Patient-caregiver Relationship Research Articles

Interventions to help support caregivers of people with a brain or spinal cord tumour.

The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population. To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers. We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019). We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention. Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning. In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials. The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.

Impact of Aging on Empathy: Review of Psychological and Neural Mechanisms.

Empathy in aging is a key capacity because it affects the quality of older adults’ relationships and reduced levels are associated with greater loneliness. Many older adults also find themselves in the role of a caregiver to a loved one, and thus empathy is critical for the success of the caregiver–patient relationship. Furthermore, older adults are motivated to make strong emotional connections with others, as highlighted in the socioemotional selectivity theory. Consequently, reductions in empathy could negatively impact their goals. However, there is growing evidence that older adults experience at least some changes in empathy, depending on the domain. Specifically, the state of the research is that older adults have lower cognitive empathy (i.e., the ability to understand others’ thoughts and feelings) than younger adults, but similar and in some cases even higher levels of emotional empathy (i.e., the ability to feel emotions that are similar to others’ or feel compassion for them). A small number of studies have examined the neural mechanisms for age-related differences in empathy and have found reduced activity in a key brain area associated with cognitive empathy. However, more research is needed to further characterize how brain changes impact empathy with age, especially in the emotional domain of empathy. In this review, we discuss the current state of the research on age-related differences in the psychological and neural bases of empathy, with a specific comparison of the cognitive versus emotional components. Finally, we highlight new directions for research in this area and examine the implications of age-related differences in empathy for older adults.

Family dynamics in young adult cancer caregiving: “It should be teamwork”

Purpose/Objectives: Young adult cancer patients undergo stress at a time when their primary source of psychosocial support may be changing. Our goal was to provide insight into the expectations young adult patients and their family caregivers for types of psychosocial support.Research Approach: Semi-structured interviews.Participants: Fifteen patients, 9 caregivers recruited from an AYA clinic.Methodological Approach: Thematic content analysis using the constant comparison method.Findings: Two themes were identified. First, families described coordinating support around strengths to determine who would take on caregiving roles/tasks. Second, families described the importance of patient-caregiver relationship status/history in determining trust and expectations.Interpretation: Family strengths and existing relationships can impact caregiving roles and expectations for families of young adult cancer patients.Implications for Psychosocial Providers: Cancer clinics may need to involve members of the psychosocial provider team to better understand the family dynamics of their patients and how these relate to support.

'Best fit' caring skills of an interprofessional team in short-term goal-directed reablement: older adults' perceptions.

This paper reports a study conducted to illuminate older adults' perceptions of multiproffesional team's caring skills as success factors for health support in short-term goal-directed reablement. The fact that older adults are given perquisites to live in their own homes puts great demands on the professional care given them at home. An option offered could be short-term goal-directed reablement delivered by an interprofessional team. This means after periods in hospitals to strengthen their multidimensional health, older adults' reablement processes are supported to return to their daily life as soon as possible. Crucial in making these intentions a reality seems to be identifying the professional's approach that works as success factors for health support in the reablement process. A descriptive qualitative design with a phenomenographic approach based on interviews with 23 older persons who had received short-term goal-directed reablement at home after a period at hospital was used. The study was approved by an ethical board. The analysis revealed four major referential aspects of multiproffesional team's caring skills as success factors for health-support in short-term goal-directed reablement: a motivating caregiver, a positive atmosphere-creating caregiver, a human fellowship-oriented caregiver and a caregiver that goes beyond the expected. In this study, all caring skills in the continuum are perceived as positively loaded necessities in different situations during the reablement process. Caring skills as success factors are initially shown at a practical level, such as how the professional caregivers encourage and motivate the older persons in different training situations. At a deeper level, the caregivers open their hearts and have the capacity to go beyond the expected in the professional caregiver-patient relationship. The multiproffesional team's best fit caring skills during the home reablement process need to be addressed as evidence base in the area of elderly home care.

Perceptions of patients regarding diabetes-related health communication strategies in the Free State, South Africa.

BackgroundThis study researched the perceptions of patients diagnosed with diabetes concerning diabetes-related health communication strategies in the Free State province in South Africa. The prolongation and quality of life of patients diagnosed with diabetes are affected by lifestyle choices. An enabler of risk reduction is health communication which informs, influences and motivates individuals to adopted health-focused lifestyles.AimThis study sought to describe the perceptions of patients regarding diabetes-related health communication strategies in the Free State, South Africa.SettingThis study was carried out in primary health care centres and community health care centres within the Free State province in South Africa.MethodsA qualitative, descriptive and exploratory research design was used in this study. Thirty-four patients diagnosed with type two diabetes for at least a year were purposively included in this study. Semi-structured interviews in Afrikaans, English, Sotho and Xhosa were conducted. Data analysis was through inductive reasoning and thematic analysis.ResultsThe majority of the respondents were older women having been diagnosed with diabetes for more than 5 years, with at least primary school education and of diverse South African ethnicities. The main prompting questions operationalised the term ‘perception’, probing their feelings, experiences and knowledge of health-related communication strategies as presented by a variety of information sources. After recording interviews, data were analysed according to themes, categories and sub-categories.ConclusionsThe study highlights factors that encourage patients to seek help and foster attitudes of compliance. Practical problems regarding the management of diabetes are underlined. The role of family, as well as the patient–caregiver relationship, in the acceptance and management of the disease is revealed. Societal perception of male symptomology is shown. The study offers information to stakeholders and health care workers for continued successful management of diabetes in communities.

Secrecy in the individual or shared care relationship

Secrecy in the care relationship raises questions. For caregivers in psychiatry, it is an ethical requirement. However, the transparency of the information collected or recommendations upheld by quality departments rock the foundationsof the therapeutic relationship. On which aspects is the therapeutic alliance based? How shouldsecrecy be evoked in the team today? Beyond the dual caregiver-patient relationship, mechanisms to ensure the respect ofsecrecyrelies on the institutional level.

L’outil DISC améliore la communication et les résultats de la réhabilitation respiratoire : une approche comportementale adaptée

Competence in personal relationships is essential for a caregiver, especially in pulmonary rehabilitation (PR). Considering the behavioral profile of patients might help to optimize their management and the results of PR. We evaluated eight hundred and thirty-two consecutive patients with chronic respiratory disease who received eight weeks of home-based PR. Their exercise tolerance (six-minute stepper test, 6MST), mood (HAD), and quality of life (VSRQ, MRF28) were evaluated at the beginning and end of PR. For six hundred and ninety patients, a behavioral approach was implemented at the beginning of PR by using the DISC tool to identify four behavioral profiles: dominance, influence, steadiness, conscientiousness. The remaining 142 patients served as the control group. Subjectively, the therapeutic alliance was more easily established with the behavioral approach. Compared with the control group, patients with the "steadiness" profile were younger (60.7±12 years) and mostly female (52.8%), whereas patients with the "conscientiousness" profile were older (67.5±10.6 years) and mostly male (85.5%). The four behaviorally profiled groups showed no differences in exercise tolerance, mood, or quality of life scores at baseline. Globally, all patients improved their exercise tolerance, mood and quality of life. The percentage of responders to 6MST and VSRQ (>MCID) was 7.5% and 5.3% higher with the behavioral approach. For non-responders to 6MST and VSRQ (<MCID), only patients benefiting from the behavioral approach improved the other parameters studied, patients from control group having exhibited no improvement at all. The DISC-guided behavioral approach improves the patient-caregiver relationship and achieves better results at the end of PR.

Alzheimer's disease: some pharmacological and non-pharmacological approaches to correcting neuropsychiatric disorders

Today, there is no reliable pharmacological correction of dementia, despite its high prevalence worldwide. The clinical presentation of Alzheimer's disease at one or another stage is accompanied by neuropsychiatric disorders (NPDs) in addition to cognitive defect. The intensity and range of NPDs are different. The possibilities of drug therapy for NPDs are demonstrated. The role of akatinol memantine in correcting a number of psychological and behavioral disorders is highlighted. Biological, psychological, social, and environmental factors are identified among those that contribute to or provoke the development of NPDs. Knowledge of the triggers of mental disorders makes it possible to prevent and thereby reduce or eliminate NPDs. Special emphasis is laid on the patient-caregiver relationship. In recent years, non-pharmacological interventions have been increasingly used as priority-line therapy for NPDs. There are data on main methods for non-pharmacological correction and on the efficiency of their application.

THE INFLUENCE OF CAREGIVER-PATIENT RELATIONSHIP QUALITY AND CAREGIVER BURDEN ON LONG-TERM CARE USE IN SINGAPORE

As the fastest ageing Asian nation, multi-ethnic Singapore expects increasing demand for formal and informal long-term care services (LTCS). However, when compared to Western contexts, the current formal LTCS utilization is relatively low, while the informal LTCS utilization relatively high. Previous research has uncovered patient factors for LTCS use. To improve service planning and design, this study aims to elucidate the caregiver factors that influence LTCS use in Singapore. A 12-month prospective cohort survey of caregiver-stroke patient dyads with data collection at baseline, 3-month, and 12-month was conducted. Eligible patients and their informal caregivers (family or friend) were recruited from all five public tertiary hospitals in Singapore between December 2010 and September 2013, at the point of hospital admission. 638 patients who were above 40 years old, and who were diagnosed with a recent stroke event, and their 383 caregivers, responded to all three waves of this study. Logistic regressions revealed that better wave-1 caregiver-patient relationship quality has 63.2% and 76.8% higher odds of predicting wave-2 and wave-3 informal care use than non-use, respectively. Better wave-1 caregiver-patient relationship quality has 25.9% higher odds of predicting wave-2 concurrent use of both formal and informal LTCS, as compared to use of informal LTCS only. Higher wave-1 caregiver burden has 4.1% higher odds of predicting wave-2 formal care use than non-use. Formal LTCS use complements rather than substitute informal LTCS use. Services aimed at improving caregiver-patient relationship quality and identifying burdened caregivers prior to an older person’s functional decline should be considered.

Paradox of self-care gender differences among Italian patients with chronic heart failure: findings from a real-world cross-sectional study

AimThe aim of this study was to critically analyse and describe gender differences related to self-care among patients with chronic heart failure (HF).Methods and resultsA monocentric real-world cohort of 346...

PSY24 - Impact of Autosomal Dominant Polycystic Kidney Disease (ADPKD) on Caregivers and Families

Autosomal dominant polycystic kidney disease (ADPKD) is a rare, dominantly inherited systemic disease resulting in gradual kidney enlargement and kidney failure over time. Commonly, multiple members of a family across several generations are affected by the disease and often patients with ADPKD also function as caregivers for other family members. This study explored the burden experienced by caregivers for patients with ADPKD. Focus groups with 139 caregivers for patients with ADPKD in 14 countries (Argentina, Australia, Brazil, Canada, China, Czech Republic, Hungary, Japan, Poland, Romania, South Korea, Spain, Taiwan, United States) using iterative, concept elicitation methodology to understand the impacts of caring for a patient with ADPKD. Caregivers for patients with ADPKD (66.9% female, 33.1% male) provide assistance with activities of daily living and emotional support. Furthermore, 25 caregivers (88% female, 12% male) were also diagnosed with ADPKD themselves, which elevated their burden. Almost all caregivers in the study provided care or support for immediate family members (94.8%) while a smaller percentage (2.9%) were assisting a distal relative or friend. Caregivers reported impacts on emotional (74.1%), social (38.5%), work/employment (26.6%), financial (23.7%), and physical (17.3%) aspects of their daily lives. There were slight differences in how caregivers in various regions emphasized impacts, and impacts varied depending on the disease stage of the ADPKD patient and the caregiver-patient relationship. Caregivers for patients reported substantial impacts on their daily lives which was globally consistent. Defining caregiver burden is essential to understanding ways of supporting the ADPKD population in the community.

Let’s talk numbers: a qualitative study of community-dwelling US adults to understand the role of numeracy in the management of heart failure

ObjectiveTo examine the perspectives of adults with heart failure (HF) about numerical concepts integral to HF self-care.SettingThis qualitative study took place at an urban academic primary care practice.ParticipantsThirty men and...

What Can One Say? Last Words to an Individual in Hospice.

What Can One Say? Last Words to an Individual in Hospice.

Empowerment from patient's and caregiver's perspective in cancer care.

The caregivers’ perceptions of the patients’ health condition may be biased and induce them to perceive higher needs than patients actually disclose. Our aim was to assess if the level of knowledge and awareness about cancer disease and treatment, and patient participation and assistance differs between caregivers and patients. A descriptive, cross-sectional study was conducted across five countries (Italy, United Kingdom, Spain, France and Germany) on a total of 510 participants who directly (patient) or indirectly (caregiver) faced a cancer diagnosis. Investigating this divergence could help to identify possible difficulties in patient–caregiver relationship, eventually improving patient empowerment.

A Group Therapeutic Songwriting Intervention for Family Caregivers of People Living With Dementia: A Feasibility Study With Thematic Analysis

This study aimed to test the feasibility of implementing a group songwriting program with family caregivers (FCGs) of people living with dementia. Fourteen FCGs consented to participate in either the songwriting group (n = 8) or control condition (n = 6). Participants completed baseline and 7-week measures of depression (PHQ-9), perceptions of their caregiving experience (PACQ), and perceptions of their relationship with the care recipient (QCPR). A six-session group songwriting program was implemented across two sites, focusing on participants co-creating a song about their caregiving experiences. Participation and retention rates were high suggesting the intervention was acceptable. An observed pre-post effect size for the PHQ-9 in the experimental group (d = 0.64) and control group (d = −0.33) suggests the measure is sensitive to change over a short period of time in this population and has the potential to detect significant change in a larger controlled trial. Qualitative analysis of focus group interviews suggested the songwriting process allowed participants to share their entire caregiver journey with others, differentiating the intervention from standard carer support groups. Participants described group songwriting as enabling them to find connections with other caregivers, create a group identity, and gain insight into their carer journey, subsequently leading to the development of inner strength and personal growth. Qualitative findings suggest coping may be a more relevant construct to measure than caregiver-patient relationship quality or caregivers' perception of caregiving.

A bittersweet relationship: What does it mean to be the caregiver of a patient with bipolar disorder?

As with most of the chronic illnesses, the changes and consequences brought on by bipolar disorder (BD) are not exclusive to the patient and often spread to those around them, especially for direct caregivers of these patients. It is known that there is a significant emotional and physical toll among persons who coexist daily with those who suffer from this disorder. Aware of the importance of the role played by informal caregivers (especially the family) in the stability and evolution of patients with bipolar disorder, this study seeks to explore the perception that family members responsible for bipolar persons have of themselves as caregivers of these patients. This is a qualitative study using a phenomenological design, for which the technique of focused or semi-structured interviews was employed. Ten caregivers of people with diagnosis of BD agreed to participate. Within the family, it is a single individual who has the role of caregiver. Experiences and meanings that are generated into the nucleus of the patient-caregiver relationship are full of ambivalence and involve many aspects worthy of analysing, such as the development of identities, the feminization of patient care, the process of therapeutic decision-making and the evolution of the disease. It is necessary to integrate evaluation and attention for patients' caregivers, recognizing them as individuals and elucidating their constructed meanings and the dynamics established in their relationship with patients. In this way, there would be a more integrative clinical approach of the patient-caregiver relationship, considering not only the necessary pharmacological treatments but also accompanying both patient and family, along the path they travel as they experience BD.

Genuine Smiles by Patients During Marital Interactions are Associated with Better Caregiver Mental Health.

Providing care for a spouse with dementia is associated with an increased risk for poor mental health. To determine whether this vulnerability in caregivers is related to the expression of positive emotion, we examined 57 patients with Alzheimer's disease and behavioral variant frontotemporal dementia and their spouses as they discussed a marital conflict. Facial behavior during the discussion was objectively coded to identify Duchenne (i.e., genuine) smiles and non-Duchenne (i.e., polite) smiles. Caregiver mental health was measured using the Medical Outcomes Survey. Greater expression of Duchenne smiles by patients was associated with better caregiver mental health, even when accounting for covariates (i.e., diagnosis, patient cognitive functioning, and caregiver marital satisfaction). Greater expression of non-Duchenne smiles by patients was associated with worse caregiver health, but only when covariates were entered in the model. Expression of Duchenne and non-Duchenne smiles by caregivers was not associated with caregiver mental health. Patients' expression of Duchenne and non-Duchenne smiles may reveal important aspects of the emotional quality of the patient-caregiver relationship that influence caregiver burden and mental health.

Care relationships at stake? Home healthcare professionals\u2019 experiences with digital medicine dispensers \u2013 a qualitative study

BackgroundAlthough digital technologies can mitigate the burdens of home healthcare services caused by an ageing population that lives at home longer with complex health problems, research on the impacts and consequences of digitalised remote communication between patients and caregivers is lacking. The present study explores how home healthcare professionals had experienced the introduction of digital medicine dispensers and their influence on patient-caregiver relationships.MethodsThe multi-case study comprised semi-structured interviews with 21 healthcare professionals whose home healthcare service involved using the digital medicine dispensers. The constant comparative method was used for data analyses.ResultsAltogether, interviewed healthcare professionals reported three main technology-related impacts upon their patient-caregiver relationships. First, national and local pressure to increase efficiency had troubled their relationships with patients who suspected that municipalities have sought to lower costs by reducing and digitalising services. Participants reported having to consider such worries when introducing technologies into their services. Second, participants reported a shift towards empowering patients. Digital technology can empower patients who value their independence, whereas safety is more important for other patients. Healthcare professionals needed to ensure that replacing care tasks with technology implies safe and improved care. Third, the safety and quality of digital healthcare services continues to depend upon surveillance and control mechanisms that compensate for less face-to-face monitoring. Participants did not consider the possibility that surveillance exposes information about patients’ everyday lives to be problematic, but to constitute opportunities for adjusting services to meet patients’ needs.ConclusionsTechnologies such as digital medicine dispensers can improve the efficiency of healthcare services and enhance patients’ independence when introduced in a way that empowers patients as well as safeguards trust and service quality. Conversely, the patient-caregiver relationship can suffer if the technology does not meet patients’ needs and fails to offer safe and trustworthy services. Upon introducing technology, home healthcare professionals therefore need to carefully consider the benefits and possible disadvantages of the technology. Ethical implications for both individuals and societies need to be further discussed.

The caregiver's relationship with the sick body

The patient-caregiver relationship is also a 'body-to-body' relationship. It brings into play sensory perceptions generating a cognitive and emotional interpretation. Maintaining the proper distance enables caregivers to remain professional while controlling the risk of 'symbolic contamination' and emotional overflow.

Behaviors and Patterns of Searching Care Among Fulani&amp;apos;s Children Living in Rural Area, in a Context of Therapeutic Pluralism in the Ferlo, Senegal

The diversity of therapeutic offers is a proven fact in the contemporary world. In a still traditional society that is the Ferlo, there is a therapeutic diversity that encompasses a wide range of people in a nomadic community. In a context of medical pluralism, this article was contributing to the comprehension of how the structuring of social structures and health systems and the inter-functionality of its components can influence therapeutic remedies. This was a case study. The case studied was the logic of care-seeking behaviour of deseased children in a context of therapeutic pluralism. A total of 30 peoples were interviewed. These included 20 mothers and caregivers aged 6 to 59 months, 8 traditional healers and 2 health providers from the Widou thiengholi health post. Semi-directive interview guides were used for the survey. Interviews with informants were conducted in the local language of the participants. The data obtained through each in-depth individual interview were analyzed separately through the thematic content analysis. Data analysis was performed using NVivo 11 software. In the Ferlo, in the gender relations in the management of the disease in the child, the grandmother had a predominant place in the therapeutic decision-making process. The representations of diseases allowed a binary typology of diseases into "doctors" and "healers" diseases. These representations determined the type of recourse. There were other reasons for the choice of the type of remedy. The quality of the caregiver-patient relationship was one of the main reasons that influenced the choice of the health care facility as a use of care. The poor quality of the reception and the bad behavior of the providers discourage the communities to go to the health post. Despite the fact that the communities recognize the effectiveness of the treatment provided there. This study showed that disease representations play an important role in defining care-seeking behavior. Thus the “singular representations” relating to the types of illness condition the type of recourse to care. Nevertheless, there were characteristics specific to a type of remedy which contributed to the underutilization of this type of remedy. In this study, it was the quality of the care-patient relationship that was judged to be of insufficient quality and that was a factor of the underutilization of modern health services.