scholarly journals Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study

2021 ◽  
pp. 1-22
Author(s):  
Déborah Oliveira ◽  
Fabiana Araújo Figueiredo Da Mata ◽  
Elaine Mateus ◽  
Christine W. Musyimi ◽  
Nicolas Farina ◽  
...  
Keyword(s):  
Sociological Theory ◽  
Good Care ◽  
Family Carers ◽  
Structured Interviews ◽  
Active Life ◽  
Home Based ◽  
Ethical Care ◽  
Low Levels ◽  
Selective Disclosure ◽  
And Training

Abstract This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding ‘obedience’ and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil.

scholarly journals People living with dementia and their family carers’ adherence to home-based Tai Chi practice

Dementia ◽  
2020 ◽  
pp. 147130122095775
Author(s):  
Yolanda Barrado-Martín ◽  
Michelle Heward ◽  
Remco Polman ◽  
Samuel R Nyman
Keyword(s):  
Tai Chi ◽  
Exercise Intervention ◽  
Perceived Benefits ◽  
Family Carers ◽  
Home Practice ◽  
Structured Interviews ◽  
Home Based ◽  
Thematic Approach ◽  
Tai Chi Exercise ◽  
At Home

Objectives The aim of this study was to understand what influenced people living with dementia and their family carers’ adherence to the home-based component of a Tai Chi exercise intervention. Method Dyads, of people living with dementia and their family carers, who participated in the intervention arm of the Tai Chi for people living with dementia trial, were invited to join weekly Tai Chi classes for 20 weeks and practice at home. Semi-structured dyadic home interviews were conducted on average after 16 weeks of classes. The views of 15 dyads with a range of home practice adherence were sought in semi-structured interviews. The interviews were analysed using an inductive thematic approach. Results Most participants found time to practise Tai Chi at home and practised for 18 hours on average. Amongst the barriers to adherence were participants’ competing commitments and a booklet not sufficiently conveying the Tai Chi movements. Hence, a video or DVD was requested by participants. Facilitators of their adherence to the home-based component of the intervention were their enjoyment of the practice and the development of a habit, which was supported by their commitment to the study and their willingness to benefit from Tai Chi. Conclusion Enjoyment and perceived benefits had a great impact on participants living with dementia and their carers’ adherence to home-based Tai Chi practice. However, difficulties to perceive the Tai Chi movements through images might be hindering sustained participation. Hence, alternative aids such as videos and DVDs should be explored to facilitate adherence.

scholarly journals ‘There is still so much inside’: The impact of personalised reminiscence, facilitated by a tablet device, on people living with mild to moderate dementia and their family carers

Dementia ◽  
2018 ◽  
Vol 19 (4) ◽  
pp. 1131-1150 ◽  
Author(s):  
Assumpta A Ryan ◽  
Claire O McCauley ◽  
Elizabeth A Laird ◽  
Aideen Gibson ◽  
Maurice D Mulvenna ◽  
...  
Keyword(s):  
Positive Impact ◽  
Family Carers ◽  
Structured Interviews ◽  
The Past ◽  
The United Kingdom ◽  
Home Based ◽  
Moderate Dementia ◽  
Tablet Device ◽  
Ipad App ◽  
The Impact

The aim of this qualitative study was to explore the impact of a home-based, personalised reminiscence programme facilitated through an iPad app on people living with dementia and their family carers. Semi-structured interviews were used to collect data from 15 people living with dementia and 17 family carers from a region of the United Kingdom. The interviews were recorded, transcribed and analysed using thematic analysis. Six key themes emerged related to usability (‘It’s part of my life now’); revisiting the past (‘Memories that are important to me’); home use (‘It was homely’); impact on the person living with dementia (‘It helped me find myself again’); gains and abilities (‘There is still so much inside’) and impact on relationships (‘It’s become very close’). These themes highlighted the impact of the reminiscence experience at an individual and relationship level for people living with dementia and their carers. The reminiscence experience also appeared to facilitate the development of new insights among participants that emphasised abilities and gains rather than disabilities and losses. The significance of personal memories was a core theme although this was not without its challenges, particularly if memories were distressing. The reminiscence experience was differentiated by individual roles. Carers tended to become more relationship-focused, whereas people living with dementia highlighted the significance of learning new skills. The study concluded that individual specific reminiscence supported by an iPad app can have a positive impact on people living with dementia and their carers at an individual and relationship level.

Cancer treatment decisions for people living with dementia: experiences of family carers

2020 ◽  
Vol 70 (suppl 1) ◽  
pp. bjgp20X711545
Author(s):  
Catherine Hynes ◽  
Caroline Mitchell ◽  
Lynda Wyld
Keyword(s):  
Cancer Treatment ◽  
Healthcare Professionals ◽  
Cancer Recurrence ◽  
Treatment Decisions ◽  
Support Needs ◽  
Family Carers ◽  
Structured Interviews ◽  
Power Of Attorney ◽  
Cancer Data ◽  
People With Dementia

BackgroundDementia and cancer are both diseases associated with older age. The National Cancer Data Audit in England found that 4.4% of people diagnosed with cancer also had cognitive impairment. Decisions about cancer treatment can be very complex when someone already has dementia. Often someone’s closest relative may be asked to make decisions on their behalf. Little is known about the psychosocial impact that this has on carers, or what their support needs are during this time.AimTo explore the experiences of family carers who have been involved in making cancer treatment decisions on behalf of a relative with dementia, in particular identifying challenges and support needs.MethodThe authors are conducting semi-structured interviews with carers of people with dementia who have been involved in making decisions about cancer treatment on their behalf. Data is being thematically analysed using an inductive approach. Two researchers will independently verify themes.ResultsThe authors expect to have completed 14–18 interviews and will report their preliminary findings. Family carers experience many difficulties in the context of cancer and dementia, including lack of support when coping with the aftereffects of cancer treatment, lack of awareness among healthcare professionals regarding the authority granted by a lasting power of attorney and the anxiety created by feeling responsible for identifying cancer recurrence.ConclusionThis study will highlight that supporting someone with dementia through cancer treatment, and having to make decisions about it on their behalf, creates unique challenges for carers. Currently there is a significant lack of support for those facing this distressing experience.

Care for delirium superimposed on dementia at an early stage

2020 ◽  
Keyword(s):  
Behavioral Problems ◽  
Healthcare Professionals ◽  
Early Stage ◽  
Good Care ◽  
Structured Interviews ◽  
Ethical Considerations ◽  
Appropriate Care ◽  
Adequate Care ◽  
Insight Into ◽  
Delirium Superimposed On Dementia

Delirium is a common serious complication in dementia that is associated with poor prognosis and a high burden on caregivers and healthcare professionals. Appropriate care is therefore important at an early stage for patients with delirium superimposed on dementia To gain insight into the care of six patients with delirium superimposed on dementia, 19 semi-structured interviews were conducted focused on the experiences of caregivers and professionals. The interviews revealed four themes that appeared to play a role: 1. experiences with and views on behavioral problems of these patients, 2. recognition and diagnosis of delirium in dementia, 3. views on good care and 4. organizational aspects. Knowledge gaps about delirium in dementia, as well as ethical considerations, play an important role in organizing timely and adequate care for patients with delirium superimposed on dementia.

scholarly journals Reluctance to Accept Palliative Care and Recommendations for Improvement: Findings From Semi-Structured Interviews With Patients and Caregivers

2021 ◽  
pp. 104990912110126
Author(s):  
Valeria Cardenas ◽  
Anna Rahman ◽  
Yujun Zhu ◽  
Susan Enguidanos
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Insurance Coverage ◽  
Healthcare Providers ◽  
Health Condition ◽  
Insurance Companies ◽  
Structured Interviews ◽  
Care Services ◽  
Home Based ◽  
Palliative Care Services

Background: Despite some insurance plans now paying for home-based palliative care, recent reports have suggested that insurance coverage for palliative care may be insufficient in expanding patient access to home-based palliative care. Aim: To identify patients’ and caregivers’ perceived barriers to home-based palliative care and their recommendations for overcoming these barriers. Design: We conducted a qualitative study using semi-structured individual interviews. Our interview protocol elicited participants’ perspectives on home-based palliative care services; positive and negative aspects of the palliative program explanation; and suggestions for improving messaging around home-based palliative care. Setting/Participants: Twenty-five participants (patients, proxies, and their caregivers) who were eligible for a randomized controlled trial of home-based palliative care were interviewed by telephone. Results: Themes related to home-based palliative care referral barriers included reluctance to have home visits, enrollment timing, lack of palliative care knowledge, misconceptions about palliative care, and patients’ self-perceived health condition. Themes related to recommendations for overcoming these obstacles included ensuring that palliative care referrals come from healthcare providers or insurance companies and presenting palliative care services more clearly. Conclusion: Findings reinforce the need for additional palliative care education among patients with serious illness (and their caregivers) and the importance of delivering palliative care information and referrals from trusted sources.

Qualitative Analysis of the Cognition and Flow (CoGFlowS) Study: An Individualized Approach to Cognitive Training for Dementia Is Needed

2021 ◽  
pp. 1-17
Author(s):  
Lucy Beishon ◽  
Victoria Haunton ◽  
Hari Subramaniam ◽  
Elizabeta B. Mukaetova-Ladinska ◽  
Ronney B. Panerai ◽  
...  
Keyword(s):  
Cognitive Training ◽  
Controlled Trial ◽  
Cognitive Disorders ◽  
Health Belief ◽  
Analytical Framework ◽  
Structured Interviews ◽  
Home Based ◽  
Individualized Approach ◽  
Belief Model ◽  
Severity Of Dementia

Background: Cognitive training (CT) may have benefits for both healthy older adults (HC) and those with early cognitive disorders [mild cognitive impairment (MCI) and dementia]. However, few studies have qualitatively evaluated home-based, computerized CT programs. Objective: We present the qualitative arm of a feasibility randomized controlled trial evaluating a CT program for HC and people living with MCI or dementia. Methods: Participants underwent semi-structured interviews after 12 weeks of CT. Where possible, participants were interviewed with their carers. The interview schedule and analysis were underpinned by the health belief model. Interviews were audio-recorded, transcribed, open-coded, and categorized into themes. The analytical framework was developed, and themes were condensed under five major categories: benefits, barriers, threat, self-efficacy, and cues to action. Results: 37 participants underwent interviews. CT was feasible and acceptable to participants. Benefits included: enjoyment, improved awareness, benchmarking cognitive function, reassurance of abilities and giving back control. Barriers were more prevalent among those with dementia: problems with technology, frustration, conflict between patients and carers, apathy and lack of insight, anxiety or low mood, and lack of portability. HC and MCI perceived the severity of dementia risk as high, partially mitigated by CT. Participants living with dementia valued a more individualized approach to training, accounting for baseline characteristics. Conclusion: CT was a feasible intervention for HC and people living with dementia and MCI. Benefits were present, but the identified barriers need to be addressed for CT to be implemented successfully.

scholarly journals “We’re on a Merry-Go-Round”: Reflections of Patients and Carers after Completing Treatment for Sarcoma

2021 ◽  
Vol 28 (4) ◽  
pp. 3003-3014
Author(s):  
Rhys Weaver ◽  
Moira O’Connor ◽  
Richard Carey Smith ◽  
Dianne Sheppard ◽  
Georgia K. B. Halkett
Keyword(s):  
Social Constructionist ◽  
Rare Cancer ◽  
Family Carers ◽  
Structured Interviews ◽  
Qualitative Research Design ◽  
Previously Treated ◽  
Sarcoma Treatment ◽  
Silver Lining

Sarcoma is a rare cancer that has a significant impact on patients’ and carers’ quality of life. Despite this, there has been a paucity of research exploring the diverse experiences of patients and carers following sarcoma treatment. The aim of this study was to explore patients’ and carers’ reflections on life after treatment for sarcoma. A qualitative research design with a social constructionist epistemology was used. Participants included patients previously treated for sarcoma (n = 21) and family carers of patients treated for sarcoma (n = 16). Participants completed semi-structured interviews which were analysed using thematic analysis. Three primary themes were identified: “This journey is never going to be over”, “But what happens when I am better?”, and finding a silver lining. Participants represented sarcoma as having a long-term, and sometimes indefinite, threat on their life that they had limited control over. Conclusions: This study highlight the heterogeneous and ongoing needs of sarcoma survivors and their families. Patients and carers strove to translate their experiences in a meaningful way, such as by improving outcomes for other people affected by sarcoma. Parental carers in particular attempted to protect the patient from the ongoing stress of managing the disease.

Work Patterns, Training, and Clinical Supervision Demographics of Home-Based Professional Counselors

2021 ◽  
pp. 106648072110618
Author(s):  
Janelle M. Cox
Keyword(s):  
Clinical Supervision ◽  
Graduate Training ◽  
Counseling Services ◽  
Professional Counselors ◽  
Work Patterns ◽  
Health Counseling ◽  
Home Based ◽  
Professional Requirements ◽  
Supervision And Training ◽  
And Training

Home-based counseling is an emerging modality of providing mental health counseling services to clients across the lifespan. However, minimal graduate training programs and home-based agencies provide training and preparation for professional counselors. In addition, educational and professional requirements are currently ill defined. A nonexperimental pilot survey exploring home-based professional counselors work-based, and clinical supervision and training patterns was conducted. Results suggest home-based professional counselors serve diverse populations and have limited training regarding home-based competencies. Findings from the study are presented. Implications for training and practice for home-based counselors are discussed.

scholarly journals Limits and possibilities experienced by nurses in the treatment of women with chronic venous ulcers

2014 ◽  
Vol 48 (spe) ◽  
pp. 53-58 ◽  
Author(s):  
Marcelo Henrique da Silva ◽  
Maria Cristina Pinto de Jesus ◽  
Miriam Aparecida Barbosa Merighi ◽  
Deíse Moura de Oliveira
Keyword(s):  
Women Professionals ◽  
Self Care ◽  
Ulcer Recurrence ◽  
Structured Interviews ◽  
Venous Leg Ulcer ◽  
Venous Ulcers ◽  
Values And Beliefs ◽  
Health Institutions ◽  
Standard Practices ◽  
And Training

Objective To understand the experiences and expectations of nurses in the treatment of women with chronic venous ulcers. Method Phenomenological research was based on Alfred Schütz, whose statements were obtained in January, 2012, through semi-structured interviews with seven nurses. Results The nurse reveals the difficulties presented by the woman in performing self-care, the perceived limitations in the treatment anchored in motivation, and the values and beliefs of women. It showed professional frustration because venous leg ulcer recurrence, lack of inputs, interdisciplinary work and training of nursing staff. There was an expected adherence to the treatment of women, and it emphasized the need for ongoing care, supported self-care and standard practices in treatment. Conclusion That treatment of chronic venous leg ulcers constitutes a challenge that requires collective investment, involving women, professionals, managers and health institutions.

scholarly journals Home-based pulmonary rehabilitation for people with COPD: A qualitative study reporting the patient perspective

2017 ◽  
Vol 15 (2) ◽  
pp. 123-130 ◽  
Author(s):  
Aroub Lahham ◽  
Christine F McDonald ◽  
Ajay Mahal ◽  
Annemarie L Lee ◽  
Catherine J Hill ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Physical Fitness ◽  
Pulmonary Rehabilitation ◽  
Positive Impact ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Home Setting ◽  
Supervised Exercise ◽  
Home Based

This study aimed to document the perspective of patients with chronic obstructive pulmonary disease (COPD) who underwent home-based pulmonary rehabilitation (HBPR) in a clinical trial. In this qualitative study, open-ended questions explored participants’ views regarding HBPR. Thirteen semi-structured interviews were analysed using a thematic analysis approach. Major themes from interviews included the positive impact of HBPR on physical fitness, breathing and mood. Participants valued the flexibility and convenience of the programme. Participants also highlighted the importance of social support received, both from the physiotherapist over the phone and from family and friends who encouraged their participation. Reported challenges were difficulties in initiating exercise, lack of variety in training and physical incapability. While most participants supported the home setting, one participant would have preferred receiving supervised exercise training at the hospital. Participants also reported that HBPR had helped establish an exercise routine and improved their disease management. This study suggests that people with COPD valued the convenience of HBPR, experienced positive impacts on physical fitness and symptoms and felt supported by their community and programme staff. This highly structured HBPR model may be acceptable to some people with COPD as an alternative to centre-based pulmonary rehabilitation.

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