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The Role of the Caregiver in Health and Social Care: The Importance of Caring for the Caregiver

A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: closed (30 April 2021) | Viewed by 67688

Special Issue Editors


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Guest Editor
Health Psychology Department, Universidad Miguel Hernández de Elche, Comunidad Valenciana, 03202 Elche, Spain
Interests: chronic disease; quality assurance; caregivers; health services evaluation; qualitative research
Special Issues, Collections and Topics in MDPI journals

E-Mail Website
Guest Editor
Health Psychology Department, Universidad Miguel Hernández de Elche, Comunidad Valenciana, 03202 Elche, Spain
Interests: communication; heatlh behaviour; quality assurance; caregivers; health services evaluation

E-Mail Website
Guest Editor
Departamento de Psicología de la Salud, Universidad Miguel Hernández, 03002 Elche, Spain
Interests: patient safety; quality assurance; second victim; health services evaluation; occupational health; qualitative research
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

The Special Issue “The Role of the Caregiver in Health and Social Care”, of the International Journal of Environmental Research and Public Health, is being organized. For detailed information on the journal, I refer you to https://www.mdpi.com/journal/ijerph.

Chronic patients experience a progressive loss of autonomy and a need for support in managing symptoms and treatment, dealing with side effects, communicating with health professionals, emotional care, and, in the most severe cases, in carrying out the tasks of daily life  (Cienfrocca et al., 2018; Heckel, Fennell, Mohebbi, Byrnes & Livingston, 2017). Most of the time, it is a family member who takes responsibility for a chronic patient’s care. In Spain, caregivers are mainly married women between 45 and 65 years of age, usually daughter or partner of the sick person (Guilabert et al., 2018; Zueras, Spijker & Blanes, 2018).

Informal caregivers are responsible for meeting the physical and emotional needs of the people they care for. This may be a demanding experience that has been linked by several studies to serious physical and emotional consequences, including somatic symptoms, depression, anxiety, loneliness, and stress. In addition, it is common for caregivers to experience work, social, and economic problems and a poorer quality of life compared to non-caregivers (Bustillo, Gómez-Gutiérrez & Guillén, 2018; Heynsbergh, Heckel, Botti & Livingston, 2018).

Risk factors for overburdening are being female, having a low level of education, living with the caregiver, experiencing depression, social isolation, financial difficulties, and increased caregiving hours and caregiving responsibilities (Adelman, Tmanova, Delgado, Dion & Lachs, 2014).

Health care continues to be focused on an acute disease model and is not fully prepared to meet the needs of patients living with one or more chronic conditions (Mira et al., 2015). In addition, it focuses on patients’ outcomes without considering the needs of their family caregivers, even though the caregiver's well-being has been shown to be related to the health of the person they are caring for (Koşan, Yılmaz, Bilge & Köyceğiz, 2019).

This Special Issue aims to highlight the importance of the caregiver's role, underscoring the urgency of developing new metrics to assess their needs as well as programs and interventions to support their fundamental role in health and social care.

Prof. Dr. Mercedes Guilabert Mora
Prof. Dr. Virtudes Pérez-Jover
Prof. Dr. Irene Carrillo Murcia
Guest Editors

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Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

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Keywords

  • Caregiver
  • Chronic Disease
  • Quality indicators
  • Health Care
  • Dependency
  • Alzheimer Disease
  • Social Work
  • Palliative Care
  • Psychology
  • Surveys and Questionnaires
  • Qualitative Research
  • Health Programs
  • Occupational Health Program

Published Papers (18 papers)

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11 pages, 352 KiB  
Article
Clinical Holding in Pediatric Venipuncture: Caring by Empowering the Caregiver
by Manuel Tomás-Jiménez, Elena Fernández Díaz, María Jesús Flores Sánchez, Andrea Navarro Pliego and Ramon Mir-Abellán
Int. J. Environ. Res. Public Health 2021, 18(14), 7403; https://doi.org/10.3390/ijerph18147403 - 11 Jul 2021
Cited by 1 | Viewed by 2576
Abstract
The use of restraint in the child-adolescent population is highly controversial due to the consequences it can have for patients and their families, although it is sometimes necessary to employ restraint to perform techniques safely and effectively. Clinical Holding is committed to the [...] Read more.
The use of restraint in the child-adolescent population is highly controversial due to the consequences it can have for patients and their families, although it is sometimes necessary to employ restraint to perform techniques safely and effectively. Clinical Holding is committed to the involvement of parents during venipuncture in the context of family-centred care. This study assesses levels of distress and pain in children undergoing this procedure, as well as satisfaction in parents and nurses. Parents assist in the restraint of children and provide accompaniment during venipuncture. Levels of distress and pain were not particularly elevated. Satisfaction levels among parents and nurses were high. A positive correlation was found between anticipatory and real distress (r = 0.737, p = 0.000), and between real distress and real pain (r = 0.368, p = 0.035). A negative correlation was observed between real pain and parent satisfaction (r = −0.497, p = 0.003). Parental participation during venipuncture contributed to better management of distress and pain. In the future, it would be advisable to incorporate the other pharmacological and non-pharmacological measures recommended by Clinical Holding to ensure care of the highest quality and safety. Full article
11 pages, 667 KiB  
Article
The Moderating Role of Caregiving on Fear of COVID-19 and Post-Traumatic Stress Symptoms
by José Luis Carballo, Ainhoa Coloma-Carmona, Sara Arteseros-Bañón and Virtudes Pérez-Jover
Int. J. Environ. Res. Public Health 2021, 18(11), 6125; https://doi.org/10.3390/ijerph18116125 - 6 Jun 2021
Cited by 10 | Viewed by 3173
Abstract
Caregiving has been associated with increased levels of fear and post-traumatic stress symptoms (PTSS) during COVID-19 pandemic. However, there is a lack of studies that analyze when the relationship between fear and PTSS occur, using informal caregiving as a moderator variable. To explore [...] Read more.
Caregiving has been associated with increased levels of fear and post-traumatic stress symptoms (PTSS) during COVID-19 pandemic. However, there is a lack of studies that analyze when the relationship between fear and PTSS occur, using informal caregiving as a moderator variable. To explore this moderating role, we conducted a cross-sectional online study between November 2020 and January 2021. A total of 503 men and women from the Spanish general population completed the survey. Sociodemographic and Covid-19-related data, fear of COVID-19, PTSS symptoms, and current psychological history were assessed. Prevalence of informal caregiving in the sample was 16.5%. Increased levels of fear and PTSS were found in caregivers compared to non-caregivers. Female gender and high number of COVID-19 related risk factors was also associated with fear and PTSS severity. The moderation analyses showed an interaction effect between caregiving and fear of COVID-19 when predicting PTSS symptoms. Particularly, results showed that informal caregivers reported greater PTSS symptoms, when compared to non-caregivers with same levels of fear of COVID-19. This evidence suggests that being a caregiver could increase the fear’s impact on PTSS severity in the context of pandemics. Further studies with larger samples are needed to confirm these findings. Full article
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17 pages, 1910 KiB  
Article
The Impact of Caregiving Burden on Mental Well-Being in Coronary Artery Bypass Graft Surgery Caregivers: The Mediatory Role of Perceived Social Support
by Claudio Singh Solorzano, Elizabeth Leigh, Andrew Steptoe, Amy Ronaldson, Tara Kidd, Marjan Jahangiri and Lydia Poole
Int. J. Environ. Res. Public Health 2021, 18(10), 5447; https://doi.org/10.3390/ijerph18105447 - 19 May 2021
Cited by 4 | Viewed by 3242
Abstract
An increase in caregiver burden and a decrease in social support have both been identified as predictors of poor caregiver psychological distress. However, little is known about the role of these factors in coronary artery bypass graft (CABG) caregivers. The purpose of this [...] Read more.
An increase in caregiver burden and a decrease in social support have both been identified as predictors of poor caregiver psychological distress. However, little is known about the role of these factors in coronary artery bypass graft (CABG) caregivers. The purpose of this study was to investigate whether change in perceived social support from pre to post surgery mediated the relationship between change in caregiver burden and caregiver depressive symptoms and subjective well-being post surgery. A sample of 101 caregivers of elective CABG patients were assessed 28 days before and 62 days after patients’ surgery. Caregivers completed the Oberst Burden Scale, the Enhancing Recovery in Coronary Heart Disease (ENRICHD) Social Support Instrument, the Beck Depression Inventory, and the Control, Autonomy, Self-Realisation, and Pleasure (CASP-19) scale. Simple mediation analyses showed that change in social support significantly mediated both the relationship between change in caregiver burden and post-surgery depressive symptoms (unstandardised β = 0.041, 95% CI (0.005, 0.112)) and the relationship between change in caregiver burden and post-surgery subjective well-being (unstandardised β = 0.071, 95% CI (0.001, 0.200)). Psychological interventions aimed at the CABG caregiver population should promote social support to deal with the increase of caregivers’ tasks and demands after the patients’ surgery. Full article
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14 pages, 352 KiB  
Article
Surviving and Thriving: Qualitative Results from a Multi-Year, Multidimensional Intervention to Promote Well-Being among Caregivers of Adults with Dementia
by Meara H. Faw, India Luxton, Jennifer E. Cross and Deana Davalos
Int. J. Environ. Res. Public Health 2021, 18(9), 4755; https://doi.org/10.3390/ijerph18094755 - 29 Apr 2021
Cited by 9 | Viewed by 3240
Abstract
(1) Introduction: Caring for an adult with dementia is both challenging and rewarding. Research indicates that community-based, social support, and/or arts engagement interventions can play a key role in ameliorating the negative outcomes associated with caregiving while enhancing its more positive attributes. This [...] Read more.
(1) Introduction: Caring for an adult with dementia is both challenging and rewarding. Research indicates that community-based, social support, and/or arts engagement interventions can play a key role in ameliorating the negative outcomes associated with caregiving while enhancing its more positive attributes. This study explores the psychosocial outcomes experienced by dementia caregivers who participated in a multi-year, multidimensional intervention aimed at promoting caregiver and care recipient well-being. This intervention included bringing caregivers and people with Alzheimer’s disease or related dementias (ADRD) to local symphony performances, hosting a social reception prior to the performance, and assessing the outcomes of participation for both caregiver and the care recipient. (2) Materials, Methods, and Analysis: Qualitative data from participant phone interviews (n = 55) as well as focus groups are analyzed using thematic analysis from a phenomenological perspective. (3) Results: Across three years of participation, caregivers reported three main program benefits: relationship building (both with other participants as well as within the broader community); restored humanity (experiencing a greater sense of personal dignity and momentary return to normalcy), and positivity (experiencing positive emotions during the program). (4) Discussion: These findings point to the value of creating caregiver programming that brings together multiple dimensions of successful interventions in order to enhance caregiver experiences and positive intervention outcomes. Full article
20 pages, 2928 KiB  
Article
The Role of Parent/Caregiver with Children Affected by Rare Diseases: Navigating between Love and Fear
by Beni Gómez-Zúñiga, Rafael Pulido, Modesta Pousada and Manuel Armayones
Int. J. Environ. Res. Public Health 2021, 18(7), 3724; https://doi.org/10.3390/ijerph18073724 - 2 Apr 2021
Cited by 15 | Viewed by 4616
Abstract
In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against [...] Read more.
In this paper, we propose a vision of the role of parent/caregiver with children affected by a rare disease. This vision is rooted in data obtained from our own research; however, our analysis and interpretation of this data have been subsequently checked against existing theoretical models. The research aims to explore how parents who look after children with a rare disease experience their role as caregivers and how they assimilate their role identity in this task. Semi-structured interviews were performed with parents of 10 children, and a qualitative data analysis was conducted using grounded theory. We have identified ten main categories using a grounded theory approach: stress, disorientation, insecurity, isolation, faith, trust, attention, communication with professionals, private proactivity and public proactivity. Our results also show that when parents perceive a greater burden due to looking after a child with a rare disease, the result is a change in the usual parental role. In our contribution, we offer a general outline of how parents build a role identity centred on caring for a child with a rare disease. We posit that this role identity is the outcome of the parents’ success or failure in gradually overcoming fear through love. We have conceptualized this process as navigating between love and fear. Full article
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11 pages, 351 KiB  
Article
A Clinical Bridge between Family Caregivers and Older Adults: The Contribution of Patients’ Frailty and Optimism on Caregiver Burden
by Alberto Sardella, Vittorio Lenzo, Angela Alibrandi, Antonino Catalano, Francesco Corica, Maria C. Quattropani and Giorgio Basile
Int. J. Environ. Res. Public Health 2021, 18(7), 3406; https://doi.org/10.3390/ijerph18073406 - 25 Mar 2021
Cited by 10 | Viewed by 3164
Abstract
The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional [...] Read more.
The association between caregiver burden and the physical frailty of older adults has been the object of previous studies. The contribution of patients’ dispositional optimism on caregiver burden is a poorly investigated topic. The present study aimed at investigating whether older adults’ multidimensional frailty and optimism might contribute to the burden of their family caregivers. The Caregiver Burden Inventory was used to measure the care-related burden of caregivers. The multidimensional frailty status of each patient was evaluated by calculating a frailty index, and the revised Life Orientation Test was used to evaluate patients’ dispositional optimism. The study involved eighty family caregivers (mean age 64.28 ± 8.6) and eighty older patients (mean age 80.45 ± 7.13). Our results showed that higher frailty status and lower levels of optimism among patients were significantly associated with higher levels of overall burden and higher burden related to the restriction of personal time among caregivers. Patients’ frailty was additionally associated with caregivers’ greater feelings of failure, physical stress, role conflicts, and embarrassment. Understanding the close connection between patient-related factors and the burden of caregivers appears to be an actual challenge with significant clinical, social, and public health implications. Full article
16 pages, 390 KiB  
Article
Relation among Caregivers’ Burden, Abuse and Behavioural Disorder in People with Dementia
by Ignacio Gimeno, Sonia Val and María Jesús Cardoso Moreno
Int. J. Environ. Res. Public Health 2021, 18(3), 1263; https://doi.org/10.3390/ijerph18031263 - 31 Jan 2021
Cited by 12 | Viewed by 4020
Abstract
Dementia produces a loss of independence to carry out the activities of daily life. The great demand for care that these people need usually falls on the family through informal care. This study aims to analyse the burden showed by the informal caregiver [...] Read more.
Dementia produces a loss of independence to carry out the activities of daily life. The great demand for care that these people need usually falls on the family through informal care. This study aims to analyse the burden showed by the informal caregiver of a person with dementia. In addition, we analyse whether this burden present in informal caregivers could be related to abusive behaviour. We also study the relationship between the stage of the disease, the appearance of behavioural disorders and the level of burden in the caregiver using the Scales of Zarit, CASE and FAST. The data showed that 45.50 per cent of caregivers have light burden or burden. After the research, it was identified that the presence of behavioural disorders in patients with dementia showed a correlation with the increase in both the main caregiver burden and abuse. An increase in the level of burden is followed by an increase in the level of abuse (r = 0.844; p = 0.000). Furthermore, we analysed several conditions that could have a correlation with this burden and abuse. It was found that burden in the caregiver could be linked with the presence of behavioural disorders, like aggression (r = 0.577; p = 0.008) and irritability (r = 0.600; p = 0.005) at the moderate stage of the disease. On the other hand, there is a positive correlation between the probability that people with dementia suffer abuse in the moderate stage of the disease and the presence of aggression (r = 0.732; p = 0.000), lack of inhibition (r = 0.571; p = 0.009) and irritability (r = 0.827; p = 0.000). Taking this data into account, burden and abuse seem to be linked to the presence of behavioural disorders in patients with dementia in the moderate stage. Full article
12 pages, 925 KiB  
Article
The Influence of Family Caregivers’ Experience of Interprofessional Care on Their Participation in Health Checkups as Preventive Health Behavior in Japan—A Cross-Sectional Analysis
by Gen Nakayama, Shoichi Masumoto, Junji Haruta and Tetsuhiro Maeno
Int. J. Environ. Res. Public Health 2021, 18(1), 223; https://doi.org/10.3390/ijerph18010223 - 30 Dec 2020
Cited by 2 | Viewed by 2468
Abstract
Background: The role of family caregivers has been vital, especially in superaging societies like Japan’s. The caregivers’ experience of interprofessional care is a key aspect in their evaluation of the quality of integrated care. We sought to explore whether family caregivers’ experience of [...] Read more.
Background: The role of family caregivers has been vital, especially in superaging societies like Japan’s. The caregivers’ experience of interprofessional care is a key aspect in their evaluation of the quality of integrated care. We sought to explore whether family caregivers’ experience of interprofessional care is associated with their own participation in health checkups as preventive health behaviors. Methods: We used cross-sectional data obtained during the development of the Japanese version of the Caregivers’ Experience Instrument (J-IEXPAC CAREGIVERS). Participants who had provided care for at least one year were surveyed (n = 251). We assessed family caregivers’ experience of interprofessional care using J-IEXPAC CAREGIVERS and their participation in health checkups. Results: Multivariate logistic regression analysis revealed that the J-IEXPAC CAREGIVERS total score was significantly associated with the caregivers’ participation in health checkups [odds ratio per 1-point increase = 1.05; 95% confidence interval 1.01–1.09]. Two domain scores (attention for the patient and attention for the caregiver) of J-IEXPAC CAREGIVERS were significantly associated with the outcome. Conclusions: Family caregivers with more positive experiences of interprofessional care were more likely to participate in health checkups. These results support the significance of family caregivers’ experience of care, which may promote preventive health behaviors. Full article
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12 pages, 543 KiB  
Article
Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation
by Johannes Boettcher, Jonas Denecke, Claus Barkmann and Silke Wiegand-Grefe
Int. J. Environ. Res. Public Health 2020, 17(23), 8975; https://doi.org/10.3390/ijerph17238975 - 2 Dec 2020
Cited by 28 | Viewed by 4144
Abstract
(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child’s disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors [...] Read more.
(1) Parents caring for children and adolescents with rare diseases fear the long-term progression of the child’s disease and the loss of their parental role. The aim of this study was to examine the quality of life, mental health and associated protective factors of mothers and fathers caring for children with rare diseases requiring mechanical long-term ventilation. (2) In a cross-sectional design, data on quality of life, mental health, coping mechanisms, social support and family functioning from n = 75 affected families were collected using standardized psychometric questionnaires. (3) Mothers compared to fathers were significantly more impaired in their quality of life and mental health. Protective factors significantly associated with the respective outcomes for mothers were coping mechanisms, social support and family functioning, whereas for fathers solely the latter was found to be significant. Multiple regression analyses showed that family functioning may be the most important predictor of quality of life and mental health. (4) The results support the need for family-oriented care in parents of children with rare diseases. To reach optimal efficiency, health care providers should not only screen parents for psychosocial impairment but also provide interventions that consider gender-specific differences in psychological health. Full article
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14 pages, 351 KiB  
Article
The Occupational Health of Female Immigrant Caregivers: A Qualitative Approach
by Rocío de Diego-Cordero, Juan Vega-Escaño, Lorena Tarriño-Concejero and María Ángeles García-Carpintero-Muñoz
Int. J. Environ. Res. Public Health 2020, 17(21), 7807; https://doi.org/10.3390/ijerph17217807 - 25 Oct 2020
Cited by 8 | Viewed by 2717
Abstract
In general, immigrants suffer poor working conditions. This is particularly true in the case of women, who constitute 48% of international migrants, and these poor conditions are closely linked to the sectors they mainly occupy, such as domestic and care-giving services. The aim [...] Read more.
In general, immigrants suffer poor working conditions. This is particularly true in the case of women, who constitute 48% of international migrants, and these poor conditions are closely linked to the sectors they mainly occupy, such as domestic and care-giving services. The aim of the present study was to investigate the working conditions of the female immigrant population living in southern Spain and how these conditions may affect their health. A qualitative study using semi-structured interviews and discussion groups was conducted over one year in 2019, with 61 immigrant women recruited. The sectors occupied by immigrant women were caregiving for dependent people and domestic services. Most of the female immigrants interviewed were working (63.94%), although the majority were employed in an irregular situation, with a very long working day. Among the main risks identified were biological risks, physical attacks, falls, wounds and musculoskeletal complaints related to handling patients and carrying out household chores. Most of them had not taken an occupational health test and did not report accidents occurring in the workplace for fear of losing their jobs. The main health problems were related to physical and mental health (such as musculoskeletal diseases and stress). These findings highlight the importance of making a major change in our perspective regarding the social value of including immigrant women in the labour market and the different aspects related to their health. Full article
17 pages, 2045 KiB  
Article
Development and Exploration of Psychometric Properties of the Family Adjustment Questionnaire for Admitting an Older Adult to a Nursing Home (CAFIAR)
by Antonio Riquelme-Marín, Marta Martín-Carbonell, Juan M. Ortigosa-Quiles and Inmaculada Méndez
Int. J. Environ. Res. Public Health 2020, 17(20), 7597; https://doi.org/10.3390/ijerph17207597 - 19 Oct 2020
Cited by 2 | Viewed by 2079
Abstract
Background: Admitting an older adult to a nursing home involves significant adjustment efforts by the family. Our goal was to prepare an assessment instrument for this, given that there was none to date. Method: Participants—134 relatives from different nursing homes in [...] Read more.
Background: Admitting an older adult to a nursing home involves significant adjustment efforts by the family. Our goal was to prepare an assessment instrument for this, given that there was none to date. Method: Participants—134 relatives from different nursing homes in the region of Murcia. Instruments—structured interview for socio-demographic information, satisfaction with the nursing home, well-being and health self-assessment, Radloff’s Depression Questionnaire (CES-D), and the first version of CAFIAR. Results: A 15-item instrument with three factors was obtained: Factor 1 (Unease due to admitting an older adult to a nursing home), Factor 2 (Relief), and Factor 3 (Nostalgia and concern for the older adult), in addition to a general adjustment index, with a Cronbach’s alpha of 0.74. The general adjustment index and the subscales that demonstrate poor adjustment were significantly correlated with depression and a worse health self-assessment, while the Relief subscale, which indicates better adjustment, was significantly correlated with well-being and a positive health self-assessment. Conclusions: The family adjustment in admitting an older adult to a nursing home questionnaire (CAFIAR) has adequate psychometric properties to assess family adaptation in admitting an older adult to an institution. Full article
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16 pages, 534 KiB  
Article
Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice
by Sara Santini, Marco Socci, Barbara D’Amen, Mirko Di Rosa, Giulia Casu, Valentina Hlebec, Feylyn Lewis, Agnes Leu, Renske Hoefman, Rosita Brolin, Lennart Magnusson and Elizabeth Hanson
Int. J. Environ. Res. Public Health 2020, 17(18), 6593; https://doi.org/10.3390/ijerph17186593 - 10 Sep 2020
Cited by 20 | Viewed by 5558
Abstract
Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an [...] Read more.
Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15–17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being. Full article
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13 pages, 355 KiB  
Article
Emotional Burden and Perceived Social Support in Male Partners of Women with Cancer
by Marcin J. Jabłoński, Francisco García-Torres, Paulina Zielińska, Alicja Bułat and Piotr Brandys
Int. J. Environ. Res. Public Health 2020, 17(12), 4188; https://doi.org/10.3390/ijerph17124188 - 12 Jun 2020
Cited by 9 | Viewed by 3099
Abstract
Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis. [...] Read more.
Background: The aim of this study was to describe the correlations between the psychosocial burden on male caregivers and their perception of social support, as well as distress, anxiety, and depression among their partners in the first six months after a cancer diagnosis. Methods: A cross-sectional, longitudinal and observational study was conducted on a group of 61 couples, with the use of Zarit Burden Interview (ZBI), Caregiver Burden Scale (CBS), Berlín Social Support Scales (BSSS), Hospital Anxiety and Depression Scale (HADS) and Distress Thermometer (DT). Statistical analysis was performed using Statistica v.13. Results: A strong positive correlation between the ZBI and CBS, as well as between support-seeking and the emotional involvement of male partners, was documented. The negative correlation between the lack of instrumental support and a much greater burden on caregivers, in emotional, social, and family life was documented. The level of distress, anxiety, and depression, as well as family problems reported by female patients, were positively correlated with the male caregiver′s burden. A demographic analysis showed significant relationships between the number of offspring and the negative health indicators of patients and their partners. Implications: The obtained results encourage deeper reflection on the need to improve the availability of instrumental support for male caregivers and support for families with an oncological ill parent in caring for minor children, and to maintain the social activity of the caregiver. Full article
10 pages, 481 KiB  
Article
Caregiver Burden Domains and Their Relationship with Anxiety and Depression in the First Six Months of Cancer Diagnosis
by Francisco García-Torres, Marcin J. Jabłoński, Ángel Gómez Solís, María José Jaén-Moreno, Mario Gálvez-Lara, Juan A. Moriana, María José Moreno-Díaz and Enrique Aranda
Int. J. Environ. Res. Public Health 2020, 17(11), 4101; https://doi.org/10.3390/ijerph17114101 - 9 Jun 2020
Cited by 21 | Viewed by 3182
Abstract
Cancer caregiving is associated with burden and a poor psychological state. However, there is no previous information about the predictive utility of specific burden domains on anxiety and depression in the first six months after a partner’s cancer diagnosis. In a longitudinal study, [...] Read more.
Cancer caregiving is associated with burden and a poor psychological state. However, there is no previous information about the predictive utility of specific burden domains on anxiety and depression in the first six months after a partner’s cancer diagnosis. In a longitudinal study, 67 caregivers completed the Zarit Burden Interview (ZBI) and Hospital Anxiety and Depression Scale (HADS) at T1 (45–60 days after diagnosis) and T2 (180–200 days after diagnosis). Most of the caregivers were female (65.7%, mean age = 51.63, SD = 13.25), while patients were mostly male (56.7%). The TRIPOD checklist was applied. ZBI scores were moderate and HADS anxiety reached significant values. There were no differences in ZBI and HADS between T1 and T2. The relationship between burden, anxiety, and depression were more consistent at T2, while emotional burden at T1 were related and predicted anxiety and depression at T2. Some burden domains were related and predicted anxiety in caregivers in the first six months after partner cancer diagnosis. This information could be useful to prevent the onset of these symptoms in the first six months after diagnosis. Full article
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13 pages, 376 KiB  
Article
Relationship of Perceived Social Support with Mental Health in Older Caregivers
by Laura Muñoz-Bermejo, José Carmelo Adsuar, Salvador Postigo-Mota, Inés Casado-Verdejo, Claudia Mara de Melo-Tavares, Miguel Ángel Garcia-Gordillo, Jorge Pérez-Gómez and Jorge Carlos-Vivas
Int. J. Environ. Res. Public Health 2020, 17(11), 3886; https://doi.org/10.3390/ijerph17113886 - 30 May 2020
Cited by 38 | Viewed by 4882
Abstract
Background: Elderly caregivers present increased physical and mental health problems. These factors can lead to a lack of autonomy and a need for social support. This study aims to analyse the relationships between perceived social support and mental health status in elderly caregivers [...] Read more.
Background: Elderly caregivers present increased physical and mental health problems. These factors can lead to a lack of autonomy and a need for social support. This study aims to analyse the relationships between perceived social support and mental health status in elderly caregivers aged 65 and older. Methods: a cross-sectional study based on data from the Spanish National Health Survey (ENSE-17) carried out on 7023 people. The study population was restricted to 431 caregivers aged ≥65 years. A study of the correlation between the mental health state and the perceived social support was carried out. Both variables were related to the sex of the caregiver. Results: Perceived social support by older caregivers is significantly related to mental health (p = 0.001), and stress (p < 0.001). Also, there is a significant relationship between perceived social support and mental well-being (p = 0.001), self-esteem (p = 0.005) and stress (p = 0.001) in older women caregivers. Conclusions: Older caregivers have adequate mental well-being and perceive high social support. Perceived social support can contribute to improving the mental well-being of older caregivers. Full article
12 pages, 345 KiB  
Article
Perceptions on Connecting Respite Care Volunteers and Caregivers
by Solange Campos-Romero, Valeria Herskovic, Carolina Fuentes and Esmeralda Abarca
Int. J. Environ. Res. Public Health 2020, 17(8), 2911; https://doi.org/10.3390/ijerph17082911 - 23 Apr 2020
Cited by 6 | Viewed by 2533
Abstract
The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to [...] Read more.
The most common requirement for informal caregivers is to experience a respite or temporary break from their caregiving routine. Some initiatives have been undertaken to provide respite care through volunteer providers. We report on a qualitative study carried out in Santiago, Chile, to learn about the willingness of potential volunteers to provide respite care for bedridden older persons, as well as their willingness to use information and communication technologies (ICT) to connect to caregivers in a low-income neighbourhood within their own geographic district. A trustworthy institution that mediates the volunteer–caregiver relationship is considered to be important by potential volunteers. Potential volunteers were found to be willing to use ICT to provide respite care, sharing basic information about themselves. However, they were also aware of the digital skill gap that may exist between them and the caregivers and were distrustful of unknown websites that could connect them to care recipients. Full article

Review

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16 pages, 1123 KiB  
Review
Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia—A Narrative Review
by Esther Sitges-Maciá, Beatriz Bonete-López, Antonio Sánchez-Cabaco and Javier Oltra-Cucarella
Int. J. Environ. Res. Public Health 2021, 18(15), 7728; https://doi.org/10.3390/ijerph18157728 - 21 Jul 2021
Cited by 19 | Viewed by 4319
Abstract
Along with the burden commonly experienced by informal caregivers (ICs) of people with dementia (PwD), associated with the progressive decline that accompanies dementia, the lockdown due to the public health crisis has had a great negative impact on the emotional wellbeing, physical health, [...] Read more.
Along with the burden commonly experienced by informal caregivers (ICs) of people with dementia (PwD), associated with the progressive decline that accompanies dementia, the lockdown due to the public health crisis has had a great negative impact on the emotional wellbeing, physical health, and social relationships of ICs. Support interventions through telemedicine represent an opportunity for ICs to learn the skills required for the care and maintenance of social networks. In this work, a narrative review of the effects of e-health training and social support interventions was carried out. A literature search was conducted using the ProQuest, Ovid, and Scopus databases. Information regarding social support (SS), psychological interventions, and training for the management of medications and behavioral changes was extracted. One hundred and nine studies were included in this review. Forums and training platforms were the main tools for ICs. The most effective platforms to improve SS include the participation of both ICs and health professionals. However, no significant improvements in objective caring skills were identified. Platforms developed specifically for ICs should be based in tools that ICs are familiar with, because many ICs have not yet incorporated Information and Communication Technologies in many activities of their daily lives. Education in the digitalization to ICs of PwD should be one of the priority objectives in telehealth interventions. Full article
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Other

Jump to: Research, Review

13 pages, 591 KiB  
Systematic Review
Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life
by Johannes Boettcher, Michael Boettcher, Silke Wiegand-Grefe and Holger Zapf
Int. J. Environ. Res. Public Health 2021, 18(9), 4993; https://doi.org/10.3390/ijerph18094993 - 8 May 2021
Cited by 40 | Viewed by 5207
Abstract
Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative [...] Read more.
Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work. Full article
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