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Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

ABSTRACT: This article explores the experiences of the use of the Regional Health and Social Care Hospital Passport (Regional Hospital Passport) in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the Regional Hospital Passport. There were clear benefits of the Hospital Passport when used across hospital services and clinical practice settings such as dental and General Practices. There was participant agreement that communication and the person-centred care experiences were enhanced. Findings suggest that providers of health and social care services need to take greater responsibility and accountability for ensuring Regional Hospital Passports are promoted and used across all settings. There is a requirement to develop the wider use and uptake of hospital passports to support adults with intellectual disabilities, with potential for use with other patient groups.

SUBMITTER: McCormick F

PROVIDER: S-EPMC10916341 | biostudies-literature | 2024 Mar

REPOSITORIES: biostudies-literature

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Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

McCormick Freda F Marsh Lynne L Taggart Laurence L Brown Michael M

Journal of intellectual disabilities : JOID 20221212 1

This article explores the experiences of the use of the <i>Regional Health and Social Care Hospital Passport (Regional Hospital Passport)</i> in Northern Ireland from the perspectives of adults with intellectual disabilities, family carers and health professionals. From semi-structured interviews three themes emerged: usefulness; facilitators; and barriers to the use of the <i>Regional Hospital Passport</i>. There were clear benefits of the Hospital Passport when used across hospital services an ...[more]

PMID: 36503311

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Project description:BackgroundLongitudinal studies of family carers of people with intellectual disabilities during the COVID-19 pandemic have been very rare. This study investigated trajectories of family-carer wellbeing and the impact of the caring role on carers' health over four time points measured during the COVID-19 pandemic and after all public health restrictions had been lifted (between December 2020 and late 2022) across the United Kingdom.MethodsFamily carers of adults with intellectual disabilities participated through a co-designed, online survey at four time points across the pandemic (2020-2022). Growth models were used to determine the change in family-carer wellbeing (n = 312) and the impact of the caring role on carers' health across the pandemic and what factors were associated with these outcomes. We explored associations between profound and multiple intellectual disabilities (PMID), the cared-for person's individual wellbeing, the cared-for person's age, whether the cared-for person lived with their family and family-carer wellbeing and impact of caring trajectories.ResultsOverall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period. If the cared-for person had PMID was associated with greater degrees of depression and stress for caregivers and thus increased the impact of the caring role on carers' health, but it was not associated with carer wellbeing. Similarly, the reduction in individual wellbeing of the cared-for person and the caregiver's perception of this person's wellbeing was also significantly associated with increased impact of the caring role on carers' health and carer wellbeing. There was no evidence that age of cared-for person was predictive of either outcome, and there were mixed findings on whether living at home was an associated factor for either outcome.ConclusionsOverall, family-carer wellbeing improved, and the impact of the caring role on carers' health reduced across the time period, but the cared-for persons' poorer wellbeing and complex needs (indexed by the presence of PMID) were associated with negative impacts on family carers during the pandemic period.

Project description:BackgroundProviding care and support for a person with intellectual disabilities can be challenging and may negatively impact on family carers' health and wellbeing. A online support programme was co-designed with charitable organisations and family carers, to help meet the mental health and wellbeing needs of family carers.ObjectiveTo test the acceptability of a newly developed online support programme for carers of people with profound and multiple intellectual disabilities.MethodsA sequential mixed-methods explanatory design was utilised. An adapted version of the Acceptability of Health Apps among Adolescents Scale was distributed to family carers across the United Kingdom and Ireland who had viewed the Carers-ID.com intervention. Participants were then invited to take part in an online interview. Qualitative and quantitative data were analysed separately and then brought together through the triangulation protocol.ResultsSeventy family carers (47 female, 23 male) responded to the acceptability survey, with 10 (7 female, 3 male) taking part in interviews. Carers expressed high levels of programme acceptability (mean = 75.43 out of 88). Six themes were generated from interviews with family carers; i) time is precious, ii) the breadth and depth of module content, iii) it was somebody's experience; it was meaningful, iv) won't work for everyone, v) representation: people I could identify with, and vi) module specific suggestions for future changes. Based on our triangulation, four areas of convergence were identified: programme usability and ease, attitudes towards the programme, perceptions of effectiveness, and programme relatability.ConclusionsTo be acceptable, online interventions for carers of people with intellectual disability need to be accessible, understandable and easy to use, as carers' free time can be limited. It would be important to investigate the effectiveness of online interventions for family carers, specifically considering which carers the intervention works for, and for whom it may not.

Project description:BackgroundFamily carers play a crucial role in supporting the health and well-being of people with intellectual disabilities. Given their role and responsibilities, many family carers experience significant and ongoing stress and mental health difficulties. Programmes and interventions which provide training and support to family carers have been shown to have a positive impact on levels of stress and quality of life. However, these are often face to face which can create barriers to full participation. Online interventions have been shown to offer flexibility in delivery compared with traditional face-to-face approaches. The primary objective of this study is to determine the feasibility of delivering the Carers-ID online intervention, while the secondary outcome is improved mental health in family carers of people with intellectual disabilities.MethodsFamily carers (n = 120) will be randomised to receive the intervention (n = 60) or assigned to a wait-list control (n = 60) group. The intervention ( www.Carers-ID.com ) consists of 14 modules which cover topics including the following: promoting resilience, providing peer support, reducing anxiety, managing stress, accessing local supports and managing family conflict and information for siblings who are carers. The intervention has been co-produced with voluntary sector organisations and family carers and tested for acceptability. Primary outcomes for this study include acceptability and feasibility of the outcome measures, recruitment, participation and retention rates and effect sizes. Secondary outcomes will be completed at three time points (baseline, following intervention completion and 3 months after completion). These include the following: the Depression, Anxiety and Stress Scale, the Warwick-Edinburgh Mental Well-being Scale, the Resilience Scale and the Social Connectedness Scale Revised. Participants (n = 12) who have taken part in the intervention arm of the research will be invited to participate in semi-structured interviews as part of the process evaluation.DiscussionThe Carers-ID intervention provides an online resource for family carers to support their mental health and well-being and promote their resilience. It represents an affordable and accessible means of delivering such support. Testing the feasibility of the intervention and related trial procedures is required to determine whether a full-scale randomised controlled trial to evaluate the intervention's effectiveness is warranted.Trial registrationClinicalTrials.gov : NCT05737823.

Project description:PurposeEpilepsy affects 1 in 5 people with an intellectual disability (ID), but little is known about their experiences of living with epilepsy. A qualitative study was conducted to investigate the impact and management of epilepsy in people with ID.Materials and methodsPeople with epilepsy and ID and their carers were invited to take part in semi-structured interviews. Eleven participants with ID and their carers were interviewed together, one participant with ID and their carer were interviewed separately, two interviews took place with the participant with ID only, and one interview took place with the carer only. The interviews were transcribed verbatim, coded, and analyzed thematically (dual independent coding for 30% of the transcripts).ResultsThree themes emerged (participant characteristics, living with epilepsy, epilepsy management and information needs) which indicated the following: 1) diversity regarding health profiles, communication abilities, severity of epilepsy, perceived control of epilepsy, and support needs; 2) a reduction in severity and frequency of seizures for a sizeable proportion of participants through antiepileptic drugs; 3) the lifelong impact of epilepsy and related seizures on participants' activities and quality of life; 4) the perceived burden of epilepsy and difficulty managing the condition for a large proportion of participants; 5) high levels of satisfaction with epilepsy-related services and care; and 6) an overall lack of written accessible information about epilepsy.ConclusionsThis study has highlighted a significant impact of epilepsy and related seizures on the daily lives and quality of life of people with ID. Although a sizeable proportion of participants and their carers considered their epilepsy to be well controlled, the majority reported difficulties managing epilepsy and minimizing its impact on their wellbeing. Excluding care staff and the support provided by epilepsy clinics, the participants had not accessed any adapted self-management or information resources about epilepsy.

Project description:BackgroundThe escalating prevalence of dementia in India highlights the need for effective dementia care, particularly in a context marked by limited specialized services and resources. In response to this growing challenge, we sought to contribute to the understanding of societal expectations of multidisciplinary dementia care by exploring the qualities that family carers and healthcare professionals value in dementia care professionals within a multidisciplinary team in India.MethodsThe aim of the study was to describe the perspectives of carers and healthcare professionals regarding the attributes of a 'good doctor' in the context of accessing care for individuals with dementia in India. The research involved qualitative face-to-face interviews with 19 family carers and 25 healthcare professionals in Bengaluru, India, with data collected between March and July 2022.ResultsUsing a thematic analysis framework, four main themes emerged: [1] accessibility and availability [2], empathetic engagement and effective communication [3], knowledge and competency, and [4] systemic reforms and culturally competent multilevel support. Public and professionals' perceptions of 'good' care appeared to have shifted from seeking cures to prioritizing time, counselling, and information, reflecting a more holistic understanding of support needed. Interviewees valued interactions in which they perceived practitioners acting with patience, compassion, respect for dignity of the person with dementia, and professional competence. Effective communication was key. Challenges in accessing quality dementia care included inadequate infrastructure, lack of specialized services, and long waiting times. The importance of multidisciplinary approaches and the need for systemic reforms to enhance service delivery were highlighted.ConclusionFindings highlight a need for training programs for healthcare professionals to foster the values inherent to delivery of person-centered care.

Project description:BackgroundHospital at home (HaH) provides acute healthcare services in patients' homes instead of traditional in-patient care. Research has reported positive outcomes for patients and reduced costs. Although HaH has developed into a global concept, we have little knowledge about the involvement and role of family caregivers (FCs) of adults. The aim of this study was to explore FC involvement and role during HaH treatment as perceived by patients and FCs in a Norwegian healthcare context.MethodsA qualitative study was carried out among seven patients and nine FCs in Mid-Norway. The data was obtained through fifteen semi-structured interviews; fourteen were performed individually and one as duad interview. The age of the participants varied between 31 and 73 years, and mean age of 57 years. A hermeneutic phenomenological approach was used, and the analysis was performed according to Kvale and Brinkmann's description of interpretation.ResultsWe identified three main categories and seven subcategories regarding FC involvement and role in HaH: (1) Preparing for something new and unfamiliar, including the subcategories `Lack of involvement in the decision process` and `Information overload affecting caregiver readiness`, (2) Adjusting to a new everyday life at home, including the subcategories `The critical first days at home`, `Coherent care and support in a novel situation`, and `Prior established family roles influencing the new everyday life at home`, (3) FCs` role gradually diminishes and looking back, including the subcategories `A smooth transition to life beyond hospital at home` and `Finding meaning and motivation in providing care`.ConclusionsFCs played an important role in HaH, although their tasks, involvement and effort varied across different phases during HaH treatment. The study findings contribute to a greater understanding of the dynamic nature of the caregiver experiences during HaH treatment, which can guide healthcare professionals on how they can provide timely and appropriate support to FCs in HaH over time. Such knowledge is important to decrease the risk of caregiver distress during HaH treatment. Further work, such as longitudinal studies, should be done to examine the course of caregiving in HaH over time to correct or support the phases described in this study.

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Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

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Using a hospital passport from the perspective of adults with intellectual disabilities, family carers and health professionals: A qualitative study.

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