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Journal article

"I was always struggling": Caregivers' experiences of transitioning a child from oral to long‐term non‐oral feeding at an out‐patient hospital clinic in South Africa

Background: As the prevalence of paediatric dysphagia increases, the need for long‐term non‐oral feeding has also increased. Despite these developments, little is known about caregiver experiences of transitioning a child onto long‐term non‐oral feeds, and the factors which influence the process of decision‐making and the provision of consent to do so. This paper aims to explore these factors. Methods: Semi‐structured interviews were conducted with nine participants recruited from the multidisciplinary out‐patient non‐oral feeding clinic at a hospital.

Fri, 06/03/2022 - 18:06

'I want to make myself useful': the value of nature-based adult day services in urban areas for people with dementia and their family carers

Background: Nature-based adult day services (ADSs) in urban areas are relatively new services in the Netherlands. Since knowledge about these services is still scarce, this study aimed to elucidate their value for people with dementia and their family carers in terms of health and wellbeing. Methods: We interviewed 39 people with dementia attending nature-based ADSs in urban areas and their family carers, and 17 providers of these services.

Fri, 06/03/2022 - 17:59

'I try my best ... I try to relieve the burden of my mum': a narrative analysis of the everyday care-giving experiences for five intergenerational Singapore-Chinese families where one member has dementia

Background: Singapore is experiencing a rapid growth in its ageing population with most of the islands' inhabitants living in high-rise apartments due to the scarcity of land. The Chinese community living in Singapore comprises the largest ethnic group and they are more likely to live together under one roof in an intergenerational family grouping. Currently, there are gaps in understanding intergenerational Singapore-Chinese families and their approach to caring at home for a family member with dementia.

Fri, 06/03/2022 - 17:48

I heard it on the radio: supporting Pacific family carers through the development of culturally appropriate resources, a descriptive qualitative study

Background: New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Objectives: Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs.

Fri, 06/03/2022 - 17:41

"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme.

Fri, 06/03/2022 - 17:34

“I Could Not Manage This Long-Term, Absolutely Not.” Aging in Place, Informal Care, COVID-19, and the Neighborhood in Flanders (Belgium)

Background: Public health and care policies across OECD (Organisation for Economic Co-operation and Development) countries increasingly encourage aging in place, enabled by both formal care networks, and informal (family) care and social solidarity in the neighborhood. However, little is known about how a person’s neighborhood might affect their aging in place. The COVID-19 crisis unintendedly offered a good opportunity to observe the neighborhood’s role in the provision of care.

Fri, 06/03/2022 - 17:25

“I can’t live like that”: the experience of caregiver stress of caring for a relative with substance use disorder

Background: The impact of addiction extends beyond the individual using a substance. Caring for an individual with addiction creates persistent stressful circumstances that cause worry, anger, depression, shame, guilt, anxiety, and behavioral problems within the family unit. The aim of the study: The paper aims to explore the experiences of caring for a relative with a substance use disorder (SUD) and self-care strategies caregivers employ. Methods: The study adopted an exploratory qualitative design.

Fri, 06/03/2022 - 16:53

"I Am a Caregiver": Sense-making and Identity Construction through Online Caregiving Narratives

Background: The all-consuming role and responsibilities of providing care to an aging parent or spouse create identity disruption and stress. However, this stress may be resolved as family caregivers integrate the role of caregiver into their identity and construct an aspect of their identity around providing care (i.e., caregiver identity).

Fri, 06/03/2022 - 16:39

How treatment burden affects the carer: the experiences of three individuals, a mother, a daughter and a husband

This piece will focus on how the burden of treatment can affect not only the person with a condition, but also those who care for them.

Fri, 06/03/2022 - 15:51

How Transitions in Dementia Care Trajectories Affect Health Problems in Partners: A Longitudinal Analysis With Linked Health and Administrative Data

Objectives: To evaluate whether the prevalence of health problems in cohabiting partners of people with dementia differs between the year before and the year after 3 transitions: the diagnosis of dementia, institutionalization, and the death of the person with dementia. Methods: Individuals with dementia and their partners were identified on the basis of data in the electronic health records (EHRs) of 451 Dutch general practices.

Fri, 06/03/2022 - 15:44