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Family care

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method.

Wed, 12/21/2022 - 10:14

Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Background: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. Objectives: To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings.

Fri, 09/02/2022 - 10:56

The Tele-STELLA protocol: Telehealth-based support for families living with later-stage Alzheimer's disease

Objectives: We aim to establish the feasibility and acceptability of the Tele-STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Methods: This is a multi-component, quasi-experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia.

Wed, 08/31/2022 - 21:10

Experiences of people with memory disorders and their spouse carers on influencing formal care: “They ask my wife questions that they should ask me”

Background: People with memory disorders often need care and help from family carers and health and social care providers. Due to the deterioration of cognitive capacity and language skills, they may be unable to convey their thoughts and care preferences to other people. As a result, their agency may become restricted. We investigated the descriptions provided by people with memory disorders and spousal carers of their influence on care in encounters with formal care providers.

Wed, 08/24/2022 - 12:53

Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals.

Mon, 08/22/2022 - 11:06

Understanding context: A qualitative analysis of the roles of family caregivers of people living with cancer in Vietnam and the implications for service development in low‐income settings

Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals.

Mon, 08/22/2022 - 11:06

Cancer Caregiving While Employed: Caregiving Roles, Employment Adjustments, Employer Assistance, and Preferences for Support

Background: Cancer patients commonly require assistance from a relative or friend, and many of these “family caregivers” are navigating employment while caring. Objectives: The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers’ roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support.

Wed, 08/03/2022 - 18:49

The Tele‐STELLA protocol: Telehealth‐based support for families living with later‐stage Alzheimer's disease

Aims: We aim to establish the feasibility and acceptability of the Tele‐STELLA (Support via Telehealth: Living and Learning with Advancing Alzheimer's Disease and Related Dementias) intervention. We will also assess the efficacy of the intervention in reducing the frequency of behavioural symptoms of dementia as well as family Care Partner reactivity to the symptoms. Design: This is a multi‐component, quasi‐experimental study that focuses on facilitating effective management of behavioural symptoms that occur in the later stages of dementia.

Wed, 06/29/2022 - 17:28

Impact of relative mental illness on caregivers

Introduction: Belarus is undergoing legislative shifts towards community-based mental health care. Responding effectively to support this process requires an understanding of the experiences and challenges facing families caring for a relative affected by mental illness. Objectives: To identify how caring for a person with severe mental illness impacts on family carers, and what carers identify as their support needs.

Sun, 06/05/2022 - 17:02

Illness as Experienced by Parents of Children With End-Stage Renal Disease: The "Ill Unit"

Objectives: The purpose of this study is to shed light on the experience of parents of children who suffer from various stages of renal failure. Methods: Semistructured qualitative interviews conducted with 12 parents were analyzed using the interpretative phenomenological analysis method. Findings: Eight themes were identified and organized into two superordinate themes: intrasubjective experience and intersubjective experience.

Sun, 06/05/2022 - 14:04

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