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Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers
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Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers

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

Deadline for manuscript submissions: closed (31 December 2022) | Viewed by 28113

Special Issue Editor

Dr. M. Graça Pereira

E-Mail Website
Guest Editor
Psychology Research Center (CIPsi), School of Psychology, University of Minho, 4710-057 Braga, Portugal
Interests: impact of chronic illness in patients, family and/or caregivers; health and iIlness processes in vulnerable groups; individual and family health promotion; integrated health care
Special Issues, Collections and Topics in MDPI journals

Special Issue Information

Dear Colleagues,

This Special Issue seeks to address the impact of chronic disease across the lifespan. The goal is to bring together researchers addressing the impact of chronic disease on well-being in order to inform intervention programs to facilitate adaptation, treatment, and quality of life in patients, families and caregivers.

The current Special Issue welcomes research papers in the area of clinical health psychology  informed by all disciplines including but not limited to psychology, public health sciences, behavioral medicine, epidemiology, family therapy, and nursing, addressing patients, couples, families and caregivers. Reports of interdisciplinary approaches in research  including integrated care are particularly welcome.

Prof. Dr. M. Graça Pereira
Guest Editor

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Keywords

  • quality of life
  • burden
  • therapeutic adherence
  • health promotion
  • treatment adjustment
  • family
  • caregivers

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Related Special Issue

Published Papers (9 papers)

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Research

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12 pages, 1506 KiB  
Article
Quality of Life in Amazonian Women during Cervical Cancer Treatment: The Moderating Role of Spirituality
by Rosana Moysés, Inês Marques, B. Daiana Santos, Adele Benzaken and M. Graça Pereira
Int. J. Environ. Res. Public Health 2023, 20(3), 2487; https://doi.org/10.3390/ijerph20032487 - 30 Jan 2023
Cited by 1 | Viewed by 2085
Abstract
This study aimed to examine the contribution of psychological variables to quality of life (QoL) of Amazonian women and to analyze the moderating role of spirituality in the relationship between psychological morbidity and Qol and between illness perception and QoL. This cross-sectional study [...] Read more.
This study aimed to examine the contribution of psychological variables to quality of life (QoL) of Amazonian women and to analyze the moderating role of spirituality in the relationship between psychological morbidity and Qol and between illness perception and QoL. This cross-sectional study included 119 women undergoing treatment for cervical cancer (CC). The Pearson correlation test was used to evaluate the relationship between sociodemographic, clinical, and psychological variables. To test how psychological morbidity, illness perception, and spirituality contribute to QoL, a path analysis was performed and to test the moreating role of spirituality, a moderation analysis was conducted. The results revealed that the presence of symptoms, high psychological morbidity, negative body image, and threatening illness perception were predictors of lower QoL. Spirituality moderated the relationship between psychological morbidity and QoL, and between illness perception and QoL. The moderating role of spirituality emphasizes its role as a coping strategy and should be included in cancer treatment. Interventions should target psychological morbidity, threatening illness perception, and address women’s concerns with body image and sexual concerns. CC treatment should include interprofessional healthcare teams addressing the biological and psychosocial factors of Amazonian women. As a result of this study a mobile application to monitor women’s health, adapted to cultural and social characteristics, was created. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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15 pages, 427 KiB  
Article
Effects of a Family Caregiver Care Programme in Musculoskeletal Pain and Disability in the Shoulder-Neck Region—A Randomised Clinical Trial
by Rocío Llamas-Ramos, Laura Barrero-Santiago, Inés Llamas-Ramos and Federico Montero-Cuadrado
Int. J. Environ. Res. Public Health 2023, 20(1), 376; https://doi.org/10.3390/ijerph20010376 - 26 Dec 2022
Cited by 5 | Viewed by 2494
Abstract
Life expectancy in Spain has increased and older people need more health care to improve their quality of life. The high demands of the population sometimes collapse health services, making them insufficient to cover their needs, which leads to the development of “non-professional [...] Read more.
Life expectancy in Spain has increased and older people need more health care to improve their quality of life. The high demands of the population sometimes collapse health services, making them insufficient to cover their needs, which leads to the development of “non-professional caregivers”. These caregivers have suffered musculoskeletal injuries of the cervical spine and shoulders and should be guided and assessed on ergonomics, biomechanics, or kinesiotherapy. However, there are no interventions to help them care for themselves. This study presents the application of a physical exercise programme to prevent these disorders in women caregivers of dependent patients. It consists of a randomised controlled clinical trial with two groups: both received a family caregiver care programme, and the intervention group also received a physical therapeutic exercise programme for 12 weeks. A total of 62 caregivers completed the study, who were mostly daughters or wives of dependents. Of these, 70.97% presented a “moderate” pain intensity and a cervical disability of 13.72 ± 7.64 points in the NDI questionnaire in the initial evaluation. In the intervention group of caregivers, there was a significant decrease in the pain intensity and a significant increase (p < 0.05) in all cervical joint amplitude movements. Caregivers present a high prevalence of musculoskeletal disorders. The physical exercise programme was effective in reducing the intensity of pain, lumbar disability, and cervical disability of the family caregivers. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
9 pages, 356 KiB  
Article
Correlates of Caregiving Burden among Bedouin-Muslim Mothers of Children Diagnosed with Epilepsy
by Offer E. Edelstein, Talia Shorer, Zamir Shorer and Yaacov G. Bachner
Int. J. Environ. Res. Public Health 2022, 19(18), 11595; https://doi.org/10.3390/ijerph191811595 - 14 Sep 2022
Cited by 4 | Viewed by 1783
Abstract
A paucity of research exists on caregiving burden (CB) and the factors associated with it among minority groups, such as Bedouin mothers of children diagnosed with epilepsy (CDE). The aim of this study was to explore associations between CB and care-recipients’ characteristics, contextual [...] Read more.
A paucity of research exists on caregiving burden (CB) and the factors associated with it among minority groups, such as Bedouin mothers of children diagnosed with epilepsy (CDE). The aim of this study was to explore associations between CB and care-recipients’ characteristics, contextual factors, and caregivers’ characteristics among those mothers. Methods: A total of 50 mothers completed self-report questionnaires while visiting pediatric neurology outpatient clinic centers, using valid and reliable measures. Results: Bivariate associations were found between social support, number of medications, and CB. General self-efficacy and place of residence emerged as significant predictors of caregiver burden. Conclusions: These findings provide health professionals with a better understanding of the factors that should be assessed in order to address caregiver burden among Bedouin mothers of CDE. Understanding the unique characteristics and culture of the Bedouin community can help professionals in targeting caregivers with a lower sense of self-efficacy, and those that reside in Bedouin cities, in order to reduce their caregiving burden. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
13 pages, 886 KiB  
Article
Treatment Adherence and Health-Related Quality of Life in Patients with Hemophilia in Hong Kong
by Yin Ting Cheung, Pok Hong Lam, Henry Hon Wai Lam, Chung-Tin Ma, Alex Wing Kwan Leung, Raymond Siu Ming Wong and Chi Kong Li
Int. J. Environ. Res. Public Health 2022, 19(11), 6496; https://doi.org/10.3390/ijerph19116496 - 26 May 2022
Cited by 2 | Viewed by 2491
Abstract
Background: This study aims to identify factors affecting health-related quality of life (HRQoL) in Chinese patients with hemophilia in Hong Kong, and to examine the association between treatment adherence and HRQoL outcomes. Methods: Patients with hemophilia A or B from a non-governmental organization [...] Read more.
Background: This study aims to identify factors affecting health-related quality of life (HRQoL) in Chinese patients with hemophilia in Hong Kong, and to examine the association between treatment adherence and HRQoL outcomes. Methods: Patients with hemophilia A or B from a non-governmental organization reported their HRQoL and treatment adherence to prophylactic therapy using validated tools. Univariate tests and multivariable regression analysis were used to compare differences in outcomes across clinically relevant subgroups. Results: Fifty-six patients were recruited (mean age 30.4 [17.4] years; majority hemophilia A: 75%; moderate-to-severe severity: 88%). Patients who received prophylactic treatment reported fewer work/school problems (25.8 [18.9] versus 51.5 [26.3]; p = 0.001) than those who received on-demand therapy. The multivariable model showed that older age (B = 0.42, 95% CI = 0.093–0.75) and living in public housing (B = 10.24, 95% CI = 0.70–19.77) were associated with worse HRQoL. Older age was associated with treatment non-adherence (r = 0.66, p < 0.0001). Patients with poor adherence tended to report worse functioning in sports/leisure (r = 0.31, p = 0.033). Conclusions: Our results suggest that patients who were older, had lower education attainment and received on-demand treatment had poorer perception of their health. Improving adherence may lead to better HRQoL. Future work includes evaluating the occupational needs prospectively in this population. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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10 pages, 693 KiB  
Article
Healthcare Services and Formal Caregiver’s Psychosocial Risk Factors: An Observational Study
by Anabela Pereira, Elisabeth Brito, Isabel Souto and Bruno Alves
Int. J. Environ. Res. Public Health 2022, 19(9), 5009; https://doi.org/10.3390/ijerph19095009 - 20 Apr 2022
Cited by 2 | Viewed by 2010
Abstract
The prevention and management of chronic disease primarily requires risk reduction measures, through strategic coordination across various government areas. Recognizing that health workers and the public health workforce are integral to building strong and resilient health, the present study analyses the relation between [...] Read more.
The prevention and management of chronic disease primarily requires risk reduction measures, through strategic coordination across various government areas. Recognizing that health workers and the public health workforce are integral to building strong and resilient health, the present study analyses the relation between Psychosocial Risk Factors (PRFs, to which formal caregivers are exposed in the healthcare settings), and the work system related elements of the Systems Engineering Initiative for Patient Safety (SEIPS 3.0) framework. An empirical study was carried out, involving 333 formal caregivers of healthcare services. A total of 31 PRFs were assessed (using the COPSOQ III), making it possible to find a relationship between the PRFs analyzed with three elements of the work system, namely Task (5 PRFs), Organizational factors (17 PRFs), and Individual (9 PRFs). The present work contributes not only in terms of outcomes that allow the development of mental illness prevention and mental health promotion actions for healthcare formal caregivers, but also in terms of the relevance that these factors can have on the quality of health services, as well as their users (patients), in line with SEIPS 3.0 model. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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Review

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36 pages, 898 KiB  
Review
The Acute Impact of the Early Stages of COVID-19 Pandemic in People with Pre-Existing Psychiatric Disorders: A Systematic Review
by Sandra Carvalho, Catarina G. Coelho, Bruno Kluwe-Schiavon, Juliana Magalhães and Jorge Leite
Int. J. Environ. Res. Public Health 2022, 19(9), 5140; https://doi.org/10.3390/ijerph19095140 - 23 Apr 2022
Cited by 15 | Viewed by 3709
Abstract
People with pre-pandemic health conditions are more vulnerable and more likely to suffer greater psychosocial impact due to the current COVID-19 pandemic and the lockdown measures. Thus, the objective of this work was to systematically review the impact of the early stages COVID-19 [...] Read more.
People with pre-pandemic health conditions are more vulnerable and more likely to suffer greater psychosocial impact due to the current COVID-19 pandemic and the lockdown measures. Thus, the objective of this work was to systematically review the impact of the early stages COVID-19 pandemic on people with pre-existing psychiatric disorders. The search was performed between 23 January and 2 September 2021 in PubMed, PsycINFO, and EMBASE. A total of 4167 published results were identified; however, only 49 were included in this review. Results show that there was considerable heterogeneity among studies, which resulted in a low consensus. However, it seems that the impact of the first stage of the COVID-19 pandemic on psychiatric disorders was two-fold: (1) an overall effect, in which people suffering from psychiatric disorders in general experienced more psychological distress and anxiety when compared to people who had no psychiatric diagnosis, and (2) a condition-specific effect, namely in people suffering from eating disorders and obsessive compulsive disorders. Moreover, the current work highlights that there were also some external factors that were related to worsening symptoms. For instance, unemployment or experiencing work and financial difficulties can be a trigger for greater distress during the pandemic for people with mood disorders, and being alone and in social isolation during the COVID-19 pandemic may actually increase substance use and relapse rates. Further studies are needed to prospectively investigate the long-term effects of the current COVID-19 pandemic on people with (pre)-existing psychiatric conditions and on the onset or deterioration of psychiatric-related symptoms in a larger number of participants, as well as exploring the long-term effects of the current pandemic on mental health. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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22 pages, 1585 KiB  
Review
Family Adjustment to Hereditary Cancer Syndromes: A Systematic Review
by Pedro Gomes, Giada Pietrabissa, Eunice R. Silva, João Silva, Paula Mena Matos, Maria Emília Costa, Vanessa Bertuzzi, Eliana Silva, Maria Carolina Neves and Célia M. D. Sales
Int. J. Environ. Res. Public Health 2022, 19(3), 1603; https://doi.org/10.3390/ijerph19031603 - 30 Jan 2022
Cited by 20 | Viewed by 5651
Abstract
Hereditary cancer syndromes are inherited pathogenic genetic variants that significantly increase the risk of developing cancer. When individuals become aware of their increased probability of having cancer, the whole family is affected by this new reality and needs to adjust. However, adjustment to [...] Read more.
Hereditary cancer syndromes are inherited pathogenic genetic variants that significantly increase the risk of developing cancer. When individuals become aware of their increased probability of having cancer, the whole family is affected by this new reality and needs to adjust. However, adjustment to hereditary cancer syndromes has been mainly studied at an individual level, and research about familial adjustment remains dispersed and disorganized. To overcome this gap, this review aims to understand how families adjust to genetic testing and risk management, and to what extent the family’s adjustment influences the psychological response and risk management behaviors of mutation carriers. We conducted searches on the PubMed/Med Line, PsycInfo, SCOPUS, and Google Scholar databases and used the Mixed Methods Appraisal Tool (MMAT-v2018) to assess the methodological quality of each selected study. Thirty studies met the inclusion criteria. Most results highlighted the interdependent nature of adjustment of pathogenic variant carriers and their families. The way carriers adjust to the syndrome is highly dependent on family functioning and related to how family members react to the new genetic information, particularly partners and siblings. Couples who share their worries and communicate openly about cancer risk present a better long-term adjustment than couples who use protective buffering (not talking about it to avoid disturbing the partner) or emotional distancing. Parents need help dealing with disclosing genetic information to their children. These findings reinforce the importance of adopting a family-centered approach in the context of genetic counseling and the necessity of involving family members in research. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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Other

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14 pages, 1331 KiB  
Study Protocol
Effectiveness of Two Stress Reduction Interventions in Patients with Chronic Diabetic Foot Ulcers (PSY-DFU): Protocol for a Longitudinal RCT with a Nested Qualitative Study Involving Family Caregivers
by M. Graça Pereira, Margarida Vilaça and Eugenia Carvalho
Int. J. Environ. Res. Public Health 2022, 19(14), 8556; https://doi.org/10.3390/ijerph19148556 - 13 Jul 2022
Cited by 6 | Viewed by 3383
Abstract
Diabetic foot ulcer (DFU) is the leading cause of lower-limb amputations, with a significant impact on patients, families, and society. Since DFU medical treatments represent a major socioeconomic burden, cost-effective interventions are needed. This trial aims to assess the effectiveness of a muscle [...] Read more.
Diabetic foot ulcer (DFU) is the leading cause of lower-limb amputations, with a significant impact on patients, families, and society. Since DFU medical treatments represent a major socioeconomic burden, cost-effective interventions are needed. This trial aims to assess the effectiveness of a muscle relaxation intervention compared to a hypnosis intervention versus active and passive control groups on DFU healing, physiological indicators of healing prognosis, and quality of life (QoL) in clinically distressed patients with a chronic DFU. A multicenter, randomized controlled trial with three assessment moments (baseline, two months post-intervention, and four months follow-up) will be conducted. Approximately 170 patients will be randomized and allocated to either treatment or control groups. Primary outcomes will be DFU healing, physiological indicators of healing prognosis, and QoL. Secondary outcomes will include perceived stress, psychological morbidity, and DFU representations. The efficacy of sessions on DFU healing will be qualitatively assessed in 12 patients allocated to the treatment and active control groups, as well as their family caregivers. This study will provide evidence regarding the effectiveness of two psychological interventions for the DFU healing process and the QoL of patients, with direct clinical relevance regarding DFU treatment and recurrence. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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19 pages, 1970 KiB  
Systematic Review
Towards a Better Understanding of the Factors Associated with Distress in Elderly Cancer Patients: A Systematic Review
by Sandra Silva, Ana Bártolo, Isabel M. Santos, Anabela Pereira and Sara Monteiro
Int. J. Environ. Res. Public Health 2022, 19(6), 3424; https://doi.org/10.3390/ijerph19063424 - 14 Mar 2022
Cited by 13 | Viewed by 2921
Abstract
This study presents a systematic review of the sociodemographic, clinical, and psychosocial factors associated with distress in elderly cancer patients. Relevant studies were identified using four electronic databases: PubMed, Scopus, Web of Science and ProQuest. Cross-sectional and longitudinal studies exploring factors associated with [...] Read more.
This study presents a systematic review of the sociodemographic, clinical, and psychosocial factors associated with distress in elderly cancer patients. Relevant studies were identified using four electronic databases: PubMed, Scopus, Web of Science and ProQuest. Cross-sectional and longitudinal studies exploring factors associated with distress in people over 60 years of age were included and independently assessed using the Joanna Briggs Institute Critical Assessment Checklists. A total of 20 studies met the inclusion criteria. Research showed that being a woman, being single, divorced or widowed, having low income, having an advanced diagnosis, having functional limitations, having comorbidities, and having little social support were factors consistently associated with emotional distress. Data further showed that the impact of age, cancer type, and cancer treatment on symptoms of anxiety and/or depression in elderly patients is not yet well established. The findings of this review suggest that the emotional distress of elderly cancer patients depends on a myriad of factors that are not exclusive, but coexisting determinants of health. Future research is still needed to better understand risk factors for distress in this patient population, providing the resources for healthcare providers to better meet their needs. Full article
(This article belongs to the Special Issue Psychosocial Impact of Chronic Disease on Patients, Families and Caregivers)
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