scholarly journals Understanding family carer experiences of advanced dementia caregiving in India: towards a vision for integrated practice

2020 ◽  
Vol 28 (4) ◽  
pp. 337-348
Author(s):  
Louise Ritchie ◽  
Anna Jack-Waugh ◽  
Elsa Sanatombi Devi ◽  
Binil V ◽  
Anice George ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Local Community ◽  
Well Being ◽  
Family Carer ◽  
Advanced Dementia ◽  
Family Carers ◽  
Care Needs ◽  
Content Type ◽  
Practitioner Education

PurposeMany individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community.Design/methodology/approachThree focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English.FindingsThe findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation.Research limitations/implicationsThere is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants.Practical implicationsThe findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India.Originality/valueThis paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services.

Community-led and/or focused initiatives to support family carers within a palliative care context: An integrative review

2018 ◽  
Vol 33 (2) ◽  
pp. 250-256 ◽  
Author(s):  
Anita Chung ◽  
Aileen Collier ◽  
Merryn Gott
Keyword(s):  
Palliative Care ◽  
Grey Literature ◽  
Well Being ◽  
Research Literature ◽  
Integrative Review ◽  
Empirical Literature ◽  
Family Carers ◽  
Care Needs ◽  
Palliative Care Needs ◽  
Support Family

Background: Public health approaches to palliative care prioritise community-focused initiatives to support people with palliative care needs and their families. The nature and extent of these initiatives have not previously been reported. Aim: To identify community-led and/or focused initiatives that have been developed to support family carers of people with palliative care needs and for which evaluation information is reported in the empirical literature. Design: An integrative study design was undertaken using systematic methods. Data sources: CINAHL, Medline, PsycINFO, Embase, Cochrane, Sociological Abstracts, Proquest Social Science Database, and grey literature were searched using standardised search terms. Results: Two quantitative, two qualitative and two mixed method studies were identified ( n = 6). All community initiatives identified were professionally led, although three had consumer input. Most aimed to improve carer psychosocial well-being and all were reported to have been beneficial. Conclusions: This integrative review identified only six community-focused and evaluated initiatives supporting family carers in the international palliative care research literature. Further evaluation is needed. However, appropriate evaluation methods and reporting require further discussion and debate between all stakeholders. Service users and communities themselves must be central to this process.

scholarly journals What makes palliative care needs “complex”? A multisite sequential explanatory mixed methods study of patients referred for specialist palliative care

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Anne M. Finucane ◽  
Connie Swenson ◽  
John I. MacArtney ◽  
Rachel Perry ◽  
Hazel Lamberton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Focus Groups ◽  
Healthcare Professionals ◽  
Psychological Needs ◽  
Care Providers ◽  
Specialist Palliative Care ◽  
Care Needs ◽  
Complex Needs ◽  
Sequential Explanatory ◽  
Palliative Care Needs

Abstract Background Specialist palliative care (SPC) providers tend to use the term ‘complex’ to refer to the needs of patients who require SPC. However, little is known about complex needs on first referral to a SPC service. We examined which needs are present and sought the perspectives of healthcare professionals on the complexity of need on referral to a hospice service. Methods Multi-site sequential explanatory mixed method study consisting of a case-note review and focus groups with healthcare professionals in four UK hospices. Results Documentation relating to 239 new patient referrals to hospice was reviewed; and focus groups involving 22 healthcare professionals conducted. Most patients had two or more needs documented on referral (96%); and needs were recorded across two or more domains for 62%. Physical needs were recorded for 91% of patients; psychological needs were recorded for 59%. Spiritual needs were rarely documented. Referral forms were considered limited for capturing complex needs. Referrals were perceived to be influenced by the experience and confidence of the referrer and the local resource available to meet palliative care needs directly. Conclusions Complexity was hard to detail or to objectively define on referral documentation alone. It appeared to be a term used to describe patients whom primary or secondary care providers felt needed SPC knowledge or support to meet their needs. Hospices need to provide greater clarity regarding who should be referred, when and for what purpose. Education and training in palliative care for primary care nurses and doctors and hospital clinicians could reduce the need for referral and help ensure that hospices are available to those most in need of SPC input.

Social determinants of mental well-being: senses of powerlessness and empowerment among Romani in Ukraine

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Viktoriia Gorbunova ◽  
Natalia Gusak ◽  
Vitalii Klymchuk ◽  
Valeriia Palii ◽  
Vitalina Ustenko ◽  
...  
Keyword(s):  
Social Determinants ◽  
Local Community ◽  
Extended Family ◽  
Well Being ◽  
Structured Interview ◽  
Research Strategy ◽  
Content Type ◽  
Main Research ◽  
Main Research Interest ◽  
Mental Well Being

Purpose The purpose of this paper is to explore senses of powerlessness and empowerment among Romani in Ukraine in relation to such social circles as the extended family, the Romani local community and the whole Ukrainian society. The main research interest is focused on situations and factors that make people feel powerless or empowered. Design/methodology/approach The study was conducted using a semi-structured interview method via telephone. Romani NGO experts approved the interview content. Trained Roma-facilitators were interviewers. Every interview was transcribed for further thematic analysis. Findings The most prominent empowerment factors for Romani people are located within their families and local communities, while the bigger society (Ukrainians themselves and Ukrainian public institutions) is a main source of powerlessness. At the same time, the rigid role of family and community expectations is seen as detrimental for both males and females. Originality/value The paper is original in terms of its topic (senses of powerlessness and empowerment among Romani in Ukraine as social determinants of mental well-being) and research strategy (engagement of Roma-facilitators as interviewers).

scholarly journals Needs of patient with advanced stages of cancer in a Thai community

2018 ◽  
Vol 32 (5) ◽  
pp. 342-351
Author(s):  
Panita Krongyuth ◽  
Pimpan Silpasuwan ◽  
Chukiat Viwatwongkasem ◽  
Cathy Campbell
Keyword(s):  
Palliative Care ◽  
Content Analysis ◽  
Pain Management ◽  
Care Providers ◽  
Care Needs ◽  
Open Communication ◽  
Content Type ◽  
Advanced Stages ◽  
Palliative Care Needs ◽  
At Home

Purpose The purpose of this paper is to explore the needs of people with cancer in advanced stages and to analyze factors that influence them. Design/methodology/approach A concurrent mixed-method design was used. Descriptive design was conducted in Ubon Ratchathani Province, Thailand. Data were collected from a convenience sample of patients with advanced cancer of any tissue or organ. Questionnaires were completed by 110 patients aged 60 years and above (response rate 110/130=84.6 percent). In-depth interviews were conducted with a total of eight patients. Content analysis of semi-structured interviews of a sub-sample was subsequently performed to better understand the real needs of patients with advanced stages of cancer at home setting. Findings The majority (77.5 percent) reported a preference to spend their final days at home. The four most common palliative care needs were more information about disease and medical treatment (98.2 percent), more treatment for pain (97.3 percent), health education for family caregivers (95.5 percent) and health volunteers visit at home (95.5 percent). Content analysis of the qualitative data suggested that patient needs health care providers to deliver open communication, pain management and provide psychosocial supports. Originality/value The result showed that patients-related variables are associated with the palliative care needs in patients with advanced stages of cancer. Communication skills and pain management are the key components to support the need for palliative care at home and to benefit the quality of life in terminally ill patients.

scholarly journals Modelling the comparative costs of Namaste Care: results from the namaste care intervention UK study

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jennifer Bray ◽  
Dawn Brooker ◽  
Isabelle Latham ◽  
Darrin Baines
Keyword(s):  
Usual Care ◽  
Positive Impact ◽  
Cost Model ◽  
Well Being ◽  
Care Homes ◽  
Advanced Dementia ◽  
Content Type ◽  
Care Intervention ◽  
The Impact ◽  
Care Costs

Purpose The purpose of this paper is to populate a theoretical cost model with real-world data, calculating staffing, resource and consumable costs of delivering Namaste Care Intervention UK (NCI-UK) sessions versus “usual care” for care home residents with advanced dementia. Design/methodology/approach Data from five care homes delivering NCI-UK sessions populated the cost model to generate session- and resident-level costs. Comparator usual care costs were calculated based on expert opinion and observational data. Outcome data for residents assessed the impact of NCI-UK sessions and aligned with the resident-level costs of NCI-UK. Findings NCI-UK had a positive impact on residents’ physical, social and emotional well-being. An average NCI-UK group session cost £220.53, 22% more than usual care, and ran for 1.5–2 h per day for 4–9 residents. No additional staff were employed to deliver NCI-UK, but staff-resident ratios were higher during Namaste Care. Usual care costs were calculated for the same time period when no group activity was organised. The average cost per resident, per NCI-UK session was £38.01, £7.24 more than usual care. In reality, costs were offset by consumables and resources being available from stock within a home. Originality/value Activity costs are rarely calculated as the focus tends to be on impact and outcomes. This paper shows that, although not cost neutral as previously thought, NCI-UK is a low-cost way of improving the lives of people living with advanced dementia in care homes.

The lived experience of patients suffering from stroke and their perception of palliative care needs: a literature review

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Marwa Halabi ◽  
Inaam Khalaf ◽  
Salam Bani Hani
Keyword(s):  
Palliative Care ◽  
Literature Review ◽  
Lived Experience ◽  
Care Service ◽  
Health Care Service ◽  
Stroke Recovery ◽  
Care Needs ◽  
Middle Income ◽  
Content Type ◽  
Palliative Care Needs

Purpose This study aims to review the lived experience of patients suffering from stroke and describe their perception of palliative care needs. Design/methodology/approach A literature review search was conducted. Web of Sciences, SAGE, CINAHL, PubMed and Jordanian Database for Nursing Research databases were used to search the literature. Findings The findings of 37 articles were address palliative care approaches for patients with stroke, lived experiences of patients suffering from stroke and the experience, barriers and facilitators related to health-care service for stroke survivors. Originality/value This review indicated the importance of recognizing palliative care needs among patients suffering from stroke to improve post-stroke recovery. This study recommends further research, especially in low- and middle-income countries, to understand patients’ experiences and recognize the main palliative care needs that can be incorporated into interventions designed to improve the quality of life among them.

scholarly journals Commentary on “depression and people with a learning disability: a way forward”

2020 ◽  
Vol 25 (1) ◽  
pp. 22-25
Author(s):  
Peter McGill
Keyword(s):  
Learning Disability ◽  
Design Methodology ◽  
Social Care ◽  
Well Being ◽  
Care Provision ◽  
Care Needs ◽  
Eligibility Criteria ◽  
Psychological Well Being ◽  
Content Type

Purpose The purpose of this paper is to provide a commentary on Andrew Jahoda’s article “Depression and people with a learning disability: a way forward”. Design/methodology/approach The paper considers depression and other issues of psychological well-being from the perspective of the eligibility criteria for social care in England as enshrined in the 2014 Care Act. Findings There is a danger of issues of psychological well-being being seen as health rather than social care needs. A more integrated perspective is required. Originality/value The paper illustrates the importance of the role of social care provision in promoting the well-being of people with learning disabilities.

scholarly journals Exploring coping strategies of carers looking after people with intellectual disabilities and dementia

2014 ◽  
Vol 8 (5) ◽  
pp. 292-301 ◽  
Author(s):  
Bhathika D. Perera ◽  
Penny J. Standen
Keyword(s):  
Focus Groups ◽  
Intellectual Disabilities ◽  
Coping Strategies ◽  
Qualitative Methodology ◽  
Vital Role ◽  
Family Carers ◽  
Narrative Strategy ◽  
Content Type ◽  
Face To Face ◽  
People With Intellectual Disabilities

Purpose – Carers play a vital role in looking after people with intellectual disabilities (ID). Caring role can be stressful and challenging in nature. Carers use various coping strategies to deal with stressors. The purpose of this paper is to explore coping strategies of carers looking after people with ID and dementia. Design/methodology/approach – Qualitative methodology was used to explore coping strategies. Focus groups and face-to-face interviews were carried out. These interviews were transcribed and analysed using thematic analysis. Findings – Nine interviews with carers (six paid carers and three family carers) and two focus groups with nursing staff looking after people with ID were carried out. Three key themes of “Narrative”, “Strategy toolbox” and “Compartmentalisation” emerged from analysis. Narrative and strategy took box were further subthemed. Carers had narratives about them and the person they look after. These “narratives” helped them to deal with day to day stressors. They also carried a “strategy toolbox”, which they used when they were in stressful situations. Compartmentalisation helped them to separate their personal life from work life as a carer. Originality/value – Understanding carers’ coping strategies is important when planning services to help carers who play an important role in our society. Professionals can support carers to understand and improve their existing coping skills and help them to thrive in their role as carers.

Respecting the autonomy of the living and dying

2020 ◽  
Vol 28 (4) ◽  
pp. 379-385
Author(s):  
Jill Stavert
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Human Rights ◽  
International Human Rights Law ◽  
Advanced Dementia ◽  
Persons With Disabilities ◽  
Content Type ◽  
Care And Support ◽  
Recent Developments ◽  
Care And Treatment

PurposeThe purpose of this study is to inform those who are supporting persons who are dying and are responsible for planning, commissioning or delivering palliative care about the need to support and maximise the decision-making ability and choices of persons with advanced dementia or severe frailty.Design/methodology/approachThis article will consider the legal and human rights principles applicable to Scotland, and indeed to other jurisdictions, which govern decisions about care and treatment of persons with and without capacity and the application of these principles to palliative care situations.FindingsIt is important that those involved in the care and support of the dying are fully aware of the need to support and maximise their decision-making ability concerning palliative care and treatment choices.Research limitations/implicationsIt is a well-established legal and human rights principle that the decisions of a person with capacity must be respected, including decisions about palliative care and treatment at the end of life. Moreover, recent developments in international human rights law reinforce the message that this principle applies equally to all. Applying this principle into persons with advanced dementia or severe frailty therefore requires skilled assessment and supported decision-making in order to optimise capacity and respect autonomy.Originality/valueThe discussion applies the United Nations Convention on the Rights of Persons with Disabilities approach concerning equality of rights enjoyment and supported decision-making to palliative care and treatment situations.

Bridging community and prison for older adults: invoking human rights and elder and intergenerational family justice

2014 ◽  
Vol 10 (1) ◽  
pp. 55-73 ◽  
Author(s):  
Tina Maschi ◽  
Deborah Viola ◽  
Mary T. Harrison ◽  
William Harrison ◽  
Lindsay Koskinen ◽  
...  
Keyword(s):  
Older Adults ◽  
Human Rights ◽  
Service Use ◽  
Family System ◽  
Prison Population ◽  
Interdisciplinary Approach ◽  
Well Being ◽  
Care Needs ◽  
Cross Sectional ◽  
Content Type

Purpose – Older adults in prison present a significant health and human rights challenge for the criminal justice system. To date, there is no known study that provides a comprehensive examination or portrait of older persons in prison. The purpose of this paper is to understand individual, family, system, and community vulnerabilities that can complicate successful community reintegration for these individuals. Design/methodology/approach – This study provides a cross-sectional, descriptive analysis of biopsychosocial, spiritual, and prison use characteristics associated with a sample of 677 older prisoners, aged 50+, in a state-wide prison system. Findings – Results indicate the extent of diversity within this population based on demographic, clinical, social, legal profiles, prison service use patterns, and professional and personal contacts. Research limitations/implications – Due to the diversity within this population, an interdisciplinary approach is needed to address the complex social and health care needs of an aging prison population and to plan for their reentry. Practical implications – These findings suggest the need for holistic prevention, assessment, and interventions to interrupt the social-structural disparities that foster and support pathways to incarceration and recidivism. Originality/value – The human rights implications for the current treatment of older adults in prison include providing in-prison treatment that promotes safety, well-being, reconciliation, and seamless bridges between prison and community for older adults and their families. The True Grit Program is presented as an example of a humanistic and holistic approach of such an approach.

Sign in / Sign up

Export Citation Format

Share Document