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Evaluating strategies to manage and endure challenging behaviors in mucopolysaccharidoses

The mucopolysaccharidoses (MPS) are a group of rare, genetic, lysosomal storage disorders characterized by progressive, multisystemic accumulation of glycosaminoglycans. Individuals with severe MPS often present with significant neurological involvement and may exhibit challenging behaviors, including hyperactivity, aggression, and sleep disturbance. These behaviors can cause adverse outcomes and necessitate the development of specific measures to support affected families. Through an analysis of the results reported by Hoffmann et al.

Tue, 02/22/2022 - 18:39

Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life.

Tue, 02/22/2022 - 12:31

Eldercare in Transnational Families and the Swiss Immigration Regime

International migration research increasingly addresses the complex mobility that occurs in transnational contexts. Authors who study ties between migrants and their parents often focus on money transfers and financial investments. However, exchanges within transnational families are broader and multifaceted, and include an important care dimension that is shaped by gendered and cultural social codes. Studies show that women are often engaged in caring for their older parents even from a great distance.

Mon, 02/14/2022 - 20:27

Effects of an attachment-based parent intervention on mothers of children with autism spectrum disorder: preliminary findings from a non-randomized controlled trial

Background: Caregivers of children with autism spectrum disorders (ASD) often experience difficulties in responding appropriately to the needs of those children, who typically express attachment in distinct and nonconventional ways. This highlights the need for an attachment-based approach targeted at caregivers of children with ASD. Circle of Security Parenting (COSP), an attachment-based parenting program, is designed to increase caregivers’ sensitivity to children’s attachment needs.

Sat, 02/12/2022 - 17:16

Effectiveness of an integrated multidisciplinary geriatric rehabilitation programme for older persons with stroke: a multicentre randomised controlled trial

Background: Almost half of the stroke patients admitted to geriatric rehabilitation has persisting problems after discharge. Currently, there is no evidence based geriatric rehabilitation programme available for older stroke patients, combining inpatient rehabilitation with adequate ambulatory aftercare in the community. Therefore, we developed an integrated multidisciplinary rehabilitation programme that includes aftercare for older persons with stroke. We evaluated the effectiveness of this newly developed rehabilitation programme in comparison to usual care.

Fri, 02/11/2022 - 10:42

Effectiveness of a digitally supported care management programme to reduce unmet needs of family caregivers of people with dementia: study protocol for a cluster randomised controlled trial (GAIN)

Background: Up to two-thirds of dementia care is provided by family caregivers who often experience high burden, little support and adverse health outcomes. Enabling and supporting family caregivers to provide care at home prevents early institutionalisation of the person with dementia and alleviates the economic burden of dementia in the long term. General practitioners (GPs), as the first point of contact, have a key role in identifying and managing burden and care needs of family caregivers.

Thu, 02/10/2022 - 18:09

The effect of socioeconomic status on informal caregiving for parents among adult married females: evidence from China

Background: Married female caregivers face a higher risk of an informal care burden than other caregivers. No study has explored the effect of socioeconomic status (SES) on the intensity of informal care provided by married female caregivers in China. The purpose of this study is to empirically examine how the SES of married female caregivers affects the intensity of the informal care they provide for their parents/parents-in-law in China. Methods: The data for this study were drawn from 8 waves of the China Health and Nutrition Survey (CHNS).

Thu, 02/10/2022 - 17:37

Effect of handholding on heart rate variability in both patients with cancer and their family caregivers: a randomized crossover study

Background: Many family caregivers of patients with cancer feel guilty about self-care. A meaningful relationship with patients reduces such negative feelings and functions as self-care for family caregivers. Moreover, handholding improves autonomic functions in non-cancer patients. However, the effects of handholding on both patients with cancer and family caregivers remain unknown. Methods: We evaluated the effects of handholding on heart rate variability (HRV) in patients with cancer and their family caregivers.

Thu, 02/10/2022 - 16:16

The effect of a multimodal comprehensive care methodology for family caregivers of people with dementia

Background: Caregivers experience social, physical and psychological burdens in caring for people with dementia. A study was conducted to assess the efficacy of a multimodal comprehensive care methodology training programme for the family caregivers of people with dementia. Methods: This research was an intervention trial with a quasi-experimental design.

Thu, 02/10/2022 - 15:08

Economic Distress in Families with a Member Suffering from Severe Mental Illness: Illness Burden or Financial Crisis? Evidence from Greece

Objectives: The present study aims to explore the economic distress and pertinent coping strategies in families with a member suffering from a severe mental illness. Furthermore it endeavors to gauge the impact of illness burden and that of the Greek recession on economic distress, while disentangling their contribution. Methods: In total, 190 key relatives of people with severe mental illness were recruited from community mental health services in the region of Attica.

Thu, 02/10/2022 - 14:50

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