Support for families of patients dying with dementia: A qualitative analysis of bereaved family members' experiences and suggestions

2014 ◽  
Vol 13 (3) ◽  
pp. 435-442 ◽  
Author(s):  
Pia Muders ◽  
Corinna Aruna Zahrt-Omar ◽  
Sonja Bussmann ◽  
Julia Haberstroh ◽  
Martin Weber
Keyword(s):  
Emotional Support ◽  
Care Setting ◽  
Healthcare Professionals ◽  
Family Members ◽  
Professional Support ◽  
Terminal Phase ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Disease Trajectory ◽  
Bereaved Family

AbstractObjective:To explore and document the needs of family caregivers of patients dying with dementia and to identify how healthcare professionals can adequately support them.Method:We employed a cross-sectional survey containing open-ended questions that were analyzed using qualitative methods.Results:Receiving information about the diagnosis and disease trajectory of dementia is essential for the caregiving families of people dying with the disease. However, at present the communication of information offered by professionals is not experienced as satisfying. Further aspects that require improvement concern issues related to time constraints, as well as practical and emotional support from professionals in the care setting. Family members would also like professionals to better assist them during and after the dying process.Significance of Results:Family members face multiple burdens while caring for their demented relatives and need more professional support during the course of the disease trajectory as well as in the terminal phase.

scholarly journals How Did Italian Adolescents with Disability and Parents Deal with the COVID-19 Emergency?

2021 ◽  
Vol 18 (4) ◽  
pp. 1687
Author(s):  
Silvia Faccioli ◽  
Francesco Lombardi ◽  
Pierantonio Bellini ◽  
Stefania Costi ◽  
Silvia Sassi ◽  
...  
Keyword(s):  
Assistive Technology ◽  
Healthcare Professionals ◽  
Family Members ◽  
Anxiety Symptoms ◽  
Rehabilitation Services ◽  
Disabled Children ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Positive Effects ◽  
Italian Adolescents

The COVID-19 emergency has imposed distanced education and has interrupted most rehabilitation services. Adolescents with disabilities have been isolated, and the burden on their families has been exacerbated. A cross-sectional survey was administered to adolescents with disability and to parents of disabled children to describe their experience during lockdown and their concerns or expectations about rehabilitation. A sample of 53 adolescents and 239 parents completed the survey. Adolescents were ages 13–18 years old (45.3% female). Most parents were between 35 and 55 years old (84.9% female). While 53.6% of the parents reported no positive effects of the lockdown, 92.5% of the adolescents expressed favorable consequences. The increased time spent with family members was judged positively by 27.2% of parents and by 64.2% of adolescents. Concern for their child’s disability was expressed by 47.3% of parents, while 73.6% of adolescents expressed concerns regarding the ban on meeting friends. In both groups, anxiety symptoms were correlated with the fear of contracting COVID-19 and with financial problems. Parents would have liked even more remote support from school and healthcare professionals, which was available for most participants. Thus, socioeconomic support, assistive technology and telerehabilitation strategies might help families with disabilities during a lockdown.

scholarly journals Support received by family members before, at and after an ill person’s death

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anna O’Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter
Keyword(s):  
Survey Design ◽  
Family Members ◽  
Time Of Death ◽  
Healthcare Staff ◽  
Care Needs ◽  
Advanced Illness ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Bereaved Family

Abstract Background It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20–90 years old, 70% women) of people who died in hospital between August 2016-April 2017. Results Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

scholarly journals Bereaved Family Members’ Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness

Healthcare ◽  
2018 ◽  
Vol 6 (4) ◽  
pp. 130 ◽  
Author(s):  
Anna O’Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlen ◽  
Cecilia Håkanson
Keyword(s):  
Educational Attainment ◽  
Hospice Care ◽  
Survey Design ◽  
Family Members ◽  
Satisfaction With Care ◽  
Advanced Illness ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Deceased Person ◽  
Bereaved Family

Background: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members’ satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members. Methods: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden. Results: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer. Conclusion: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

scholarly journals Support Received by Family Members Before, at and After an Ill Person’s Death

2021 ◽  
Author(s):  
Anna O´Sullivan ◽  
Anette Alvariza ◽  
Joakim Öhlén ◽  
Cecilia Larsdotter
Keyword(s):  
Survey Design ◽  
Family Members ◽  
Time Of Death ◽  
Healthcare Staff ◽  
Care Needs ◽  
Advanced Illness ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Bereaved Family

Abstract Background: It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members’ experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. Methods: A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital between August 2016-April 2017.Results: Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members’ comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person’s death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. Conclusions: Family members’ experiences of support were partly related to whether the ill person’s care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members’ experiences of support. Family members’ difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.

Oscillation between identities and Subjective psychological health objectives among an informed audience in therapeutic patient education

2018 ◽  
Vol 10 (1) ◽  
pp. 10202
Author(s):  
Sandrine Roussel ◽  
Alain Deccache ◽  
Mariane Frenay
Keyword(s):  
Patient Education ◽  
Psychological Health ◽  
Healthcare Professionals ◽  
Cross Sectional Survey ◽  
Chi Square ◽  
Cross Sectional ◽  
Therapeutic Patient Education ◽  
French Speaking ◽  
Health Objectives ◽  
Self Administered Questionnaire

Introduction: The implementation of Therapeutic Patient Education (TPE) remains a challenge. An exploratory study highlighted two tendencies among practitioners of TPE, which could hamper this implementation: an oscillation between identities (as caregivers versus as educators) and an inclination towards subjective psychological health objectives. Objectives: To verify whether these tendencies can be observed among an informed audience in TPE. Next, to explore the variables associated with one or other of these tendencies. Method: A quantitative cross-sectional survey by a self-administered questionnaire was carried out among 90 French-speaking healthcare professionals. Statistical analyses (chi-square, logistic regression) were then conducted. Results: Sixty percent of respondents displayed identity oscillation, which was found to be linked to task oscillation, patient curability, scepticism towards medicine and practising in France. Fifty-six percent pursued subjective psychological health objectives, which was found to be associated with health behaviour objectives and a locus of power in the healthcare relationship distinct from those seen in the pre-existing health models (biomedical, global). This tendency seems to constitute an alternative model of TPE. Discussion & conclusion: Identity oscillation and subjective psychological health objectives can be both observed. This study stresses the need to deliberate on the form(s) of TPE that is/are desired.

scholarly journals Burnout of Healthcare Workers amid the COVID-19 Pandemic: A Japanese Cross-Sectional Survey

2021 ◽  
Vol 18 (5) ◽  
pp. 2434
Author(s):  
Yoshito Nishimura ◽  
Tomoko Miyoshi ◽  
Hideharu Hagiya ◽  
Yoshinori Kosaki ◽  
Fumio Otsuka
Keyword(s):  
Healthcare Workers ◽  
Healthcare Professionals ◽  
Healthcare Delivery ◽  
General Medicine ◽  
Maslach Burnout Inventory ◽  
University Hospital ◽  
Survey Study ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
The Past

The coronavirus disease 2019 (COVID-19) global pandemic has drastically changed how we live and work. Amid the prolonged pandemic, burnout of the frontline healthcare professionals has become a significant concern. We conducted a cross-sectional survey study to provide data about the relationship between the COVID-19 pandemic and the prevalence of burnout in healthcare professionals in Japan. Healthcare workers in a single Japanese national university hospital participated in the survey, including basic demographics, whether a participant engaged in care of COVID-19 patients in the past 2 weeks and the Maslach Burnout Inventory. Of those, 25.4% fully answered the survey; 33.3% were doctors and 63.6% were nurses, and 36.3% engaged in care of COVID-19 patients in the past 2 weeks. Compared to those belonging to General Medicine, those in Emergency Intensive Care Unit were at higher risk of burnout (odds ratio (OR), 6.7; 95% CI, 1.1–42.1; p = 0.031). Of those who engaged in care of COVID-19 patients, 50% reported burnout while 6.1% did not (OR 8.5, 95% CI; 1.3–54.1; p = 0.014). The burnout of healthcare workers is a significant concern amid the pandemic, which needs to be addressed for sustainable healthcare delivery.

scholarly journals Coping with oil spills: oil exposure and anxiety among residents of Gulf Coast states after the Deepwater Horizon oil spill

2021 ◽  
Author(s):  
Zachary Goldman ◽  
John A. Kaufman ◽  
J. Danielle Sharpe ◽  
Amy F. Wolkin ◽  
Matthew O. Gribble
Keyword(s):  
Oil Spill ◽  
Emotional Support ◽  
Gulf Coast ◽  
Deepwater Horizon ◽  
Tobit Regression ◽  
Deepwater Horizon Oil Spill ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Drilling Rig ◽  
Oil Exposure

Introduction: In April 2010, a fatal explosion on the Deepwater Horizon drilling rig in the Gulf of Mexico resulted in the largest accidental marine oil spill in history. This research describes the association of oil exposure with anxiety after the Deepwater Horizon oil spill and evaluates effect modification by self-mastery, emotional support, and cleanup participation. Methods: To assess the impacts of the Deepwater Horizon oil spill, the Centers for Disease Control and Prevention conducted the Gulf States Population Survey, a random-digit-dial telephone cross-sectional survey completed between December 2010 and December 2011 with 38,361 responses in four different Gulf Coast states­: Louisiana, Florida, Alabama, and Mississippi. Anxiety severity was measured using the Generalized Anxiety Disorder symptom inventory. We used Tobit regression to model underlying anxiety as a function of oil exposure and hypothesized effect modifiers, adjusting for socio-demographics. Results: Latent anxiety was higher among those directly exposed to oil than among those who were not directly exposed to oil in confounder-adjusted models (β=2.84, 95% CI: 0.78, 4.91). Among individuals exposed to oil, there was no significant interaction between participating in cleanup activities and emotional support for anxiety ( P=0.16). However, among those directly exposed to oil, in confounder-adjusted models, participation in oil spill cleanup activities was associated with lower latent anxiety (β=-3.50, 95% CI: -6.10, -0.90). Conclusion: Oil contact was associated with greater anxiety, but this association appeared to be mitigated by cleanup participation.

scholarly journals COVID-19 and Brazilian healthcare professionals: a cross-sectional survey of perceptions and feelings during pandemics in one of the top three most-affected countries (Preprint)

10.2196/28088 ◽  
2021 ◽  
Author(s):  
Roberta Pires Corrêa ◽  
Helena Carla Castro ◽  
Bruna Maria Castro Salomão Quaresma ◽  
Paulo Roberto Soares Stephens ◽  
Tania Cremonini Araujo-Jorge ◽  
...  
Keyword(s):  
Healthcare Professionals ◽  
Cross Sectional Survey ◽  
Cross Sectional
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