessed, and potential areas of risk identified and addressed prior to discharge from inpatient rehabilitation. As new interventions are developed to improve survival rates for persons with stroke, we must also develop and implement primary prevention strategies for family members who are called upon to provide care following discharge to protect their health and improve the long-term recovery outcomes for the stroke survivor.

Sign in / Sign up

Export Citation Format

Share Document