Caregiver perceptions of accomplishment from assisting people with multiple sclerosis

Objectives: Identify factors of informal caregivers, caregiving, and people with multiple sclerosis (MS) receiving assistance that are associated with perceptions of caregiver accomplishment. Methods: National data were collected in a telephone interview survey of 530 informal caregivers and analyzed using an ordered logistic regression model to identify factors associated with perceptions of caregiver accomplishment among 442 of these informal caregivers (caregivers providing all data in their survey responses needed for the regression model). Results: We found that age of the person with MS and duration of caregiving measured by the number of hours per week the caregiver assisted the person with MS were significantly linked to positive perceptions of accomplishment. Conversely, the caregiver’s perception that assisting the person with MS was emotionally draining, a spousal relationship, and caregiver education levels were significantly associated with negative perceptions of accomplishment. Conclusions: Health professionals treating people with MS and their caregivers should be sensitive to the impact caregiving has on the emotional needs of caregivers and to the unique support needs of spousal caregivers. Health practitioners also should be sensitive to the variety of benefit-finding themes expressed by caregivers to facilitate the caregivers’ efforts to discover gains in their experiences assisting people with MS, such as perceptions that caregiving provides a sense of accomplishment.

Implications for Rehabilitation

• Assistance from informal caregivers enables people with multiple sclerosis to remain in their homes as their functional dependence becomes more permanent and their need for personal assistance increases.

• Caregiver perceptions that assisting the person with multiple sclerosis was emotionally draining and a spousal relationship were significantly associated with negative perceptions of accomplishment.

• Health professionals who treat informal caregivers, as well as health professionals treating people with multiple sclerosis, should be sensitive to the impact care giving has on the emotional health of caregivers, especially spousal caregivers.

     

Health-related quality of life among informal caregivers assisting people with multiple sclerosis

Objective.?To identify factors affecting the health-related quality of life (HRQOL) of informal caregivers assisting people with (multiple sclerosis) MS who have greater functional impairment.

Methods.?Data were collected in a national survey of 530 people who provided informal care to people with MS. Multiple linear regression models analyzed these data.

Results.?Poorer overall health for the person with MS, stronger agreement by caregivers that care giving was burdensome or emotionally draining, and the caregiver's need for mental health counseling in the past 12 months were associated with lower mental dimensions of HRQOL for the informal caregiver. Greater caregiver satisfaction with the access the person with MS had to MS-focused care was associated with higher mental dimensions of HRQOL among caregivers.

Conclusions.?Increasing access to MS-focused care could improve not only the health of people with MS, but also improve the mental dimensions of caregiver HRQOL. Our findings highlight the importance of addressing the mental health needs of informal caregivers assisting people with MS.     

Development and testing of the theory of collaborative decision-making in nursing practice for triads

BACKGROUND: Although nurses depend heavily on informal family caregivers to provide care to clients and to be involved in care planning and decision-making, no nursing theories that include the client, the caregiver, and the nurse were available to guide collaborative care planning and decision-making. AIM: The purpose of this paper is to describe the construction and initial testing of the theory of collaborative decision-making in nursing practice for a triad. The theory represents an extension of Kim's theory of collaborative decision-making in nursing practice. Kim's theory was developed to describe and explain collaborative decision-making in a dyad (client and nurse). The inclusion of a third person (family caregiver) in the theory required the addition of concepts about the caregiver, coalition formation, and nurse and caregiver outcomes. The expansion of Kim's dyadic theory to a triadic theory was achieved by means of a modified version of the theory derivation process described by Walker and Avant. CONCLUSIONS: The theory of collaborative decision-making in nursing practice for a triad can be used to guide further research and clinical practice. The theory provides a framework for researchers who are interested in studying the effects of collaboration regarding decision-making among nurses, family caregivers, and clients. The initial testing of the new theory in home health care nursing revealed variety in the nature of the client-caregiver-nurse relationships, the many processes used by the nurses in proceeding with the home visits, a multitude of decisions considered and different collaborative, noncollaborative, and coalition-forming interactions. The limited evidence of the empirical adequacy of the theory precludes development of definitive guidelines for clinical practice at this time. More studies are required before clinical practice guidelines can be developed.     

Dealing With the Unthinkable: Bladder and Colorectal Cancer Patients’ and Informal Caregivers’ Unmet Needs and Challenges in Life After Ostomies

ObjectivesWe examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience.Data SourcesA total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs.ResultsPatients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies.ConclusionMeeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment.Implications for Nursing PracticeAn effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.     

Quality of elderly-patient care: An interrupted time series study

This study is part of a project that aimed to increase the participation of informal caregivers in the hospital care for elderly patients. The staff who worked in the wards that were studied created activity programmes for caregivers and changed their ward policies to encourage the participation of the caregivers. In addition, quality assurance programmes were developed and primary nursing was introduced to ensure individualized, need-based and family centred care. In order to explore the changes in perceived quality of care, and to test the differences in care quality between the study and the control wards (i.e. two wards in a university hospital, two wards in a geriatric unit and two wards of a nursing home), the interrupted time series with a non-equivalent control group time series design was used. During periods of 2 months in 1991, 1992 and 1993 the data were collected from elderly patients ( n = 97) and their informal caregivers ( n = 369) using a structured questionnaire based on need theories. The results indicated that the quality of care was improved, especially in the study wards of the university hospital and of the nursing home. This care quality measure was found to be a useful tool for getting feedback from patients and their caregivers concerning care given. Aspects of nursing practice that needed to be improved were identified (i.e. poor communication between the patient, their caregiver and staff, and lack of support to the patient and caregiver by staff).     

Caregivers of persons with a brain tumor: a conceptual model

Researchers have documented negative physical and emotional consequences for both family caregivers of persons with cancer as well as caregivers of persons with a neurologic disorder. However, there is a unique subset of caregivers who must provide care for someone who may suffer from both a short, terminal trajectory of disease, as well as neurological and neuropsychiatric sequelae - the caregiver of a person with a primary malignant brain tumor. The purpose of this article was to describe a conceptual framework for providing care for a person with a primary malignant brain tumor. The demands of this particular care situation are described, as well as potential resources available to the caregiver to meet those demands. Finally, the stress response that results from the balance between care demands and caregiver resources is illustrated. Development of a conceptual framework for this caregiving population is the first step in assisting nurses to identify factors that place caregivers of persons with a primary malignant brain tumor at risk for negative consequences, and to design interventions to improve caregiver health.     

Home caregivers of the person with advanced cancer: an Australian perspective

Australian palliative care services are predominantly community based, with an emphasis on enabling the person to live at home for as long as possible. Home care of the person with advanced cancer receiving palliative care in the community depends largely on the availability of a family caregiver. Family caregivers are required to assess, monitor, and deliver complex therapeutic interventions such as pain and symptom control, including the administration and adjustment of complex medication regimens. This article reports a study of 42 family caregivers providing home care to persons with advanced cancer. This study sought to describe a number of caregiver variables that may influence reactions to caring roles and caregiver well-being. The study found that family caregivers are significantly involved in symptom management, and that they take on almost total responsibility for routine household tasks. In addition, the caregiver role has a negative impact on caregiver health, schedule, anxiety, and energy. However, caregivers find significant meaning in their role and feel relatively well prepared for caregiving. The results of this study support the applicability of the vast international literature on caregiver issues for the Australian setting and suggest the need to move toward development of caregiver-focused nursing interventions.     

Caregiver Reactions to Dementia Symptoms: Effects on Coping Repertoire and Mental Health

ABSTRACT

Currently, 15 million informal caregivers, most of whom are women, provide care for older adults with dementia (Alzheimer's Disease Association, 2016). Caregiving for these individuals often creates distress and may adversely affect female caregivers' psychosocial and spiritual well-being. Approximately 35% of dementia caregivers complain of health deterioration after initiating caregiving responsibilities as compared to 19% of caregivers of older adults who do not have dementia (Alzheimer's Disease Association, 2016). Persons with dementia exhibit symptoms and behaviors that often are challenging for their caregivers. The way that caregivers react to these symptoms and behaviors may affect their coping repertoire and their mental health. Adequate evaluation of caregiver reactions to symptoms of dementia will provide information useful for developing targeted interventions to promote optimal health of female dementia caregivers and to potentially postpone the need for nursing home or long-term placement of the care recipient.     

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 - 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Qualitative study of challenges of caring for a person with heart failure

Heart failure (HF) is a chronic health condition that causes significant morbidity among older adults, many of whom receive support and care from an informal caregiver. Caregiving is a difficult role with many responsibilities and challenges. An in-depth understanding of these challenges is necessary to develop services, resources, and interventions for HF caregivers. The goal of this study was to qualitatively ascertain the most significant challenges facing HF caregivers. We conducted semi-structured interviews with 16 caregivers of a person with HF (PHF). Content analysis revealed challenges rooted within the PHF (negative affect, resistant behavior, independence, and illness) Caregiver (balancing employment, lack of support, time, and caregiver health) and Relational level (PHF/caregiver dyadic relationship and other relationships). These findings can be used to inform interventions and support services for HF caregivers.     

Informal care providers for veterans with SCI: who are they and how are they doing?

Veterans with spinal cord injury (SCI) who received care at the Houston Department of Veterans Affairs Medical Center were interviewed about their use of formal and informal assistance to meet their daily physical needs. Informal caregivers were found to play an important role in the daily care of veterans with SCI, with 37% receiving some informal, unpaid assistance-with personal care. Primary informal caregivers were mostly women, had a mean age of 53, and provided an average of almost 12 hours of care a day. Nearly one-third of participants rated their primary caregiver as being only in fair or poor health, and one-fourth thought their caregiver was unlikely to be able to provide the same level of care 5 years from now. Of particular concern, more than half reported that they did not have anyone else willing and able to provide assistance if their primary family caregiver became permanently unable to care for them.     

Giving voice to informal caregivers of older adults.

This study focused on the experiences of informal caregivers of older adults and explored whether employment, use of home-care services, or other factors influence the health of caregivers and their ability to manage their caregiving and other responsibilities. Focus groups conducted with 26 caregivers and personal interviews with 4 caregivers identified 12 themes under 5 conceptual areas: caregiver health, relationships, independence, employment, and use of home-care services. The findings reveal that caregiving coupled with other responsibilities can have serious health effects. Participants spoke of the tenuous balance of decision-making control between caregiver and care recipient. Many caregivers expressed a desire to be included as part of the formal health-care team. Implications for nursing are discussed.     

Classification tree model identifies home-based service needs of Japanese long-term care insurance consumers

ABSTRACT Objectives: To clarify care receivers' needs and unmet needs for home help or home nursing services during daytime and/or nighttime hours, and to identify the characteristic of elders who are most likely to need home care services. Design and Sample: We used a chi‐squared automatic interaction detection technique to analyze data from 92 care management researchers, who interviewed 280 caregivers. Measures: Demographic information, assessments of the statuses and service needs of elders. Results: We found that care receivers had more unmet needs at night than during the day. Daytime home help was needed by elders who (1) lived alone or (2) lived with just one person and whose primary caregiver was not their wife. Nighttime home help was needed by those who required assistance eating, and whose primary caregiver was male. Daytime home nursing was needed by elders who (1) received medical treatment instead of day care or (2) did not receive medical treatment, but had difficulty eating. Nighttime home nursing was needed by those who had unstable illnesses and whose medical treatments continued during the night. Conclusions: Our findings may help public health nurses assess community needs in order to effectively and efficiently manage health care resources.     

Promoting participation of informal caregivers in the hospital care of the elderly patient: informal caregivers' perceptions

A study to identify informal caregivers' perceptions of factors promoting or inhibiting their participation in the care of elderly patients was conducted An open-ended questionnaire was completed by 369 informal caregivers during 2-month periods in late 1991,1992 and 1993 Several factors related to the patient, informal caregiver, nurse and environment were identified The findings and implications for nursing are discussed The data presented here are from a larger study which is reported in earlier issues of the Journal of Advanced Nursing     

Efecto del programa Plan de egreso en la díada persona con enfermedad crónica y sus cuidadores familiares

Objective

To determine the effect of the programme Hospitalisation discharge plan for patients with chronic diseases and family caregivers to strengthen their home care competence –CUIDAR– and reduce the caregiver burden.

Caregiver strain and factors associated with caregiver self-efficacy and quality of life in a community cohort with multiple sclerosis

Purpose. To describe the level of caregiver strain and factors associated with caregiver self-efficacy and quality of life (QoL) in a community cohort with multiple sclerosis (MS).

Method. A cross-sectional survey of 62 informal caregivers and 101 participants with confirmed MS and quantified physical and cognitive disability recruited from a tertiary hospital MS database. Structured interviews conducted at home using standardized assessments to measure: (i) Caregiver strain and subjective burden of care; (ii) participant with MS and caregiver QoL and self-efficacy; and (iii) participant with MS level of depression, anxiety and stress.

Results. The mean caregiver age was 54 years (range 37 – 62). The mean caregiver strain score was 5.63 (SD 3.63). Twenty-six of 62 (42%) caregivers reported strain for items such as emotional adjustments, demands on time, change in personal plan and disrupted sleep. Caregiver burden was higher in those caring for the more severely affected persons with MS, especially those with higher depression, anxiety and stress levels. The caregiver strain correlated with a lower QoL in both the person with MS and their caregiver, but not with their self-efficacy scores.

Conclusion. Caregivers of persons with MS reporting high levels of caregiver strain experienced a lower QoL and were caring for persons with MS with a lower QoL and higher levels of depression and anxiety. Interventions to reduce caregiver strain and burden in those at risk are necessary to reduce poor outcomes among both caregivers and care recipients with MS.     

Informal caregivers of persons with dementia,their use of and needs for specific professional support: a survey of the National Dementia Programme

Background  

This paper describes both the use of and needs for informal caregivers of people with dementia, based on a questionnaire survey organized within the National Dementia Programme in the Netherlands. The National Dementia Programme is a quality collaborative of the Dutch Alzheimer's Association, the Institute of Quality of Healthcare (CBO) and the Knowledge Centre on Ageing (Vilans), instigated by the Ministry of Health, Welfare and Sport, to improve integrated care for people with dementia and their informal caregivers. The support needs of informal caregivers are important to improve caregiver well-being and delaying institutionalization of the person with dementia.     

Caregiving stress among community caregivers for the elderly: does institutionalization make a difference?

Nurses in community settings are frequently exposed to elderly persons who receive a significant amount of physical and/or psychosocial support from one or more informal caregivers. Although numerous investigations exist examining stress and coping in persons who provide such care for elderly persons, little is known about the caregiver's status once full-time caregiving ceases. This study describes emotional and physical components of caregiving stress in a convenience sample of 124 caregivers. Of these, 31 had placed their charge in a nursing home, while 93 had not. A multivariate analysis of variance (MANOVA) between placed-nonplaced groups revealed no significant differences in the total score or Role and Personal Strain subscales of the Burden Interview (J. Zarit & S. Zarit, 1983). Implications for community health nursing practice involve providing ongoing counseling and support of the caregiver and his or her charge, preparing both for the placement experience should it be indicated, and continued follow-up care post-placement. Greater collaboration between community-based and institutionally based nurses can facilitate implementation of these strategies.     

Female caregivers' perceptions of reasons for violent behaviour among nursing home residents

Threats and violence against professional caregivers present a growing health and safety problem in elderly care. We aimed to explore female caregivers' perceptions of reasons for violent behaviour among nursing home residents. Forty-one caregivers at three nursing homes were interviewed and their responses were subjected to qualitative content analysis, which revealed three content areas of perceived reasons for patient violence: patient characteristics, caregiver approach and environmental aspects. The caregivers' perceptions were formulated in three core statements: 'they (the residents) are not who they used to be', 'we (the caregivers) have acted inappropriately' and 'we (residents and caregivers) are all surrounded by disorder'. Our findings indicate that the reasons for violence are complex and multifactorial, so interventions should be individually tailored. Caregivers involved in a violent situation need to see the person behind the behaviour, try to interpret what the behaviour is meant to communicate and adjust the intervention according to individual need.