Patient-caregiver Dyads Research Articles

Motivation in Rare Disease Self-Care: A Phenomenological Study of Pediatric Patients With Spinal Muscular Atrophy and Their Caregivers.

Spinal muscular atrophy can cause progressive physical disability and difficulties with self-care. Self-care motivation can enhance patient persistence in self-care behavior and maintain health. This study was designed to explore and describe motivations for self-care among school-aged children and adolescents with spinal muscular atrophy and the perspectives of their primary caregivers. Husserl's phenomenological research method was adopted, and data were collected using in-depth, face-to-face, open-ended interviews with patients and their primary caregivers aged 8-18 years with spinal muscular atrophy. A total of eight patient-caregiver dyads were recruited via purposeful sampling from a hospital clinic and through the Muscular Dystrophy Association of Taiwan. The interviews were conducted in the participants' homes and transcribed verbatim. Data were then thematically analyzed using the Giorgi analysis method. Six themes were identified from the patients' perspective: (a) adapting to dietary restrictions, (b) proactive measures for physical safety, c3) pursuing social connection and peer support, (d) navigating emotional well-being, (e) seeking independence, and (f) achieving success motivation. From the caregivers' perspective, the motivations for patient self-care were identified as follows: (a) ensuring safe and enjoyable eating for patients, (b) facilitating patient autonomy in health risk management, (c) facilitating patient engagement with peers, (d) balancing support with encouraging independence, (e) assessing and balancing independence and safety in patient caregiving, and (f) admiring patients' resilience and self-care innovation. This study highlights the vital roles of caregivers in adapting to the dynamic self-care motivations of children and adolescents and of healthcare professionals in facilitating communication and care strategies. Personalized approaches are essential for enhancing autonomy and well-being in pediatric patients.

Perceptions and Needs for a Technology-Based Dyadic Intervention on Symptom Management Among Patients With Colorectal Cancer and Their Caregivers: A Qualitative Study.

Colorectal cancer (CRC) patients and their caregivers often experience multiple co-occurring symptoms (eg, fatigue, depression, anxiety, and sleep disturbance). There is a noticeable gap in research regarding symptom management for patient-caregiver dyads, particularly using technology-based tools. This study aimed to describe the needs and perceptions of patient-caregiver dyads regarding a technology-based tool to manage their multiple symptoms. This study utilized a qualitative descriptive design with purposive sampling. Semistructured interviews were conducted with CRC patients undergoing chemotherapy and their caregivers. Thematic analysis was performed to identify key themes. The study included 11 patients and 8 caregivers (8 patient-caregiver dyads and 3 patients without dyads). Four main themes emerged: (1) high symptom burden experienced by CRC patients and their caregivers; (2) symptom self-management strategies, including information seeking and self-education, family and social support, and coping strategies; (3) input and suggestions for technology use, covering aspects such as content, format, and specific technology features; and (4) concerns about barriers to healthcare access, including technological literacy, geographical distance, and time constraints. Our findings provide novel insights into experiences, needs, and suggestions of CRC patient-caregiver dyads for managing multiple symptoms. Participants emphasized the importance of developing a tailored, technology-based tool that includes personalized, evidence-based content; accessible and intuitive design features; and interactive social support capabilities. Leveraging these findings, we aim to develop a technology-based dyadic intervention tool that addresses the psychosocial needs of CRC patient-caregiver dyads. This approach can also enhance health equity by making care more accessible.

It is time to address fear of cancer recurrence in family caregivers: protocol for the feasibility and acceptability of a randomized pilot study of the online version of the Family Caregiver–Fear Of Recurrence Therapy (FC-FORT)

BackgroundFear of cancer recurrence (FCR) is common, persistent, and is associated with lower quality of life, impaired functioning, and psychological distress in cancer patients. Studies suggest that family caregivers of cancer patients experience equal or greater levels of FCR than patients themselves. In the past 5 years, several interventions have demonstrated their ability to reduce FCR among cancer patients and in patient-caregiver dyads. However, to date, no intervention exists to individually target family caregiver’s FCR. The aims of the proposed pilot study are to (1) assess the feasibility and acceptability of the newly adapted Family Caregiver–Fear Of Recurrence Therapy (FC-FORT) intervention to inform a larger randomized control trial study, and (2) estimate the clinical significance of FC-FORT. Initial evaluation of FC-FORT revealed high user satisfaction and usability.MethodsA parallel, two-group, pilot randomized controlled trial comparing FC-FORT to a waitlist control (care as usual) will be conducted. Participant inclusion criteria are (a) women family caregivers taking care of adult cancer patients (no recurrence), (b) experiencing clinical levels of FCR, (c) access to a computer/internet connection, and (d) living in Canada. Participants (n = 36) will be recruited at Ottawa and Toronto hospitals, previous study participant pools, through social media and community partners across Canada. Participants in the intervention group will complete the FC-FORT intervention (7 consecutive weeks of virtual group therapy and homework). Participants in the control group will be offered the intervention after their participation in the study. All participants will be asked to complete questionnaire packages at baseline (T0), immediately post-intervention (7 weeks; T1) and at 3-months post-intervention (T2). Feasibility (e.g., recruitment, allocation, fidelity), acceptability (e.g., dropout, completion, satisfaction) and clinical significance of secondary outcomes will be evaluated (i.e., FCR illness uncertainty). Participants in the intervention group will be asked to complete measures of group cohesion and therapeutic alliance and take part in a semi-structured exit interview exploring their overall experience with FC-FORT.DiscussionThis project will evaluate the acceptability and feasibility of the newly adapted FC-FORT to inform a larger trial.Trial registrationNCT, NCT05441384. Registered July 1st, 2022, https://classic.clinicaltrials.gov/ct2/show/NCT05441384

Experiences With mHealth Use Among Patient-Caregiver Dyads With Chronic Heart Failure: Qualitative Study.

Chronic heart failure has become a serious threat to the health of the global population, and self-management is key to treating chronic heart failure. The emergence of mobile health (mHealth) provides new ideas for the self-management of chronic heart failure in which the informal caregiver plays an important role. Current research has mainly studied the experiences with using mHealth among patients with chronic heart failure from the perspective of individual patients, and there is a lack of research from the dichotomous perspective. The aim of this study was to explore the experiences with mHealth use among patients with chronic heart failure and their informal caregivers from a dichotomous perspective. This descriptive phenomenological study from a post-positivist perspective used a dyadic interview method, and face-to-face semistructured interviews were conducted with patients with chronic heart failure and their informal caregivers. Data were collected and managed using NVivo 12 software, and data analysis used thematic analysis to identify and interpret participants' experiences and perspectives. The thematic analysis included familiarizing ourselves with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report. A total of 14 dyads of patients with chronic heart failure and their informal caregivers (13 men and 15 women) participated in this study, including 3 couples and 11 parent-child pairs. We constructed 4 key themes and their subthemes related to the experiences with mHealth use: (1) opposing experiences with mHealth as human interaction or trauma (great experience with mHealth use; trauma), (2) supplement instead of replacement (it is useful but better as a reference; offline is unavoidable sometimes), (3) both agreement and disagreement over who should be the adopter of mHealth (achieving consensus regarding who should adopt mHealth; conflict occurs when considering patients as the adopter of mHealth), (4) for better mHealth (applying mHealth with caution; suggestions for improved mHealth). This study reported that the experiences with mHealth use among patients with chronic heart failure and their informal caregivers were mixed, and it highlighted the human touch of mHealth and the importance of network security. These results featured mHealth as a complement to offline hospitals rather than a replacement. In the context of modern or changing Chinese culture, we encourage patients to use mHealth by themselves and their informal caregivers to provide help when necessary. In addition, we need to use mHealth carefully, and future mHealth designs should focus more on ease of use and be oriented more toward older adults.

Shared care in heart failure management is linked with physical and mental health by perceived control in patient-caregiver dyads

Abstract Background Patients with heart failure (HF) and their family caregivers have interdependent relationships in managing HF. Shared care within dyads refers to interpersonal interactions characterized by exchanging care and support in chronic illness management. High levels of shared care improve patients’ health outcomes, but it is unclear if shared care is equally beneficial for caregivers. Also unknown is how shared care contributes to the outcomes of both dyad members. We propose that perceived control may be critical in the link between shared care and health status for dyads. Thus, the purpose of this study was to determine whether perceived control over one’s health mediates the association between shared care and physical and mental health in patients with HF and their caregivers. Method Patients with HF and their primary caregivers (N=151 dyads) completed questionnaires in this cross-sectional study. Shared care, perceived control over one’s own health, and health status were assessed using the three subscales of the Shared Care Instrument (i.e., communication, decision-making, and reciprocity), the Cardiac Attitudes Scale-Revised, and the Medical Outcomes Study Health Survey-36, physical and mental health scales, respectively. A series of actor-partner interdependence models with mediation dyadic analyses were conducted. Results Patients with HF (mean age 60.3 Years, 64% male) and their caregivers (mean age 56.6 years, 75% female) reported similar levels of communication and reciprocity in shared care, but patients reported higher scores of decision-making in shared care than their caregivers (P < .001). Perceived control over one’s own health significantly mediated the association between communication and physical health (indirect actor effect = .1487; 95% CI: 0.0478 to 0.2759) and between communication and mental health (indirect actor effect = .1650; 95% CI: 0.0454 to 0.3260) for patients, not caregivers (Figures A1 & A2). Similarly, perceived control significantly mediated the association between reciprocity and physical and mental health for patients, not caregivers (Figures B1 & B2). Perceived control mediated the association of decision-making with physical health and mental health for caregivers, not patients (Figures C1 & C2). Conclusion Higher levels of communication and reciprocity increased patients’ perceived control, ultimately improving their physical and mental health, whereas caregivers’ decision-making improved their health by enhancing their perceived control over their health. The different patterns of shared care are linked to the health of patients and caregivers by enhancing perceived control over one’s health.Figure A & BFigure C

Psychological Distress is Prevalent and Interdependent Among Patients with Decompensated Cirrhosis and Their Caregivers.

Little is known about the interdependence of psychological distress among patients with decompensated cirrhosis (DC) and their caregivers. In this cross-sectional study we examined the interdependence of psychological distress (Hospital Anxiety and Depression Scale) among 127 patient-caregiver dyads using Actor-Partner Interdependence Modeling. Among dyads, 26% had both partners reporting clinically significant anxiety and 18% reporting clinically significant depression. Caregiver anxiety significantly predicted patient depression (β=0.20, p=0.02). Psychological distress was prevalent and interdependent among dyads. These results underscore the need to develop interventions to reduce psychological distress in both patients with DC and their caregivers.

Cancer Caregiver Anxiety Over Time: The Influence of Palliative Care.

Objectives: To explore anxiety experienced by caregivers providing home-based, end-of-life care to patients with cancer. We examined the relationship between caregiver anxiety and receipt of palliative care by the patient. Methods: A case series of terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics in Virginia and Pennsylvania and followed for 12 months or until patient death. Data collected included qualitative, quantitative, and observational data; this analysis utilizes the quantitative data. Longitudinal Latent Growth Models were used to characterize the heterogeneity of primary caregiver anxiety over time. The influence of palliative care on caregiver anxiety over time was assessed. Characteristics associated with membership in the trajectory groups rendered from those models are presented. Results: The majority of caregivers were female (73.9%), white (54.9%), and patient spouses (45.3%). Three classes of caregivers were identified based on their anxiety scores over time (low, elevated, and high). The 2 groups who had elevated and high anxiety had significant increases in anxiety over time. Controlling for patient receipt of palliative care attenuated those increases. Caregivers with the lowest level of anxiety were more likely to be Black, report fewer symptoms of depression or caregiver burden and higher self-rated physical health. Caregivers who were younger reported higher anxiety. Conclusions: Our analysis detected 3 distinct cancer caregiver groups reporting low, elevated, and very high levels of anxiety. Caregivers with elevated or high anxiety also demonstrated increasing anxiety overtime; however increases were attenuated with patient receipt of palliative care. For cancer caregivers with elevated and high levels of anxiety, palliative care buffers further deterioration of their mental health.

Management of a Dual Low Sodium and Diabetic Diet by Patient-Caregiver Dyads: A Qualitative Descriptive Study.

The purpose of the study was to explore factors surrounding management of simultaneous dietary recommendations for heart failure and type 2 diabetes among patient-caregiver dyads. Qualitative description was used to explore dyad experiences managing a dual diet. Semi-structured interviews were conducted with patients with a concurrent diagnosis of type 2 diabetes and heart failure and their family caregiver. Each 60-minute interview was conducted virtually. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted with coding used for themes at dyadic-and individual levels. Twelve patient-caregiver dyads (N = 24) were interviewed. The mean age was 57 years (±15 years). Most participants were white (75%); patients were predominantly male, and caregivers were predominantly female (83.3% for both). Dyadic-level themes that emerged included factors that influence simultaneous management of dual diet recommendations. Themes included shared barriers, facilitators, motivators, and strategies for dual diet management. Individual-level themes discussed by patients were barriers and motivators to dual diet management, and caregivers discussed barriers to supporting dual diet management. Findings from the study highlight that patients and caregivers often work together and share similar barriers, facilitators, motivators, and strategies for adhering to a dual diet. The results provide insight into chronic disease management at the family level and can guide health care providers' efforts to promote family involvement with dietary recommendations for patients with multiple comorbidities.

Allied rehabilitation using caregiver-mediated exercises combined with telerehabilitation for stroke (ARMed4Stroke): A randomised controlled trial

Objective To assess the added value of caregiver-mediated exercises combined with telerehabilitation in addition to usual care compared to usual care alone on the self-reported mobility outcome after subacute stroke. Design Multicentre, observer-blinded, parallel randomised controlled trial. An off-site researcher allocated treatments using minimisation. Setting Four rehabilitation centres in the Netherlands. Participants Forty-one patient–caregiver dyads within 3 months poststroke. Intervention Eight-week blended care program with caregiver-mediated mobility exercises for 2.5 h per week supported by telerehabilitation and four face-to-face sessions in addition to usual care. Main measures Self-reported mobility domain of the Stroke Impact Scale postintervention. Secondary outcomes were functional outcome, dyads’ psychosocial wellbeing, care transition to the community postintervention and after 6 months. Results Forty-one dyads (21 intervention, 20 control) were randomised, and 37 (N = 18; N = 19) were analysed following intention-to-treat. The Stroke Impact Scale mobility was not significantly different between groups postintervention (B 0.8, 95% CI –6.8–8.5, p = 0.826). The secondary outcomes, namely, (a) caregivers’ quality of life postintervention (p = 0.013), (b) caregivers’ symptoms of depression postintervention (p = 0.025), and (c) independence in leisurely activities at 6 months (p = 0.024), showed significant benefits in favour of caregiver-mediated exercises with telerehabilitation. A significant difference favouring controls was found in self-reported muscle strength at 6 months (p = 0.002). Conclusions Caregiver-mediated exercises combined with telerehabilitation yielded no differential effect on our primary outcome self-reported mobility. Although the trial is underpowered, current findings are in line with previous trials. Future studies should further explore beneficial effects of caregiver involvement in stroke rehabilitation targeting psychosocial wellbeing.

Psychosocial Assessment Tool 2.0 and Long-term Mental Health Outcomes in Childhood Cancer.

To identify childhood cancer patients and their families at the greatest risk for psychosocial difficulties, this study examined the predictive validity of the Psychosocial Assessment Tool 2.0 (PAT2.0) on caregiver and patient-reported mental health outcomes at 1-year follow-up. The PAT2.0 was administered to caregivers a median of 0.08 years after cancer diagnosis. A brief psychosocial screening battery (Family Symptom Inventory and PROMIS v1.0 Pediatric Profile-25) was administered to patient-caregiver dyads (n=53) ∼1-year later. Linear regressions support the longitudinal predictive validity of the PAT2.0 for caregiver-reported child and caregiver mental health symptoms and child-reported peer relationships difficulties.

Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers

BackgroundPatients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.MethodsIn this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.ResultsPatients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.ConclusionsA mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.Trial RegistrationClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007.

Abstract B158: Sources of support and strain in Latino patients with advanced cancer and their family caregivers

Abstract Background: Latino patients with advanced cancer and their caregivers are an understudied and underserved population that experiences high levels of psychological distress and impaired quality of life. As part of a larger effort to culturally adapt a mindfulness intervention for this population, this study qualitatively explored sources of support and strain, with a particular focus on the social context, among Latino patient-caregiver dyads undergoing cancer treatment. Methods: Twenty Latino patients undergoing treatment for a metastatic solid malignancy and their family caregivers were recruited from a county hospital and participated in semi-structured interviews. Interviews were conducted by a trained, bilingual and bicultural staff member and explored participants’ cancer-related experiences, psychosocial needs, and sources of support. Interviews were digitally recorded, transcribed verbatim by a professional external vendor, and translated into English, where applicable. Atlas.ti was used to conduct a thematic descriptive analysis. Results: Patients (55% male) and caregivers (60% female) were predominantly born outside the U.S. (93%) and reported low levels of education (59% < high school graduate) and income (63% household income < $30,000). Preliminary analyses revealed how family can be both an important source of support and strain. Many participants described how the cancer diagnosis brought the family closer while others shared negative experiences including discrimination and distancing by family members. Participants’ religious faith, their church community, friends, work colleagues, and other cancer patients were highlighted as additional sources of support. Reported strains included financial stress (e.g., loss of income, healthcare costs, transportation costs), changes in household dynamics and family roles, and challenges navigating healthcare. In particular, caregivers reported strains managing work, family responsibilities, and caregiving tasks with limited resources. Ongoing analyses are examining differences between caregivers and patients and men and women. Male patients in particular expressed despair over the inability to work and the impact this had on their self-identity and perceived burden to others. Conclusion: Participants emphasized the important role of family and religion as a way of coping with the cancer diagnosis and related challenges. Stress associated with economic challenges and changes in family roles was prevalent and appeared to contribute to depression and anxiety. In conclusion, study findings highlight key sources of support and strain among Latino patient-caregiver dyads that can inform culturally relevant and equity-based cancer-related interventions. Citation Format: Larkin L. Strong, Josheili Llavona-Ortiz, Hilary Ma, Maria E. Fernandez, Elizabeth Dominguez, Rosangela Silva, Jaquelin Hernandez, Kathrin Milbury. Sources of support and strain in Latino patients with advanced cancer and their family caregivers [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B158.

Evaluating dyadic factors associated with self-care in patients with heart failure and their family caregivers: Using an Actor-Partner Interdependence Model

Dyadic conditions of patients with heart failure and their caregivers may affect both patient self-care and caregiver contribution to patient self-care (CCPS). The purpose of this study was to examine the relationships of patient-caregiver physical function and depressive symptoms to the patient self-care (maintenance and management) and CCPS. Data from 55 were analyzed using an Actor–Partner Interdependence Model to address the aim through AMOS. Patient self-care was very poor. Better patient physical function was related to better patient self-care management (actor effect) and poorer CCPS maintenance (partner effect). Better caregiver physical function was related to CCPS management (actor effect). Severer patient depressive symptoms were related to poorer patient self-care maintenance (actor effect) and poorer CCPS management (partner effect). Physical function and depressive symptoms in patient-caregiver dyads were related to patient self-care and CCPS. To improve patient self-care and CCPS, dyadic support for physical function and depressive symptoms is needed.

Self-care in patients affected by inflammatory bowel disease and caregiver contribution to self-care (IBD-SELF): a protocol for a longitudinal observational study

IntroductionSupporting patient self-care and the contribution of their caregivers is crucial in chronic illness care. Inflammatory bowel disease (IBD) is a chronic condition whose prevalence is expected to double, especially...

Dyadic effects of perceived stress, relationship satisfaction and distress disclosure on emotional distress in colorectal cancer patients and their family caregivers: An actor-partner interdependence mediation model

ObjectiveThis study adopted a dyadic analysis method to examine the effect of perceived stress on emotional distress and determine whether relationship satisfaction and distress disclosure act as mediators in colorectal cancer (CRC) enterostomy patient-caregiver dyads. MethodsA total of 312 patient-caregiver dyads completed measures assessing perceived stress, relationship satisfaction, distress disclosure, and emotional distress. The data were analyzed using the actor-partner interdependence mediation model. ResultsThis study found that the perceived stress of patients and caregivers both had direct and indirect actor effects on emotional distress (through relationship satisfaction). Another important finding is that perceived stress had indirect actor-partner effects (through distress disclosure) on emotional distress. ConclusionsThis study highlights that perceived stress, relationship satisfaction, and distress disclosure of patients and their caregivers are key factors that can be considered for improving emotional distress. It also partially confirmed the interdependence of patients with CRC and their caregivers.

Caregiver burden in informal spousal caregivers predicts psychological and physical health in patients following coronary artery bypass graft surgery: a longitudinal clinical cohort study.

Previous research has shown that informal caregiver burden can have deleterious effects on patient recovery; however, this relationship has yet to be investigated in patients undergoing coronary artery bypass graft (CABG) surgery. This study aimed to examine the impact of the change of caregiver burden from pre- to post-surgery on patients' mental and physical health after CABG surgery. Ninety patient-caregiver dyads were assessed one month before the surgery, two months and one year after the surgery. Caregivers completed the Oberst Burden Scale to measure caregiver burden. Patients completed the Beck Depression Inventory to measure depressive symptoms, a subscale of the Hospital Anxiety and Depression Scale to measure anxiety symptoms, the Short Form-12 health assessment to measure health-related quality of life, and the Coronary Revascularisation Outcomes Questionnaire to measure surgery symptoms. Hierarchical linear regression analyses were conducted to explore the association between change in caregiver burden and post-surgery patient outcomes. A greater increase in caregiver burden from pre- to two-months post-surgery significantly predicted higher patients' depressive symptoms (β = 0.179, p = 0.010), anxiety symptoms (β = 0.114, p = 0.017), reported post-surgery symptoms (β = 0.335, p = 0.008) and reduced physical health-related quality of life (β = -0.358, p = 0.003), after controlling for a wide range of covariates. These findings were not replicated at a one-year follow-up. These results provide insights into the impact of caregiver burden on patient distress following CABG surgery, supporting the idea of psychological support interventions for caregivers to increase patients' short-term recovery outcomes.

Self-report of symptom cluster experiences in cancer patient-caregiver dyads.

Symptom clusters have important health implications in the context of cancer, but the symptom cluster experiences of cancer caregivers and patient-caregiver dyads are not well studied. To date, most studies report statistically derived symptom clusters among patients and fail to consider the caregivers' experience. This study aimed to assess and characterize self-reported symptom cluster experiences in cancer patient-caregiver dyads. We recruited 30 patient-caregiver dyads from the outpatient oncology clinics at a Comprehensive Cancer Center in the Midwestern U.S. Participants completed web-based surveys reporting their symptom clusters at weekly intervals over 8weeks of cancer treatment. Among 48 eligible dyads, 30 (63%) agreed to participate, 29 provided data, and ≥ 80% (24 patients, 26 caregivers) completed the study. Twenty-eight patients (97%) and twenty-two caregivers (76%) reported experiencing symptoms in clusters. There was substantial variability in the symptoms reported, perceived causality, and directional relationships among symptoms, however both patients' and caregivers' frequently described symptom clusters with psychoneurologic components (co-occurring pain, fatigue, sleep disturbance, anxiety, depression, lack of appetite and/or cognitive disturbance). Symptom clusters were perceived to have a moderate impact on patients' daily lives and a mild-to-moderate impact on caregivers' daily lives. Dyad members experienced and successfully self-reported symptom clusters, with psychoneurologic symptom clusters prevalent among both patients and their caregivers. Self-report of symptom cluster experiences provides unique insight relevant to clinical management. Findings provide foundational support for development and testing of dyad-based interventions to mitigate symptom clusters and their negative impact on daily life among cancer-patient caregiver dyads.

Association between stigma and quality of life among chronic refractory wounds patients and informal caregivers: an actor-partner interdependence model analysis.

The co-occurrence of health impairments in patients and their informal caregivers may be particularly common in intimate care settings in China. Patients with Chronic Refractory Wounds (CRWs) and their informal caregivers constitute a dyad and exhibit dyadic effects during the caring process. Unfortunately, no study has yet explored the dyadic effects of stigma on the QoL of patients with CRWs and their caregivers. We used a convenience sampling method and recruited CRWs patient-caregiver dyads (N = 207) in China between April 2022 and October 2023. We found that: (i) dyadic members experience varying degrees of stigma; (ii) the actor-partner effect of CRWs patients' stigma on their own and their informal caregivers' QoL was significant (Path A1: β = -1.27, Path A2: β = -0.37, Path P1: β = - 0.08, Path P2: β = - 0.18); (iii) informal caregivers' stigma adversely affects both their own and their patients' psychological QoL((Path A4: β = - 0.65, Path P4: β = - 0.52)). Informal caregivers' stigma can negatively impact patients' physical QoL (Path P3: β = - 0.17), whereas it does not significantly affect their own physical QoL. There is a notable actor-partner effect of the CRWs patients' stigma on their own and their informal caregivers' QoL. CRWs patients' stigma should become a priority for the government to improve CRWs patients' and informal caregivers' QoL. Besides, health professionals should be addressing several assessments and interventions to decrease informal caregivers' affiliate stigma symptoms and improve CRWs patients' and informal caregivers' QoL.

The impact of a primary brain tumor diagnosis on caregivers: Insights from the patients’ perspective

PurposeThe diagnosis of a primary brain tumor (PBT) causes significant distress for the caregiver-patient dyad, warranting increased supportive care intervention. Although researchers have previously assessed caregivers’ perceptions of their own supportive care needs, no study to date has identified how patients perceive the caregiving experience and/or patients’ recommendations for integrating supportive care of caregivers in neuro-oncology. This qualitative study examined caregiver distress as well as caregiver supportive care needs from the patients’ perspective to inform future intervention development.MethodsAdults with PBT (N = 15; Mage = 45; 53% female; 93% White) were divided into four, 90-min focus groups moderated by a clinical neuropsychologist. Patients responded to semi-structured interview questions regarding various supportive care needs throughout the course of disease. Each discussion was transcribed and coded using thematic content analysis and NVivo software. Inter-rater reliability was excellent (MKappa = 0.92, range = 0.85–0.93).ResultsSeven distinct codes related to PBT caregivers emerged and were classified into two broader themes: Caregiver Impact (47% of coded content) and Caregiver Support (53% of coded content). Caregiver Impact refers to patients’ perspective of the practical and emotional demands of caregiving. Under Caregiver Support, patients cited a strong need for increased support of caregivers, including bereavement care, individual psychotherapy, and joint caregiver-patient dyad sessions.ConclusionPatients with PBT expressed profound concerns regarding the demands of caregiving and its impact on the well-being of their loved ones. Findings emphasize the need for comprehensive dyadic support in neuro-oncology throughout the disease trajectory to enhance the overall quality-of-life for both patients and their caregivers.

The experience of hope in dyads living with advanced chronic illness in Portugal: a longitudinal mixed-methods study

BackgroundHope is an important resource that helps patients and families thrive during difficult times. Although several studies have highlighted the importance of hope in different contexts, its specific manifestations in the realm of advanced chronic illness need further exploration. In this study, we sought to elucidate the intricate interplay between the construct of hope and the lived experience of advanced chronic illness within patient-caregiver dyads. Our objectives were (a) to explore the dyadic experience of hope as a changing dynamic over time for patients living with advanced chronic illness and their informal caregivers and (b) to evaluate variations of hope and symptom burden across time.MethodsWe conducted a longitudinal mixed-methods study with a convergent design between December 2020 and April 2021. Patients living with advanced chronic illness and informal caregivers participated as a dyad (n = 8). The Herth Hope Index scale was used to measure dyads' level of hope and the Edmonton Symptom Assessment System was used to measure patients’ symptom burden. Descriptive statistics were undertaken. A thematic analysis as described by Braun and Clarke was conducted to analyze dyadic interview data. Dyads' experience of hope was described by using the six dimensions of hope in the Model of Hope of Dufault and Martocchio.ResultsDyadic scores of hope and patients' symptom burden were stable over time. The constructs of hope in dyads included “Living one day at the time,” “Having inner force/strength,” and “Maintaining good health.” Changes in patterns of hope were captured for each dyad in their transition over time. Data converged for all dyads except one.ConclusionsThe findings of our study show a constant presence of hope even in the face of adversity. Healthcare professionals must find ways to promote hope in dyads of patients living with advanced chronic diseases. Nurses play a pivotal role; dyadic interviews should be promoted to create a safe space for both patients and informal caregivers in order to share experiences. More research is needed to address patients' and informal caregivers' hope in chronic illness because current hope-based interventions primarily target cancer diagnoses.