Experiences at the End of Life From the Perspective of Bereaved Parents: Results of a Qualitative Focus Group Study

2019 ◽  
Vol 37 (6) ◽  
pp. 424-432 ◽  
Author(s):  
Laura K. Sedig ◽  
Jessica L. Spruit ◽  
Trisha K. Paul ◽  
Melissa K. Cousino ◽  
Kenneth Pituch ◽  
...  
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Unmet Needs ◽  
Intraclass Correlation ◽  
Critical Time ◽  
Hospital Environment ◽  
Clinical Psychologist ◽  
Life Care ◽  
Bereaved Parents

Background: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. Methods: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child’s life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Conclusion: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

scholarly journals We Want More Than Life-Sustaining Treatment during End-of-Life Care: Focus-Group Interviews

2021 ◽  
Vol 18 (9) ◽  
pp. 4415
Author(s):  
Mirinae Kim ◽  
Minju Kim
Keyword(s):  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Treatment Needs ◽  
Focus Group Interviews ◽  
Care Needs ◽  
Basic Care ◽  
Life Sustaining Treatment ◽  
Group Interviews

We qualitatively investigated end-of-life care needs. Data were collected via focus-group interviews with three groups: young adults, middle-aged adults, and older adults. The key question was, “What kind of care would you like to receive at the end of life?” Interview data were transcribed and analyzed using content analysis. End-of-life care needs were classified into six categories: life-sustaining treatment needs, physical care needs, emotional care needs, environmental needs, needs for respect, and needs for preparation for death. Because the Korean culture is family-oriented and talking about death is taboo, Korean patients at the end of their life do not make decisions about life-sustaining treatment or actively prepare for death. Therefore, to provide proper end-of-life care, conversations and shared decision-making among patients and their families are crucial. Further, we must respect patients’ dignity and help them achieve a good death by understanding patients’ basic care preferences. Future research should continue examining end-of-life care needs that reflect the social and cultural context of Korea to inform instrument development.

scholarly journals What does effective end-of-life care at home for children look like? A qualitative interview study exploring the perspectives of bereaved parents

2021 ◽  
pp. 026921632110233
Author(s):  
Cari Malcolm ◽  
Katherine Knighting
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Service ◽  
Life Care ◽  
Care Providers ◽  
Specialist Care ◽  
Bereaved Parents ◽  
Home Based ◽  
Qualitative Interview Study ◽  
At Home

Background: End-of-life care for children with life-shortening conditions is provided in a range of settings including hospital, hospice and home. What home-based, end-of-life care should entail or what best practice might look like is not widely reported, particularly from the perspective of parents who experienced the death of a child at home. Aim: To explore the value and assess the effectiveness of an innovative model of care providing home-based, end-of-life care as perceived by families who accessed the service. Design: A qualitative descriptive study design was employed with in-depth semi-structured interviews conducted with bereaved parents. Setting/participants: Thirteen bereaved parents of 10 children supported by the home-based end-of-life care service. Results: Parents reported effective aspects of end-of-life care provided at home to include: (1) ability to facilitate changes in preferred place of death; (2) trusted relationships with care providers who really know the child and family; (3) provision of child and family-centred care; (4) specialist care and support provided by the service as and when needed; and (5) quality and compassionate death and bereavement care. Parents proposed recommendations for future home-based end-of-life care including shared learning, improving access to home-based care for other families and dispelling hospice myths. Conclusion: Parents with experience of caring for a dying child at home offer valuable input to future the policy and practice surrounding effective home-based, end-of-life care for children. New models of care or service developments should consider the key components and attributes for effective home-based end-of-life identified by bereaved parents in this study.

scholarly journals End of life care in CF: Patients, families and staff experiences and unmet needs

2011 ◽  
Vol 10 (4) ◽  
pp. 253-257 ◽  
Author(s):  
Maxine Braithwaite ◽  
Jennifer Philip ◽  
Heidi Tranberg ◽  
Felicity Finlayson ◽  
Michelle Gold ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Unmet Needs ◽  
Life Care ◽  
Staff Experiences

scholarly journals Primary care physicians’ educational needs and learning preferences in end of life care: A focus group study in the UK

2017 ◽  
Vol 16 (1) ◽  
Author(s):  
Lucy Ellen Selman ◽  
Lisa Jane Brighton ◽  
Vicky Robinson ◽  
Rob George ◽  
Shaheen A. Khan ◽  
...  
Keyword(s):  
Primary Care ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Primary Care Physicians ◽  
Educational Needs ◽  
Learning Preferences ◽  
Life Care ◽  
Focus Group Study ◽  
The Uk

Bereaved parents' views on end‐of‐life care for children with cancer: Quality marker implications

Cancer ◽  
2020 ◽  
Vol 126 (14) ◽  
pp. 3352-3359
Author(s):  
Emily E. Johnston ◽  
Jannelle Molina ◽  
Isaac Martinez ◽  
J. Nicholas Dionne‐Odom ◽  
Erin R. Currie ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Children With Cancer ◽  
Bereaved Parents ◽  
Quality Marker

Frommelt Attitudes Toward Care of the Dying Scale Form B

2015 ◽  
Vol 70 (3) ◽  
pp. 227-250 ◽  
Author(s):  
Chiara Mastroianni ◽  
Michela Piredda ◽  
Chiara Taboga ◽  
Fiorino Mirabella ◽  
Elisabetta Marfoli ◽  
...  
Keyword(s):  
Nursing Students ◽  
End Of Life ◽  
Internal Consistency ◽  
End Of Life Care ◽  
Intraclass Correlation ◽  
Italian Population ◽  
Life Care ◽  
Validity And Reliability ◽  
Convenience Sample ◽  
Care Of The Dying

Nurses' attitudes toward caring for dying patients have an impact on the quality of the care provided. Education can improve knowledge and attitudes toward end-of-life care. No validated tool that measures such attitudes is available for Italian nursing students. The aim of this study was to translate the Frommelt Attitudes Toward Care of the Dying Scale (FATCOD) Form B from English into Italian and to establish its validity and reliability within an Italian population of students. A two-stage design was used. Stage 1 adapted the original version of the tool and tested it for content validity through a multistep process. Stage 2 tested its psychometric properties by analyzing internal consistency, test–retest reliability, and construct validity. The convenience sample consisted of 465 nursing students from all the universities of one Italian region. Measures of stability showed a very good overall (0.87) intraclass correlation coefficient (ICC). The discriminating capacity of the scale was adequate with good values of asymmetry and kurtosis for most of the items. Good internal consistency was found. The six factors derived from the factor analysis are the following: Fear/Malaise, Communication, Relationship, Care of the family, Family as Caring, and Active Care. FATCOD Form B-I is a valid, reliable, and acceptable tool for evaluation of attitudes toward end-of-life care in Italian students. It measures six specific dimensions that should be highlighted during health care student education and training.

Reflecting on one's own death: The existential questions that nurses face during end-of-life care

2016 ◽  
Vol 15 (2) ◽  
pp. 158-167 ◽  
Author(s):  
Margareta Karlsson ◽  
Anne Kasén ◽  
Carola Wärnå-Furu
Keyword(s):  
Focus Group ◽  
Registered Nurses ◽  
End Of Life ◽  
End Of Life Care ◽  
Community Care ◽  
Life Care ◽  
Human Beings ◽  
Focus Group Interviews ◽  
Care Experience ◽  
Group Interviews

AbstractObjective:When registered nurses care for patients at the end of life, they are often confronted with different issues related to suffering, dying, and death whether working in hospital or community care. Serious existential questions that challenge nurses’ identities as human beings can arise as a result of these situations. The aim of our study was to describe and gain a deeper understanding of nurses’ existential questions when caring for dying patients.Method:Focus-group interviews with registered nurses who shared similar experiences and backgrounds about experiences in end-of-life care were employed to gain a deeper understanding about this sensitive subject. Focus-group interviews were performed in hospice care, in community care, and in a palliative care unit in western Sweden. A qualitative hermeneutic approach was employed to interpret the data.Results:Nurses’ existential questions balanced between responsibility and guilt in relation to their patients, between fear and courage in relation to being professional caregivers and fellow human beings, and between hope and despair in relation to the other's and their own death.Significance of results:Nurses in end-of-life care experience various emotions from patients related to things physical, spatial, and temporal. When nurses encounter these emotions as expressing a patient's suffering, they lead to challenges of balancing between different feelings in relation to patients, as both professional caregivers and fellow human beings. Nurses can experience growth both professionally and as human beings when caring for patients at the end of life.

The impact of existential vulnerability for nursing home doctors in end-of-life care: A focus group study

2016 ◽  
Vol 99 (12) ◽  
pp. 2043-2048 ◽  
Author(s):  
Kristian Jansen ◽  
Sabine Ruths ◽  
Kirsti Malterud ◽  
Margrethe Aase Schaufel
Keyword(s):  
Nursing Home ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Focus Group Study ◽  
The Impact
Sign in / Sign up

Export Citation Format

Share Document