Lay Caregivers Research Articles

Interviews With Lay Caregivers About Their Experiences Supporting Patients Throughout Kidney Transplantation.

Introduction: Lay caregivers provide essential support to patients throughout the kidney transplant process, pretransplant through discharge. Sparse data exists about kidney transplant caregiver experience and facilitators of caregiver engagement. The aim of this study was to explore and describe lay caregivers' accounts of supporting a patient before and early after kidney transplantation. Methods: Caregivers of recent kidney transplant recipients were individually interviewed about their experiences, coping strategies, and perspectives of center-specific support approaches for patients and caregivers in a single transplant center. Results: Inductive content analysis of transcribed interviews with 23 caregivers revealed 6 domain areas: visit preparation, initial evaluation, caregiver role discussion, exposure to support resources, transplant preparedness, and coping styles. Caregivers used and appreciated information offered by the transplant center, including materials directed to the patient. They recommended repeating information, online access, and adding video to complement print resources. They valued and requested information directed to them, both within passive materials and communication with providers. Social network interactions were helpful for practical, emotional, and informational support. Support group reminders and connection pathways to peers were suggested for both patients and caregivers. Conclusion: Findings highlight steps that can be taken by transplant centers and may stimulate caregiver engagement. Featuring caregiver-focused information and communication more prominently may support caregivers to improve patient progress in navigating kidney transplantation.

I Can’t Abandon My Father: Covid-19 and Lay Caregiving at the Crossroads in the Eastern Regional Hospital of Ghana.

Lay caregivers play very important roles in the care of sick relations. This primordial support appears to be universal but manifests itself in different ways and circumstances. Ghanaian public health institutions, especially, depend very much on lay caregivers in the management of in-patients. However, with the emergence of Covid-19, and the fear of nosocomial infections one expects less involvement of lay caregivers; looms large. This fear has been heightened by the presence of the deadly corona virus pandemic. In spite of the respectable volume of works on lay caregivers, there is dearth of literature on the factors that influence relations to provide care in the clinical set-up in spite of the care given by the professional cohort and the possible threats to health of lay caregivers. This is the classic case of a clash between health professionals and non-professionals in the performance of tasks with the same goal orientation: to assist the sick to get out of their sick role. This hospital ethnographic study which focused on the Koforidua Regional Hospital, explored the compelling socio-cultural factors that influence lay caregiving in the hospital environment. The study is especially relevant in the midst of the Covid-19 pandemic. The study involved interviews with patients in a medical ward, health professionals and lay caregivers in the regional hospital. The study revealed that lay caregivers, among other reasons, are influenced by socio-cultural factors such as reciprocity and kinship moral obligations, and the perceived poor attitude of the health staff towards patients. Institutionally, although the medical staff found lay involvement unwelcome, shortage of staff, the severity of a patient’s condition, and lack of certain facilities make lay involvement a ‘tolerated nuisance.’

Feasibility and Burden of Lay Caregivers Providing Daily Massages to Patients With Cancer Receiving Hospice and Palliative Care.

Professional massages reduce symptoms experienced by cancer patients, but are costly. A cost-effective way to include this therapy routinely in hospice care is to teach family caregivers to give massages as part of their caregiving activities. However, the burden on caregivers is unknown and might offset patient benefits or cost savings. The pilot study aim was to explore feasibility issues related to licensed massage therapists training caregivers to give massages at home, the burden of giving four daily massages to hospice patients, and feedback about the training and massage delivery. In this pretest/posttest study, caregivers completed the Caregiver Reaction Assessment (CRA), received training on standardized massage techniques from a licensed massage therapist who evaluated their proficiency the following day. Caregivers gave daily massages for 3 days and afterward completed the CRA. Then a researcher interviewed the dyad for feedback about the training and massage delivery. We used paired t tests to evaluate CRA scores and content analysis of interview data. Thirty-nine caregivers (mean age = 46years, 69% female) completed the study. After training, all but three caregivers provided daily massages. Some caregivers reported minor logistical challenges in massage delivery and documentation, mutual satisfaction, relaxation, and tender moments ranging from laughter and story sharing to closure activities. Mean CRA scores were not significantly different pretest to posttest. We conclude that repeated-dose massages by caregivers to patients dying of cancer is feasible and is worthy of further study to determine the benefits of massage therapy, caregiver and patient experiences, and caregiver burden.

The impact of caregiver stigma on real-life social experience of Taiwanese adolescents with autism spectrum disorder.

Caregivers of people with autism spectrum disorder commonly experience stigma. As a result, they may avoid contact with others, in turn, influencing their child's social participation. This study aimed to explore the impact of stigma perceived by the caregivers on the everyday social experience of Taiwanese adolescents with autism spectrum disorder. We asked 76 adolescents with autism spectrum disorder who did not have intellectual disability (69 males, aged 10-16 years) to carry a mobile device for 7 days. The device prompted them 7 times each day to record who they were interacting with, what they perceived, and how they felt about their social interactions. In addition, we asked their caregivers to complete the Affiliate Stigma Scale to measure their experience of stigma. We found that participants whose caregivers perceived high levels of stigma were more likely to spend time with family members and less likely to be interested in interacting with people at school. Those participants also were more likely to experience anxiety while interacting with family. Our study suggests that it is important for clinicians to implement support services for adolescents with autism spectrum disorder and help caregivers in managing stigma to promote their child's social participation.

Abstract 13892: Self-care is Poor in Lay Caregivers of Patients With Heart Failure, Especially If Caring More Than Eight Hours Daily

Introduction: Most patients with HF are living at home with care provided to them by loved ones. Informal caregiving is demanding and stressful, may exceed the caregiver’s ability to adapt, and many eventually become care recipients themselves. Engaging in self-care may improve caregivers’ health. Purpose: To describe the self-care behaviors of HF caregivers and compare self-care behaviors based on hours of daily caregiving. Methods: Using a cross-sectional design, we analyzed enrollment data from lay caregivers in the iCare4Me clinical trial testing the efficacy of a virtual support intervention promoting caregiver self-care. All caregivers were providing informal care to someone with HF for ≥ 8 hours/week. Self-care behaviors were measured with two instruments: Health Self-Care Neglect scale (9 dichotomous items summed for a final score) and the Self-Care Inventory (3 scales: Self-Care Maintenance, Monitoring, and Management with standardized scores 0-100; higher scores, better self-care). A Health Self-Care Neglect score ≥ 2 is considered poor self-care. A Self-Care inventory score < 70 is considered inadequate. Hours of caregiving were self-reported. Results: The sample (n=40) was mostly older adults (56 ± 13.2 years, female 97.5%) and many were Black (37.5%). Caregivers reported caregiving (10.8± 8.4 hours/day, range 1-24 hours/day). Differences in self-care were observed between those caregiving > 8 hours (n=18, 18.4 ± 6.6) vs. ≤ 8 hours/day (n=22, 4.6± 2.6). Mean Health Self-Care Neglect was higher in caregivers reporting ≥ 8 hours/day compared to < 8 hours (6.7 ± 2.0 vs. 4.9 ± 2.1, p=0.004). The most commonly neglected areas of self-care were “Put off recreational activities you enjoy” and “Taken medications improperly”. All Self-Care Inventory scale scores were inadequate (Maintenance 69.1 ± 17.1, Monitoring 63.7 ± 21.8, Management 58.2 ± 18.9). Those providing care for ≥ 8 hours/day reported significantly poorer Self-Care Maintenance (64.1 ± 11.7 vs. 73.9 ± 19.4, p=0.03). Conclusion: Self-care is poor in all the caregivers, but especially among those responsible for caregiving relatively more hours/day. Interventions to improve caregivers’ self-care are needed.

Lay Caregivers Education in Multicomponent Compression Bandaging in Obese Patients with Lower Limb Edema: A Case-Control Pilot Study.

Background: A report on the usefulness of the instruction of lay carers in multilayer short-stretch compression bandaging within the initial intensive phase physical treatment of mixed-etiology chronic lower limb edema. Methods and Results: In a group of adult obese patients (including 24 females) with venous insufficiency and chronic bilateral lower limb edema, and without a history of physical therapy, 20 (ambulatory managed) were bandaged once daily (four layers, short stretch with cotton tube, and foam padding underneath) for 3 weeks (Monday-Friday) by skilled physiotherapists, and in 20 cases (education group, EG), the patients' lay carers were educated by these physiotherapists according to the same regime during one session. The outcome measures included limb volume (the method of circumference measurement with a tape at 4 cm intervals) after 1, 3, and 6 months, the time to reach the maintenance phase, the frequency of complementary bandaging during this phase, and the sense of self-efficacy (General Self-Efficacy scale, GSEs). No significant differences were noted between the two groups in the baseline measurements of age, body mass, and limb volume. The carers were able to apply compression bandages in all cases during the observation period. The time to reach the maintenance phase was longer in EG (6 vs. 1 weeks; p < 0.001). A similar median reduction in edema volume was observed at the end of the bandaging period, which continued for 3 and 6 months. It was only in EG that further improvement between 1 and 3 months was observed (p = 0.008). All participants represented an equally high optimistic sense of personal competence (GSEs). Conclusions: The instruction of lay carers in bandaging may provide a simple clinically effective solution for lower limb edema management, thus lowering its costs.

Validity and Reliability of the Caregiver Contribution to Self-Care of Heart Failure Index Version 2.

Lay caregivers are important in contributing to self-care of patients with heart failure (HF). The Caregiver Contributions to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions, but after developing the Situation-Specific Theory of Caregiver Contributions to Heart Failure Self-Care, the CC-SCHFI needed updating to reflect the theory. The aim of this study was to test the psychometric characteristics of the CC-SCHFI 2 that measures caregiver contributions (CC) to HF self-care with 3 scales: CC to self-care maintenance, CC to symptom perception, and CC to self-care management. This is a cross-sectional study. We tested the CC-SCHFI 2 with confirmatory factor analysis, internal consistency, item-total correlations, and test-retest reliability. With the CC-SCHFI 2, we also administered the Self-Care of Heart Failure Index v.7.2 to patients and the Caregiver Contribution to Heart Failure Self-Care Scale to caregivers to assess concurrent validity. A sample of 277 caregivers was enrolled (mean [SD] age, 52.7 [14.9] years; 70.4% female). In confirmatory factor analysis, each CC-SCHFI 2 scale had supportive fit indices: comparative fit index ranged between 0.94 and 0.95, and root mean square error of approximation ranged between 0.05 and 0.07. Internal consistency of the 3 scales was evident with a Cronbach α between .81 and .83 and a global reliability index between 0.79 and 0.86. Item-total correlations were all greater than 0.30. In concurrent validity testing, there were significant correlations between the CC-SCHFI 2 and the Self-Care of Heart Failure Index v.7.2 and the Caregiver Contribution to Heart Failure Self-Care Scale. Test-retest reliability showed intraclass correlation coefficients between 0.72 and 0.91. Testing of the CC-SCHFI 2 supported validity and reliability, indicating that the instrument can be used in clinical practice and research to evaluate CC to the self-care of patients with HF.

A Stepped-Wedge Randomized Controlled Trial: Effects of eHealth Interventions for Pain Control Among Adults With Cancer in Hospice

ContextUnrelieved cancer pain at the end of life interferes with achieving patient-centered goals. ObjectiveTo compare effects of usual hospice care and PAINRelieveIt® on pain outcomes in patients and their lay caregivers. MethodsIn a five-step, stepped-wedge randomized, controlled study, 234 patients (49% male, 18% Hispanic, 51% racial minorities) and 231 lay caregivers (26% male, 20% Hispanic, 54% racial minorities) completed pre-pain/post-pain measures. They received usual hospice care with intervention components that included a summary of the patient's pain data, decision support for hospice nurses, and multimedia education tailored to the patient's and lay caregiver's misconceptions about pain. ResultsThe intervention effect on analgesic adherence (primary outcome) was not significant. Post-test worst pain intensity was significantly higher for the experimental group, but the difference (0.70; CI = [0.12, 1.27]) was not clinically meaningful. There was nearly universal availability of prescriptions for strong opioids and adjuvant analgesics for neuropathic pain in both groups. Lay caregivers' pain misconceptions (0-5 scale) were significantly lower in the experimental group than the usual care group (mean difference controlling for baseline is 0.38; CI = [0.08, 0.67]; P = 0.01). ConclusionThis randomized controlled trial was a negative trial for the primary study outcomes but positive for a secondary outcome. The trial is important for clearly demonstrating the feasibility of implementing the innovative set of interventions.

The Lived Experience of Lay Caregivers Caring for Persons with Dementia (P4.1-020)

The Lived Experience of Lay Caregivers Caring for Persons with Dementia (P4.1-020)

Amish and Mennonite Lay Caregivers' Experiences Using the B&amp;W Burdock Leaf Treatment on Burns and Wounds: A Qualitative Study

Amish and Mennonite Lay Caregivers' Experiences Using the B&amp;W Burdock Leaf Treatment on Burns and Wounds: A Qualitative Study

A Question of Accessibility: Understanding Lay Users Of Medical Devices

<i>A Question of Accessibility:</i> Understanding Lay Users Of Medical Devices

Lay caregivers’ perspectives on injecting subcutaneous medications at home

Most palliative care patients prefer to be cared for at home. While promoting quality of life for patients, this preference impacts on their caregivers. Lay caregivers in Australia can be required to deliver and adjust complex medication regimens.This study aimed to investigate caregivers' perceptions concerning the injection of subcutaneous medications. Fourteen caregivers were interviewed on two occasions, once during the caregiving phase and two months after bereavement. In the first interview, caregivers expressed anxieties associated with their ability to undertake the task of administering injections, including fears of overdosing their family member. In the bereavement interview caregivers reflected they were pleased they had contributed to the symptom relief of a family member and that although they would not necessarily volunteer to inject family members again, they were generally empowered by the experience. It is important for health professionals to support lay caregivers to successfully achieve their extended caregiving role.

Postavení laických pečovatelů v péči o seniory a nemocné

Jednou z cest zkvalitněni pece o seniory a nemocne lidi je prohloubeni spoluprace rodiny a služeb poskytovaných spolecnosti. Soucasný demografický vývoj nepřiznivě ovlivnil strukturu populace, respektive vzajemný poměr potencialnich pecujicich a osob vyžadujicich peci. Role laickeho rodinneho pecovatele ma vsak v tomto systemu nezastupitelne misto. Pece o seniory a nemocne je pro rodinne přislusniky casto vysilujici. Těm pecovatelům, kteři se vsak každodenně staraji o sveho blizkeho je třeba pomoci, neboť jen tak se mohou formovat pozitivni vazby v rodině založene na vzajemne lasce a uctě. Zdravotni sestra ci socialni pracovnik by proto měli rozpoznat problemy u laických pecovatelů a nabidnout jim pomoc. Respitni pece je jednim z mnoha řeseni a může pecovatelům podstatně pomoci a tim umožnit, aby nemocný mohl zůstat co nejdele ve znamem a blizkem domacim prostředi. Hovořime o tzv. peci o pecujici. Na zakladě empirických setřeni lze doložit, že u pecujicich, kteři dlouhodobě pecuji o sve rodinne přislusniky, se projevuje negativni efekt pecovani. Maji casto zdravotni potiže, problemy v oblasti psychickeho zdravi a v socialni oblasti. V zahranici se hodnocenim pecovatelske zatěže rodinných přislusniků zabývala již na pocatku 80. let minuleho stoleti řada výzkumných praci. Test uvedený v clanku je vhodný pro rodiny pecujici o nemocne seniory a jeho validita byla již ověřena.

Needs of Lay Caregivers of Bone Marrow Transplant Patients in Turkey

The purpose of this research was to identify the needs of lay caregivers of bone marrow transplant (BMT) patients throughout the BMT trajectory. The sample consisted of 58 lay caregivers of BMT patients (5 of which were inpatients) from the 4 BMT units in Ankara, Turkey. Data were collected through a demographic data form and the Psychological and Social Needs Scale. Data analysis was performed using SPSS 10.0 for Windows. Among the descriptive statistics, frequencies and percentages were used to define the characteristics of lay caregivers and responses related to information. Mean values, standard deviations, and the Pearson correlation coefficients were also calculated for the results of the subscales. Most of the lay caregivers were spouses. The rest were other family members: brother/sister, mother, son/daughter, or father. Only one lay caregiver was a friend. The most common type of BMT was autologous. Most of the surveys were completed by the lay caregivers whose patients had been out of the hospital for 100+ days after BMT. The lay caregivers were educated on the BMT process by various sources, and 67.24% of them expressed satisfaction with the information that they were given. A majority of them preferred face-to-face communication with a healthcare professional. The categories of the information provided were diagnosis and treatment, homecare after discharge, follow-ups and laboratory tests, and nutrition. They indicated a need for more information, particularly regarding homecare after discharge and diagnosis. Fear was the highest scoring psychological needs/problems of lay caregivers, whereas leisure activity deficit was highest among the social needs/problems. The information gathered from this study led us to reevaluate our healthcare services for both patients and lay caregivers to improve physical, psychological, and social aspects of the nursing care as a whole.

Identification and Validation of Competencies for Use in Objective Structured Clinical Examinations for Lay Caregivers

Cancer care has shifted from the traditional hospital to alternative settings, thus requiring lay individuals to assume increased direct care responsibility. Cooperative Care is an example of an alternative acute care delivery model where a family member or a friend is responsible for care previously provided by healthcare professionals. The success of alternative models is dependent on effective educational programs with clearly defined expectations and methods for evaluating caregiver competence. Objective structured clinical examinations (OSCEs) provide a standardized approach to evaluating caregiver performance in a simulated situation. The purpose of the first phase of this instrument development project was to identify and validate competencies for inclusion in OSCEs to be used with lay caregivers in preparation for Cooperative Care. The study included multiple methods of data collection: analysis of documents, viewing videos, observation with note taking, and a focus group session. All classes and materials provided for lay caregivers were reviewed. Core content domains and competencies were identified and used to develop OSCEs. A focus group of healthcare providers responsible for the education and care of patients and their caregivers validated the competencies embedded within the OSCEs. This study demonstrated the efficacy of the approach used for the identification and validation of competencies for lay caregivers.

Assessing Communication Competence in an Online Study: Toward Informing Subsequent Interventions Among Older Adults With Cancer, Their Lay Caregivers, and Peers

Employing quantitative and qualitative measures, online and paper versions, we tested Kreps's (1988) relational health communication model by examining relations among social support, communication competence, and perceived stress in a study of well-elders, elderly individuals with cancer, and their lay caregivers (N = 76). Grounding the qualitative part of the study in the narrative paradigm (Fisher, 1984), we used the critical incident technique (Flanagan, 1954) to collect participant narratives focusing on positive and negative expressions of social support. The results indicated partial support for the relational health communication model. In particular, participants who were more communicatively competent were found to have lower levels of perceived stress, and they were more satisfied with the support offered by members of their support network. In addition, the critical incidents revealed that participants received significantly more emotional and esteem support from their network than other social support types. Key limitations and future directions are also identified.

Quality of life assessment in patients undergoing head and neck surgery as evaluated by lay caregivers.

Rehabilitation following head and neck cancer surgery has steadily moved into the outpatient realm and become dependent on caregivers with no formal medical background (lay caregivers.) Satisfactory rehabilitation and quality of life (QOL) depend on successful relationships between patients and the lay caregivers. This study evaluates the QOL assessments of patients by themselves and their primary lay caregivers before head and neck surgery. Institutional Review Board-approved study using validated QOL assessment instrument. The preoperative QOL status in 50 patients undergoing extensive head and neck surgery was evaluated using the self-administered Medical Outcomes Survey Short Form 36 (SF-36). The patient's primary lay caregiver (spouse, child, or friend) completed a similar questionnaire evaluating the patient's status. Thirty-three (66%) questionnaires were returned. Twenty-five (50%) questionnaire sets were successfully completed by both parties and employable for comparison. Sixty percent of the caregivers were within the 90% confidence interval of the patient's assessment for six or more of the eight parameters evaluated by the SF-36. Likewise, caregiver assessments for specific parameters were consistently congruent with patient evaluation, except for the parameters of bodily pain and general health, for which caregivers demonstrated a trend for overrating pain and underestimating general health. Caregivers of the same generation as the patient demonstrated significantly higher congruence (P = .007). Similarly, a trend for higher congruence was noted in patients with recurrent disease. The importance of the lay caregiver has increased in the era of greater outpatient rehabilitation. This pilot study indicates that QOL assessment by lay caregivers may be examined with existing instruments and highlights QOL parameters critical to both the head and neck surgery patient and his or her primary lay caregiver.

Grandma Eats Like a Bird: Helping Caregivers Improve the Nutrition of Older Persons at Home

The United Nations has declared 1999 the International Year of Older Persons. As the global community ages, dietetics professionals can highlight their role in promoting good nutrition in the golden years. They also face the challenge of educating those providing nutrition assistance to their loved ones and neighbors who are aging but still living at home. Monitoring the nutrition status of older persons who live independently is important, because as many as two thirds of free-living elders consume inadequate diets ((1)Melnik T.A. Helferd S.J. Firmery L.A. Wales K.R. Screening elderly in the community the relationship between dietary adequacy and nutritional risk.J Am Diet Assoc. 1994; 94: 1425-1427Google Scholar). At the same time, “it is very difficult to get older people to recognize that their eating habits have changed or are suboptimal for their particular nutrition needs,” according to Jane V. White, PhD, RD, professor with the Graduate School of Medicine, Department of Family Practice, University of Tennessee, Knoxville. When older people fail to appreciate the changes in their own eating habits, it helps to have an alert family member or friend reaching out to intervene. Dietitians can help family and friends become part of an effective first line of defense against poor nutrition in older persons. Many sensory factors contribute to shifts in preferences and appetites of older persons, which, in turn, can affect nutrition status. White explains that sensory changes in older persons can occur as side effects of medications, but they may also happen naturally. This can make food taste hopelessly bland or unappetizingly strong. Changes in vision can cause food color to lose its intensity and become less visually appealing. Likewise, auditory impairment makes it difficult for older persons to hear the crispness or crunchiness of chewing. This loss compounds the frustration of compromised conversational skills and detracts from the appeal of healthful social dining. White suggests simple things a caregiver can do to “enhance the eating environment” of older persons. Adjust the seasoning of foods to spice up or tone down flavors. For those with failing vision, be sure the eating area is well lit. Also, select a plate with a simple pattern or solid color that will not obscure the food placed on it. Play upbeat, familiar music at a comfortable volume. Researchers have learned that the appetites of older persons increase when they listen to music from their youth at mealtime. Finally, introduce at-home caregivers to some of the food products available, such as flavor enhancers, texture modifiers, and supplements, that help older persons enjoy eating. Dental problems also plague the older population, which can make eating painful. Oral discomfort limits the frequency, quantity, and variety of foods eaten. Ask older people if they have seen a dentist, and offer to accompany them to the dental office. White points out that 2 major causes of involuntary weight loss in older persons are dental problems and depression, so alert caregivers to the twofold benefit of making older persons smile. White was instrumental in developing the DETERMINE Your Nutritional Health Checklist (Figure), a useful nutrition screening tool that can help caregivers spot nutrition problems in older persons. Former president of The American Dietetic Association Ronni Chernoff, PhD, RD, FADA, associate director of the Geriatric Research Education and Clinical Center, Central Arkansas Veterans’ Healthcare System, Little Rock, considers the evolution of the DETERMINE checklist: “The original intent was for it to be a public awareness tool that older people may be at nutritional risk.” So successful and so needed has the checklist proven that it has been adapted to the clinical setting. Chernoff supports the idea of widening its application by sending the checklist home with patients when they are discharged from the hospital, because dietetics professionals “need more creative and pragmatic ways to get information about patients.” Using DETERMINE can help lay caregivers know when to worry about changes in older persons’ dietary habits and can motivate them to seek a professional nutritionist's help. Lay caregivers provide an invaluable service to the older persons in their charge—and to the community. But they cannot do it alone. They need the support of dedicated dietetics professionals, who should be armed and ready with resources to assist them.

Psychological aspects of lay caregiving.

Caregiving is an extremely demanding task that frequently takes a toll on lay caregivers. Furthermore, the psychological aspects of caregiving are frequently overlooked. To study this issue, a nurse surveyor conducted an informal nonscientific survey of 68 lay caregivers over a 14-month period. An interview process was used to obtain information. Those who were surveyed identified depression, powerlessness, role strain, guilt, and grief as the psychological aspects most frequently related to the caregiving experience. This information can be used to initiate nursing care plans, assessments, and interventions. It is vital for the healthcare community to recognize the needs of lay caregivers. Training programs must be implemented and other support and resources should be available so that the needs and issues of lay caregivers can be dealt with effectively.