Care Receivers Research Articles

Older South Sami women and men’s expectations regarding home healthcare in Sweden

Objective: The aim of this study was to describe the views and expectations concerning home healthcare from the perspective of older South Sami women and men in comparison with each other. Study design and methods: In this study, 56 older South Sami women (n=31) and men (n=25) were interviewed by telephone, using semi-structured interviews. Data was subjected to qualitative content analysis. Results: Our results revealed both similarities and some slight differences between the male and female participants. Both male and female participants expected the same care providers over time, in addition to expecting competence. Additionally, our female participants stressed that care providers should use time in their encounters with them as care receivers. For some female participants, this was related to competence. The findings also revealed that the care providers’ cultural backgrounds were of importance to both female and male participants, even if female participants preferred care providers with a South Sami background to a greater extent. The male participants stressed that having care providers with a South Sami background could be of importance, but they were more concerned about the care providers’ competence in the encounters with them as future care receivers. The main findings show that older South Sami women and men mostly have similar expectations of future home healthcare. Conclusions: Our results highlight that having the same care providers over time, with the necessary competence, is of importance to our participants. Additionally, participants prefer their care providers to have a South Sami background – although not at the expense of competence – and this was especially highlighted by the South Sami men. Implications for research, policy, and practice: Our study indicates that, if possible, in encounters with South Sami women and men, home healthcare services should facilitate for the same care providers over time and that they should be competent, preferably of a South Sami background, and speak South Sami if the care receiver has mastered the Sami language. What is already known about the topic? Older South Sami people want the same care providers over time, with individual adjustments and competent care providers in home healthcare. There are contradictions in and between older South Sami people, about having care providers with South Sami background speaking South Sami in home healthcare. What this paper adds Older South Sami women and men mostly have similar expectations of future home healthcare. Home healthcare services should facilitate for the same care providers over time and that these should be competent and preferably of a South Sami background.

“Looking After Yourself Is Self-Respect”: The Limits and Possibilities of Men’s Care on a Night Out

Notions of masculinity have played a central role in social and cultural research on men’s drinking events. Within this context, masculinity is regularly called on to explain the problematic disparities that mark men’s alcohol consumption, including men’s disproportionate involvement in drinking and a range of alcohol-related harms. More recently, however, researchers have begun to emphasize men’s drinking events as sites of care and support, leading some to suggest that men’s drinking masculinities are evolving in affirmative and health promoting ways. While unsettling the tendency of scholars to problematize men’s drinking masculinities, foregrounding the possibilities of men’s care potentially obscures its complexities and constraints. In this paper, we are concerned to critically re-examine the relationship between masculinity, care, and events of men’s alcohol consumption. Where some authors have positioned men’s care as an innate or uncomplicated good, we draw on a feminist ethics of care approach to explore its complexities, constraints, and exclusions. Through focus group discussions with 101 men, our analysis describes how ideals of masculine autonomy emerged through men’s accounts of drinking events, fundamentally shaping the constitution, practice, and possibilities of care. For the men in our study, the valorization of autonomy fostered ambivalence and tension around care, hindering their capacity as care givers and receivers. In turn, opportunities and accountability for care were overlooked, avoided, or displaced onto women. By highlighting the complexity of men’s care, our account complicates existing scholarship on men’s drinking while also gesturing toward new avenues for public health practice. We conclude by outlining how a more concerted focus on care may be integrated into public health policy, research, and programming and, in the process, contribute to the promotion of more health affirming and ethical modes of masculinity.

Adapting the patient and physician versions of the 9-item shared decision making questionnaire for other healthcare providers in Japan

BackgroundIn Japan, the number of older people with various health problems and difficulties in living is increasing. In order to practice patient-centered care for them, not only medical professionals but also multidisciplinary teams including care professionals and patients need to practice shared decision making (SDM) in the context of long-term care. For this reason, a measure of SDM in consultations with healthcare professionals (HCPs) other than physicians is needed. Therefore, this study aimed at adapting the patient and physician versions of the 9-item Shared Decision Making Questionnaire (SDM-Q-9, SDM-Q-Doc) for consultations with HCPs other than physicians in Japan.MethodsA pair of SDM measures that can be used by HCPs other than physicians, “Care SDM-Questionnaire for care receivers (SDM-C-patient)” and “Care SDM-Questionnaire for care providers (SDM-C-provider)” were prepared based on the Japanese versions of the SDM-Q-9 and SDM-Q-Doc. The internal consistency and conceptual structure of these measures were tested by secondary analysis of data from 496 participants from a workshop on SDM for different HCPs. Measurement invariance were tested by multigroup confirmatory factor analysis (CFA) for the patient (SDM-C-patient and SDM-Q-9) and provider (SDM-C-provider vs. SDM-Q-Doc) versions.ResultsBoth the Japanese SDM-C-patient and SDM-C-provider demonstrated high internal consistencies (Cronbach’s α coefficient was 0.90 and McDonald’s ω coefficient was 0.90 for both measures). CFA showed one-factor structures for both measures and original measures for physicians. Moreover, multigroup CFA showed configural and metric invariance between the novel care measures and original physician’s measures.ConclusionsThus, the novel SDM measures for care providers in Japan as well as the original physician’s measures could be used in training setting. As these measures were tested only in a training setting, their reliability and validity as new measures for care should be tested in a clinical setting in future.

A Comprehensive Assessment of Informal Caregivers of Patients in a Primary Healthcare Home-Care Program.

Studies of the characteristics of informal caregivers and associated factors have focused on care-receiver disease or caregiver social and psychological traits; however, an integral description may provide better understanding of informal caregivers’ problems. A multicenter cross-sectional study in primary healthcare centers was performed in Barcelona (Spain). Participants were a random sample of informal caregivers of patients in a home-care program. Primary outcomes were health-related quality of life and caregiver burden, and related factors were sociodemographic data, clinical and risk factors, social support and social characteristics, use of healthcare services, and care receivers’ status. In total, 104 informal caregivers were included (mean age 68.25 years); 81.73% were female, 54.81% were retired, 58.65% had high comorbidity, and 48.08% of care receivers had severe dependence. Adjusted multivariate regression models showed health-related quality of life and the caregivers’ burden were affected by comorbidity, age, time of care, and dependency of care receiver, while social support and depression also showed relative importance. Aging, chronic diseases, and comorbidity should be included when explaining informal caregivers’ health status and wellbeing. The effectiveness of interventions to support informal caregivers should comprehensively evaluate caregivers when designing programs, centering interventions on informal caregivers and not care receivers’ conditions.

EXPLORING RECIPROCITY IN PERCEPTIONS ON TELECARE WITHIN THE INFORMAL CARER–CARE RECEIVER DYAD

Abstract. Informal carers’ telecare acceptance decisions depend on how their care recipients perceive telecare, yet this relationship has not been researched very much. This article draws on qualitative data gathered from informal carers to explore reciprocity in telecare perceptions within dyads of informal carers and care receivers. A 4-month intervention study was conducted from 2018 to 2019 in the Central Slovenia region. A purposive sample of 22 older adults and their informal carers tested two telecare solutions. Thematic analysis was conducted using Atlas.ti 8, with four themes emerging: 1. the benefits of telecare use for older adults; 2. reluctance, rejection or negative perceptions of telecare; 3. the potential violation of older adults’ privacy; and 4. the importance of external and internal information for effective telecare use. This study confirms that that telecare perception is dyadically interdependent. Keywords: assistive technologies, informal care, ageing in place, dyads, older adults

Development of the Caregiver Confidence using Music Scale

Music serves as an important tool to improve the health and wellness of individuals in healthcare settings. In times of high caregiver burnout, therapeutic outlets such as music for care receivers and providers are becoming increasingly important. This paper presents the first iteration of the Caregiver Confidence using Music Scale (CCuMS), an assessment tool designed to evaluate caregivers’ readiness to adopt music care. Music care is defined as the informed and intentional use of music by anyone to improve the quality of care. The CCuMS was derived from a hierarchical cluster analysis of the Music Care Training program’s Level 1 post-evaluation survey (Post-MCTL1). Thematic interpretation of the statistical outputs from the cluster analysis was completed, resulting in the first iteration of the CCuMS. Initial validation methods that were feasible with current data were conducted. Specifically, face validity, content validity and convergent validity were calculated using Pearson correlations. The CCuMS shows promise as a measurement tool for use in healthcare settings due to the moderate correlation between the Post-MCTL1 and the CCuMS scale (r=0.524), and the strong correlation between the music care training thematic questionnaire and the CCuMS (r=0.970).

Aged 70 and still a child: complexities, strains and gains of older children caring for their (near) centenarian mothers.

Longer lives increase the possibility of caring duties, which means that older adults looking after their ageing parents-as well as their own partners-is becoming an increasingly common scenario in developed countries. To explore the caregiving demands of very old caregiving dyads and the experience of maintaining the identity of a child at such an advanced age. Qualitative study. 15 participants (four males), all aged 70 or over and caring for their mothers, aged between 95 and 105years old. Semi-structured interviews analysed thematically. Caregivers are willing to care for their mothers 'until death tears them apart', despite the double strains they face, that is more self-limitations and added care receiver need. On a positive side, they feel 'happy, thankful and proud' for still having their mothers alive. They also describe that maintaining the identity of a child at such an advanced age was somewhat unthought of and unexpected but an important source of pride. These findings suggest that these oldest-old caregiving dyads are characterised by a relationship shaped by strong feelings of extended filial love, constituting a family feature that needs further understanding. Findings also underscore the challenges these carers face in dealing with several agents (secondary caregivers) and entities in the care provision.

Dementia Family Carers’ Quality of Life and Their Perceptions About Care-receivers’ Dementia Symptoms: The Role of Resilience

Aim: The study examined (a) the relationship between caregivers' (CG) quality of life (QoL) and their reports about care receivers' dementia symptoms and (b) whether CG's resilience would be a mediator in this relationship. Method: This was a cross-sectional study based on a purposeful sampling. Face-to-face structured interviews were conducted with 118 CGs (79% females, mean age = 59, SD = 12). CGs provided assessment of their QoL and resilience, and proxy assessments of people with dementia (PwD) symptoms (cognitive functioning, functional activity and behavioural problems (BP)). Results: The BP were the only perceived dementia symptoms associated with the CGs' QoL. CGs' resilience fully mediated the relationship between perceived BP and CGs' QoL. Implications: Tailored training programs designed to improve CGs' QoL should focus on strengthening their personal resources, such as skills to manage the behaviour problems exhibited by PwD and their resilience to adapt to self-perceived behaviour problems common to dementia.

Neglected Needs of Family Caregivers during the COVID-19 Pandemic and What They Need Now: A Qualitative Study.

COVID-19 has had a negative impact on family caregivers, whether the care receivers lived with the caregiver, in a separate community home, in supportive living, or in long-term care. This qualitative study examines the points of view of family caregivers who care in diverse settings. Family caregivers were asked to describe what could have been done to support them during the COVID-19 pandemic and to suggest supports they need in the future as the pandemic wanes. Thorne’s interpretive qualitative methodology was employed to examine current caregiver concerns. Thirty-two family caregivers participated. Family caregivers thought the under-resourced, continuing care system delayed pandemic planning, and that silos in health and community systems made caregiving more difficult. Family caregivers want their roles to be recognized in policy, and they cite the need for improvements in communication and navigation. The growth in demand for family caregivers and their contributions to the healthcare system make it critical that the family caregiver role be recognized in policy, funding, and practice.

Predictors of institutionalization in users of day care facilities with mild cognitive impairment to moderate dementia

BackgroundMost people with dementia wish to remain at home for as long as possible. Therefore, it is important to know the predictors of institutionalization, especially those that can be influenced. The aim of the present study is to identify predictors of the institutionalization of people with mild cognitive impairment (MCI) to moderate dementia who attend day care facilities (DCFs) throughout Germany.MethodsThis study is a secondary analysis of longitudinal data from 371 dyads comprising a cognitively impaired care receiver (CR) and a caregiver (CG). The data were collected in DCFs and via telephone interviews at three measurement points. To investigate the extent to which 16 variables could predict the institutionalization of the CRs between the 6- and 12-month follow-up, in the first step bivariate Cox regressions were calculated. In the second step, significant predictors were included in a model using multivariate Cox regression.ResultsBetween the 6- and 12-month evaluations, 39 CRs moved into an institution. The risk of institutionalization of people with MCI to moderate dementia attending a DCF increased significantly (p < .05) when the CRs showed more neuropsychiatric symptoms (Hazard ratio (HR) = 1.237), when the CRs and their CGs did not live together in the same house (HR = 2.560), or when the care level of the CRs is low (HR = 2.241).ConclusionsNeuropsychiatric symptoms could be a possible starting point for therapeutic interventions that are designed to delay or prevent institutionalization. CG who do not live with their CR in the same house and CG who care for a CR with impairment in performing daily routine tasks care are particularly likely to make the decision to institutionalize the CR. For this group, advice and support are particularly important.Trail registrationISRCTN16412551.

The influence of culture on care receivers' satisfaction and aggressive tendencies in the emergency department.

IntroductionReducing aggressive tendencies among care receivers in the emergency department has great economic and psychological benefits for care receivers, staff, and health care organizations. In a study conducted in a large multicultural hospital emergency department, we examined how cultural factors relating to ethnicity interact to enhance care receivers’ satisfaction and reduce their aggressive tendencies. Specifically, we explored how care receivers’ cultural affiliation, individual cultural characteristics, and the cultural situational setting interact to increase care receivers’ satisfaction and reduce their aggressive tendencies.MethodData were collected using survey responses from 214 care receivers. We use structural equation models and the bootstrap method to analyze the data.ResultsCare receivers’ openness to diversity (an individual cultural characteristic) was positively related to their satisfaction that was associated with lower aggressive tendencies, only when they were affiliated with a cultural minority group and when the cultural situational setting included language accessibility.ConclusionOur results demonstrate that cultural affiliation, individual cultural characteristics, and cultural situational setting can affect care receivers’ satisfaction and aggressive tendencies in a multicultural emergency department context. In particular, high cultural openness of care receivers, and making information accessible in their native language, increased satisfaction and reduced aggressive tendencies among cultural minority care receivers in our study.

Mental Health Caregiver’s Experiences From the Perspective of the Power Threat Meaning Framework

Mental health caregivers experience a range of practical and emotional challenges. The Power Threat Meaning Framework is a recently articulated alternative framework for identifying patterns in distress. This qualitative study explores mental health caregivers’ experiences of power, threat, threat response, and meaning. Ten Australian mental health caregivers participated in semistructured interviews with data analysed using thematic analysis. Participants described positive and negative experiences of power in the form of institutional barriers, empowerment through advocacy, power dynamics, and power through nurturing. The mental health of the care receiver presented as a threat to caregiver’s well-being, as did loss of identity, grief, and community disconnect. Threat responses included seeking interpersonal support, regaining control, engaging in self-care, and using coping strategies. A sense of connection to the care receiver, self-growth, and giving back allowed carers to derive meaning from their role. Utilising the Power Threat Meaning Framework offers insight into mental health caregiver’s experiences beyond the confinements of current clinical practice. Suggestions for supporting mental health caregivers are provided.

Care labor, intergenerational equity, and (social) sustainability

Of the three sustainability (social, environmental and economic) pillars, the social one is the least developed. The 2020/2021 COVID-19 pandemic has highlighted why assuring social sustainability requires examining the central role care labor plays in intergenerational sustainability, with attention to the potentially conflicting rights of caregivers and care receivers, as well as to gender, geographic, age, class and other inequalities. A system that focuses on recognition, reduction, redistribution, reinforcement and reward (5 Rs) is needed to further gender equality and assure that care labor receives adequate policy support. Recognition or naming the problem, efforts to reduce drudgery, redistribution of care within the family and beyond, as well as two forms of support to care givers – reinforcement and reward make up the 5 Rs. Focusing on 5Rs can also help prioritize when social, environmental and economic goals conflict.

Development of Transfer-Assisting Robot System Using Posture-Supporting Wear and Support Robot

When assisting a care receiver to transfer from one plane to another, a caregiver needs to hold up and move him/her. As a caregiver has to support the weight of one person, transfer assistance imposes a heavy physical burden on the caregiver. Particularly, in Japan, with an increasing elderly population and a decreasing young population, there are a few caregivers to assist numerous care receivers to transfer. In this scenario, it is an extremely vital issue to develop methods to reduce the burden of the caregivers when assisting care receivers to transfer. In this study, by focusing on the clothes that care receivers wear, we developed a transfer-assisting robot system by combining a dedicated posture-supporting wear and a mobile robot based on a lift mechanism.

Relationship between expression of gratitude by home-based care receivers and caregiver burden among family caregivers

BackgroundsWe focused on the frequency of “gratitude” expressed by home-based care receivers towards family caregivers before they were in the condition that needed care and investigated the relationship with caregiver burden. MethodsThis cross-sectional online survey was completed by 700 family caregivers in Japan. Caregiver burden was assessed using the Zarit Burden Interview. Caregivers with a score of ≤ 19 were defined as having mild caregiver burden, those with a score of 20 to 38 as having moderate, and those with a score of > 38 as having severe. Additionally, caregivers were asked, “How often did you get a ‘thank you’ from your care receiver before they were in a condition that needed care?” Answers were scored using a 11-point Likert scale. Answers with scores 0-2 were defined as low frequency of gratitude, 3-6 as middle, and 7-10 as high. ResultsAmong all caregivers, 233 (33.3%), 229 (32.7%) and 238 (34.0%) accounted for having mild, moderate and severe caregiver burden, respectively. High frequencies of gratitude of 48.9%, 43.7%, and 39.1%, respectively, were concluded with a significantly higher rate in the mild than in the severe caregiver burden group (p = 0.03). The results of multinominal logistic regression analysis, even after adjusting for several factors, show that high frequency of gratitude was significantly associated with caregiver burden (p < 0.01, OR: 0.48, 95%CI: 0.28-0.81). ConclusionsWe found the frequency of gratitude from the care receiver before they were in the condition that needed care was substantially associated with caregiver burden.

Knowledge, perception and practices toward COVID-19 among care receivers attending a University Medical Center in Nigeria: A cross-sectional study

Background: Knowledge is one of the contributing factors formulating the perception and attitude of people towards disease outbreaks, which in turn drives compliance to effective prevention and control measures. The current cross-sectional study assessed the knowledge, perception and practices (KPP) towards COVID-19 pandemic among care receivers attending Ahmadu Bello University medical center (ABUMC) in Zaria, Nigeria. Methods: Data were collected using self-administered questionnaires which covered demographic characteristics and related KPP questions. Responses were tabulated, frequencies and percentages were computed for descriptive purposes, while independent t-test and ANOVA were used to depict statistical differences between demographic groups. Results: Among the 150 participants who answered the questionnaires, 58.7% were female, 62.0% were undergraduate students at various level of studies, 25.5% held a bachelor degree, about half of them (52.7%) never married, and have mean age of 29.90 ±10.66 years. Majority of the participants, especially women are knowledgeable about COVID-19 with overall mean knowledge score of 4.91 ±1.68 (70.14%). Similarly, 16-25years age range, and higher educational status were found to possess significantly (p <0.05) higher mean knowledge score. They hold positive perceptions, and have correct practices towards COVID-19 prevention. However, significant proportion of the participants (12.0%) believed that the disease does not exist in Nigeria. Conclusion: This study has demonstrated that, majority of the care receivers attending ABUMC have good knowledge, perception and practices toward COVID-19. Nevertheless, certain knowledge gaps and bad practices toward the pandemic were equally identified, which highlight the need to reiterate targeted health awareness campaigns about the pandemic in Nigeria.

Parentification Among Young Carers: A Concept Analysis.

There are approximately 1.4 million young carers in the United States alone. Being a young carer can result in parentification, a type of role reversal that occurs when children take on the roles and responsibilities of the adult. The purpose of this concept analysis is to provide a better understanding of the phenomenon of parentification among young carers through a description of its antecedents, attributes, and consequences using the steps of Rodgers' evolutionary method. The databases CINAHL, PubMed, PsycINFO, and Scopus were searched to identify 25 articles. The antecedents of the concept include the dependency of the care receiver and the child's adoption of a caregiving role. The attributes include fairness, obligation, resiliency, individuation, confidence in performing care tasks, cultural normalcy, family system functioning, support system, family resources, caregiver-care receiver relationship, and awareness of the child's needs. Parentification has both positive and negative consequences that impact the young carer. The antecedents, consequences, and identifiable attributes of the concept are presented through this work to provide a comprehensive picture of parentification among young carers. These findings showcase the multidimensional nature of parentification and the broad impact that it can have on young carers. While these findings do provide greater insight into young carers, the fact remains that little is known about this underserved and underacknowledged population. This concept analysis provides a foundation of understanding that specifies potential targets for intervention development, as well as modifiable outcomes, that can be explored through future research and intervention work.

Clinical Pathway and Patient Navigation: Research Protocol on the Appropriateness, Timeliness and Support of Women Diagnosed with Breast Cancer in Abia Stat

Background: Breast cancer is the second most common malignancy affecting Nigerian women, and contributes the highest cancer-related mortality in this population. Despite the rising prevalence of breast cancer, Nigerian healthcare professionals do not have adequate resources in screening, diagnosing, treating and follow up of women with breast cancer. The objective of this study was to understand how the development and implementation of a state-wide clinical pathway alongside a patient navigation program will impact the care providers and care receiver (beast cancer patients). Methods: This mixed methods, cross-sectional study will develop and deploy a multidisciplinary clinical pathway focused on breast cancer management. Trained patient navigators will facilitate the implementation of the pathway and to support patients. An electronic medical record system will be deployed to document the use of the pathway. Mixed methods data will be collected periodically, including patient satisfaction, treatment adherence, psychosocial outcomes, and quality of life. Qualitative data will provide contextual details.Anticipated Result and Discussion: This research will potentially structure the management of breast cancer in a way that optimizes available resources while reducing delays in Abia state, Nigeria.

Pain-coping types among older community-dwelling care receivers with chronic pain

Objectives There is a lack of knowledge on coping with pain and sub-group specific pain-coping profiles among older home care receivers with chronic pain. To describe pain-coping strategies, identify subgroups based on cognitive and behavioral pain-coping strategies and pain-related psychological impairment and to compare these groups with regard to socio-demographic, medical, pharmacological and psychological characteristics. Method Data of 212 care receivers were examined using the German pain-coping questionnaire (FESV) to determine how they cope with pain. Subgroups were identified using hierarchic agglomerative cluster analysis, using Ward’s algorithm and squared Euclidean distance, and characterized using socio-demographic, medical, pharmacological and psychological parameters. Multinomial logistic regression was used to identify variables associated with the subgroups. Results Older care receivers apply cognitive and behavioral strategies to manage pain. Three subgroups were identified: Cluster 1 (25.9%) with good coping competences and little psychological impairment, Cluster 2 (40.1%) with poor coping competences and high psychological impairment, and Cluster 3 (34%) with good coping competences and high psychological impairment. Significant differences between the clusters were observed for age, pain intensity, pain-related interference, daily activities, depression and resilience. Logistic regression demonstrated that belonging to Cluster 2 was associated with the number of pain-reducing medications, depression and resilience. Belonging to Cluster 3 was significantly linked to daily activities, the number of pain medications, depression and the level of care required. Conclusion Differentiating between pain-coping profiles in the group of older care receivers with chronic pain necessitates target group-specific pain-oriented psychotherapeutic interventions, which can result in improved pain management.

Rural Healthcare IoT Architecture Based on Low-Energy LoRa.

Connected health is expected to introduce an improvement in providing healthcare and doctor-patient communication while at the same time reducing cost. Connected health would introduce an even more significant gap between healthcare quality for urban areas with physical proximity and better communication to providers and the portion of rural areas with numerous connectivity issues. We identify these challenges using user scenarios and propose LoRa based architecture for addressing these challenges. We focus on the energy management of battery-powered, affordable IoT devices for long-term operation, providing important information about the care receivers’ well-being. Using an external ultra-low-power timer, we extended the battery life in the order of tens of times, compared to relying on low power modes of the microcontroller.