Qualitative research

Background: Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.

Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity-a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning.

In recent decades, there has been a shift from hospitalisation to home care throughout the Western world, even for children. Hospital‐at‐home for children is in a developmental phase and represents a new service model in Norway. The aim of this pilot study conducted in a Norwegian healthcare setting was to explore how parents with a sick child experienced early hospital discharge and further care at home. The qualitative data are drawn from nine interviews with parents with a child admitted to hospital‐at‐home.

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.

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.

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.

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.

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.

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.

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.