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Journal article

The challenges characterizing the lived experience of caregiving. A qualitative study in the field of spinal cord injury

Study design: Qualitative exploratory study. Objectives: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. Setting: Caregivers of people with SCI living in the community in Switzerland. Methods: Data were collected through semi-structured interviews. Thematic analysis was performed. Results: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years.

Thu, 01/27/2022 - 16:51

Central Vascular Access Device Complications in Pediatric Home Care Patients Managed by Family Caregivers or Nurses

Background: There is a paucity of data regarding complications and outcomes of central vascular access devices (CVADs) in pediatric home care patients. Unlike hospital and clinic settings, home care patients commonly receive catheter care and accesses by family caregivers rather than nurses. Design: This 2-year prospective study compared complications and outcomes of 222 CVADs managed by nurses or family caregivers.

Thu, 01/27/2022 - 15:51

“Caring for the Elderly is Very Difficult”: Challenges and Coping Strategies of Caregivers in Urban Poor Accra, Ghana

Background: This study is part of a broader phenomenological study on the experiences of family caregivers and their care recipients. There is a general paucity of research on the experiences of primary and secondary caregivers, and the negative impact of elderly care on caregivers in the urban poor settings in Ghana. This study explored primary and secondary caregivers’ challenges and coping strategies in the urban poor context in Accra, Ghana. Methods: This study was conducted in Ga Mashie. Thirty-one caregivers were interviewed.

Thu, 01/27/2022 - 15:29

Caring for People With Dementia Under COVID-19 Restrictions: A Pilot Study on Family Caregivers

Introduction: The present pilot study examined to what extent the COVID-19 lockdown affected the behavioral and psychological symptoms of dementia (BPSD) in people with dementia and worsened their family caregivers’ distress. The associations between changes in the BPSD of relatives with dementia (RwD) and in their caregivers’ distress, and sense of social and emotional loneliness, and resilience were also investigated.

Thu, 01/27/2022 - 14:22

Caring for Patients with Psychosis: Mental Health Professionals’ Views on Informal Caregivers’ Needs

Aims: The aim of this study was to explore the views of mental health professionals regarding the needs of the informal caregivers of patients with chronic psychotic syndrome. Design: A qualitative research design was used. The sample consisted of 12 mental health professionals selected by a purposive sampling strategy. Data were collected through semistructured, face to face interviews. Framework analysis was used to analyze qualitative data and establish main themes and subthemes.

Thu, 01/27/2022 - 14:12

Caring for patients with end‐stage renal disease during COVID‐19 lockdown: What (additional) challenges to family caregivers?

Introduction: Caring for a patient with end‐stage renal disease undergoing in‐centre haemodialysis can be a stressful experience, likely to involve significant burden. Within the context of the new coronavirus pandemic, these patients are highly vulnerable to infection by COVID‐19, which might increase the care demands and burden of family caregivers. Aim: This study aimed to explore the subjective experiences of family caregivers of non‐COVID‐19 patients with end‐stage renal disease undergoing in‐centre haemodialysis during the COVID‐19 lockdown.

Thu, 01/27/2022 - 14:03

Caring for patients at home after acute exacerbation of chronic obstructive pulmonary disease: A phenomenological study of family caregivers' experiences

Aims and objectives: To understand the experiences and support needs of informal caregivers of patients with chronic obstructive pulmonary diseases chronic obstructive pulmonary disease who return home following an acute exacerbation. Background: The presence of an informal caregiver is important to provide practical and emotional support after an episode of acute exacerbation of chronic obstructive pulmonary disease. However, caregiving in such circumstances can be challenging and stressful. Design: Phenomenology.

Thu, 01/27/2022 - 13:47

Caring for a child with Epidermolysis Bullosa: a scoping review on the family impacts and support needs

Aims: Epidermolysis Bullosa (EB) is a rare genetic disorder characterised by recurrent skin blistering. Wound care and nursing are critical to everyday lives of EB patients. The aim of this review was to identify the support needs of parents of a child with EB and to assess the impact EB has on the family unit, irrespective of subtype of condition severity.

Thu, 01/27/2022 - 12:36

Caring ahead: Mixed methods development of a questionnaire to measure caregiver preparedness for end-of-life with dementia

Background: Family caregivers of persons with dementia often feel unprepared for end-of-life and preparedness predicts caregiver outcomes in bereavement. Existing questionnaires assessing preparedness have limitations. A multi-dimensional questionnaire assessing family caregiver preparedness for the end-of-life of persons with dementia is needed to identify caregivers at risk for negative outcomes in bereavement and evaluate the quality of strategies within a palliative approach.

Thu, 01/27/2022 - 12:07