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Profiles of eHealth Adoption in Persons with Multiple Sclerosis and Their Caregivers

Background: Persons with multiple sclerosis (pwMS) are often characterized as ideal adopters of new digital healthcare trends, but it is worth thinking about whether and which pwMS will be targeted and served by a particular eHealth service like a patient portal. With our study, we wanted to explore needs and barriers for subgroups of pwMS and their caregivers when interacting with eHealth services in care and daily living.

Sun, 06/12/2022 - 22:01

Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers

Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically.

Sat, 06/11/2022 - 11:11

Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia

Background: Because of an often complicated and difficult-to-access care system, help-seeking for people with suspected dementia can be stressful. Difficulty in help-seeking may contribute to carer burden, in addition to other known stressors in dementia care. Objectives: This study examined the relationship between perceived help-seeking difficulty and carer burden, and the barriers contributing to perceived difficulty.

Sat, 06/11/2022 - 11:00

Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life: A Multimodal Study on the Experiences of Patients and Family Caregivers

Background: Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity.

Fri, 06/10/2022 - 11:59

The Role of Advance Care Planning in Cancer Patient and Caregiver Grief Resolution: Helpful or Harmful?

Background: Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers.

Thu, 06/09/2022 - 19:46

The Perceptions of Nurses and Nursing Students Regarding Family Involvement in the Care of Hospitalized Adult Patients

Background: Over the past few decades, there have been concerns regarding the humanization of healthcare and the involvement of family members in patients' hospital care. The attitudes of hospitals toward welcoming families in this respect have improved. In Arab culture, the main core of society is considered to be the family, not the individual. Objectives: The objective behind involving family in patient care is to meet patients' support needs.

Thu, 06/09/2022 - 16:16

A Nurse-Led Education Program for Pneumoconiosis Caregivers at the Community Level

Background: Pneumoconiosis is an irreversible chronic disease. With functional limitations and an inability to work, pneumoconiosis patients require support from family caregivers. However, the needs of pneumoconiosis caregivers have been neglected. Objectives & Methods: This study aimed to evaluate the effectiveness of a nurse-led education program, which involved four weekly 90-min workshops led by an experienced nurse and guided by Orem’s self-care deficit theory. A single-group, repeated-measure study design was adopted.

Thu, 06/09/2022 - 12:38

Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review

Background: In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. Methods: The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis.

Thu, 06/09/2022 - 11:06

Making the Invisible Companion of People with Dementia Visible in Economic Studies: What Can We Learn from Social Science?

The dyadic perspective is important to understand the mutual influence and interdependence of both the person living with dementia and their care partner. This perspective is routinely adopted in social research programs for dementia and many dyadic interventions have been developed. However, economic evaluation and modelling to date has often failed to incorporate caregivers’ perspectives, and their respective costs and outcomes while giving care for the person with dementia.

Wed, 06/08/2022 - 13:00

Living with Long Term Conditions from the Perspective of Family Caregivers. A Scoping Review and Narrative Synthesis

Background: When living with one or more long term conditions (LTCs), both the patient and the family experience the impact of the condition at different levels. The family’s needs and perceptions should be considered in the process of caring for people with LTCs. The aim of this review is to understand “the process of living with LTCs” from a family perspective.

Wed, 06/08/2022 - 12:16

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