scholarly journals Taking part in the community occupational therapy in dementia UK intervention from the perspective of people with dementia, family carers and occupational therapists: A qualitative study

Dementia ◽  
2020 ◽  
pp. 147130122098124
Author(s):  
Jane Burgess ◽  
Jennifer Wenborn ◽  
Laura Di Bona ◽  
Martin Orrell ◽  
Fiona Poland
Keyword(s):  
Qualitative Study ◽  
Occupational Therapy ◽  
Occupational Therapists ◽  
Family Carer ◽  
Family Carers ◽  
Structured Interviews ◽  
Usual Practice ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Person With Dementia

Aim Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. Method A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. Findings Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. Conclusion This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it.

scholarly journals 473 - Post-diagnostic Dyadic Intervention for People with Dementia and their Family Carers

2020 ◽  
Vol 32 (S1) ◽  
pp. 195-195
Author(s):  
Marleen Prins ◽  
Elsemieke van Belzen ◽  
Henriëtte van der Roest
Keyword(s):  
Psychosocial Support ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Emotional Impact ◽  
Family Carer ◽  
Family Carers ◽  
People With Dementia ◽  
The Family ◽  
The Future ◽  
Person With Dementia

Background and objectives Support directly after the diagnosis is often experiences as inadequate by people with dementia and their family carers. In this phase, appropriate psychosocial support is important to adapt to and cope with the dementia diagnosis. Often, available support is focused on practical matters and not on the emotional impact of the diagnosis. Also, very often problems have already started to accumulate before support is provided. In the US, the intervention SHARE [Support, Health, Activities, Resources, Education] was therefore developed and studied. This intervention is innovative, because it is designed for dyads (e.g., the person with dementia and their family carer) dealing with early-stage dementia. Its’ primary goal is to enhance communication between people with dementia and their family carers and to prepare them for the future. Several years ago, the intervention was adjusted and pilot -tested in the Netherlands, with positive results. This RCT study evaluates the (cost-)effectiveness of the Dutch SHARE intervention.Methods During four or five session and a pre-session, a healthcare psychologist carries out the intervention with dyads dealing with early-stage dementia. This to enhance skills of the dyad to cope with changes and stressors that might be expected in the future due to the dementia. The intervention takes place in an early stage when the person with dementia is still able to participate actively and before the family carer is overwhelmed by care-related stress. The primary outcome measurements are the quality of life of the person with dementia and self-efficacy of the family carer. Secondary outcomes are stress, communication in the relationship and perspective taking measured only for family carers. The design and procedures of the RCT will be presented in this session as well as the content of the intervention and demographic characteristics of participating dyads.Conclusion This intervention increases the ability of the dyad to cope with the disease and capacity to deal with the situation, with positive experiences of participating dyads and professionals. The study enhances knowledge about psychosocial interventions for people with dementia and family carer

scholarly journals A qualitative study of child participation in decision-making: Exploring rights-based approaches in pediatric occupational therapy

PLoS ONE ◽  
2021 ◽  
Vol 16 (12) ◽  
pp. e0260975
Author(s):  
Deirdre O’Connor ◽  
Helen Lynch ◽  
Bryan Boyle
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Occupational Therapy ◽  
Best Practice ◽  
Occupational Therapists ◽  
Children's Rights ◽  
Children’S Rights ◽  
Structured Interviews ◽  
Rights Of The Child ◽  
Children’S Voices

Background According to Article 12 of the United Nations Convention on the Rights of the Child, therapists are duty-bound to include children in decisions that impact them. Although occupational therapists champion client-centred, collaborative practice, there remains a paucity of studies detailing children’s rights and experiences of decision-making in pediatric occupational therapy. Purpose This qualitative study described the decision-making experiences of children, parents and therapists in occupational therapy. Methods Semi-structured interviews were conducted with 17 participants (six children, five parents and six occupational therapists), and data analysed using thematic analysis. Findings Three themes emerged: 1) Goal-setting experiences; 2) Adults: child-rights gatekeepers or defenders? and 3) Decision-making in context. Findings suggest that decision-making is mostly adult directed, and children’s voices are subsumed by adult-led services, priorities, and agendas. Implications Children’s rights need to be embedded as an aspect of best practice in providing services that are child-centred in occupational therapy practices and education.

scholarly journals Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic

2021 ◽  
Vol 18 (2) ◽  
pp. 686
Author(s):  
Clarissa Giebel ◽  
Caroline Sutcliffe ◽  
Frances Darlington-Pollock ◽  
Mark A. Green ◽  
Asan Akpan ◽  
...  
Keyword(s):  
Social Care ◽  
Late Onset ◽  
Care Pathways ◽  
Family Carer ◽  
Family Carers ◽  
North West ◽  
Care Services ◽  
People With Dementia ◽  
Health And Social Care ◽  
Person With Dementia

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

scholarly journals Theatre production: a positive metaphor for dementia care-giving

2021 ◽  
pp. 1-16
Author(s):  
Christine Brown Wilson ◽  
Jan Hinson ◽  
Jacinda L. Wilson ◽  
Stephanie Power ◽  
Daniel Hinson ◽  
...  
Keyword(s):  
Central Character ◽  
Family Carers ◽  
Structured Interviews ◽  
Face To Face ◽  
Care Giving ◽  
People With Dementia ◽  
Theatre Production ◽  
Fresh Perspective ◽  
The Individual ◽  
Person With Dementia

Abstract Language can shape and reinforce attitudes and stereotypes about living with dementia. This can happen through use of metaphors. However, common metaphors may not capture the complexity of experience of dementia from the perspective of the individual person or a family carer. This paper presents an alternative metaphor – that of a theatre production – based on the strategies used by carers to support people with dementia to live well in the community. We conducted face-to-face semi-structured interviews with 12 family members caring for someone with dementia in the community in Queensland, Australia. Our aim was to explore the strategies these carers used to provide support. Interview recordings were fully transcribed and thematically analysed. We identified positive care-giving strategies that described multiple roles that carers fulfilled as they felt increasingly responsible for day-to-day decision making. Family carers explained how they supported the person with dementia to remain a central character in their life and continued to support the person to be themselves. To achieve this, family carers embodied roles that we identified as similar to roles in a theatre production: director, stage manager, supporting cast, scriptwriter, and costume designer and wardrobe manager. Our metaphor of a theatre production offers a fresh perspective to explore the experience of informal care-giving in the context of dementia.

scholarly journals Influences on uptake of a community occupational therapy intervention for people with dementia and their family carers

2018 ◽  
Vol 82 (1) ◽  
pp. 38-47 ◽  
Author(s):  
Becky Field ◽  
Elizabeth Coates ◽  
Gail Mountain
Keyword(s):  
Occupational Therapy ◽  
Occupational Therapists ◽  
Research Programme ◽  
Family Carers ◽  
Living Well ◽  
People With Dementia ◽  
Therapy Interventions ◽  
Occupational Therapy Interventions ◽  
Occupational Therapy Intervention ◽  
Therapy Intervention

Introduction Health policy promotes living well with dementia. Occupational therapists deliver interventions to support people with dementia and family carers to live well. This study aimed at identifying influences on uptake of a community occupational therapy intervention by people with dementia and carers, as little evidence about this topic exists. Method Seventeen semi-structured, paired interviews with people with dementia and carers were conducted as part of the ‘Valuing Active Life in Dementia’ research programme. A secondary, qualitative analysis of these interviews explored influences on uptake of the intervention. Findings Four main themes were identified: ‘Grabbing at straws and keen to take part’; ‘We’re trying to put a routine in’; ‘We didn’t know what to expect’, and ‘Give it a go’. Factors identified as potentially influencing uptake included whether the intervention was perceived as potentially meeting needs for support and activity, and whether participants were struggling to adjust or cope. Conclusion Despite limited expectations or apprehension, uptake of this intervention was demonstrated. Understanding why people with dementia and carers accept intervention offers can inform what occupational therapists provide and how it is offered. Further research is required to determine the occupational therapy interventions people with dementia and carers might find supportive at different stages of the disease trajectory.

scholarly journals ‘Four walls and a garden’: Exploring the experiences of families affected by dementia during the COVID-19 pandemic

Dementia ◽  
2021 ◽  
pp. 147130122110590
Author(s):  
Emily Cousins ◽  
Kay de Vries ◽  
Karen Harrison Dening
Keyword(s):  
Qualitative Study ◽  
Peer Support ◽  
Family Carers ◽  
Social Disruption ◽  
Structured Interviews ◽  
Social Contacts ◽  
Social Division ◽  
People With Dementia ◽  
The Uk ◽  
The Impact

Introduction When the first national COVID-19 lockdown came into effect in the UK in March 2020, life changed significantly. Some services and social contacts for people with dementia and their families stopped, while others, for example, peer support, moved online. This research explored the experiences of families affected by dementia during the pandemic, specifically those living in the community. Aims In partnership with a community dementia charity, this study sought to gain an understanding of the experiences of people with dementia and family carers during the COVID-19 pandemic and explore the impact and implications of lockdown on people with dementia and family carers. Methods This was a qualitative study that used semi-structured interviews to collect data from people with dementia and family carers. Interviews were conducted online via video call, individually or within caring dyads. Initially, data were coded, analysed and themed inductively. Additionally, social disruption and social division theories were used to deductively identify patterns in the data to enhance understanding. Findings Six distinct themes were identified from the inductive analysis: Routine: ‘busy life before lockdown’; Isolation: ‘ four walls and a garden’; Living with restrictions: ‘ treading on eggshells’; Discovering positives: ‘you are in the same boat’; Easing lockdown: ‘ raring to go’; Heightened uncertainty: ‘ things have changed’. Illustrative examples of symptoms of social disruption and division were identified within the data: frustration, democratic disconnection, fragmentation, polarisation and escalation. Conclusion Experiences of people with dementia and family carers during the pandemic were mixed, resulting in hopes and worries for the future. Social disruption and social division are relevant frameworks for analysing experiences of COVID-19.

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.

scholarly journals Occupational therapists’ experiences of enabling people to participate in sport

2020 ◽  
pp. 030802262097394
Author(s):  
Deborah Bullen ◽  
Channine Clarke
Keyword(s):  
Qualitative Study ◽  
Occupational Therapy ◽  
Thematic Analysis ◽  
Social Care ◽  
Occupational Therapists ◽  
Phenomenological Approach ◽  
Scope Of Practice ◽  
Local Populations ◽  
Care Services ◽  
Health And Social Care

Introduction In response to growing demands on health and social care services there is an emphasis on communities addressing the needs of local populations to improve lives and reduce inequalities. Occupational therapists are responding to these demands by expanding their scope of practice into innovative settings, such as working with refugees, the homeless and residents of nursing homes, and within sport and leisure environments. The benefits of sport are widely acknowledged, and this paper argues that occupational therapists could play a pivotal role in enabling people to participate. Method This qualitative study drew on a phenomenological approach and used interviews and thematic analysis to explore five occupational therapists’ experiences of enabling people to participate in sport. Findings Findings revealed that participants demonstrated the uniqueness of occupational therapy when enabling people to participate in sport and practised according to their professional philosophy. There were opportunities to reach wider communities and promote the value of occupational therapy by collaborating with organisations, but there were also challenges when working outside of traditional settings. Conclusion The study emphasises the unique skills occupational therapists can bring to this setting. It highlights opportunities to expand their practice, to forge new partnerships in sports and leisure environments, and to address the national inactivity crisis.

scholarly journals What Are the Benefits of Pet Ownership and Care Among People With Mild-to-Moderate Dementia? Findings From the IDEAL programme

2020 ◽  
pp. 073346482096261
Author(s):  
Carol Opdebeeck ◽  
Michael A. Katsaris ◽  
Anthony Martyr ◽  
Ruth A. Lamont ◽  
James A. Pickett ◽  
...  
Keyword(s):  
Positive Outcomes ◽  
Pet Ownership ◽  
Active Life ◽  
People With Dementia ◽  
Moderate Dementia ◽  
Self Reports ◽  
Key Factor ◽  
Person With Dementia ◽  
The Ideal

Pet ownership has been associated with positive outcomes in many populations, yet the associations with physical and psychological wellbeing in people with dementia remain unclear. The current study used baseline data from 1,542 people living at home with mild-to-moderate dementia from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Regression analyses investigated associations of pet ownership and pet care with self-reports of walking, loneliness, depression, and quality of life (QoL). After adjusting for covariates, having any pet was associated with higher likelihood of walking over 3 hr in the last week. Those with a dog and who were involved in its care were less likely to be lonely than those with no dog. Having any pet but no involvement in its care was associated with increased depression and decreased QoL compared with those without a pet. The key factor in the associations was involvement in the care of the pet by the person with dementia.

Exploring the meaning of value-based occupational therapy services from the perspectives of managers, therapists and clients

2021 ◽  
pp. 030802262110300
Author(s):  
Su Ren Wong ◽  
Bi Xia Ngooi ◽  
Fang Yin Kwa ◽  
Xiang Ting Koh ◽  
Rachel J J Chua ◽  
...  
Keyword(s):  
Occupational Therapy ◽  
Goal Setting ◽  
Management Strategies ◽  
Perceived Value ◽  
Occupational Therapists ◽  
Therapeutic Relationships ◽  
Structured Interviews ◽  
Therapeutic Communication ◽  
Main Concept ◽  
Therapy Services

Introduction There is a worldwide trend towards value-based health care, which strives to control healthcare costs while maximising value for clients. The main concept of value has been defined as health outcomes achieved per US dollar spent. This research explored how clients of occupational therapy services, managers and occupational therapists perceived value in occupational therapy services. Method A qualitative design was used to explore the perspectives of clients ( n = 11), occupational therapists ( n = 7) and occupational therapy managers ( n = 7). Appreciative inquiry guided the two phases of semi-structured interviews ( n = 5) and focus groups ( n = 6). Inductive and deductive coding were used to establish themes. Findings Three themes encompassed the participants’ perceived value of occupational therapy services: (1) outcomes which are meaningful to daily life, (2) a constructive client–therapist relationship and (3) affordable, coordinated and understandable therapy. Conclusion Participants attributed value to occupational therapy services when they encountered personalised goal setting, focused on meaningful outcomes, managed personal costs and experienced positive therapeutic relationships. Enhancing services could focus on (1) developing skills in collaborative goal setting, (2) determining suitable outcome measures which are meaningful at personal- and service-level reporting, (3) encouraging self-management strategies, and (4) emphasising therapeutic relationships and supporting therapeutic communication skill development.

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