Caregivers: Experience, Burnout, and Health

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Community Care".

Deadline for manuscript submissions: closed (31 May 2024) | Viewed by 4601

Special Issue Editor


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Guest Editor
School of Education, Indiana University, Bloomington, IN, USA
Interests: children’s mental health; the role of the family; program evaluation and quantitative methods

Special Issue Information

Dear Colleagues,

Families bear the greatest responsibility for caring for relatives with disabilities and chronic health conditions. As the population ages, greater demands are placed on family caregivers. These additional demands are referred to as exceptional caregiving. Research has demonstrated that exceptional caregiving can impact a wide range of family outcomes including mental well-being, physical health, employment, income, and other resources.

The purpose of this Special Issue is to present current research on families’ experiences with exceptional care. Contributions will come from multiple fields such as family relations, disability studies, mental health services, employment, and geriatrics. Wide-ranging topics will be covered, including: employment support needs of exceptional caregivers; exceptional caregiving during transition periods of development (e.g., adolescence to adulthood); perspectives of siblings of children and adults with exceptional needs; health outcomes of exceptional caregivers; caring for justice-involved youth; and the relationship between exceptional caregiving experiences and the outcomes of children with disabilities. One goal of this Special Issue will be to provide research findings that can develop programming to support exceptional caregivers and their families.

Dr. Ana María Brannan
Guest Editor

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Keywords

  • exceptional caregiving
  • informal caregiving
  • caregivers
  • caregiver burden
  • caregiver wellbeing
  • family relations
  • disability studies
  • mental health services
  • geriatrics
  • program evaluation
  • quantitative methods

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Published Papers (4 papers)

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Research

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16 pages, 1134 KiB  
Article
Benefits Perceived by Caregivers of Patients with Alzheimer’s Disease on Physical and Emotional Health in an Interdisciplinary Program: A Qualitative Study
by Javier Urbano-Mairena, Javier De Los Ríos-Calonge, Salvador Postigo-Mota, Julián Carvajal-Gil, Elisa Sofía Silveira-Saraiva, Joan Guerra-Bustamante and Laura Muñoz-Bermejo
Healthcare 2024, 12(14), 1414; https://doi.org/10.3390/healthcare12141414 - 16 Jul 2024
Viewed by 974
Abstract
Alzheimer’s disease is the most common type of dementia, severely affecting the families and caregivers who live with those affected. The aim was to explore the physical, psychological, and behavioral benefits for caregivers of people with Alzheimer’s disease. Fifteen semi-structured interviews were conducted [...] Read more.
Alzheimer’s disease is the most common type of dementia, severely affecting the families and caregivers who live with those affected. The aim was to explore the physical, psychological, and behavioral benefits for caregivers of people with Alzheimer’s disease. Fifteen semi-structured interviews were conducted with informal Alzheimer’s caregivers upon completion of the program. Following a discussion on the topics, categories, and codes among the researchers, a consensus was reached to obtain the final themes and categories. Three main categories were obtained: (1) perceived benefits by the participants; (2) applicability of the knowledge; and (3) proposals for improvement. Participants expressed having perceived improvements in their ability to manage emotions and cope with the situation created by the disease, physical capacity, and in their relationships. In this sense, the application of the contents addressed during the intervention became a fundamental tool for the participants’ daily lives. This study showed how an interdisciplinary intervention with psychological sessions, health education, and physical activities could be beneficial for improving both the physical and mental health of caregivers. Full article
(This article belongs to the Special Issue Caregivers: Experience, Burnout, and Health)
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15 pages, 861 KiB  
Article
Healthcare Communication Experiences of Hispanic Caregivers of Childhood Cancer Survivors
by Carol Y. Ochoa-Dominguez, Matthew P. Banegas, Kimberly A. Miller, Carlos Orellana Garcia, Daniel Sabater-Minarim and Randall Y. Chan
Healthcare 2024, 12(13), 1307; https://doi.org/10.3390/healthcare12131307 - 30 Jun 2024
Viewed by 948
Abstract
Background: Interpersonal communication is a crucial component of the cancer experience that can contribute to managing cancer care and improving cancer survivors’ and caregivers’ quality of life. Cultural and contextual factors may impact Hispanic childhood cancer survivor (CCS) and parent caregiver relationships and [...] Read more.
Background: Interpersonal communication is a crucial component of the cancer experience that can contribute to managing cancer care and improving cancer survivors’ and caregivers’ quality of life. Cultural and contextual factors may impact Hispanic childhood cancer survivor (CCS) and parent caregiver relationships and communication. This study sought to describe the healthcare communication experiences of Hispanic parents with CCS, families, and medical providers. Methods: We conducted 15 semi-structured interviews with Hispanic caregivers from a safety-net hospital in Los Angeles County. Interviews were conducted in English and Spanish, audio-recorded and professionally transcribed, and analyzed using a thematic approach. Results: Caregivers shared the importance and impact of medical communication when exploring the “first big talk” of the diagnosis, uncertainty about treatment, navigating multiple providers, therapeutic communication (i.e., providing emotional reassurance), and current and lingering effects of cancer. All caregivers shared “good communication” experiences, while others shared various barriers to communication, including a lack of understanding of the cancer diagnosis and caregiver experience, psychological challenges impacting communication, cultural and language differences, physical factors that limit communication, and young age of child impacting communication with caregivers. Conclusions: Our findings suggest that a strong interpersonal communication skill set for clinicians can contribute to managing cancer care and improving caregivers’ psychological adjustment. Full article
(This article belongs to the Special Issue Caregivers: Experience, Burnout, and Health)
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15 pages, 770 KiB  
Article
Promoting Spiritual Coping of Family Caregivers of an Adult Relative with Severe Mental Illness: Development and Test of a Nursing Intervention
by Tiago Casaleiro, Helga Martins and Sílvia Caldeira
Healthcare 2024, 12(13), 1247; https://doi.org/10.3390/healthcare12131247 - 22 Jun 2024
Cited by 1 | Viewed by 1250
Abstract
Severe mental illness disrupts daily functioning, burdening family caregivers, who often adopt spiritual coping strategies. With comprehensive skills, mental health nurses can promote well-being and mental health. The aim is to develop and test the nursing intervention “promoting spiritual coping” in the family [...] Read more.
Severe mental illness disrupts daily functioning, burdening family caregivers, who often adopt spiritual coping strategies. With comprehensive skills, mental health nurses can promote well-being and mental health. The aim is to develop and test the nursing intervention “promoting spiritual coping” in the family caregivers of home-dwelling people with mental illness. This study was conducted in two distinct stages. Initially, the intervention was developed according to the first phase of the Framework for Developing and Evaluating Complex Interventions. Secondly, the intervention protocol was tested in a mixed-method pilot study. An intervention protocol was developed and tested on ten family caregivers. The intervention comprised three sessions, and before-and-after assessments were conducted. Significant improvements were observed in the outcomes, with caregivers expressing that discussing spirituality and religiosity benefited them. This intervention prioritized the therapeutic relationship of the nurses and family caregivers. The intervention “promoting spiritual coping” was created and evaluated as a suitable approach for mental health nurses to use in a psychotherapeutic context with family caregivers of individuals with mental illness. Full article
(This article belongs to the Special Issue Caregivers: Experience, Burnout, and Health)
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20 pages, 2769 KiB  
Systematic Review
Caregiver Burden among Patients with Influenza or Influenza-like Illness (ILI): A Systematic Literature Review
by Shailja Vaghela, Verna L. Welch, Anup Sinh and Manuela Di Fusco
Healthcare 2024, 12(16), 1591; https://doi.org/10.3390/healthcare12161591 - 9 Aug 2024
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Abstract
Influenza and influenza-like illness (ILI) pose significant clinical and economic burdens globally each year. This systematic literature review examined quantitative studies evaluating the impact of patients’ influenza/ILI on their caregivers’ well-being, focusing on health-related quality of life (HRQoL), work productivity, and activity impairment. [...] Read more.
Influenza and influenza-like illness (ILI) pose significant clinical and economic burdens globally each year. This systematic literature review examined quantitative studies evaluating the impact of patients’ influenza/ILI on their caregivers’ well-being, focusing on health-related quality of life (HRQoL), work productivity, and activity impairment. A comprehensive search across six databases, including the Cochrane Database of Systematic Reviews, Embase, MEDLINE via PubMed, Ovid, PsycNet, and Web of Science, yielded 18,689 records, of which 13,156 abstracts were screened, and 662 full-text articles were reviewed from January 2007 to April 2024. Thirty-six studies [HRQoL: 2; productivity: 33; both: 1] covering 22 countries were included. Caregivers of 47,758 influenza or ILI patients across 123 study cohorts were assessed in the review. The mean workday loss among caregivers ranged from 0.5 to 10.7 days per episode, influenced by patients’ influenza status (positive or negative), disease severity (mild or moderate-to-severe), age, viral type (influenza A or B), and vaccination/treatment usage. The HRQoL of caregivers, including their physical and emotional well-being, was affected by a patient’s influenza or ILI, where the severity and duration of a patient’s illness were associated with worse HRQoL. This review shows that the consequences of influenza or ILI significantly affect not only patients but also their caregivers. Full article
(This article belongs to the Special Issue Caregivers: Experience, Burnout, and Health)
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