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Qualitative research

Involvement of Jordanian Patients and Their Families in Decision Making Near End of Life, Challenges and Recommendations

Objectives: This study aims to explore the challenges in involving patients and their families in decision making near end of life and to provide recommendations to overcome these challenges. Methods: A qualitative descriptive phenomenological approach was used with a purposive sample of 8 patients, 7 family caregivers, 7 nurses, and 6 physicians from 2 institutions that provide palliative and end-of-life care services in Jordan. Data were collected using interviews with patients and family caregivers and focus group discussions with nurses and physicians.

Sat, 09/03/2022 - 11:51

Informal carers in Sweden – striving for partnership

Background: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure.

Sat, 09/03/2022 - 11:17

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

Family Caregiver and Provider Perspectives on Inclusive Care: Aligning Needs and Expectations

Background: Home-based and community-based health care for individuals with complex medical conditions is often provided by family caregivers. Yet caregivers often are not meaningfully included in interactions with clinical health care teams. Inclusive care means inviting the caregiver to participate in shared decision-making and treatment planning. For aging or medically vulnerable adults, caregiver inclusion is an important facet of patient-centered care.

Thu, 09/01/2022 - 20:23

Seeking healthcare services post-stroke: a qualitative descriptive study exploring family caregiver and stroke survivor perspectives in an asian setting

Objectives: Exploration of the healthcare journey post-stroke is incomplete without acknowledging the crucial role of family caregivers. With limited literature documenting the role of caregivers in the healthcare journey post-stroke, we aimed to describe the healthcare experiences of family caregivers and stroke survivors across different caregiver identities in Singapore. Methods: We conducted a qualitative descriptive study involving semi-structured interviews with transcripts analysed using thematic analysis.

Thu, 09/01/2022 - 17:05

Known by the Children’s Condition: Associative Stigma Among Family Carers of Children with Cerebral Palsy

Background: The experience of associative stigma (stigma that persons experience because they are associated with persons who belong to a stigmatized category in society) could have negative impacts on carers’ and children’s health and well-being. This descriptive qualitative study therefore focused on associative stigma among family carers of children with cerebral palsy (CP) in the Greater Accra Region of Ghana. Methods: Using the convenience sampling technique, sixty-one family carers were purposively recruited to participate in the study.

Thu, 09/01/2022 - 15:57

Identifying the needs of families of children with autism spectrum disorder from specialists and parents’ perspectives: A qualitative study

Background: Families face many challenges in caring for children with autism spectrum disorder (ASD) throughout their lives. Objectives: This study aimed to identify the needs of families of children with ASD from specialists and parents’ perspectives. Methods: Semi-structured, in-depth interviews were conducted with ASD specialists (n = 19) and parents of children with ASD (n = 23). Interviews were audio-recorded and transcribed verbatim. Qualitative analysis was conducted using a content analysis approach.

Thu, 09/01/2022 - 15:23

Hispanic Caregivers' experience of pediatric type 1 diabetes: A qualitative study

Background & Objective: It is widely recognized that Type 1 Diabetes (T1D) outcomes are worse among Hispanic children; however, little is published about the perspectives of these patients and their caregivers. Our intent was to characterize the lived experience of Hispanic caregivers of children with T1D, focusing on the role of language and culture and their perspectives on current medical care and alternative care models. We studied Hispanic caregivers of patients (age 2–17 years) with T1D of greater than 6 months' duration.

Wed, 08/31/2022 - 17:54

Enablers and barriers in hospital‐to‐home transitional care for stroke survivors and caregivers: A systematic review

Aims and objectives: To synthesise qualitative research evidence on the experience of stroke survivors and informal caregivers in hospital‐to‐home transitional care. Background: Due to a shortened hospital stay, stroke survivors/caregivers must take over complex care on discharge from hospital to home. Gaps in the literature warrant a meta‐synthesis of qualitative studies on perceived enablers and barriers during this crucial period.

Tue, 08/30/2022 - 16:07

Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care.

Tue, 08/23/2022 - 23:18

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