The Mediating Role of Illness Cognitions in the Relationship Between Caregiving Demands and Caregivers’ Psychological Adjustment

Clin J Pain. 2022 Jan 31;38(4):257-263. doi: 10.1097/AJP.0000000000001018.


OBJECTIVE: The present study investigated whether illness cognitions mediated the relationship between caregiving demands and positive and negative indicators of adjustment in partners of patients with chronic pain.

METHODS: The sample of this cross-sectional study consisted of 151 partners (mean age=61.4 y, SD=13.6 y, 57% male) of patients with chronic pain (eg, back pain). The study was conducted in the Pain Centre of the University Medical Centre Groningen, The Netherlands, during November 2014 to June 2015. Participants completed questionnaires that assessed caregiving demands, illness cognitions, perceived burden, distress, positive affect, and life satisfaction.

RESULTS: The results showed that among illness cognitions, acceptance of the illness mediated the association between caregiving demands and burden (b=0.16, 95% confidence interval [CI]: 0.05-0.28) and positive affect (b=-0.21, CI: -0.41 to -0.06). Helplessness mediated the association between caregiving demands and burden (b=0.46, CI: 0.26-0.69) and distress (b=0.35, CI: 0.19-0.53). Perceived benefits did not mediate any of these associations. The findings indicate that partners who experience more demands tend to appraise the consequences of the patients’ pain condition more negatively, which in turn is associated with their emotional adjustment.

DISCUSSION: The results suggest that illness cognitions play an important role in the psychological adjustment of partners. Enhancing acceptance of the illness and reducing feelings of helplessness could form the basis of interventions aiming at promoting psychological adjustment in partners, especially when it is difficult to reduce the demands.

PMID:35093956 | PMC:PMC8920000 | DOI:10.1097/AJP.0000000000001018

Tagged | Leave a comment

Trends in Daily Heart Rate Variability Fluctuations Are Associated with Longitudinal Changes in Stress and Somatisation in Police Officers

Healthcare (Basel). 2022 Jan 12;10(1):144. doi: 10.3390/healthcare10010144.


The emergence of wearable sensors that allow for unobtrusive monitoring of physiological and behavioural patterns introduces new opportunities to study the impact of stress in a real-world context. This study explores to what extent within-subject trends in daily Heart Rate Variability (HRV) and daily HRV fluctuations are associated with longitudinal changes in stress, depression, anxiety, and somatisation. Nine Dutch police officers collected daily nocturnal HRV data using an Oura ring during 15-55 weeks. Participants filled in the Four-Dimensional Symptoms Questionnaire every 5 weeks. A sample of 47 five-week observations was collected and analysed using multiple regression. After controlling for trends in total sleep time, moderate-to-vigorous physical activity and alcohol use, an increasing trend in the seven-day rolling standard deviation of the HRV (HRVsd) was associated with increases in stress and somatisation over 5 weeks. Furthermore, an increasing HRV trend buffered against the association between HRVsd trend and somatisation change, undoing this association when it was combined with increasing HRV. Depression and anxiety could not be related to trends in HRV or HRVsd, which was related to observed floor effects. These results show that monitoring trends in daily HRV via wearables holds promise for automated stress monitoring and providing personalised feedback.

PMID:35052307 | PMC:PMC8776208 | DOI:10.3390/healthcare10010144

Tagged | Leave a comment

How does the Untire app alleviate cancer-related fatigue? A longitudinal mediation analysis

Psychooncology. 2022 Jan 20. doi: 10.1002/pon.5886. Online ahead of print.


OBJECTIVE: A waiting-list randomized controlled trial supported the effectiveness of the multimodal Untire app in reducing cancer-related fatigue (CRF) in cancer patients and survivors. However, little is known about the causal mechanisms of different app components through which the intervention effect was achieved. We aim to examine whether specifically targeted factors (i.e., fatigue catastrophizing, depression, mindfulness, sleep, and physical activity) mediated the intervention effects of the Untire app on fatigue outcomes.

METHODS: Seven hundred ninety-nine persons with CRF were randomized (2:1) into intervention (n = 519) and waiting-list control (n = 280) groups. Self-report data on the primary outcome fatigue severity and interference and the abovementioned potential mediators were collected at baseline and 12 weeks. Participants who completed the 12-week assessment were included in the analyses (intervention = 159; control = 176). We performed longitudinal multi-categorical multiple mediation analysis using PROCESS macro to examine whether the potential mediators explained the overall intervention effects.

RESULTS: Improvements in fatigue catastrophizing (bootstrap 95% CI (-0.110; -0.011)), depression (bootstrap 95% CI (-0.082; -0.004)), and mindfulness (bootstrap 95% CI (-0.082; -0.002)), significantly mediated the intervention effect on fatigue severity, whereas sleep quality (bootstrap 95% CI (-0.081; 0.009)), sleep disturbance (bootstrap 95% CI (-0.038; 0.029)), and physical activity (bootstrap 95% CI (-0.068; 0.000)) did not. Similar associations were found for fatigue interference.

CONCLUSIONS: Untire app access reduces fatigue severity and interference mainly by decreasing fatigue catastrophizing, depression, and by increasing mindfulness. Supporting these psychological mechanisms is crucial for reducing fatigue among cancer patients and survivors.

PMID:35060222 | DOI:10.1002/pon.5886

Tagged | Leave a comment

A Multinational Longitudinal Study Incorporating Intensive Methods to Examine Caregiver Experiences in the Context of Chronic Health Conditions: Protocol of the ENTWINE-iCohort

Int J Environ Res Public Health. 2022 Jan 12;19(2):821. doi: 10.3390/ijerph19020821.


Informal caregivers are those who provide unpaid care to a relative or friend with a chronic illness, disability or other long-lasting health or care need. Providing informal care in the context of chronic health conditions presents a significant global challenge. Examination of the determinants of informal caregivers’ behaviour, especially in terms of motivations and willingness to provide/receive care, is crucial to understanding the nature of caregiver and care recipient experiences. A large group of international researchers have co-operated to execute the ENTWINE iCohort-a multinational, transdisciplinary, longitudinal study incorporating intensive methods to examine caregiver experiences in the context of chronic health conditions. The aim of ENTWINE-iCohort is to investigate the broad spectrum of factors, i.e., cultural, personal, geographical, relational, psychological, and economic that may affect motivations, willingness to provide or receive care, among diverse groups of informal caregivers and their care recipients, in different countries that have different care systems. Study questionnaires will be disseminated on-line in nine countries: Germany, Greece, Ireland, Italy, Israel, the Netherlands, Poland, Sweden, and the UK. Cross-sectional and longitudinal multivariate analysis, including intensive longitudinal and dyadic data analysis will be applied to examine the relative contribution of the above factors to caregiver or care recipient wellbeing.

PMID:35055644 | PMC:PMC8775526 | DOI:10.3390/ijerph19020821

Tagged | Leave a comment

Informal caregiver support needs and burden: a survey in Lithuania

BMJ Open. 2022 Jan 4;12(1):e054607. doi: 10.1136/bmjopen-2021-054607.


INTRODUCTION: A demand for informal care exists worldwide. Lithuania presents an interesting case example where the need for the informal care is increasing, but relatively little research has been conducted documenting caregivers’ experiences and needs.

OBJECTIVES: The main objective of this study was to investigate Lithuanian informal caregiver characteristics, support needs and burden. In addition, the impact of the COVID-19 on the caregiver’s and care receiver’s well-being was investigated.

METHODS: The study was conducted online between May and September 2020. Informal caregivers and individuals with informal caregiving experiences were invited to participate in the survey. The survey questionnaire comprised 38 multiple-choice items including participant demographic characteristics, availability of the support, support needs, well-being and the impact of the COVID-19 pandemic. In addition, caregiver burden was assessed with the 24-item Caregiver Burden Inventory (CBI).

RESULTS: A total of 226 individuals completed the survey. Most of the participants were women (87.6%). Almost half of the participants (48.7%) were not receiving any support, and a total of 73.9% expressed a need to receive more professional support. Participants were found to experience high burden on the CBI (M=50.21, SD=15.63). Women were found to be significantly more burdened than men (p=0.011). Even though many participants experienced psychological problems (55.8%), only 2.2% were receiving any psychological support. Finally, majority of the participants did not experience any changes in their own (63.7%) or the well-being of their care receiver (68.1%) due to the COVID-19 pandemic.

CONCLUSION: Most of the participants were identified as intensive caregivers experiencing a high burden. A majority did not experience changes in their well-being due to COVID-19. We propose several recommendations for increasing accessibility and availability of support for informal caregivers in Lithuania based on the study findings.

PMID:34983768 | PMC:PMC8728458 | DOI:10.1136/bmjopen-2021-054607

Tagged | Leave a comment

Globally altered sleep patterns and physical activity levels by confinement in 5056 individuals: ECLB COVID-19 international online survey

Biol Sport. 2021 Oct;38(4):495-506. doi: 10.5114/biolsport.2021.101605. Epub 2020 Dec 23.


Symptoms of psychological distress and disorder have been widely reported in people under quarantine during the COVID-19 pandemic; in addition to severe disruption of peoples’ daily activity and sleep patterns. This study investigates the association between physical-activity levels and sleep patterns in quarantined individuals. An international Google online survey was launched in April 6th, 2020 for 12-weeks. Forty-one research organizations from Europe, North-Africa, Western-Asia, and the Americas promoted the survey through their networks to the general society, which was made available in 14 languages. The survey was presented in a differential format with questions related to responses “before” and “during” the confinement period. Participants responded to the Pittsburgh Sleep Quality Index (PSQI) questionnaire and the short form of the International Physical Activity Questionnaire. 5056 replies (59.4% female), from Europe (46.4%), Western-Asia (25.4%), America (14.8%) and North-Africa (13.3%) were analysed. The COVID-19 home confinement led to impaired sleep quality, as evidenced by the increase in the global PSQI score (4.37 ± 2.71 before home confinement vs. 5.32 ± 3.23 during home confinement) (p < 0.001). The frequency of individuals experiencing a good sleep decreased from 61% (n = 3063) before home confinement to 48% (n = 2405) during home confinement with highly active individuals experienced better sleep quality (p < 0.001) in both conditions. Time spent engaged in all physical-activity and the metabolic equivalent of task in each physical-activity category (i.e., vigorous, moderate, walking) decreased significantly during COVID-19 home confinement (p < 0.001). The number of hours of daily-sitting increased by ~2 hours/days during home confinement (p < 0.001). COVID-19 home confinement resulted in significantly negative alterations in sleep patterns and physical-activity levels. To maintain health during home confinement, physical-activity promotion and sleep hygiene education and support are strongly warranted.

PMID:34937958 | PMC:PMC8670812 | DOI:10.5114/biolsport.2021.101605

Tagged | Leave a comment

Workers’ views on involving significant others in occupational health care: a focus group study among workers with a chronic disease

Disabil Rehabil. 2021 Dec 14:1-12. doi: 10.1080/09638288.2021.2011435. Online ahead of print.


PURPOSE: To explore workers’ views and considerations on involving their significant others (SOs) in occupational health care.

METHODS: Four focus group interviews in the Netherlands, with 21 workers who had visited an occupational health physician (OHP) due to work absence caused by a chronic disease. Data was analyzed using thematic analysis.

RESULTS: We distinguished four main themes: (i) attitudes towards involving SOs, (ii) preferences on how to involve SOs, (iii) benefits of involving SOs, and (iv) concerns with regard to involving SOs. Workers expressed both positive and critical opinions about involving SOs in occupational health care. Benefits mentioned included provision of emotional and informational support by SOs before, during, and after consultations. According to workers, support from SOs can be enhanced by informing SOs about re-integration plans and involving them in decision making. However, workers were concerned about overburdening SOs, and receiving unwanted support from them.

CONCLUSIONS: According to interviewed workers, engagement of SOs in occupational health care can help workers with a chronic disease in their recovery and return to work. However, they felt it is important to take SO characteristics and the worker’s circumstances and preferences into account, and to balance the potential benefits and drawbacks of involving SOs.Implications for rehabilitationThis study suggests that the worker’s re-integration process could benefit from informing significant others about the return to work plans, involving them in decision-making, and explicitly discussing how the significant other can support the worker.Occupational health physicians have an important role in informing workers about the possibility and potential benefits of involving their significant others in the re-integration process.The involvement of a significant other in the re-integration process needs to be tailored to the specific situation of the individual worker, taking into account the preferences of both the worker and significant other.Findings suggest that it is important that occupational health physicians, workers and significant others are not only aware of the possible benefits of significant other involvement, but also of potential drawbacks such as interference during consultations, overburdening significant others, and significant others providing unwanted support.

PMID:34904485 | DOI:10.1080/09638288.2021.2011435

Tagged | Leave a comment

Plasma Lead Concentration and Risk of Late Kidney Allograft Failure: Findings From the TransplantLines Biobank and Cohort Studies

Am J Kidney Dis. 2021 Dec 3:S0272-6386(21)01014-3. doi: 10.1053/j.ajkd.2021.10.009. Online ahead of print.


RATIONALE & OBJECTIVE: Heavy metals are known to induce kidney damage and recent studies have linked minor exposures to cadmium and arsenic with increased risk of kidney allograft failure, yet the potential association of lead (Pb) with late graft failure in kidney transplant recipients (KTR) remains unknown.

STUDY DESIGN: Prospective cohort study in the Netherlands.

SETTING & PARTICIPANTS: We studied outpatient KTR (n=670) with a functioning graft for ≥1 year recruited at a university setting (2008-2011, NCT02811835) and followed, on average, for 4.9 (IQR, 3.4‒5.5) years. Additionally, end-stage kidney disease patients (n=46) enrolled in the ongoing TransplantLines Cohort and Biobank Study (2016-2017, NCT03272841) were studied at admission for transplantation and at 3, 6, 12, and 24 months after transplantation.

EXPOSURE: Plasma Pb was log2 transformed to estimate the association with outcomes per doubling of plasma Pb concentration and also considered categorically as tertiles of the Pb distribution.

OUTCOME: Kidney graft failure (restart of dialysis or re-transplantation) with the competing event of death with a functioning graft.

ANALYTICAL APPROACH: Multivariable-adjusted cause-specific hazards models where follow-up of KTR who died with a functioning graft was censored.

RESULTS: Median baseline plasma Pb was 0.31 (IQR, 0.22─0.45) μg/L among all KTRs. During follow-up, 78 (12%) KTR developed graft failure. Higher plasma Pb was associated with increased risk of graft failure (HR 1.59, 95% CI 1.14‒2.21 per doubling; P=0.006) independent of age, sex, transplant characteristics, eGFR, proteinuria, smoking status, alcohol intake, and plasma concentrations of cadmium and arsenic. These findings remained materially unchanged after additional adjustment for dietary intake and were consistent with those of analyses examining Pb categorically. In serial measurements, plasma Pb was significantly higher at admission for transplantation than at 3-months post-transplant (P=0.001), after which it remained stable over 2 years of follow-up (P=0.2).

LIMITATIONS: Observational study design.

CONCLUSIONS: Pretransplant plasma Pb concentrations, which fall after transplantation, are associated with increased risk of late kidney allograft failure. These findings warrant further studies to evaluate whether preventive or therapeutic interventions to decrease plasma Pb may represent novel risk-management strategies to decrease the rate of kidney allograft failure.

PMID:34871698 | DOI:10.1053/j.ajkd.2021.10.009

Leave a comment

Process Evaluation of Internet-Based Cognitive Behavioral Therapy Intervention for Informal Caregivers

Front Med (Lausanne). 2021 Nov 12;8:725510. doi: 10.3389/fmed.2021.725510. eCollection 2021.


Background: Informal caregivers are individuals who provide care for ill, frail, or otherwise dependent family members, siblings, or friends. Due to the caregiving demands, informal caregivers are known to experience negative mental health symptoms, such as stress or anxiety. Interventions based on Internet-based Cognitive Behavioral Therapy (ICBT) principles have been previously found to be effective for different populations and could also be considered as a plausible support option for informal caregivers. However, findings regarding effectiveness alone might not be sufficient for informing about the overall feasibility of the intervention. Objective: The aim of this process evaluation study was to evaluate the feasibility of a previously developed ICBT intervention for informal caregivers in Lithuania. More specifically, we evaluated the suitability of the intervention in relation to its content and delivery mode. Methods: Two studies were conducted. Study 1 consisted of participant evaluations of an 8-week, 8-module long therapist supported ICBT intervention. Evaluations for the Study 1 were retrieved from previously unused data, obtained from pilot testing of the intervention in which 63 informal caregivers took part. The evaluations contained of qualitative data (participant comments), as well as quantitative data (evaluations of each of the sessions). The Study 2 was an online stakeholder focus-group discussion conducted via Zoom. Eight stakeholders took part in the discussion, among whom there were social workers, medical professionals as well as individuals with caregiving experience themselves. Data were analyzed using descriptive statistics, thematic analysis, and data coding. Results: Results of the Study 1 showed that most of the pilot randomized controlled trial participants evaluated content and format of the intervention positively. These results were complemented by the findings in the Study 2, in which stakeholders evaluated the intervention as suitable and promising. In addition, stakeholders made certain suggestions for improving the intervention’s usability for the informal caregivers. This included improving the instructions, providing with more guidance, and considering personalization options. Conclusion: The process evaluation helped to evaluate the feasibility of the ICBT intervention for informal caregivers in Lithuania from the two perspectives: users and stakeholders. Our findings suggest that the intervention is suitable for the target population.

PMID:34869422 | PMC:PMC8632733 | DOI:10.3389/fmed.2021.725510

Tagged | Leave a comment

Toward the Value Sensitive Design of eHealth Technologies to Support Self-management of Cardiovascular Diseases: Content Analysis

JMIR Cardio. 2021 Dec 1;5(2):e31985. doi: 10.2196/31985.


BACKGROUND: eHealth can revolutionize the way self-management support is offered to chronically ill individuals such as those with a cardiovascular disease (CVD). However, patients’ fluctuating motivation to actually perform self-management is an important factor for which to account. Tailoring and personalizing eHealth to fit with the values of individuals promises to be an effective motivational strategy. Nevertheless, how specific eHealth technologies and design features could potentially contribute to values of individuals with a CVD has not been explicitly studied before.

OBJECTIVE: This study sought to connect a set of empirically validated, health-related values of individuals with a CVD with existing eHealth technologies and their design features. The study searched for potential connections between design features and values with the goal to advance knowledge about how eHealth technologies can actually be more meaningful and motivating for end users.

METHODS: Undertaking a technical investigation that fits with the value sensitive design framework, a content analysis of existing eHealth technologies was conducted. We matched 11 empirically validated values of CVD patients with 70 design features from 10 eHealth technologies that were previously identified in a systematic review. The analysis consisted mainly of a deductive coding stage performed independently by 3 members of the study team. In addition, researchers and developers of 6 of the 10 reviewed technologies provided input about potential feature-value connections.

RESULTS: In total, 98 connections were made between eHealth design features and patient values. This meant that some design features could contribute to multiple values. Importantly, some values were more often addressed than others. CVD patients’ values most often addressed were related to (1) having or maintaining a healthy lifestyle, (2) having an overview of personal health data, (3) having reliable information and advice, (4) having extrinsic motivators to accomplish goals or health-related activities, and (5) receiving personalized care. In contrast, values less often addressed concerned (6) perceiving low thresholds to access health care, (7) receiving social support, (8) preserving a sense of autonomy over life, and (9) not feeling fear, anxiety, or insecurity about health. Last, 2 largely unaddressed values were related to (10) having confidence and self-efficacy in the treatment or ability to achieve goals and (11) desiring to be seen as a person rather than a patient.

CONCLUSIONS: Positively, existing eHealth technologies could be connected with CVD patients’ values, largely through design features that relate to educational support, self-monitoring support, behavior change support, feedback, and motivational incentives. Other design features such as reminders, prompts or cues, peer-based or expert-based human support, and general system personalization were also connected with values but in narrower ways. In future studies, the inferred feature-value connections must be validated with empirical data from individuals with a CVD or similar chronic conditions.

PMID:34855608 | PMC:PMC8686487 | DOI:10.2196/31985

Tagged | Leave a comment