The Lived Experience of Hope in Family Caregivers Caring for a Terminally Ill Loved One

Objective: The aim of the study was to explore the lived experience of caregivers providing home care for terminally ill family members, with the objectives of describing their experiences of caring for relatives who are terminally ill with cancer and the needs of home caregiving in Bahrain.Methods: The study adopted a Heideggerian, hermeneutic phenomenological design, with a purposive sample of eight family caregivers. Data was generated through one to one, in-depth interviews and analyzed using Interpretative Phenomenological Analysis.Results: Three main themes emerged from the data: (1) the burden of care, (2) comforts, and (3) coping. The findings showed that the lived experience of home caregiving includes physical, emotional and financial burdens, combined with a lack of professional support. The collective experience was infused with intense emotions because of a lack of structured support, resulting in negative emotions that frequently affected the caregivers’ well-being and their ability to care for the ill person. Nevertheless, caregivers tried to maintain care and comforts for their terminally ill relative in the home. They adopted the home environment, arranged resources to ease caring and provided psychological care. Caregivers utilized three coping mechanisms, faith, personal strategies and distribution of the care responsibilities among family members.Conclusions: Caregivers were not prepared for the commitment and burdens of home care when a family member is terminally ill. A recommendation from the study findings is that training be offered on nursing care before patients discharge. In addition, a reactivation of the palliative care clinic hotline service would support family caregivers. A further recommendation is that home nursing care and hospice services be established to improve homecare services for family caregivers in Bahrain.

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How does spirituality manifest in family caregivers of terminally ill cancer patients? A qualitative secondary analysis

Palliative & Supportive Care ◽

10.1017/s1478951521000353 ◽

2021 ◽

pp. 1-10

Author(s):

Julia Wikert ◽

Max Treutlein ◽

Marianna Theochari ◽

Carsten Bokemeyer ◽

Karin Oechsle ◽

...

Keyword(s):

Palliative Care ◽

Lived Experience ◽

Family Caregivers ◽

Secondary Analysis ◽

Terminally Ill ◽

Religious Faith ◽

Analysis Data ◽

Spiritual Needs ◽

Incurable Cancer ◽

Terminally Ill Cancer Patients

Abstract Objective Considering the risk of spiritual distress among terminally ill patients, experts long agree that spiritual care has to be an integral component of palliative care. Despite this consensus, the role of spirituality among family caregivers remains largely unexplored. We aimed to describe how spirituality manifests in the lived experience of family caregivers (FCs) in a palliative care context. Method As part of a secondary analysis, data derived from two qualitative primary studies on FCs’ burdens and needs in the context of caring for a patient with a diagnosis of incurable cancer. Previously transcribed interviews were examined by means of a thematic analysis, transcending the focus of the primary studies to examine how spirituality arises and/or persists in the life of FCs from the time of diagnosis of incurable cancer up until bereavement. Results Twenty-nine narratives were explored and all included spirituality as a relevant theme. Analysis revealed four aspects associated with the presence of spirituality among FCs’ experiences: “Connectedness,” “Religious Faith,” “Transcendence,” “Hope,” and a fifth overarching aspect which we named “Ongoing integration of spiritual experience.” Spirituality appeared as a multilayered phenomenon and was shaped individually among FCs’ narratives. Significance of results In view of the results, exploring and discussing spirituality and underlying experiences in the situation as an FC seems likely to widen the perspective on FCs’ problems and needs. Further research on spiritual needs among FCs of patients with incurable life-limiting cancer is deemed necessary.

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

10.31231/osf.io/cgpfs ◽

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.

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Healing experience for family caregivers after an intensive care unit death

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2018-001561 ◽

2019 ◽

pp. bmjspcare-2018-001561 ◽

Cited By ~ 2

Author(s):

Susan DeSanto-Madeya ◽

Dan Willis ◽

Julie McLaughlin ◽

Aristotle Boslet

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Family Caregivers ◽

Phenomenological Study ◽

Healthcare Providers ◽

Loved One ◽

Hermeneutic Phenomenological ◽

Telephone Interviews ◽

Hermeneutic Phenomenological Study ◽

Purposive Sample

ObjectivesFamily caregivers suffer a high burden of emotional and psychological distress following the death of a loved one in the intensive care unit and often struggle to heal in the weeks following their loss. The purpose of this hermeneutic phenomenological study was to describe and interpret the experience of healing for family caregivers six weeks following the death of a loved one in the ICU.MethodsSemi-structured telephone interviews were conducted with a purposive sample of twenty-four family caregivers six weeks following the death of their loved ones in the ICU. Qualitative analysis techniques were used to identify common themes central to the experience of healing across all interviews.ResultsSeven themes were interpreted from the data: searching for clarity from a time of uncertainty; riding an emotional rollercoaster; seeking peace in one’s decisions; moving forward with each new day; taking comfort in the memories; valuing layers of support; and discovering life on one’s own.ConclusionBy identifying and gaining an understanding of healing following the death of a loved one in the ICU, nursing and other healthcare providers have an opportunity to promote healing and positively impact family caregiver’s bereavement.

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Development and validation of the Family Decision-Making Self-Efficacy Scale

Palliative & Supportive Care ◽

10.1017/s1478951509990241 ◽

2009 ◽

Vol 7 (3) ◽

pp. 315-321 ◽

Cited By ~ 27

Author(s):

Marie T. Nolan ◽

Mark T. Hughes ◽

Joan Kub ◽

Peter B. Terry ◽

Alan Astrow ◽

...

Keyword(s):

Decision Making ◽

Self Efficacy ◽

Family Members ◽

Terminally Ill ◽

Loved One ◽

The Family ◽

Family Decision ◽

Patient Scenario ◽

Family Decision Making ◽

Test Retest Reliability

AbstractObjective:Several studies have reported high levels of distress in family members who have made health care decisions for loved ones at the end of life. A method is needed to assess the readiness of family members to take on this important role. Therefore, the purpose of this study was to develop and validate a scale to measure family member confidence in making decisions with (conscious patient scenario) and for (unconscious patient scenario) a terminally ill loved one.Methods:On the basis of a survey of family members of patients with amyotrophic lateral sclerosis (ALS) enriched by in-depth interviews guided by Self-Efficacy Theory, we developed six themes within family decision making self-efficacy. We then created items reflecting these themes that were refined by a panel of end-of-life research experts. With 30 family members of patients in an outpatient ALS and a pancreatic cancer clinic, we tested the tool for internal consistency using Cronbach's alpha and for consistency from one administration to another using the test–retest reliability assessment in a subset of 10 family members. Items with item to total scale score correlations of less than .40 were eliminated.Results:A 26-item scale with two 13-item scenarios resulted, measuring family self-efficacy in decision making for a conscious or unconscious patient with a Cronbach's alphas of .91 and .95, respectively. Test–retest reliability was r = .96, p = .002 in the conscious senario and r = .92, p = .009 in the unconscious scenario.Significance of results:The Family Decision-Making Self-Efficacy Scale is valid, reliable, and easily completed in the clinic setting. It may be used in research and clinical care to assess the confidence of family members in their ability to make decisions with or for a terminally ill loved one.

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Brain injury rehabilitation: The lived experience of inpatients and their family caregivers

Scandinavian Journal of Occupational Therapy ◽

10.3109/11038128.2011.611531 ◽

2011 ◽

Vol 19 (2) ◽

pp. 184-193 ◽

Cited By ~ 13

Author(s):

Jennifer Fleming ◽

Jennifer Sampson ◽

Petrea Cornwell ◽

Ben Turner ◽

Janell Griffin

Keyword(s):

Brain Injury ◽

Lived Experience ◽

Family Caregivers ◽

Injury Rehabilitation

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New Frontiers in Caregiving Research: Biopsychosocial Perspectives and Interventions

Innovation in Aging ◽

10.1093/geroni/igaa057.2086 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 615-615

Author(s):

Jyoti Savla ◽

Karen Roberto ◽

Mamta Sapra

Keyword(s):

Family Caregivers ◽

Memory Loss ◽

Well Being ◽

Psychoeducational Intervention ◽

Loved One ◽

Daily Diary Study ◽

Physiological Processes ◽

And Coping ◽

With Memory ◽

Health And Well Being

Abstract Although families embrace the opportunity to care for a loved one, caregiving is stressful and takes a toll on the caregiver’s health and well-being. Earlier studies of stress and coping among family caregivers focused on psychological outcomes and emotional well-being. In the last decade, stress researchers have broadened their focus to include biomarkers and health outcomes. Data from two studies of caregivers of persons with memory loss will be used to discuss two new frontiers of caregiving research. First, a daily-diary study will be used to identify the mechanism by which stress disrupts the physiological processes and proliferates into serious psychopathology and pre-clinical and clinical health conditions. Second, a mindfulness-based psychoeducational intervention study will be utilized to identify malleable factors that can be harnessed to lower stress and improve the well-being of family caregivers. Next steps for caregiving research in the context of demographic and technological trends will be discussed.

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Patient–family EoL communication and its predictors: Reports from caregivers of Latino patients in the rural U.S.–Mexico border region

Palliative & Supportive Care ◽

10.1017/s147895151700092x ◽

2017 ◽

Vol 16 (5) ◽

pp. 520-527 ◽

Cited By ~ 1

Author(s):

Eunjeong Ko ◽

Jaehoon Lee ◽

Carlos Ramirez ◽

Denicka Lopez ◽

Stephanie Martinez

Keyword(s):

Cultural Values ◽

Family Caregivers ◽

Health Agency ◽

Border Region ◽

Treatment Preference ◽

Open Communication ◽

Loved One ◽

Her Family ◽

Mexico Border ◽

Advance Care

AbstractObjective:Family caregivers play an important role in end-of-life (EoL) decision making when the patient is unable to make his/her own decisions. While communication about EoL care between patients and family is perhaps a first step toward advance care planning (ACP)/EoL decisions, not every culture puts great value on open communication about this topic. The aims of the present study were to explore EoL communication and the aspects of communication among caregivers of Latino patients in the rural United States (U.S.)–Mexico border region.Method:This study analyzed data from a hospice needs assessment collected from 189 family caregivers of Latino patients at a home health agency in a rural U.S.–Mexico border region. Bivariate tests and logistic regression were used to address our aims.Results:About half of the family caregivers (n = 96, 50.8%) reported to have ever engaged in EoL discussion with patients. Significant predictors of EoL discussion included life-sustaining treatment preference (odds ratio [OR] = 0.44, p < 0.05); knowledge of an advance directive (AD) (OR = 5.50, p < 0.01); and distrust of physicians (OR = 0.29, p < 0.01). Caregivers who preferred extending the life of their loved one even if he/she had to rely on life supports were less likely to engage in EoL communication. Also, caregivers who worried that physicians might want to stop treatments (i.e., “pull the plug”) too soon were less likely to do so. Conversely, caregivers who had knowledge about ADs were more likely to engage in EoL communication.Significance of Results:EoL communication is a complex process influenced by individual, social, and cultural values and the beliefs of both the patient and his/her family. Inclusion of family caregivers in the ACP process and facilitating culturally tailored EoL communication between patients and family caregivers is important.

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Comparing the experiences of rural and urban family caregivers of the terminally ill

Rural and Remote Health ◽

10.22605/rrh2250 ◽

2013 ◽

Author(s):

Kevin Brazil ◽

Sharon Kaasalainen ◽

Allison Williams ◽

Christine Rodriguez

Keyword(s):

Family Caregivers ◽

Terminally Ill ◽

Rural And Urban ◽

Urban Family

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

10.26686/wgtn.16999240 ◽

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>

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