Qualitative research

Background: Primary hemophagocytic lymphohistiocytosis (pHLH) is a rare and life-threatening disorder, which usually occurs during infancy or early childhood and is characterized by abnormal activation of the immune system. However, the burden of pHLH on children and their families has not been previously evaluated.

Background: There is little evidence that outlines how family carers understand the person with dementia's perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire.

Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically.

Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts.

Background: Cancer affects not only the patient but also family members as informal caregivers. In order for family caregivers to achieve balance and improve their caregiving roles, it is essential to identify the beliefs and psychological aspects affecting them. Methods: The present study was carried out qualitatively with a descriptive phenomenological design in 2020. The main participants in this study were selected from one of the major referral centers for cancer patients in West Azerbaijan Province, located in northwestern, Iran.

Background: To enhance prevention and treatment of malnutrition in older adults before, during and after hospitalization, deeper understanding of older adults’ and informal caregivers’ perspective on nutritional care is important. Methods: One-time in-depth interviews were conducted with 15 older adults who had been discharged from hospital, and seven informal caregivers. We explored their experiences and needs regarding nutritional care provided in the periods before, during and after hospitalization.

Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions.

Purpose: This paper reports findings from a project that sought to develop accessible guidelines for including people with dementia in qualitative interviews in a music therapy study, based on experience from people previously involved in qualitative music therapy research. Method: People with previous experience of qualitative music therapy research were invited to participate in semi-structured interviews about how the interview process could be made more accessible. Participants included four family-caregivers and three music therapy-researchers.

Background: Considering the potential impacts of family caregivers on heart failure management and the costs of healthcare, health professionals need to pay attention to the challenges faced by family caregivers. Methods: This study longitudinally explored the caregiving experiences of family caregivers of persons with heart failure. Serial interview scripts collected from 53 family caregivers were analyzed using a content analysis method.

Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children.