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“It’s Always Been a Second Class Cancer”: An Exploration of the Experiences and Journeys of Bereaved Family Carers of People with Sarcoma

Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement.

Mon, 06/06/2022 - 23:35

Informational Needs of the Families of Patients Discharged From Intensive Care Units: A Case of Iran

Background: thousands of patients are admitted to intensive care units annually, which is a stressful event. Many of these patients still require particular care after discharge. In many countries, families play an essential role in taking care of these patients after discharge. Objectives: This study aimed to determine the informational needs of families of patients discharged from Intensive Care Units (ICU), Kerman, southeast Iran. Methods: this study had a cross-sectional design.

Mon, 06/06/2022 - 16:26

Informal caregivers and persons with dementia’s everyday life coping

This qualitative study explores informal caregivers’ experiences of supporting persons with dementia’s everyday life coping. In the future, there will be fewer health personnel, increased dementia prevalence and limited nursing home availability. Accordingly, close relatives may be compelled to assume greater care responsibilities. Knowledge concerning persons with dementia’s everyday coping from the perspective of informal caregivers remains insufficient, despite these people’s importance for those with dementia.

Mon, 06/06/2022 - 11:57

Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study

Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake.

Wed, 06/01/2022 - 21:56

Gaining Experience Over Time: The Family Caregivers' Perception of Patients with a Tracheostomy in Home Care

Background: The transition of tracheostomy patients to the home poses many challenges for both the patient and the family. Identifying and understanding the experiences of family caregivers pave the road for discovering and meeting care needs. This study has been aimed to explain the experiences of family caregivers of patients with a tracheostomy about patient care at home. Materials and Methods: This qualitative study was conducted using a conventional content analysis approach from September 2018 to January 2019.

Wed, 06/01/2022 - 13:46

Family rules, routines, and caregiver distress during the first year of pediatric cancer treatment

Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic.

Mon, 05/30/2022 - 16:26

Family perspectives on the acceptability and usefulness of the FAB Positive Behaviour Support program: A pilot study

Purpose: This pilot feasibility study aimed to gain preliminary insight into the acceptability and usefulness of the FAB-PBS program for providing behavior support to families following acquired brain injury (ABI) in community settings. Background: The FAB-PBS program is based on a Positive Behavior Support (PBS) framework and principles of Family-Centered Care and Family-Directed Intervention. It consists of an education phase followed by individualized sessions during which the family is supported to develop and implement a PBS plan.

Mon, 05/30/2022 - 15:48

Family knowledge about the legal rights of children and adolescents with cancer

Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Methods: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data.

Mon, 05/30/2022 - 13:21

Family functionality and burden of family caregivers of users with mental disorders

Objective: to verify the difference of mean or median in the scores of family functionality and burden of family caregivers of people with mental disorders. Methods: cross-sectional study carried out in a Psychosocial Care Center with 61 family caregivers. Instruments were used for sociodemographic characterization, care process, Family Apgar Index and Family Burden Interview Schedule. Mean/median difference tests were adopted.

Mon, 05/30/2022 - 12:52

Family Function, Quality of Life, and Well-Being in Parents of Infants With Hypoplastic Left Heart Syndrome

Background: Survival for hypoplastic left heart syndrome (HLHS) has improved dramatically. Little is known about early family function, quality of life (QOL), or well-being/adjustment for parents of infants with HLHS. Methods: Parent/family outcomes over time, predictors, and differences in 143 mothers and 72 fathers were examined. Results: Parents reported better family function compared with published norms, but 26% experienced family dysfunction. QOL and well-being were significantly lower than adult norms.

Mon, 05/30/2022 - 12:42

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