Perceptions Of Family Caregivers Research Articles

Family Caregivers' Perceptions and Experiences of Supporting Older People to Cope With Loneliness: A Qualitative Interview Study.

Loneliness has become a significant public health issue among community-dwelling older adults particularly those with multimorbidity. Family caregivers are crucial care resources for dependent older adults living in the community before transitioning to institutional services. However, understanding of their perceptions in supporting older adults with multimorbidity to cope with loneliness is limited. This qualitative study aimed to elucidate on the experiences of caring and explore the experiences and perceptions of family caregivers in supporting older community-dwelling adults with multimorbidity to cope with loneliness. Eleven family caregivers, aged 51-93 years old, with at least 2 years of caregiving experience were purposively recruited and interviewed individually. The Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist was utilised to report the study. Three key themes were generated from the inductive analysis: (1) recognising older adults' loneliness through the expression of unusual emotions, behaviour/s, social network alteration and speech; (2) variations in perceptions and responses to loneliness among different family caregiving relationships; and (3) challenges in addressing loneliness. Positive feedback from cared-for older adults was appreciated by their family caregivers which in turn motivated further actions to alleviate loneliness. The findings emphasised the importance of developing specific patients and family caregivers centred interventions, such as communication skills training to enhance effective communications. Cultural values and norms of individuals should be respected in those interventions, ensuring that emotional expression is facilitated in a comfortable way for both older patients and family caregivers.

Explore Parent’s Perception Regarding Role of Nurse as an Educator in an Intensive Care Unit Punjab Pakistan: A Qualitative Study

Background: The neonatal intensive care unit (NICU) environment is highly stressful for both neonates and their family caregivers. The quality of interaction between caregivers and medical staff can significantly influence caregiver trust and satisfaction, which are crucial for the effective care and recovery of the neonate. Objective: This study aims to assess the perceptions of family caregivers regarding the role of nurses as educators in a NICU in Punjab, Pakistan, focusing on the communication strategies employed by nurses and the support infrastructure available to caregivers. Methods: This qualitative study involved semi-structured interviews with 14 family caregivers of neonates hospitalized in the Allama Iqbal Teaching Hospital's NICU. Participants were selected based on their intensive involvement in the care of their hospitalized newborns. Data were analyzed using content analysis to explore the themes related to nursing care quality as perceived by the caregivers. Results: Caregivers generally perceived the nursing care as excellent, noting particularly the professionalism and empathy of the nursing staff. However, issues such as inadequate hospital infrastructure, particularly sleeping facilities for caregivers, and occasional lapses in communication and caregiving flexibility were identified as areas needing improvement. The study also highlighted the critical role of timely and accurate information provided to caregivers in reducing anxiety and enhancing their involvement in the care process. Conclusion: Effective communication and adequate support infrastructure are essential in enhancing caregiver trust and satisfaction in the NICU setting. Improving these areas can significantly impact the recovery and well-being of both neonates and their families.

Association Between Family Functioning and Health-related Quality of Life in Stroke Survivor–Informal Family Caregiver Dyads

PurposeStroke survivors and their informal family caregivers may share the impact of the disease, which may affect family functioning and quality of life (QoL) for both. This study compared the perceptions of stroke survivors and informal family caregivers regarding family functioning and QoL and examined the QoL of those reporting effective versus ineffective family functioning. MethodsA cross-sectional study design and convenience sampling were used. Stroke survivor–informal family caregiver dyads were recruited from a medical university hospital. We assessed participants’ demographic and clinical variables, including disease severity, family functioning, and QoL. Independent t-test, paired t-test, Wilcoxon signed-rank test, and Mann–Whitney U test were used to analyze the data. ResultsSeventy-one stroke survivor–informal family caregiver dyads participated in the current study. Most stroke survivors and informal family caregivers reported effective family functioning, with no significant differences. However, significant differences existed in the seven domains (physical functioning, role-physical, bodily pain, general health, vitality, social functioning, and role-emotional) of QoL, except emotional health. Stroke survivors reporting ineffective family functioning had a significantly lower mental component summary score, unlike informal family caregivers. ConclusionOur findings suggest that family functioning is crucial to ensure stroke survivors’ QoL, particularly regarding their mental health. Health professionals should prioritize mental health assessments and provide appropriate care interventions for stroke survivors in the first 1–6 months after stroke onset.

Family Caregiver Communication and Perceptions of Involvement in Hospice Care.

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.

Tilting at Windmills – A Qualitative Study about Family Caregiver Interactions and Perceptions in Forensic Mental Health Care

In forensic mental health care (FMHC), family caregivers perceive themselves as burdened in their relationships with the service user (the family member with mental illness) and by difficult collaboration with healthcare professionals (HCPs). There is a political objective to involve this group in the care and treatment of the service user in mental health care. To improve family caregiver involvement in care and treatment in FMHC, research about their perceptions is needed. This study aims to explore family caregivers’ perceptions of their interactions with the service user and HCPs. The method used was qualitative. Semi-structured, in-depth interviews with 12 family caregiver participants were carried out and analyzed thematically. The analysis resulted in three interrelated main themes: Strategies to normalize everyday living; Distrust of the quality of care; and Loss and grief. Family caregiver feelings of loss and grief may be suppressed, which additionally could prevent them from supporting the service user.

Family caregivers' perceptions of the quality of primary healthcare services for people with disabilities: a cross-sectional study.

How do caregivers of people with disabilities perceive the quality of health services in primary healthcare? The objective of this study was to show the quality of health services for people with disabilities in primary healthcare, based on the perceptions of family caregivers. This is a cross-sectional study. During data collection, 49 family caregivers who use the center were interviewed. The assessment instruments used were the Socio-Economic and Demographic Questionnaire and the PCATool-Brasil (Primary Care Assessment Tool), in the reduced adult and child versions, to assess the level of essential and derived characteristics of primary healthcare. Women were the main caregivers (40; 82%), and the main disability was mental (28; 58%). The highest scores were observed in affiliation (100%), utilization (73.4%), and information system (83.7%). The lowest scores were found in longitudinal (26.5%), integration of care, available services, services provided (28.6%), and derived scores (28.6-22.4%) related to family guidance and community guidance. The population showed a low orientation toward primary healthcare, with a high total score (22.4%). The economic situation showed a positive association (p=0.017). According to the characteristics of primary healthcare, care is fragmented and disjointed and does not meet the needs of people with disabilities and their caregivers.

Caregiver Attributions of Cause to Behavioral Symptoms of Dementia

AbstractBackgroundMost individuals with Alzheimer’s disease and related dementias (ADRD)exhibit behavioral and psychological symptoms of dementia (BPSD) which can negatively impact quality of life for both caregiver and care recipient, yet there is a lack of knowledge on mechanisms of symptom development and triggers that can exacerbate a symptom. Thus, the aim of this study is to explore family caregiver perceptions’ of why a particular BPSD occurred.MethodThis study used a micro‐longitudinal design with family caregivers (N = 69) completing 8 days of diaries four times a day. Diaries were sent randomly three times a day and once in the evening. Data for this study were derived from the three random diaries (n = 982 responses) from the open‐ended question, “why do you think the behavior occurred?” This question was a follow‐up question to the caregiver’s report of the last observed behavioral symptom. Content analysis was used to identify initial codes for thematic analysis. Focused coding was used to further refine and organize into thematic categories.ResultThe sample was 54% African American and 69% female with a mean age of 74 caring for a close family member with dementia. Final analysis of data revealed 5 themes describing the caregivers’ perceptions of the cause of the behavioral symptom. These themes included describing the cause as: 1) the care recipient experiencing a loss of autonomy, 2) behavioral symptom as a direct result of the disease, “it’s Alzheimer’s, stupid.” 3) attributing negative emotions to the care recipient, anger, fear 4) environmental factors such as too much conversation, TV show, being cold 5) physical symptoms, “knee pain, “lack of rest,” ill‐fitting dentures. Responses among many of the individual caregivers varied daily from diary to diary based on the behavior reported or they simply answered, I do not know.”.ConclusionThere are many interventions which aim to reduce caregiver stress and improve management of BPSD though they often have small effect sizes and do not sustain the effect over time. Incorporating insights from caregivers on how BPSD occur in daily life may provide for more ecologically valid interventions.

Understanding the Experiences of Family Caregivers of Nursing Home Residents With Dementia: A Grounded Theory Study.

Alzheimer's disease and related dementias progress over time and result in cognitive decline, loss of independence, and behavioral and psychiatric symptoms of dementia that can lead to nursing home placement. Research has focused on examining the effects of nursing home placement on the family caregiver; however, their experiences are less understood. We sought to investigate the experiences and perceptions of family caregivers of nursing home residents with dementia. The objective was to create a conceptual model that explains the complex nature of the family caregiver experience. This study is part of a larger randomized controlled trial. Following a grounded theory approach, we completed 30 in-depth, one-on-one interviews with family caregivers of nursing home residents with dementia. Data analysis followed an iterative process that employed open, axial, and selective coding. Our conceptual model depicts the interrelationship between contributing factors that interrelate and impact family caregiver satisfaction with nursing home care. Six factors contribute to family caregiver satisfaction: family caregiver interactions with nursing home staff; staff management of resident behavioral symptoms; nursing home context; family caregiver knowledge of dementia; family caregiver strain; and the resident experience. Our findings revealed family caregiver experiences that are unique to the institutional nursing home setting and not reflected in prior work focusing on experiences within community-based settings. Understanding family caregiver experiences and the contributors to how satisfaction in care is perceived, may foster collaboration and teamwork among families and staff.

Qualitative study on antibiotic management in households: perception of family caregivers

Qualitative study on antibiotic management in households: perception of family caregivers

Physical restraints applied to people diagnosed with dementia in home care from the perceptions of family caregivers: A qualitative study in China.

INTRODUCTION: The use of physical restraints is a common practice in home care. Family caregivers face care-related and moral pressures due to the influence of Confucian culture in China. The use of physical restraints in the Chinese cultural environment may differ from the use of such restraints in other cultures. Current research on physical restraints focuses on quantitative analysis of its prevalence and reasons within the institutions. However, there is little research on how family caregivers perceive physical restraints in home care context, especially under Chinese culture. To explore the perceptions of family caregivers on physical restraints in people diagnosed with dementia receiving home care. A descriptive, qualitative study of Chinese family caregivers of people diagnosed with dementia in home care. Framework method analysis was adopted using the multilevel socio-ecological model. Beliefs about benefit lead to a dilemma for family caregivers. Cherishing family's affection encourages caregivers to reduce physical restraints, but lack of help from family members, professionals and the community forces them to restrain their loved ones. Future research should explore the complex issue of culturally specific physical restraints decisions. Mental health nurses must receive education regarding the negative outcomes of the use of physical restraints for family members of people diagnosed with dementia. A more liberal approach to mental health and relevant legislation, which is an emerging global phenomenon that is currently in an early phase of development in China, grants human rights to people diagnosed with dementia. Effective communication and relationships between professionals and family caregivers can contribute to the establishment of a dementia-friendly community in China.

Associations Between Subacute Rehabilitation Experiences and Transitions into Long-Term Care

ABSTRACT Various characteristics and circumstances lead older adults in the community to transition into long-term care homes (LTCHs). Family caregivers often provide support, resources, and encouragement to older adults during the transition into a LTCH. Therefore, this study aimed to explore family caregiver perceptions of older adults’ sub-acute rehabilitation experiences that may associate with older adults’ transitions into LTCHs. A descriptive survey resulted in understanding circumstances that led to older adults’ transitions into the LTCH, and older adults with sub-acute rehabilitation experiences were positively associated with being more independently able to integrate into the LTCH. Future research directions and practical implications for healthcare professionals are further discussed.

Perceptions of Family Caregivers in the Caring for COVID-19 Patient: Self-Sacrificing Management, Fear, and Loneliness to Protect the Patient—A Qualitative Content Analysis

This study aimed to evaluate the perception of family caregivers in the care process of patients with COVID-19. This study was conducted on 19 family caregivers, who were selected using purposive sampling from 2021 to 2022. Unstructured interviews were used to collect data. The data were analyzed using the Kyngas conventional content analysis approach. The analysis of data led to three main themes, including unremitting efforts in physical care in the light of traditional medicine, accuracy, and intelligence in psychological attention and trying to maintain environmental health. According to the results, family caregivers provide high levels of self-sacrificing, continuous, and comprehensive, combined with fear and loneliness care in different dimensions with little or no support from the family, community, and health team.

Crianças e Adolescentes com Depressão: Percepção de Familiares Cuidadores

Abstract Depressive disorder affects people of all ages, including children and adolescents, compromising the family’s quality of life. This study aimed to: (1) analyze the perception of family members about the experience of living with and caring for children and adolescents with depressive disorder; (2) identify the resources mobilized by families to respond to the demands of child and adolescent depression. Data, collected by interviews with 26 family members of children/adolescents linked to two Care Centers, were subjected to thematic analysis. The results showed the perception of family caregivers regarding the depressive disorder, to the child and to family life, and suggest religiosity and the nuclear and extended families as resources they use the most. Therefore, there is a need for professionals to expand assistance to all those who live with children/adolescents with depression, since this disorder impacts family life.

End-of-life perspectives according to family caregivers of older adults with dementia: A qualitative study.

Family caregivers are primarily responsible for the care of older adults with dementia, and the demands of this care increase as the end of life approaches. Experiencing the end of a family member's life can be stressful, and caregivers consider important to know how to identify when their loved one is approaching the end of life in order to prepare for this moment. Thus, as the family is primarily responsible for the older adult with dementia, it is essential to know the meanings of the end of life attributed by family caregivers. To analyze the perceptions of family caregivers of older adults with dementia about the end of life. This is a qualitative, descriptive and exploratory study. The convenience sample consisted of family caregivers of older adults with dementia. The inclusion criteria were being a family member directly involved in the care of the older adult with dementia and being 18years of age or older. Data were collected from individual semi-structured interviews. The number of participants was defined during the interviews using the saturation criterion. Data were analyzed using the thematic analysis technique. A total of 63 family caregivers participated, 74.6% of whom were women, predominantly wives and daughters. Two themes resulted from the data analysis: (i) Different perspectives on the end of life: from death itself to a sad, painful and long grief process; and (ii) End of life in the perspective of transcendence. The meaning of the end of life was perceived in different ways by family caregivers. Understanding how they perceive and experience the end-of-life process of the older adult with dementia helps to clarify the best ways for the health professionals to approach and intervene with these families.

Assessing the Perception of Family and Caregivers' Experience with Mental Health and Substance Use Services.

Standardized client feedback surveys encourage a culture of continuous quality improvement, allow for comparison of results over time and across similar types of service providers, and encourage use of evidence-based practices. Recognizing the importance of family and other caregivers in supporting people accessing services for mental health and substance use challenges, a standardized perception-of-care tool (the Ontario Perception of Care Tool for Mental Health and Addictions, OPOC-MHA) was adapted to collect feedback specific to the caregiver experience with these services. A collaborative process engaged a broad range of mental health and/or addiction providers, family advisory networks, and family members and caregivers to identify themes, specific items, and implementation approaches. The final version of the tool evolved through an iterative process of pilot testing and stakeholder feedback. Family member and caregiver perceptions of care will identify service areas in need of improvement, contribute to quality improvement initiatives, and facilitate the comparison of findings over time.

Perceptions of Family Caregivers of Patients with Schizophrenia Towards Antipsychotics Associated Side-Effects in China:A Qualitative Study.

PurposeTo explore perceptions of antipsychotics associated side-effects among family caregivers of patients with schizophrenia.Patients and MethodsA descriptive qualitative study was applied in a tertiary referral hospital in China. Purposeful sampling of 18 family caregivers of patients with schizophrenia were interviewed about their perceptions towards antipsychotics related side effects.ResultsAccording to content analysis, three themes emerged from the data: (a) nightmare in the treatment with the categories of sleep disturbances; physical impairment; appearance impairment; (b) opposite attitudes toward side-effect with the categories of being vigilant; do not care; (c) diverse ways of coping side-effects with the categories of asking for help from professionals; self-determined; try any quack’s prescription.ConclusionThe side effects of antipsychotics not only damage the health of patients, but also increase the burden and stress of caregivers. However, caregivers have different attitudes and coping styles about the side effects of antipsychotics. Health professionals should be aware of the influence of individual background and cultural factors on caregivers’ attitudes towards drug side effects. Furthermore, health professionals should also provide caregivers with knowledge about drug side effects, coping skills, and appropriate management strategies to promote health outcomes for people with schizophrenia.

Mobile Videoconferencing for Occupational Therapists' Assessments of Patients' Home Environments Prior to Hospital Discharge: Mixed Methods Feasibility and Comparative Study.

BackgroundOccupational therapists who work in hospitals need to assess patients’ home environment in preparation for hospital discharge in order to provide recommendations (eg, technical aids) to support their independence and safety. Home visits increase performance in everyday activities and decrease the risk of falls; however, in some countries, home visits are rarely made prior to hospital discharge due to the cost and time involved. In most cases, occupational therapists rely on an interview with the patient or a caregiver to assess the home. The use of videoconferencing to assess patients’ home environments could be an innovative solution to allow better and more appropriate recommendations.ObjectiveThe aim of this study was (1) to explore the added value of using mobile videoconferencing compared with standard procedure only and (2) to document the clinical feasibility of using mobile videoconferencing to assess patients’ home environments.MethodsOccupational therapists assessed home environments using, first, the standard procedure (interview), and then, videoconferencing (with the help of a family caregiver located in patients’ homes, using an electronic tablet). We used a concurrent mixed methods design. The occupational therapist's responsiveness to telehealth, time spent on assessment, patient’s occupational performance and satisfaction, and major events influencing the variables were collected as quantitative data. The perceptions of occupational therapists and family caregivers regarding the added value of using this method and the nature of changes made to recommendations as a result of the videoconference (if any) were collected as qualitative data, using questionnaires and semistructured interviews.ResultsEight triads (6 occupational therapists, 8 patients, and 8 caregivers) participated. The use of mobile videoconferencing generally led occupational therapists to modify the initial intervention plan (produced after the standard interview). Occupational therapists and caregivers perceived benefits in using mobile videoconferencing (eg, the ability to provide real-time comments or feedback), and they also perceived disadvantages (eg, videoconferencing requires additional time and greater availability of caregivers). Some occupational therapists believed that mobile videoconferencing added value to assessments, while others did not.ConclusionsThe use of mobile videoconferencing in the context of hospital discharge planning has raised questions of clinical feasibility. Although mobile videoconferencing provides multiple benefits to hospital discharge, including more appropriate occupational therapist recommendations, time constraints made it more difficult to perceive the added value. However, with smartphone use, interdisciplinary team involvement, and patient participation in the videoconference visit, mobile videoconferencing can become an asset to hospital discharge planning.International Registered Report Identifier (IRRID)RR2-10.2196/11674

Physicians' perceptions of patient participation and the involvement of family caregivers in the palliative care pathway.

IntroductionPatient participation is essential for quality palliative care, and physicians play a crucial role in promoting participation. This study explores physicians' perceptions of patients and family caregivers' involvement in the different phases of the palliative pathway and employs a qualitative design with thematic analysis and a hermeneutic approach.MethodsA purposive sampling included physicians who worked in different phases of the palliative pathway. In‐depth, semi‐structured interviews were conducted with 13 physicians in Norway between May and June 2020.ResultsThree main themes illustrate physicians' perceptions of patients' and family caregivers' involvement: (1) beneficence for the patient and the family caregivers in the early phase, (2) autonomy and shared decision‐making in the middle phase, and (3) family involvement in the terminal phase.ConclusionThe physicians perceived bereavement conversations as essential, particularly if the pathway had been challenging. They also perceived patient participation and family caregivers' involvement as contextual. The results reveal that participation differs across the different phases of the palliative pathway. This type of knowledge should be included in the education of health‐care professionals. Future research should explore elements vital to successful patient participation and family involvement in the different phases of care.Patient or Public ContributionsFamily caregivers were involved in a previous study through individual interviews. The same interview guide used for the family caregivers was used when interviewing the physicians. The family caregivers' contribution led to nuanced questions in the interviews with the physicians, questions leaning on their stories told.

Substance Use in Relation to Mental Illness: A Study of Mexican-Origin Latinos with Schizophrenia and Their Family Members.

Little is known about family context and substance use behaviors among Latinos with schizophrenia. Learning about patient and family caregiver perceptions of use is critical to our understanding of how best to support these vulnerable patients and family caregivers. This study explored perceptions of substance use in relation to mental illness among Latinos primarily of Mexican origin with schizophrenia and their family caregivers. Semistructured interviews were conducted with 34 participants (20 family caregivers; 14 patients) with direct and indirect substance use experience, in their preferred language. Data were analyzed using thematic analysis, which consisted of comparing codes across and within patient and family caregiver transcripts. Findings revealed that substance use affected well-being, particularly patient recovery and caregiver burden. Strategies to address well-being included limiting substance use, being vigilant about patient use, and communicating the negative impact of use. The environmental impact and stigma of substance use were major contextual challenges. Patients addressed these by limiting their socialization. Family social context was important to how substance use was perceived and managed by patients and caregivers. As such, treatment models should consider a holistic perspective that incorporates family context when addressing substance use among Latinos with schizophrenia.

"Am I entitled to take a break in caregiving?": Perceptions of leisure activities of family caregivers of loved ones with dementia in China.

Leisure activities are essential for family caregivers of loved ones with dementia living in the community, yet these caregivers tend not to engage in them, especially in China, wherein it may have a negative impact on their physical and psychological health. To date, limited knowledge exists regarding underlying reasons that deter these family caregivers from doing leisure activities. This study aims to explore perceptions of family caregivers of people living with dementia and their engagement in leisure activities. A qualitative descriptive research design was used with semi-structured, face-to-face, individual in-depth interviews. The data were collected in Shijiazhuang, China between October and November 2019. Content analysis was used to develop categories. Results of 20 family caregivers (5 men and 15 women, mean age = 55.6±12.7) reported their perceptions under four main categories: (i) "the condition of leisure life," (ii) "needs for leisure activities," (iii) "reasons for the reluctance to do leisure activities," and (iv) "motivations supporting the implementation of leisure activities." In addition to the heavy caregiving workload and lack of support, traditional Chinese beliefs including filial commitment and "fatalistic voluntarism" were the reasons that prevented Chinese family caregivers of people living with dementia from doing leisure activities. However, engaging their loved ones in leisure activities, like doing exercise together, could motivate family caregivers themselves to participate in leisure activities. These findings encourage healthcare professionals to consider the influence of culture on family caregivers' engagement in leisure activities which is one of the ways to reduce stress. Family caregivers may benefit from the leisure activities by learning how to better cope with and balance caregiving tasks with their leisure pursuits in the community.