Patient-caregiver Relationship Research Articles

Frailty and caregiver relationship quality in older patients diagnosed with transthyretin cardiac amyloidosis.

Aim of the study was to explore frailty and quality of the relationship with the caregiver in a cohort of older patients with transthyretin cardiac amyloidosis (ATTR-CA). Sixty-eight consecutive ATTR-CA patients were recruited and assessed for frailty, depressive symptoms, quality of the relationship in terms of social support, or conflict toward caregivers, New York Heart Association Class (NYHA), and National Amyloid Center score (NAC Score) for grading disease severity. Results showed that 10% of patients were frail. Depressive symptoms were present in 46% of patients. Regression analyses showed that both mFI and depression were associated with worse perception of social support, and that mFI and NAC score were associated with higher levels of conflict perceived in the caregivers' relationship. Overall, the mFI score was associated with worse perceived social support and caregiver relationship quality. Tertiary care heart failure clinics should actively support the patient-caregiver relationship to improve quality of life.

Hematopoietic Cell Transplantation Patient-Caregiver Dyad Perspectives on Participation in a Digital Storytelling Intervention: A Qualitative Approach

Storytelling has long been considered an effective means of communication, allowing the teller to process their emotions in light of particular life challenges. Effects on the listener also have been demonstrated to be beneficial, especially if the listener is faced with a similar life challenge. Less is known regarding the potential effects of storytelling on listening dyads and opportunities for joint processing following exposure to relevant stories. We sought to study these phenomena in the context of hematopoietic cell transplantation (HCT), a demanding medical procedure requiring intensive informal caregiving and thus great patient-caregiver entwinement. The purpose of this qualitative descriptive study was to explore participants' perceptions of a 4-week web-based digital storytelling (DST) intervention using both quantitative ratings of acceptability and qualitative coding of interviews conducted after intervention completion. A total of 202 participants (101 HCT patient-caregiver dyads) were recruited from the Mayo Clinic Arizona and randomized into either a DST arm or an Information Control (IC) arm. Participants in the DST arm rated the acceptability of the intervention and were asked to participate in a 30-minute phone interview to discuss their experience with the DST intervention. All interviews were recorded and transcribed verbatim and imported into NVivo 12 for coding and analysis, using a combination of deductive and inductive approaches to organize the data, create categories, and develop themes and subthemes. A total of 38 participants (19 HCT patient-caregiver dyads) completed the post-intervention interviews. Patients were 63% male and 82% White, 68% received allogeneic HCT, and their mean age was 55 years. The median time from HCT was 25 days (range, 6 to 56 days). Caregivers were mostly patients' spouses (73%) and female (69%), with a mean age of 56 years. In general, the 4-week web-based DST intervention was well accepted and liked by both patients and caregivers regarding the duration, dyadic participation, and convenience of participating in the intervention at home. Patients and caregivers who completed the DST intervention indicated that they were satisfied with the intervention (mean score, 4.5 of 5), were likely to recommend it to others (mean score, 4.4), would watch more stories (mean score, 4.1), and that the experience was worth their time (mean score, 4.6). Major themes that emerged from the qualitative analysis included (1) building communal connection through engaging with the stories; (2) positive emotional growth after HCT; (3) value of gaining the other's perspective; and (4) impact of open communication on the patient-caregiver relationship. A web-based DST intervention provides an attractive format through which to deliver a nonpharmacologic psychosocial intervention to HCT patient-caregiver dyads. Watching the emotional content in digital stories may help patients and caregivers cope with psychoemotional challenges together and provide an opportunity for emotional disclosure. Further work on determining optimal paths to disclosure is warranted.

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea

Background/ObjectiveWhile positive airway pressure (PAP) is an efficacious intervention for the treatment of obstructive sleep apnea syndrome (OSAS) in children with Down syndrome (DS), implementation and consistent use can be difficult. Caregiver perspectives and experiences using PAP are described with the aim of informing clinical practice. MethodsQualitative semi-structured phone interviews were conducted with 40 caregivers (i.e., mothers) of children with DS and OSAS treated with PAP for at least 6 months. Content analysis was used to identify themes associated with adherence and non-adherence. ResultsRespondents indicated variability in caregiver experience with the adoption of PAP and observed benefits of PAP. Varied experiences were attributed to several themes including accessing supplies, interactions with the medical team and equipment company, and patients' unique needs and behaviors, including the child's willingness and ability to adapt to PAP, sensory sensitivities, keeping the mask on all night, and differences in daytime behavior. Many families reported that desensitization with a reward system and trust within the caregiver-patient relationship were helpful. Caregiver suggestions for improving PAP adherence for families of children with DS included improving communication with the medical team and medical equipment company, emphasizing patience, using visual supports, and social support and education for extended family. ConclusionsAlthough family experiences varied, several actionable strategies by both the medical team and families emerged for improving the experience of and adherence to PAP in children with DS.

The revolution in the relationship between caregiver and patient

The caregiver-patient relationship has progressively evolved to focus on the development of the patient's autonomy. The mobilization of the patient's resources is fundamental to their participation in the co-construction of the care protocol. Identifying these resources is an essential component of caregiving know-how. Differents tools are available to help patients develop their own abilities and skills. These strategies have a positive impact on their quality of life and the satisfaction they experience, through a renewed sense of efficacy over their lives.

Greek Caregivers of Chronically Ill Patients Struggling in Everyday Life.

Caregivers of chronically ill geriatric patients face several problems throughout the disease progression of the patients under their care. This is a prospective crosssectional study conducted from September 2017 to September 2018, including 130 caregivers of geriatric patients from Attica, Greece. This study investigates caregivers' anxiety, perception of changes in their lives, and quality of life. The questionnaires administered were the revised Bakas Caregiving Outcomes Scale (rBCOS), the State-Trait Anxiety Inventory (STAI), and the Linear Analogue Scale Assessment (LASA). Influencing factors associated with rBCOS, STAI and LASA were care timespan and energy levels. Only the State Anxiety Scale and the Patient-caregiver Relationship rBCOS questionnaire seemed to be affected by a cancer diagnosis. Our findings revealed that anxiety, low quality of life, and perception of changes in the lives of caregivers are the underlying factors. Significant factors were time spent caring for the patient, the status of their relationship, the diagnosis, especially in life-threatening and life-limiting diseases, and the caregivers' energy levels. These results are important in order to comprehend the lives of caregivers and assess by what means could the healthcare system and society further assist them.

The Influence of Home-Based Music Therapy Interventions on Relationship Quality in Couples Living with Dementia-An Adapted Convergent Mixed Methods Study.

Relationship quality is important for well-being and quality of life in couples living with dementia. Home-based music therapy interventions may be conducted with the aim of enhancing relationship quality. However, the effects or influences of such interventions are only briefly investigated in previous studies. This study's aim was to identify how a 12-week home-based music therapy intervention may influence relationship quality in couples living with dementia, through an adapted convergent mixed methods design. In this case, 68 participating couples from the HOMESIDE RCT study, and four individually recruited couples, received the music therapy intervention. Relationship quality for all participants was measured by the standardized Quality of Caregiver-Patient Relationship scale, and qualitative interviews were conducted with the four individually recruited participants at baseline and post intervention. Quantitative analysis indicated no statistically significant intervention effect. However, relationship quality remained stable over the intervention period. The qualitative analysis identified that the music therapy interventions primarily led to positive emotions, closeness, intimacy, and communication between the persons with dementia and their care partners. Intervention influences could also be ambiguous, as sharing music experiences might involve a risk of evoking vulnerabilities or negative emotional responses.

Being a caregiver in psychiatry: beyond skills, commitment

The caregiver-patient relationship goes against the grain of the "diagnosis-action-result" model. To live this relational adventure, the caregiver must be motivated, committed and convinced of the validity of this approach: there must be "being a caregiver". At a time when former psychiatric caregivers have almost disappeared, in a context where psychiatry, like other disciplines, is being deserted by doctors and nurses, the question arises as to the legacy of care that allows for the encounter with the other. There is a risk of non- transmission of nursing know-how, jeopardizing the daily clinic and the very essence of the nursing posture in psychiatry.

Health professionals and Amerindian patients: representations and practices in French Guiana

In French Guiana, Amerindian populations find themselves in a health system whose therapeutic itinerary revolves around their traditional medicine and modern medicine provided by health professionals mostly from hexagonal France. The latter intervene in a “complexity of intercultural contact” which influences the caregiver-patient relationship and affects therapeutic adherence. To better understand the practices and representations of the health system in an intercultural context, qualitative research was carried out in the field between 2018 and 2019 with seventeen health professionals working in health centers located in the municipalities of the Interior of French Guiana. Semi-structured individual interviews were conducted in order to explore the representations, the difficulties encountered, and the tools used by these caregivers in their daily practice. These interviews were crossed with participant observations and bibliographical research in the medical and anthropological fields. The caregiver-patient encounter was asymmetrical, unequal and was part of a power relationship. The caregivers remained marked by ethnocentric representations -inherent to each culture- far removed from those of the populations and this divergence impacted the practice. It would be advisable to shift the focus in order to « penetrate » the frame of reference of the Other and rebalance relationships. The exploration of popular knowledge and skills and the application of proven teaching methods would encourage therapeutic adherence. « Homethnic workers » and intercultural training could help promote community health.

Évaluation des besoins pour la mise en place d’une Unité de Thérapie Orale

Oncological at home-treatment improves patient quality of life and autonomy but requires close watchfulness of adverse events and compliance to treatment. For nearly ten years, pharmaceutical consultations for home-based anticancer oral therapies patients are proposed on medical request in Avignon-Provence Cancer Institute (ICAP). Organizational changes led us to modify this management by integrating dedicated nurses to create an Oral Therapy Unit (OTU). Needs and expectations assessment questionnaires were proposed to healthcare professionals and patients treated by oral therapies. The analysis of these questionnaires allows to set up an OTU, integrating a dedicated nurse, adapted to the expectations of patients and healthcare professionals. About 8 months later, a new evaluation was carried out to assess the impact of this new support for patient care and health professionals' organization. The results of the studies carried out before OTU implementation highlight the importance of multi-professional support for patients from the start of treatment and during the follow-up. With the new OTU pathway, professionals expect a patient course improvement (94%), a better compliance (88%), a therapeutic accidents reduction (81%) and an improvement in the patient-caregiver relationship (69%). Regarding the organization, 56% of them are expecting to save medical and pharmaceutical time. The OTU creation in our institution and these new multi-professionals' teams' management of patients has obtained a favourable opinion from healthcare professionals and patient satisfaction.

Patient-caregiver relationship in cancer fatigue and distress. A dyadic approach

It has been shown that a reciprocal relationship between cancer patients and their family caregivers positively decreases distress in both. In this context we tried to explore the role of relationship reciprocity in the dyad members’ symptoms of fatigue and distress (anxiety and depression). Specifically, we aimed to assess the implications of relationship reciprocity testing the link between the various measurements of patient Quality of Life (QoL) and caregiver burden and the other measures of fatigue, distress, and relationship reciprocity. Moreover we aimed to examine the inter-relatedness of patients’ and caregivers’ relationship reciprocity with their own as well as fatigue and distress of the dyads. A convenience sample of 545 adult cancer patients and their caregivers from 15 cancer centers were examined using a cross-sectional design. Participants were administered dyadic measures (fatigue, distress, relationship reciprocity) and individual measures (patients’ QoL and caregivers’ burden). Patients’ QoL and caregivers’ Burden were associated with fatigue, distress and relationship reciprocity. The Actor-Partner Interdependence Model (APIM) revealed that each person’s relationship reciprocity was associated with their own distress and fatigue (actor effects); only caregivers’ relationship reciprocity was associated with patients’ fatigue and distress (partner effects). These findings suggest that the implication of the caregiving relationship for fatigue symptoms in both - patients and caregivers - appears worth of investigation.

Family resilience of stroke survivors within 6 months after a first-episode stroke: A longitudinal study.

ContextFamily resilience is frequently recognized as a powerful determinant of family adaptation in chronic disease patients; understanding the family resilience of stroke patients and its predictors could help nurses develop interventions to assist patients in maintaining healthy family functioning.ObjectiveThis study aimed to explore the trajectory of family resilience in the 6 months following stroke onset and examine the predictors of family resilience over time.MethodsA total of 288 first-episode stroke survivors were selected from seven hospitals in China from July 2020 to March 2021. Their family resilience, social support, self-efficacy, and medical coping style were assessed at hospitalization and 1, 3, and 6 months after stroke onset. The study was performed in accordance with the STROBE guidelines.ResultsThe mean levels of family resilience were between 95.52 ± 11.10 and 97.68 ± 9.68 within the first 6 months after a first-episode stroke, with a significant increase 3 months after the onset. Patient self-efficacy, social support, family atmosphere, and caregiver-patient relationship (sibling) were predictors of family resilience at all four time points. Baseline predictors of family resilience at 6 months included self-efficacy of the patients, subjective support, support utilization, family atmosphere, living district, medical bill payment methods, and caregiver-patient relationship (sibling).ConclusionFamily resilience levels were low in stroke patients 6 months after the onset, and 3 months post-stroke onset was a critical period for family resilience of stroke patients. Nurses are recommended to pay particular attention to patients with low self-efficacy, perceived low support, poor utilization of available support, as well as those who are under the care of their siblings, self-pay, or live in a poor family atmosphere. Interventions aimed at improving the self-efficacy of patients and social support are potential approaches to enhance family resilience.

Relationship quality and psychophysiological distress for underserved breast cancer patients and their caregiver before treatment.

Breast cancer patients and caregivers experience biobehavioral reactivity (e.g., depression, anxiety, pain, fatigue) during breast cancer treatment which predicts cancer recurrence and mortality. High quality patient-caregiver relationships can mitigate this distress during treatment, but this association is unclear pre-treatment. Identifying early interventions that target high risk Appalachian patients could impact biobehavioral reactivity. We recruited 55 breast cancer patient-caregiver dyads to complete a self-report survey after diagnosis but before treatment. We used a series of Actor-Partner Interdependence Models to test the hypotheses that both patient and caregiver relationship quality would be linked to their own and their partners' biobehavioral reactivity. Caregiver reported marital quality lower caregiver anxiety, patient anxiety, caregiver depression, patient depression, caregiver pain, and caregiver fatigue. Interestingly, patient-reported marital quality was linked with higher caregiver anxiety, higher patient anxiety, lower patient depression, and lower patient pain. Patients reported family quality was linked to lower patient and caregiver pain. This study demonstrates that pre-treatment marital and family quality levels are directly related to psychophysiological measures in both the caregiver and the patient, though sometimes in unexpected directions. Additionally, our findings potentially reveal an opportunity to intervene at the time of diagnosis to improve relationship quality, impacting patient and caregiver psychophysiological outcomes.

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study.

Aggression is one manifestation of behavioral disturbances in neurodegenerative disease with emerging literature suggesting a high prevalence in Parkinson's disease and related disorders (PDRD). Our aim was to describe characteristics, associated factors, and consequences of aggression towards caregivers in PDRD. This is a convergent mixed methods study, leveraging data from 296 PDRD patient-caregiver dyads in a clinical trial of palliative care and semi-structured interviews with a subgroup of 14 caregivers who reported aggression. The primary outcome was baseline caregiver-reported aggression. Using multivariate linear regression, baseline dyad characteristics (eg, measures of disease, psychosocial issues, caregiver strain) were examined to identify factors associated with aggression. Thematic analysis of interviews was used to augment these findings. Associated variables included disease duration (r=0.15, P < 0.05), patient grief (r=0.22, P< 0.001), symptom burden (r=0.18, r < 0.01), resistance to care (r=0.40, P < 0.01), caregivers' depression (r=0.16, P < 0.05), and caregiving burden (r=0.34, P < 0.001). We identified five themes: (1) Aggressive behaviors range from verbal abuse to threats of physical violence; (2) Caregivers believe that aggressive behaviors result from the difficulty patients experience in coping with disease progression and related losses; (3) Caregivers' stress and mental health are worsened by aggressive behaviors; (4) Aggressive behaviors negatively affect patient-caregiver relationships; (5) Caregivers are ill-prepared to manage aggressive behaviors and cope with the consequences on their own. Aggression in PDRD is driven by diverse factors (eg, grief, fluctuations in cognition) with serious consequences for caregivers. Neurologists and movement specialists should consider screening for aggression while prioritizing caregiver education and wellbeing.

A case of medical tourism?

The reception of foreign patients in Sfax (Tunisia) in exclusively private healthcare facilities raises questions about the place of medical tourism in patient-caregiver relationships. While medical tourism is a decried notion, it is above all part of an economic and globalized vision of health exchanges. Mobilities for medical reasons are local and constrained rather than chosen, within a global market. However, the case of Sfax shows that medical tourism is also a specific governmentality, constructed by supply and demand, outside the standards of mass tourism. First of all, informal practices surrounding care produce a form of “desire” for Sfax, also embedded in the neoliberal context surrounding the development of this activity. This gives the biopolitical reading a transcalar and analytical force of the phenomenon of medical tourism, within transnational care spaces.

Rethinking patient’s chief complaint, research contributions developed by medical students to person-centered care

INTRODUCTION: Traditionally, anamnesis, or medical interviews, have been the main tools in diagnosing health issues and indicating therapeutic intervention. Medical interviews perform clinical methods and hence medical theory. OBJECTIVE: In this paper, we will present a learning experience process gained during an introductory course on research. METHODOLOGY: Based on a clinical report designed for the purposes of investigation, a group of students and an advisor analyzed the role of the chief complaint in providing healthcare. RESULTS: Students noticed the case did not express the chief complaint of the patient. In addition, there was difficulty in articulating social and biological data in the report. Such findings were discussed by the group considering the literature on medical interviews and the medical anthropology framework in order to broaden their understanding of subjective and sociocultural aspects of illness. CONCLUSION: Group discussions about the case and the literature made it possible to expand the students' understanding. We argue that taking into account the main complaints can reveal a complex range of sociocultural meanings and webs relevant to understanding the health concepts and practices of patients and their microsocial groups. In doing so, we hope to contribute to the debates around medical education and the appreciation of sociocultural aspects in health practices. And, thus, enrich the caregiver-patient relationship towards person-centered care.

Improving Parents' Experience in the Pediatric Emergency Waiting Room: Researching the Most Optimal Design for an Information Tool.

To improve parents' experience in the pediatric emergency waiting room by means of an information tool, the information needs of parents and pediatric patients need to be determined. It is necessary to find an optimal design for the information needed to be understandable by and useful to the parents. This paper presents the first step of designing an information tool aiming to improve patient/parent experience, encourage the understanding of the care process, and optimize the patient-caregiver relationship. In order to acquire insight into parents' information needs, exploratory interviews were conducted and benchmark research had been performed. Furthermore, one focus group session with parents was conducted to identify their information needs, determine the format of the information tool, and visualize the best ideas by using paper mock-ups. The focus group concluded that parents prefer an information screen to a smartphone application. The designed mock-up visualizes and explains the care process, and represents one's position in the waiting queue. The mock-up was evaluated through questionnaires.

Identification of violence in the hospital environment: perceptions of nurses

IntroductionViolence is recognised by the WHO as a major and ubiquitous public health problem, that is constantly worsening.ObjectivesThe aim of our work was to estimate the frequency of aggressions against nurses in psychiatric and emergency departments, and to identify the factors associated with it.MethodsThis was a cross-sectional, descriptive and analytical study. It took place between January and March 2021, at both hospitals of Sfax (Tunisia).This study targeted 60 nurses in the psychiatry and emergency services.ResultsThe sample comprises 35 nurses (58%) from psychiatric services and 25 nurses (42%) from emergency services, mainly females (51%) and with average age of 35 years.(+/-9). The nurses interviewed were exposed to violence quite often, in 93% of cases. Almost all nurses (90 %) experienced verbal violence, 70 % experienced physical violence and more than half (62 %) experienced psychological violence. Nearly 11% of nurses reported a sexual violence. Factors that explain or contribute to violence mentioned by the participants were as follows; The Verbal violence was significantly correlated with poor reception conditions (p=0.013). The Sexual violence was significantly correlated with young age of nurse (p=0.005). As for psychological violence, it was significantly correlated with work overload (p=0.004), a poor caregiver-patient relationship (p=0.02) and poor patient care (p=0.04).ConclusionsOur study showed that violence against nurses was frequent in psychiatric and emergency departments. Various factors could modulate their occurrence such as training and improvement of the working conditions.DisclosureNo significant relationships.

Comparing adult-child and spousal caregiver burden and potential contributors.

Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden. We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors. Compared with spouses/partners (N=1007), adult-children (N=227) spent less time caregiving (14 vs 23hours/week; P<.001), but experienced higher social/ emotional burden (P<.01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P<.05) and financial burdens (P<.01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P<.05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it. Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.

Chapitre 4. Évaluation éthique des téléconsultations de suivi des patients atteints de sclérose latérale amyotrophique en phase avancée

The COVID epidemic has changed the way monitoring and management of patients with amyotrophic lateral sclerosis (ALS) is organized. Teleconsultations (TLC) have become essential to maintain medical surveillance. The practice of TLC required adapting the computer system to the patients&#8217; disability and the intervention of a TLC assistant professional with the ALS patient. When the confinement was lifted, many patients asked to maintain this monitoring modality. Nevertheless, the experience raised several ethical questions. This article raises four sets of questions based on the analysis of a clinical case. These questions concern the relevance of TLC in the ALS patient&#8217;s care pathway and the quality of information provided to the patient about it, the respect of patients&#8217; rights during TLC, the quality of the caregiver-patient relationship and finally the impact of TLC on the healthcare system.

Nurses' Perceptions of Prognosis-Related Communication.

Introduction:Effective communication is an important aspect in providing health care. Communications optimize the patient-caregiver relationship and improve patient care and family and caregiver welfare. The main objective of this study was to explore nurses’ experience of prognosis-related communication (PRC). Methods:Phenomenological research design was used to do this study. A total of 248 members of the local oncology nursing association were invited to complete this online survey from January 2016 to March 2016. Then, focus groups were held to discuss and improve themes derived from the analysis of online written responses. Five focus groups were performed, each consisting of 6 to 8 participants. No new data were generated by the fifth focus group and data saturation was achieved. NVivo 11 was used to manage data and facilitate the development of themes. Results:The participants were almost female, with a mean nursing experience of 13 years and almost 8 years of working experience in oncology ward. Three themes were extracted following data analysis, namely the importance of collaboration, impact of PRC, and communication of prognostic information. One hundred and fifty nurses (60%) reported that they received no formal training or education about PRC. Conclusion:There is a need to improve the knowledge and attitude of physician toward engaging nurses in the process of PRC.