A lifespan approach to understanding family caregiver experiences of a blood cancer diagnosis

2021 ◽  
pp. 1-8
Author(s):  
Amanda L. Kastrinos ◽  
Carla L. Fisher ◽  
Michaela D. Mullis ◽  
Easton Wollney ◽  
Maria Sae-Hau ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Lymphoblastic Leukemia ◽  
Geographic Distance ◽  
Delayed Diagnosis ◽  
Adult Child ◽  
Structured Interviews ◽  
Blood Cancer ◽  
Child Caregivers ◽  
Parent Caregivers ◽  
Survival Mode

Abstract Objectives The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers. Methods Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data. Results Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members. Significance of results Differences between the caregivers’ experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group.

scholarly journals ‘She Can’t Support Me Because She’s so Old’: A Mixed-Methods Study of Support Experiences and Needs in Adult Child–Parent Dyads at the End of Life

2021 ◽  
pp. 003022282110087
Author(s):  
Franziska A. Herbst ◽  
Laura Gawinski ◽  
Nils Schneider ◽  
Stephanie Stiel
Keyword(s):  
Mixed Methods ◽  
End Of Life ◽  
Family Caregivers ◽  
Adult Children ◽  
Qualitative Interviews ◽  
Terminally Ill ◽  
Adult Child ◽  
Self Report ◽  
Children And Parents ◽  
Parent Caregivers

Little is known about support experiences and needs in the dyads of (1) terminally ill adult children and their parent caregivers and (2) terminally ill parents and their adult child caregivers. The current study aimed at investigating the experiences and needs of adult children and parents in end of life situations regarding their provision and receipt of support. The study employed a convergent parallel mixed-methods design, combining explorative qualitative interviews with the quantitative self-report Berlin Social Support Scales. Sixty-five patients (dyad 1: 19; dyad 2: 46) and 42 family caregivers (dyad 1: 13; dyad 2: 29) participated in the study (02/2018–11/2019). Results show that ill adult children felt less (well) supported than ill parents. Parent caregivers were often limited in the support they could provide, due to their age and health conditions. Hypotheses were deduced from patients’ and family caregivers’ notions to inform dyad-specific recommendations for support interventions.

Mentalizing Imagery Therapy mobile application for family dementia caregivers: feasibility and effects on mood and caregiving

2018 ◽  
Author(s):  
Abu Sikder ◽  
Francis Yang ◽  
Rhiana Schafer ◽  
Glenna A. Dowling ◽  
Lara Traeger ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Mobile Application ◽  
Self Regulation ◽  
Pilot Trial ◽  
Depression Symptom ◽  
Structured Interviews ◽  
Physical Strain ◽  
Dementia Caregivers ◽  
Loved One ◽  
People With Dementia

Objectives: Due to psychological and physical strain, family caregivers of patients with Alzheimer’s disease and related dementias are at high risk for depression and stress related disorders. We investigated the feasibility of a mobile application (App) intervention delivering Mentalizing Imagery Therapy (MIT), which incorporates guided imagery and mindfulness, to facilitate self-regulation and increase perspective on the mental life of self and others. Method: A 4-week pilot trial of an MIT App for family caregivers of people with dementia was conducted to assess feasibility of use, mood and depression symptom benefit, and relationship changes. Semi-structured interviews were conducted at the study’s conclusion to characterize participants’ perceived benefits. Results: 80% of 21 consented participants downloaded the App, utilized it at least once, and were further analyzed. Of these participants, average usage of audio recordings was 14 ± 10 (SD) days out of 28 possible, and 29 ± 28 individual sessions. Acute improvement in mood from before to after completion of exercises was uniformly observed (p < .001), and after four weeks there was a significant increase in positive affect and a reduction in negative affect. Participants with severe levels of depression (n=3) at baseline exhibited an improvement in symptoms at 4 weeks averaging 30% (p < .05). Semi-structured interviews revealed an increase in the ability to remain “centered" despite caregiving challenges, take the perspective of the loved one, and positively reframe the caregiver experience.Conclusion: App delivery of MIT is feasible for family dementia caregivers. Results showed moderate to high usage of the app for a majority of the users, and promising improvements in mood and depression. These data provide justification for larger, controlled trials.

scholarly journals Digital Tools to Enhance Caregiver-Centered Communication

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 571-571
Author(s):  
Debra Parker Oliver
Keyword(s):  
Family Caregivers ◽  
Randomized Clinical Trials ◽  
Video Conferencing ◽  
Geographic Distance ◽  
Interdisciplinary Teams ◽  
Digital Tools ◽  
Team Members ◽  
Outcomes Of Care ◽  
Challenges And Opportunities ◽  
Episodes Of Care

Abstract While it is recognized that caregiver engagement can improve processes and outcomes of care in gerontology, there are barriers to caregiver centered communication, including limited resources for health systems to devote services specifically to families, geographic distance and lack of time. Digital tools such as social media platforms and video-conferencing introduce opportunities for remote and often asynchronous communication. In this presentation, we discuss findings from two randomized clinical trials that explored digital tools to empower family caregivers. In the first we examined ways to use video-conferencing to enable family caregivers to become virtual team members during hospice interdisciplinary teams, and in the second trial we examine the use of secret Facebook groups to meet informational and emotional needs of family caregivers during episodes of care that are often linked to increased social isolation and loneliness. We discuss challenges and opportunities in designing digital tools to facilitate caregiver engagement and empowerment.

scholarly journals Benefits finding among Chinese family caregivers of stroke survivors: a qualitative descriptive study

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e038344
Author(s):  
Yong-Xia Mei ◽  
Beilei Lin ◽  
Weihong Zhang ◽  
Dong-Bin Yang ◽  
Shan-Shan Wang ◽  
...  
Keyword(s):  
Family Caregivers ◽  
Healthy Lifestyle ◽  
Chinese Family ◽  
Stroke Survivors ◽  
Chinese Community ◽  
Structured Interviews ◽  
Research Reporting ◽  
Positive Attitudes ◽  
Qualitative Descriptive ◽  
Caregiver Burdens

ObjectivesThe caregiving experience includes both caregiver burdens and benefits finding. However, the benefits obtained by family caregivers of stroke survivors in Chinese community dwellings are unknown. The objective of this study was to explore the benefits experienced by family caregivers of stroke survivors in Chinese community dwellings.DesignA qualitative descriptive design was used, fulfilling the consolidated criteria for the Standards for Reporting Qualitative Research reporting guidelines. Semi-structured interviews were conducted with 20 family caregivers of stroke survivors. The interviews were audiotaped, transcribed and analysed. Thematic analysis was performed to analyse the interview transcripts.Setting and participantsHome interviews were conducted with family caregivers of stroke survivors in two communities in Zhengzhou, China.ResultsThe family caregivers of stroke survivors experienced various benefits from caregiving. There were both internal benefits (increases in knowledge and skills, the development of positive attitudes, and the development of a sense of worthiness and achievement) and external benefits (family growth and gains in social support), which interact to create a healthy lifestyle.ConclusionOur findings provide a comprehensive perspective in understanding the benefits perceived by family caregivers of stroke survivors. This study provides insights into interventions focused on identifying benefits finding in six domains that may help reduce negative emotions and promote the mental health of caregivers.

The Importance of Religiosity to the Well-Being of African American Older Adults Living With Dementia

2018 ◽  
Vol 39 (5) ◽  
pp. 509-518 ◽  
Author(s):  
Fayron Epps ◽  
Ishan C. Williams
Keyword(s):  
Older Adults ◽  
Health Promotion ◽  
Family Caregivers ◽  
Family Involvement ◽  
Health Care Providers ◽  
Well Being ◽  
Religious Practices ◽  
Care Providers ◽  
Religious Activities ◽  
Structured Interviews

This study was a post hoc analysis of a larger qualitative descriptive study exploring family involvement in health promotion activities for African Americans living with dementia where participants identified religious practices as meaningful health promotion activities. The purpose of this study was to explore ways in which religiosity may influence the well-being of older adults living with dementia. Semi-structured interviews were conducted among a sample of 22 family caregivers and 15 older adults living with dementia ( N = 37). Three themes emerged: Engagement, Promotion of Faith and Spiritual Connectedness, and Maintenance of Religious Practices. It is imperative for family caregivers to understand the important contributions of religious activities and beliefs to the well-being of their family member. This information might be of use for faith communities, policy makers, and health care providers in the provision of optimal person-centered care and the promotion of quality of life for persons living with dementia.

scholarly journals "Sidelined": Family Caregiver's Experience of the  Emergency Department: Insights from Family Caregivers of People with Alzheimer's Disease

2021 ◽  
Author(s):  
◽  
Sandra Roberta Ridley
Keyword(s):  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Lived Experience ◽  
Family Caregivers ◽  
Healthcare Professionals ◽  
Care Facility ◽  
Structured Interviews ◽  
Presenting Symptoms ◽  
Information Giving ◽  
Inpatient Settings

<p>Older patients with a cognitive deficit, such as seen in Alzheimer's Disease (AD), have not been extensively researched in ED. Often patients with AD are accompanied by a familiar person such as a family caregiver when they present to an acute care facility. Literature has shown that family caregivers' have reported dissatisfaction with interaction with healthcare professionals in inpatient settings. There is a paucity of research on the experiences family caregivers have in ED. This study explored the experiences of family caregivers of people with Alzheimer's Disease in the ED of a regional hospital in New Zealand. A Hermeneutic phenomenology method was used to bring meaning to the lived experience of family caregivers in the ED. Ricouers Interpretation theory was used to analyse and interpret the data. Six family caregivers were interviewed, using semi-structured interviews, to explore and give meaning to their experience. Findings revealed family caregivers were 'sidelined'; felt invisible, ignored and abandoned by the healthcare professionals in ED. There appeared to be little understanding about dementia symptoms, or the needs of caregivers of people with AD. The experience was distressing for participants who felt they were not able to relay information about their loved one that was pertinent to their health and presenting symptoms. Health Professionals tended to speak directly to their loved ones and not with the participants. Consequently there was a risk of misinformation and poor communication driving treatment decisions for these patients. Participants reported poor information giving and family caregivers were left for long periods of time with no contact, and no support. Despite this, caregivers justified and excused the actions of healthcare professionals. They became passive recipients of process and procedures that were not adequately explained.</p>

scholarly journals “How Long Can I Carry On?” The Need for Palliative Care in Parkinson’s Disease: A Qualitative Study from the Perspective of Bereaved Family Caregivers

2020 ◽  
Vol 10 (4) ◽  
pp. 1631-1642
Author(s):  
Herma Lennaerts-Kats ◽  
Anne Ebenau ◽  
Maxime Steppe ◽  
Jenny T. van der Steen ◽  
Marjan J. Meinders ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Palliative Care ◽  
Parkinson's Disease ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Healthcare Professionals ◽  
Structured Interviews ◽  
Practice Nurses ◽  
Bereaved Family

Background: Family caregivers provide the majority of care for people with Parkinson’s disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life. Objective: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD. Methods: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed. Results: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD. 2) Healthcare professionals do not always know what PD really means: most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one’s care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients’ preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided. Conclusion: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals’ awareness of family and bereaved caregivers’ needs may mitigate these long-term detrimental effects.

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