Quality Of Life In Primary Caregivers Research Articles

A chain mediation model reveals the association between family sense of coherence and quality of life in caregivers of advanced cancer patients

Caregivers of advanced cancer patients face challenges impacting their quality of life (QoL). While evidence suggests that family sense of coherence (FSOC) can enhance individual psychological well-being and reduce distress symptoms, the precise mechanism through which FSOC improves caregivers' QoL remains unclear. This study aimed to explore the relationships among FSOC, psychological resilience, psychological distress, and QoL in primary caregivers of advanced cancer patients. A cross-sectional observational study was undertaken from June 2020 to March 2021 across five tertiary hospitals in China. Instruments included a general characteristic questionnaire, the Family Sense of Coherence Scale, the Patient Health Questionnaire-4, the 10-item Connor–Davidson Resilience Scale, and the 8-item SF-8 health survey. Pearson’s correlation and chain mediation analyses were performed using IBM SPSS (version 21) and PROCESS macro (version 3.4). Out of 290 valid questionnaires, results demonstrated that FSOC directly and positively influences caregivers' QoL. Psychological distress partially mediated the FSOC-QoL association, with paths "FSOC-psychological distress-QoL" and "FSOC-psychological resilience-psychological distress-QoL" contributing 43.08% and 6.72% of the total effect, respectively. Furthermore, this study distinguished physical and mental aspects of QoL, confirming both conform to the chain mediation model. FSOC impacts caregivers' QoL directly and indirectly through the mediation of psychological distress and the chain mediation effect of "psychological resilience-psychological distress". These insights enhance our understanding of the complex interplay between FSOC and QoL, underscoring the potential benefits of bolstering FSOC to strengthen caregiver resilience, alleviate distress, and ultimately elevate their QoL.

Caregiver's quality of life in advanced cancer: validation of the construct in a real-life setting of early palliative care.

Early palliative care (EPC) improves the quality of life (QoL) of advanced cancer patients and their caregivers. The increasingly widespread use of this care model requires the development of measures supporting its interventions. Although the construct of patient's QoL has been extensively investigated and several QoL measures have been further validated, there is a paucity of data concerning the QoL of the caregiver. In 2018, McDonald and colleagues addressed this issue by interviewing 23 primary caregivers of advanced cancer patients who participated in an EPC randomized clinical trial to understand their perspective on the QoL construct. The Authors identified six major dimensions associated with the construct of caregiver's QoL. The present retrospective study aimed to validate these dimensions on a larger sample and in a real-life EPC setting. Previously collected reports from 137 primary caregivers of advanced cancer patients on EPC answering questions about their experience with this care model were qualitatively analyzed through a deductive, thematic approach to identify and confirm the six dimensions constituting the construct of interest based on McDonald's and colleagues' results. The six dimensions ("living in the patient's world", "burden of illness and caregiving", "assuming the caregiver role", "renegotiating relationships", "confronting mortality", and "maintaining resilience") were consistently found in the reports from primary caregivers in a real-life EPC setting, confirming to be significant themes associated to their QoL. A definite and recurrent construct of primary caregiver's QoL as described by McDonald and colleagues was also found in a larger sample and in a real-life EPC setting. Thus it may lay the groundwork for the development of a dedicated questionnaire.

Poster Presentation

Poster Presentation

Quality of Life and Associated Factors in Japanese Children With Inborn Errors of Metabolism and Their Families

To reveal the associated factors of quality of life (QoL) in children with inborn errors of metabolism (IEM), their siblings, and their primary caregivers and partners, we conducted an anonymous questionnaire survey in Japan. Descriptive, correlation, and multiple regression analyses were performed. Fifty-six children with IEM, 35 siblings, 143 primary caregivers, and 86 partners completed our questionnaires. There were significant positive correlations between higher QoL in children with IEM and lower disease influence (r = 0.46) and higher perceived emotional support (r = 0.67). We could not find any associated factor of siblings’ QoL. Lower parental distress, higher family empowerment, and higher household income contributed to higher QoL in primary caregivers (adjusted R2 = 0.636). Higher household income, lower anxiety about childrearing, and higher satisfaction in the relationship with the child and entire family contributed to higher QoL of partners (adjusted R2 = 0.398). We concluded that developi...

Measuring the impact of dermatological conditions on family and caregivers: a review of dermatology‐specific instruments

The patient is the centre of a web of relationships, and the impact of his/her disease on family members and caregivers must be taken into account. The aim of this study was to identify the specific instruments that measure the impact of a dermatological disease on the quality of life (QoL) of family members, by performing a systematic search of the literature. Fifteen papers were identified, describing the creation and validation of nine instruments. Four of them concerned atopic dermatitis (Dermatitis Family Index, DFI; Parents' Index QoL Atopic Dermatitis, PiQoL-AD; QoL in primary caregivers of children with atopic dermatitis, QPCAD; Childhood Atopic Dermatitis Impact Scale, CADIS), two measured the impact of psoriasis in family members (Psoriasis Family Index, PFI; FamilyPso), one the impact of epidermolysis bullosa (Epidermolysis Bullosa Burden of Disease, EB-BoD), one of ichthyosis (Family Burden Ichthyosis, FBI), and one was generic for dermatological conditions (Family Dermatology Life Quality Index, FDLQI). The European Academy of Dermatology and Venereology quality of life taskforce recommends that the impact of a skin disease on family and caregivers should be measured as part of any thorough evaluation of the burden of a disease. Guidelines are given to choose the most appropriate instruments.

Effectiveness of a Brief Psychosocial Intervention on Quality of Life of Primary Caregivers of Iranian Children With Cancer: A Randomized Controlled Trial

Cancer in children has a great impact on primary caregiver quality of life (QOL). This study examined the effectiveness of a brief psychosocial intervention (BPI) on QOL of Primary Caregivers of Children with Cancer (PCCCs). Sixty-five PCCCs participated in a randomized controlled trial in Mahak Hospital and Rehabilitation Complex in Tehran, Iran. A 5-week long BPI (which comprised of counseling sessions and telephone follow-up) was delivered to the intervention group in addition to usual service, while the control group was provided with usual service. Data were collected using the Caregiver Quality of Life Index-Cancer-Persian version (CQOLC-P) prior to intervention, post-intervention, and at follow-up (i.e. 30days after the intervention). Repeated measures analysis of variance analysis (ANOVA) was used to evaluate outcomes. Majority of the participants were mothers (95%), between ages of 24-47 years (95%) with children between ages of 2-12 years. Most child cancer diagnoses were for brain tumors (n=31) and blood cancers (n=17). Significant improvement was found within the intervention group on QOL (p<0.001) including improvements on subscale measures of mental/emotional burden (p<0.001), disruption (p<0.001), and positive adaptation (p<0.001), compared with the control group over time. There was no difference between the intervention and control groups on the financial subscale measure after intervention (p>0.05). BPI was an effective strategy to improve the quality of life of PCCCs. Similar interventions can be planned by practitioners to reduce the burden of childhood cancer on PCCCs.

Religiosity and its relation to quality of life in primary caregivers of patients with multiple sclerosis: a case study in Greece

The first objective of the current observational study was to assess the degree of religiosity in Greek Christian Orthodox primary caregivers of patients with multiple sclerosis (MS). The second objective was to evaluate the interrelations between religiosity and quality of life (QOL) and to identify the determinants of QOL, an endpoint of considerable importance in clinical research and practice. Twenty-two male and 13 female primary caregivers (mean age 47.3 ± 12.4 years) of an equal number of patients with MS, who consented to participate, completed the Systems of the Greek version of the Belief Inventory (SBI-15R) and the Greek validated version of EuroQOL (EQ-5D). The analysis revealed high scores on religiosity, especially among females. Caregivers scored in the religious beliefs and practices subscale of SBI-15R with a mean score of 22.8 ± 7.8 (range 0-30) and with 7.1 ± 4.8 (range 0-14) in the social support subscale. However, both of the SBI-15R domains were almost unrelated to the degree of overall QOL. There was only a reliable (but with little clinical value) association between the pain/discomfort domain of the EQ-5D with the SBI-15R beliefs and practices subscale (r = -0.38, p = 0.03). Although high levels of religiosity among Greek Christian Orthodox primary caregivers of MS patients were evident, this study did not demonstrate any beneficial effect of religious beliefs and practices on their QOL. Further prospective studies with a population with the same and/or diverse religious and cultural backgrounds are needed to better elucidate the complex association between religiosity and QOL in primary caregivers of MS patients.

Anxiety, depression, and quality of life in caregivers of patients with cancer in late palliative phase

Background:: Limited research has been done on mental health and health-related quality of life (QOL) of primary caregivers (PCs) to patients staying at home with advanced cancer. This study examines anxiety, depression, and QOL in PCs of patients with cancer in the late palliative phase.Patients and methods:: The sample consisted of 49 PCs of women with breast cancer and 47 PCs of men with prostate cancer. QOL was rated with the Medical Outcome Study Short Form (SF-36), and mental health with the Hospital Anxiety and Depression Scale (HADS). The findings were compared with age-adjusted norm data (norm).Results:: Physical QOL was significantly higher than norm in both genders, while mental QOL was significantly lower in male PCs. The level of anxiety was significantly higher than norm in both genders. No significant difference for level of depression was found in either gender, while caseness of HADS-defined depression was significantly more prevalent in female PCs compared with norm.Conclusion:: PCs of both genders had significantly more anxiety than norm samples. Health care personnel in contact with PCs should consider screening them for mental symptoms and QOL and, if necessary, recommend further evaluation by their doctors.