Dataset Information

Experiencing the care of a family member with Crohn's disease: a qualitative study.

ABSTRACT: OBJECTIVES:To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support. DESIGN:A qualitative study based on a phenomenological approach was conducted through in-depth interviews. SETTING:Participants living in Alicante (Spain) were recruited PARTICIPANTS: Eleven family caregivers of people with CD were interviewed. METHODS:The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis. RESULTS:Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life. CONCLUSION:The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

SUBMITTER: Garcia-Sanjuan S

PROVIDER: S-EPMC6830586 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Experiencing the care of a family member with Crohn's disease: a qualitative study.

García-Sanjuán Sofía S Lillo-Crespo Manuel M Cabañero-Martínez María José MJ Richart-Martínez Miguel M Sanjuan-Quiles Ángela Á

BMJ open 20191022 10

<h4>Objectives</h4>To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.<h4>Design</h4>A qualitative study based on a phenomenological approach was conducted through in-depth interviews.<h4>Setting</h4>Participants living in Alicante (Spain) were recruited PARTICIPANTS: Eleven family caregivers of people with CD were interviewed.<h4>Methods</h4>The in-depth interviews took place in the participant ...[more]

PMID: 31641000

Similar Datasets

Project description:OBJECTIVES:To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care SETTING: Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs. PARTICIPANTS:People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10). METHODS: In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions. RESULTS:28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact. CONCLUSIONS:This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.

Project description:BackgroundTransgender and gender diverse (TGD) people experience significant barriers to accessing affirming health services. There is a paucity of literature examining how both community members and health care professionals (HCPs) understand potential causes and solutions for these barriers, particularly in non-urban settings.ObjectiveWe present the first systematic examination of perspectives from community members and HCPs regarding barriers to and solutions for promoting access to gender-affirming health care.DesignStudy activities were conducted through the Plan and Act for Transgender Health (PATH) Project, a health needs assessment of TGD people. Community members in the catchment area were recruited to participate in focus group discussions about access to gender-affirming health care and optimal health service delivery models in March-October 2019. HCPs were recruited to participate in focus group discussions or in-depth interviews about experiences working with TGD clients. Data were analyzed using an inductive grounded theory approach.Setting25 rural counties in Massachusetts, New York, Connecticut, Vermont, and New Hampshire.ParticipantsStudy participants included 61 adult TGD community members and 23 HCPs working in the catchment area.ResultsBoth community members and HCPs spoke of the need for connectedness and linkages among disparate health system components for gender-affirming health care. Participants expressed this priority through calls for systems-level improvements within existing services (e.g., expanded data collection, expanded mental health services, inclusive and affirming health care environments, and TGD staff). They also expressed the need for expanded TGD community outreach and engagement (e.g., incorporation of a patient feedback process, TGD health navigators, and resource mapping).LimitationsFindings specifically reflect the perspectives of community members and HCPs in the rural New England area. Furthermore, the study sample was predominantly White non-Hispanic.ConclusionInterventions to achieve accessible gender-affirming health care must address the diverse perspectives and needs of both community members and HCPs.

Project description:ObjectivesDiabetic retinopathy (DR) can cause significant visual impairment which can be largely avoided by early detection through proper screening and treatment. People with DR face a number of challenges from early detection to treatment. The aim of this study was to investigate factors that influence DR screening in Thailand and to identify barriers to follow-up compliance from patient, family member, and health care provider (HCP) perspectives.MethodsA total of 15 focus group discussions (FGDs) were held, each with five to twelve participants. There were three distinct stakeholders: diabetic patients (n = 47) presenting to a diabetic retinopathy clinic in Thailand, their family members (n = 41), and health care providers (n = 34). All focus group conversations were transcribed verbatim. Thematic analysis was used to examine textual material.ResultsDifferent themes emerged from the FGD on knowledge about diabetes, self-care behaviors of diabetes mellitus (DM), awareness about DR, barriers to DR screening, and the suggested solutions to address those barriers. Data showed lower knowledge and awareness about diabetes and DR in both patients and family members. Long waiting times, financial issues, and lack of a person to accompany appointments were identified as the major deterrents for attending DR screening. Family support for patients was found to vary widely, with some patients reporting to have received adequate support while others reported having received minimal support. Even though insurance covered the cost of attending diabetes/DR screening program, some patients did not show up for their appointments.ConclusionPatients need to be well-informed about the asymptomatic nature of diabetes and DR. Communication at the patient level and shared decision-making with HCPs are essential. Family members and non-physician clinicians (such as diabetes nurses, diabetes educators, physician assistants) who work in the field of diabetes play a vital role in encouraging patients to attend diabetes and DR follow-ups visits regularly.

Dataset Information

Experiencing the care of a family member with Crohn's disease: a qualitative study.

Publications

Experiencing the care of a family member with Crohn's disease: a qualitative study.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets