scholarly journals Family members’ experiences of caring for a person with dementia at end-of-life

2021 ◽  
Author(s):  
◽  
Lucy Hester Nunns
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
Family Member ◽  
Terminal Illness ◽  
Living Arrangement ◽  
Family Members ◽  
Phenomenological Approach ◽  
Care Needs ◽  
Optimal Care ◽  
People With Dementia

<p>Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.</p>

scholarly journals Family members’ experiences of caring for a person with dementia at end-of-life

2021 ◽  
Author(s):  
◽  
Lucy Hester Nunns
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
Family Member ◽  
Terminal Illness ◽  
Living Arrangement ◽  
Family Members ◽  
Phenomenological Approach ◽  
Care Needs ◽  
Optimal Care ◽  
People With Dementia

<p>Dementia is now recognised as a progressive terminal illness causing significant health-care needs for people with dementia and challenges to their family member caregivers. The purpose of this study was to understand the lived experience of family member caregivers of people with dementia at end-of-life. The research was conducted using a phenomenological approach and data were analysed using Colaizzi’s framework. Five family members were interviewed about their experiences of caregiving for six people with dementia. Four themes were revealed. These were: ‘Being at the Coalface’ with subthemes of overload, and experiencing guilt, shame and resentment; ‘Moving Heaven and Earth’ with subthemes of love and preserving dignity; ‘Facing the Change’ with subthemes of loss of the person, living arrangement transitions, and one dimensional conversations; and the fourth theme was ‘Finding the Answers’ with subthemes of diagnosis and preparedness. All the themes are closely interrelated and throughout all of the participants’ narratives, ‘love’ was the one constant that wove the themes together. This study gives voice to the inner experiences of the family caregivers who were supporting people with dementia in New Zealand. The findings of this study have elucidated many implications for practice and areas for innovation in supporting family member caregivers of people with dementia. This study has identified that the areas in most need of improvement are timely diagnosis, access to wrap-around support services, advance care planning opportunities and optimal care at end-of-life.</p>

A Transformative Impact of Theory in Clinical Practice: A Study in a Cardiogenetics Clinic

2020 ◽  
Vol 34 (2) ◽  
pp. 129-143
Author(s):  
Esma D. Paljevic
Keyword(s):  
New York ◽  
Lived Experience ◽  
Family Member ◽  
Phenomenological Study ◽  
Family Members ◽  
Phenomenological Approach ◽  
Genetic Profile ◽  
Delivery Of Care ◽  
Qualitative Phenomenological ◽  
Qualitative Phenomenological Study

Background and PurposeThis qualitative phenomenological study explored the lived experiences of family members who have been referred to a cardiogenetics clinic following the loss of a family member to sudden cardiac death (SCD). These family members were evaluated in a Cardiogenetics Clinic in a Children's Hospital in the New York region, which utilizes an interprofessional approach to care.MethodsA qualitative phenomenological approach was used to explore the lived experience of family members that were referred following the SCD of a family member. The researcher used hermeneutic dialectics and interviewed family members that attended the Cardiogenetics Clinic.ResultsInsights gained through discussion were discussed in the following themes: stories of feelings being heard, stories of meaningfulness, and stories of mutual process. This led to the transformation of the typical linear clinic process to a transformative and dynamic model for integrated delivery of care.Implications for PracticeThis interprofessional model of care offers information regarding SCD, a genetic profile to determine risk for SCD, an integrative collaborative approach to care as well as nursing, medical interventions, psychological support, and counseling for families.

Family members’ perspectives of caring for patients with terminal hepatocellular carcinoma.

2015 ◽  
Vol 33 (3_suppl) ◽  
pp. 323-323
Author(s):  
Lissi Hansen ◽  
Susan J. Rosenkranz ◽  
Kathleen Wherity ◽  
Anna Sasaki
Keyword(s):  
Hepatocellular Carcinoma ◽  
End Of Life ◽  
Family Member ◽  
Family Members ◽  
Symptom Assessment ◽  
Future Research ◽  
Integral Role ◽  
Need For Support ◽  
Complex Relationships ◽  
Current Concerns

323 Background: Hepatocellular carcinoma (HCC) is a growing problem worldwide and accounts for more than 700,000 deaths annually. There is no curative treatment for those diagnosed with terminal HCC. This group of patients differs from other populations with liver disease or cancer due to the combined disease processes of cancer and liver failure. Although family members often play an integral role in providing care, no study was found specifically examining family member experiences of caring for patients with terminal HCC. The aim of this study was to describe family members’ experiences and perceptions of providing care for patients with HCC as they near the end of life. Methods: This longitudinal, prospective pilot study described here presents the qualitative results of semi-structured in-person interviews with a convenience sub-sample of 13 family members conducted once a month for up to a 6-month period. The interview guide included questions about family member experiences of providing care for patients living with HCC and any current concerns of significance. Interview data were analyzed using conventional content analysis. Results: Analysis included a total of 39 family member interviews. Ten family members were female and three were male (mean age = 56 years, range = 22-68 years). Family members’ relationships to patients varied and included: spouses, siblings, adult children, parents, and ex-spouses. The analysis resulted in four major themes: perception of and response to terminal HCC diagnosis, HCC progression, symptom assessment and interpretation, and challenges of providing care. Findings were colored by complex relationships between family members and patients that changed or did not change as the disease progressed. Conclusions: This study contributes new knowledge to begin developing interventions that address family members’ need for support, help, and information as the disease progresses and at the end of life. Future research should include a larger sample size that is more ethnically and racially diverse, includes more male family members, and focuses on how care provided by family members may vary based on kinship, and relationship dynamics.

scholarly journals Family Members' Understanding of the End-of-Life Wishes of People Undergoing Maintenance Dialysis

2021 ◽  
pp. CJN.04860421
Author(s):  
Fahad Saeed ◽  
Catherine Butler ◽  
Carlyn Clark ◽  
Kristen O'Loughlin ◽  
Ruth Engelberg ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Member ◽  
End Of Life Care ◽  
Family Members ◽  
Kappa Statistic ◽  
Treatment Preferences ◽  
Life Care ◽  
Level Of Involvement ◽  
Percent Agreement ◽  
Maintenance Dialysis

Background: People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members' understanding of the end-of-life wishes of members of this population are lacking. Methods: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient's care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percent agreement and the kappa statistic. Results: The mean (SD) age of the 172 enrolled family members was 55 (±17.0) years, 136 (79%) were women, and 43 (25%) were Black. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions,108 (63%) about their treatment preferences, 47 (27%) about stopping dialysis and 56 (33%) about hospice. Agreement between patient and family member responses was highest (though still fair) for the question about whether or not the patient would want cardiopulmonary resuscitation (CPR) (percent agreement 83%, kappa 0.31) and substantially lower for questions about a range of other aspects of end-of-life care including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15) and prognostic expectations (38%, 0.15). Conclusions: Most surveyed family members reported they had spoken with the patient about their end-of-life wishes but not about stopping dialysis or hospice. While family members had a fair understanding of patients' CPR preference, most lacked a detailed understanding of patients' perspectives on other aspects of end-of-life care.

End of Life Communication

2016 ◽  
Author(s):  
Maureen P. Keeley
Keyword(s):  
End Of Life ◽  
Terminal Illness ◽  
Death And Dying ◽  
Family Members ◽  
Terminally Ill ◽  
Comfort Care ◽  
Hospice Volunteers ◽  
End Of Life Decision ◽  
And Control ◽  
End Of Life Communication

End of life communication includes both verbal and nonverbal messages that transpire following a diagnosis of a terminal illness and death. The circumstances that occur at the end of life create opportunities for unique and important communication. Specifically, communication at the end of life is impacted by numerous and complicated factors: First, cultural views on death and dying often determine what is talked about, when it can be talked about, and who is included in the conversations. Second, the fears, desires, and needs of the terminally ill must be taken into account at the end of life as it is their personal end of life journey. Third, the nature of the relationships between the terminally ill and their family and friends have tremendous influence on the nature and topics of conversations that will be shared. Fourth, interactions with healthcare professionals (preferably with palliative care specialists) tend to be more task focused, emphasizing end of life decision making and comfort care for the terminally ill. Fifth, as people are tending to live longer with terminal illness and often doing so far from their family, professional caregivers and hospice volunteers are also engaging in meaningful and significant communication with the terminally ill. Communication at the end of life often determines whether or not the dying are allowed to die with dignity, with some control over their final wishes, and whether they are ultimately able to obtain some peaceful closure. Within close relationships communication at the end of life has the potential for authentic conversations that bring people closer, heal old wounds, and allow the terminally ill and close others to create some final memories and to say goodbye to one another. Communication at the end of life with health professionals has the potential for both the terminally ill and their family members to have greater satisfaction with end of life decisions and control of pain for the terminally ill, as well as better outcomes regarding grief and bereavement following the death for family members. For hospice volunteers and professional caregivers, communication at the end of life teaches the necessity and complexities of interactions at the end of life for the larger society.

Therapeutic paralysis of critically ill trauma patients: perceptions of patients and their family members

1999 ◽  
Vol 8 (1) ◽  
pp. 490-498 ◽  
Author(s):  
KL Johnson ◽  
RB Cheung ◽  
SB Johnson ◽  
M Roberts ◽  
J Niblett ◽  
...  
Keyword(s):  
Lived Experience ◽  
Critically Ill ◽  
Emotional Support ◽  
Family Members ◽  
Phenomenological Approach ◽  
Neuromuscular Blocking ◽  
Trauma Patients ◽  
Confounding Variables ◽  
Qualitative Phenomenological ◽  
Additional Education

BACKGROUND: Neuromuscular blocking agents are used in critically ill patients to induce therapeutic paralysis. These drugs leave patients fully immobile but conscious. Analgesics and sedatives are concomitantly administered with the paralytic agents. Little is known about what patients remember when they receive these combinations of drugs. Even less is known about the experiences and needs of the patients' family members during the patients' paralysis. OBJECTIVES: To obtain recollections of therapeutic paralysis in critically ill adult trauma patients and to determine the psychological, emotional, and educational needs of the patients' family members during the time the patients were paralyzed. METHODS: A qualitative phenomenological approach was used to investigate the "lived" experience of therapeutic paralysis of 11 pairs of subjects. Each pair consisted of one critically ill adult trauma patient and one member of the patient's family. RESULTS: The patients recalled their experience of therapeutic paralysis with vagueness, as if they had been dreaming. Few recalled pain or painful procedures. Patients remembered having nurses and family members provide emotional support and encouragement. Family members understood the rationale for use of the drugs. They remembered being encouraged to touch and talk with patients. The subjects suggested providing additional education about events that occur when paralysis is being reversed. CONCLUSIONS: Two confounding variables may have affected these findings: a liberalized visiting policy and use of effective pain and sedation protocols. Healthcare professionals and patients' family members should monitor bedside conversations and use touch and words of encouragement to support patients during therapeutic paralysis.

The Effect of Providing Life Support on Nurses’ Decision Making Regarding Life Support for Themselves and Family Members in Japan

2016 ◽  
Vol 33 (10) ◽  
pp. 917-923
Author(s):  
Fumio Shaku ◽  
Madoka Tsutsumi
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Terminal Illness ◽  
Life Support ◽  
Family Members ◽  
Severity Of Illness ◽  
Japanese Culture ◽  
Dying Patients ◽  
The Family ◽  
Japanese Nurses

Decision making in terminal illness has recently received increased attention. In Japan, patients and their families typically make decisions without understanding either the severity of illness or the efficacy of life-supporting treatments at the end of life. Japanese culture traditionally directs the family to make decisions for the patient. This descriptive study examined the influence of the experiences of 391 Japanese nurses caring for dying patients and family members and how that experience changed their decision making for themselves and their family members. The results were mixed but generally supported the idea that the more experience nurses have in caring for the dying, the less likely they would choose to institute lifesupport measures for themselves and family members. The results have implications for discussions on end-of-life care.

The lived experience of family caregivers who provided end-of-life care to persons with advanced dementia

2013 ◽  
Vol 12 (2) ◽  
pp. 117-126 ◽  
Author(s):  
Shelley Peacock ◽  
Wendy Duggleby ◽  
Priscilla Koop
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Vital Role ◽  
Life Care ◽  
Interpretive Phenomenology ◽  
Being There ◽  
The Right

AbstractObjective:Dementia is a terminal illness, and family caregivers play a vital role in providing end-of-life care to their relative. The present study begins to address the paucity of research regarding end-of-life caregiving experience with dementia.Method:This study utilized Munhall's methodology for interpretive phenomenology. Seven women and four men were interviewed two to three times within a year of their relative's death; interviews were transcribed verbatim and hermeneutically analyzed.Results:Findings reveal two essential aspects of end-of-life dementia caregiving: being-with and being-there. Further findings are organized according to the existential life worlds. Examination of the life worlds demonstrates that 1) spatiality provided a sense or lack of feeling welcome to provide end-of-life care; 2) temporality was an eternity or time melting away quickly, or the right or wrong time to die; 3) corporeality revealed feelings of exhaustion; and 4) relationality was felt as a closeness to others or in tension-filled relationships.Significance of results:An understanding from bereaved caregivers’ perspectives will help healthcare practitioners better support and empathize with family caregivers. Further research is warranted that focuses on other places of death and differences in experience based on gender or relationship to the care receiver.

Battling a Tangled Web: The Lived Experience of Nurses Providing End-of-Life Care on an Acute Medical Unit

2016 ◽  
Vol 30 (4) ◽  
pp. 353-378 ◽  
Author(s):  
Irene Oliveira ◽  
Frances Fothergill-Bourbonnais ◽  
Christine McPherson ◽  
Brandi Vanderspank-Wright
Keyword(s):  
Lived Experience ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Interpretive Phenomenology ◽  
Care Needs ◽  
Medical Unit ◽  
Face To Face ◽  
Acute Medical Unit ◽  
Heath Care

Meeting the heath care needs of patients at the end of life is becoming more complex. In Canada, most patients with life-limiting illness will die in hospitals, many on medical units. Yet, few studies have qualitatively investigated end-of-life care (EOLC) in this context, or from the perspectives of nurses providing EOLC. The purpose of this study was to seek to understand the lived experience of nurses on a medical unit providing EOLC to patients. Interpretive phenomenology guided the method and analysis. Individual face-to-face interviews were conducted with 10 nurses from 2 hospital medical units. The underlying essence of these nurses’ experiences was that of “battling a tangled web.” Battling a tangled web represented their struggles in attempting to provide EOLC in an environment that was not always conducive to it. Seven themes were generated from the analysis: caring in complexity, caught in a tangled web, bearing witness to suffering, weaving a way to get there: struggling through the process, creating comfort for the patient, working through the dying process with the family, and finding a way through the web. The findings contribute to an understanding of the experiences of nurses in providing EOLC on a medical unit including perceived facilitators and barriers.

scholarly journals Making a university community more dementia friendly through participation in an intergenerational choir

Dementia ◽  
2018 ◽  
Vol 18 (7-8) ◽  
pp. 2556-2575 ◽  
Author(s):  
Phyllis Braudy Harris ◽  
Cynthia Anne Caporella
Keyword(s):  
Quality Of Life ◽  
College Students ◽  
Young Adults ◽  
Focus Group ◽  
Lived Experience ◽  
Family Members ◽  
Social Connections ◽  
The People ◽  
People With Dementia

A dementia friendly community is one that is informed about dementia, respectful and inclusive of people with dementia and their families, provides support, promotes empowerment, and fosters quality of life. This study presents data from four cohorts of undergraduate college students and people with dementia and their family members, using an intergenerational choir as the process through which to begin to create a dementia friendly community. This was accomplished by breaking down the stereotypes and misunderstandings that young adults have about people with dementia, thus allowing their commonalities and the strengths of the people living with dementia to become more visible. Data were gathered for each cohort of students through semi-structured open-ended questions on attitudes about dementia and experiences in the choir, collected at three points over 10 weeks of rehearsals. Data about their experiences in the choir were collected from each cohort of people with dementia and their family members through a focus group. Results across all four cohorts showed in the students: changed attitudes, increased understanding about dementia and the lived experience, reduced dementia stigma, and the development of meaningful social connections. People with dementia and their family members expressed feelings of being part of a community.

Sign in / Sign up

Export Citation Format

Share Document