A metasynthesis study of family caregivers’ transition experiences caring for community-dwelling persons with advanced cancer at the end of life

2016 ◽  
Vol 31 (7) ◽  
pp. 602-616 ◽  
Author(s):  
Wendy Duggleby ◽  
Jamie Tycholiz ◽  
Lorraine Holtslander ◽  
Peter Hudson ◽  
Cheryl Nekolaichuk ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Community Dwelling ◽  
Qualitative Studies ◽  
Care Recipient ◽  
Empirical Literature ◽  
Future Research ◽  
Life Transition ◽  
Transition Experience

Background: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. Aims: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Design: Sandelowski and Barroso’s methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Data sources: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. Results: A total of 72 studies were included in the metasynthesis. Family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. Conclusion: The findings provide a framework to guide the development of supportive programs and future research.

scholarly journals Perceptions of Family Caregivers of People With Dementia Regarding Symptom Management and the COVID-19 Pandemic

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 154-155
Author(s):  
Melissa Harris ◽  
Marita Titler
Keyword(s):  
Older Adults ◽  
Family Caregivers ◽  
Community Services ◽  
Community Dwelling ◽  
Care Recipient ◽  
Future Research ◽  
Service Access ◽  
Psychological Responses ◽  
People With Dementia ◽  
The Impact

Abstract Nearly 98% of older adults with Alzheimer’s disease and related dementias (ADRD) experience behavioral and psychological symptoms of dementia (BPSD). Although BPSD are linked to caregiver burden, perceptions of family caregivers on the impact of BPSD and their experiences addressing them in the home are unclear, and little is known about the impact of the pandemic on these experiences. Study aims were to explore: 1) the experiences of family caregivers of community dwelling older adults with ADRD regarding BPSD and how they manage BPSD in the home, and 2) how the pandemic impacted family caregivers’ experiences, BPSD of their relatives, and BPSD management. A qualitative, exploratory approach was used; 21 family caregivers were interviewed virtually. Content analysis and constant comparative methods were used. Ten major themes emerged: 1) Emotional and psychological responses of caregiver, 2) Loss, 3) Anticipation, 4) Reliance, 5) Learning to caregive, 6) Rewarding, 7) Emotional and psychological responses of care recipient 8) Cognition of care recipient, 9) Care strategies, 10) Caregiver perspectives. Caregivers did not use terms “behaviors” or “symptoms”, instead they described their relatives’ and their own experiences interdependently. Caregiving challenges presented before the pandemic (e.g. equivocal effects of medications, increasing care demands), many of which were compounded by the pandemic. Future research should explore the experiences of caregivers from a range of backgrounds. Findings illustrate communication barriers exist between clinicians, community services, people with ADRD and their families which may be addressed through clinician education, family-centered care planning, and policies to expand support service access.

scholarly journals Family caregiver emotional distress in advanced cancer: the DME-C scale psychometric properties

2020 ◽  
pp. bmjspcare-2020-002608
Author(s):  
Joaquín T Limonero ◽  
Jorge Maté-Méndez ◽  
María José Gómez-Romero ◽  
Dolors Mateo-Ortega ◽  
Jesús González-Barboteo ◽  
...  
Keyword(s):  
Psychometric Properties ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Emotional Distress ◽  
Family Caregiver ◽  
Screening Tools ◽  
Anxiety And Depression ◽  
The Family ◽  
End Stage

BackgroundFamily caregivers of patients with advanced illness at end of life often report high levels of emotional distress. To address this emotional distress is necessary to have adequate and reliable screening tools.AimThis study analyses the psychometric properties and clinical utility of the Family Caregiver Emotional Detection Scale for caregivers of patients with end-stage cancer (DME-C, Spanish acronym) who are receiving palliative care (PC).DesignMulticentre, cross-sectional study.Settings/participantsFamily caregivers of patients with advanced cancer at end of life receiving palliative treatment were interviewed to explore their emotional distress through the DME-C scale and other instruments measuring anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), distress thermometer (DT) and overload (B), as well as a clinical psychological assessment (CPA).Results138 family caregivers, 85 (61.6%) female and 53 (38.4%) male, with an average age of 59.69±13.3 participated in the study. The reliability of the scale, as measured by Cronbach’s alpha, was 0.76, and its stability over time was 0.734. Positive, significant correlations were found between the DME-C and the scores for anxiety and depression registered on the HADS scale, as well as with the total result of this latter scale and the results for B, the DT and the CPA. A statistical analysis of the receiver-operating characteristic curves showed that the scale has a sensitivity and specificity of 75%, and that the cut-off point for the detection of emotional distress was a score ≥11. Fifty-four per cent of the caregivers displayed emotional distress according to this scale.ConclusionsThe DME-C displays good psychometric properties. It is simple, short, reliable and easy to administer. We believe that the instrument is useful for the detection of emotional distress in the family caregivers of hospitalised patients suffering from end-stage illnesses and receiving PC.

“There isn't an easy way of finding the help that's available.” Barriers and facilitators of service use among dementia family caregivers: a qualitative study

2017 ◽  
Vol 29 (5) ◽  
pp. 765-776 ◽  
Author(s):  
Ashley Macleod ◽  
Gemma Tatangelo ◽  
Marita McCabe ◽  
Emily You
Keyword(s):  
Family Caregivers ◽  
Service Use ◽  
Care Service ◽  
Aged Care ◽  
Community Dwelling ◽  
Barriers And Facilitators ◽  
Care Recipient ◽  
Structured Interviews ◽  
Good Communication ◽  
People With Dementia

ABSTRACTBackground:Family caregivers of people with dementia have significant unmet needs in regard to their caregiving role. Despite this, they are reluctant to utilize services to reduce their burden. The aim of this study was to examine the barriers and facilitators of service use among family caregivers of people with dementia.Method:Semi-structured interviews were conducted with 24 family caregivers of community-dwelling people with dementia. Of these, 12 were partner caregivers (4 men, 8 women) and 12 were offspring caregivers (2 men, 10 women). The interviews were transcribed and analyzed using thematic analysis.Results:Six main barriers and three facilitators were identified. These barriers and facilitators were relevant across many types of services and supports. The barriers were: the inability to find information about relevant services or support, the poor quality or mistrust of the services, the inflexibility of services, caregivers’ beliefs about their obligations to the caregiving role and resistance by the care recipient. Key facilitators were: having good communication with the care recipient, having an “expert” point of contact, and having beliefs about the caregiving role that enabled the use of services.Conclusion:Given the significant changes in the aged care service-system, it is important to discuss the barriers faced by family caregivers of people with dementia. This will inform the development of targeted strategies to address the lack of service use among these family caregivers.

Family communication and decision making at the end of life: A literature review

2014 ◽  
Vol 13 (3) ◽  
pp. 815-825 ◽  
Author(s):  
Cara L. Wallace
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Family Communication ◽  
End Of Life Care ◽  
Family Members ◽  
Empirical Literature ◽  
Future Research ◽  
Life Care ◽  
The Family

AbstractObjective:Patients and families coping with a terminal illness are faced with a number of decisions over the course of their disease. The role that family communication plays in the process of decision making is an important one. The objectives for this review are to examine the current state of empirical literature on the relationship between family communication and decision making about end-of-life care, to identify gaps, and to discuss implications for policy, practice, and future research.Method:Articles were identified using systematic keyword searches within the following relevant databases: Academic Search Complete, CINAHL Plus, Communications and Mass Media Complete, ERIC, PsychINFO, MEDLINE, SocINDEX, and ProQuest.Results:The three bodies of relevant literature that emerged during this review include: (1) the importance of family communication at the end of life (EoL); (2) family decision making at the EoL; and (3) the interrelationship of communication (both within the family and with healthcare professionals) and decision making at the EoL. While the literature highlights the role of communication between medical professionals and the patient or family members, there is very little focus on the process of how family communication among the family members themselves contributes to decision making at the end of life.Significance of results:Barriers to end-of-life care are important considerations for helping patients to access timely and appropriate services. Understanding the pertinent role of family communication as it relates to the decision for EoL care is the first step in working to provide another avenue for overcoming these barriers.

Making Sense of Loss: A Content Analysis of End-of-Life Practitioners' Therapeutic Approaches

2008 ◽  
Vol 57 (2) ◽  
pp. 121-141 ◽  
Author(s):  
Joseph M. Currier ◽  
Jason M. Holland ◽  
Robert A. Neimeyer
Keyword(s):  
Content Analysis ◽  
End Of Life ◽  
Meaning Making ◽  
Intervention Strategies ◽  
Empirical Literature ◽  
Future Research ◽  
Therapeutic Approaches ◽  
Making Sense ◽  
Therapeutic Procedures

Clinical professionals working in end-of-life (EOL) contexts are frequently relied upon to address questions of meaning with dying and bereaved persons. Similar to the gulf between researchers and practitioners besetting the larger healthcare community, the voices of EOL practitioners are often underrepresented in the empirical literature. This study aimed to further the dialogue in the field of thanatology by surveying and describing the therapeutic approaches that EOL practitioners most commonly report using to facilitate meaning-making. A total of 119 practitioners from a range of EOL disciplines were surveyed to write about their intervention strategies for helping clients/patients make sense of loss. Overall, participants discussed using 23 different therapeutic approaches that comprised three overarching categories: 1) presence of the helping professional; 2) elements of the process; and 3) therapeutic procedures. Importantly, the results also indicated that practitioners from the different EOL occupations are converging on many of the same strategies for promoting meaning-making. Implications for future research on evaluating the effectiveness of meaning-making interventions are also discussed.

scholarly journals Assessing the need for a question prompt list that encourages end-of-life discussions between patients with advanced cancer and their physicians: A focus group interview study

2021 ◽  
pp. 1-6
Author(s):  
Ayako Sato ◽  
Maiko Fujimori ◽  
Yuki Shirai ◽  
Shino Umezawa ◽  
Masanori Mori ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Focus Group ◽  
Cancer Treatment ◽  
End Of Life ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Question Prompt List ◽  
Question Prompt ◽  
Active Cancer

Abstract Objective Early integration of palliative and cancer care improves the quality of life and is facilitated by discussions about the end of life after cessation of active cancer treatment between patients with advanced cancer and their physicians. However, both patients and physicians find end-of-life discussions challenging. The aim of this study was to assess the need for a question prompt list (QPL) that encourages end-of-life discussions between patients with advanced cancer and their physicians. Methods Focus group interviews (FGIs) were conducted with 18 participants comprising 5 pancreatic cancer patients, 3 family caregivers, 4 bereaved family members, and 6 physicians. Three themes were discussed: question items that should be included in the QPL that encourages end-of-life discussions with patients, family caregivers, and physicians after cessation of active cancer treatment; when the QPL should be provided; and who should provide the QPL. Each interview was audio-recorded, and content analysis was performed. Results The following 9 categories, with 57 question items, emerged from the FGIs: (1) preparing for the end of life, (2) treatment decision-making, (3) current and future quality of life, (4) current and future symptom management, (5) information on the transition to palliative care services, (6) coping with cancer, (7) caregivers’ role, (8) psychological care, and (9) continuity of cancer care. Participants felt that the physician in charge of the patient's care and other medical staff should provide the QPL early during active cancer treatment. Significance of results Data were collected to develop a QPL that encourages end-of-life discussions between patients with advanced cancer and their physicians.

scholarly journals End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers

2020 ◽  
pp. 026921632097426
Author(s):  
Michael Toze ◽  
Mo Ray ◽  
Thomas George ◽  
Kelly Sisson ◽  
David Nelson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Premature Death ◽  
Qualitative Studies ◽  
Future Research ◽  
Neurological Conditions ◽  
Informal Carers ◽  
The Right ◽  
Models Of Service Delivery

Background: Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. Aims: This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. Design: This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Data Sources: Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Results: Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers’ roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Conclusions: Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.

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