Personhood and Dementia Care: A Qualitative Evidence Synthesis of the Perspectives of People With Dementia.

BACKGROUND AND OBJECTIVES: Personhood is considered the cornerstone of person-centered care for people with dementia. However, there is little research on personhood in dementia care from the perspective of the person with dementia themselves. This article presents a qualitative evidence synthesis of the experiences and perceptions of people with dementia on personhood in dementia care. RESEARCH DESIGN AND METHODS: A systematic search of nine databases was conducted. In addition to initial screening, CART analysis was used to determine the most relevant papers. Thematic synthesis was conducted on 20 papers. The CASP tool was used to examine the quality of the included papers. GRADE CERQual analysis examined confidence in the review findings. RESULTS: People with dementia experience many changes due to the disease and the experience of being cared for in different settings. Personhood is affirmed through personal interactions with family, friends, other care recipients, and formal caregivers, as well as through continued engagement in social and occupational roles. DISCUSSION AND IMPLICATIONS: The review has important implications for practice, regulation, and policy. The person and their personhood should be protected rather than undermined, and relationships should be enhanced not diminished by the formal care process. The focus should be on creating and amplifying opportunities for people with dementia to affirm the self through interactions with others and engaging in occupational and social roles to ensure continuity of self.

Telling a 'good or white lie': The views of people living with dementia and their carers.

OBJECTIVE: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or 'correct' the person and tell the 'truth', or tell a lie. This paper explores the concept of lying from the perspective of people living with dementia in the community and their informal/unpaid carers. METHODS: A descriptive qualitative study utilising focus groups to collect the data was conducted. Three focus group's with a purposive sample of people with memory problems (n = 14) and three focus group's with informal/unpaid carers (n = 18) were undertaken. Qualitative content analysis was used to analyse the data. RESULTS: All participants considered that blatant lying with the intention to deceive and do harm is not acceptable. However, telling a 'good lie' or 'white lie' to alleviate distress was in certain circumstances considered acceptable. The intention behind the 'lie' in their view had to be to do good, and the informal/unpaid carer telling the lie had to really 'know the person' and be cognisant of family preferences. Some informal/unpaid carers acknowledged that it may be acceptable for health care professionals to tell a 'good lie' or 'small lie' in certain circumstances. However, health professionals need to 'know the person' and need to consider informal/family caregivers' wishes. CONCLUSION: Lying was only considered acceptable in the context of knowing the person and when done with the intention not to harm or deceive, undertaken with empathy, and only for the purpose of mitigating the person living with dementia's distress.

Older Women's Experiences of Aging and Health: An Interpretive Phenomenological Study.

Objective: This interpretive phenomenological study explored older Irish women's experiences of aging and health related issues. Method: Data were collected using in-depth interviews with 23 older women (coresearchers). Data analysis followed the "Vancouver school of doing phenomenology" framework and included a meta-synthesis of individual case constructions. Results: "Retaining autonomy within a process of adaptation and continued engagement" describes the essential meaning of coresearchers' experiences. Four themes were identified: "Being in control: Balancing needs and supports," "Navigating a changing world," "Being connected and involved," "Trying to stay well." Discussion: Gender shapes older women's experience of aging, health, and ill health. Three major factors moderate their experience: autonomy and control, proactivity and adaptability, and staying engaged with life. The study concludes that aging, gender, and health are intrinsically linked and collectively shape older women's experience. This is an important consideration when planning gender-appropriate health care services for older women.

The experiences and perceptions of personhood for people living with dementia: A qualitative evidence synthesis protocol.

Background: Personhood in dementia is concerned with treating people living with dementia with dignity and respect, in a manner that supports their sense of self. It focuses on treating the person living with dementia as a person first and foremost. Supporting personhood in dementia is the key goal of person-centred care. Existing qualitative research examines what personhood means to the person living with dementia and explores what is important to their personhood and sense of self. However, to date little work has focused on synthesising these studies. Methods: This is a protocol for a qualitative evidence synthesis of personhood in dementia. The review examines qualitative peer-reviewed research of the perspectives and experiences of personhood for people living with dementia. A systematic search will be carried out on eight electronic databases and supplemented by other purposeful literature search methods. Title and abstract screening, and full text screening will be carried out by two authors independently. Included studies will be critically appraised. Thematic synthesis will be conducted on all of the included studies. Confidence in the review findings will be assessed using GRADE CERQual. Discussion: The findings from this synthesis will be useful to health care providers and policy makers seeking to understand what personhood means for people living with dementia. The findings will also inform optimal service provision, as well as outcome measures in dementia. PROSPERO registration: CRD42017076114 (21/11/2017).

Qualitative exploration of stakeholders' perspectives of involuntary admission under the Mental Health Act 2001 in Ireland.

There is international interest in, and continued concern about, the potential long-term impact of involuntary admission to psychiatric institutions, and the effect this coercive action has on a person's well-being and human rights. Involuntary detention in hospital remains a controversial process that involves stakeholders with competing concerns and who often describe negative experiences of the process, which can have long-lasting effects on the therapeutic relationship with service users. The aim of the present study was to explore the perspectives of key stakeholders involved in the involuntary admission and detention of people under the Mental Health Act 2001 in Ireland. Focus groups were used to collect data. Stakeholders interviewed were service users, relatives, general practitioners, psychiatrists, mental health nurses, solicitors, tribunal members, and police. Data were analysed using a general inductive approach. Three key categories emerged: (i) getting help; (ii) detention under the Act; and (iii) experiences of the tribunal process. This research highlights gaps in information and uncertainty about the involuntary admission process for stakeholders, but particularly for service users who are most affected by inadequate processes and supports. Mental health law has traditionally focussed on narrower areas of detention and treatment, but human rights law requires a greater refocussing on supporting service users to ensure a truly voluntary approach to care. The recent human rights treaty, the UN Convention on the Rights of Persons with Disabilities, is to guarantee a broad range of fundamental rights, such as liberty and integrity, which can be affected by coercive processes of involuntary admission and treatment.

Nurses', midwives' and key stakeholders' experiences and perceptions on requirements to demonstrate the maintenance of professional competence.

AIM: To present the qualitative findings from a study on the development of scheme(s) to give evidence of maintenance of professional competence for nurses and midwives. BACKGROUND: Key issues in maintenance of professional competence include notions of self- assessment, verification of engagement and practice hours, provision of an evidential record, the role of the employer and articulation of possible consequences for non-adherence with the requirements. Schemes to demonstrate the maintenance of professional competence have application to nurses, midwives and regulatory bodies and healthcare employers worldwide. DESIGN: A mixed methods approach was used. This included an online survey of nurses and midwives and focus groups with nurses and midwives and other key stakeholders. The qualitative data are reported in this study. METHODS: Focus groups were conducted among a purposive sample of nurses, midwives and key stakeholders from January-May 2015. A total of 13 focus groups with 91 participants contributed to the study. FINDINGS: Four major themes were identified: Definitions and Characteristics of Competence; Continuing Professional Development and Demonstrating Competence; Assessment of Competence; The Nursing and Midwifery Board of Ireland and employers as regulators and enablers of maintaining professional competence. CONCLUSION: Competence incorporates knowledge, skills, attitudes, professionalism, application of evidence and translating learning into practice. It is specific to the nurse's/midwife's role, organizational needs, patient's needs and the individual nurse's/midwife's learning needs. Competencies develop over time and change as nurses and midwives work in different practice areas. Thus, role-specific competence is linked to recent engagement in practice.

Nurses' knowledge of pain and its management in older people.

Aim To identify nurses' knowledge of pain and its management in older people in acute hospitals. Method A quantitative, descriptive, cross-sectional design was used to survey a convenience sample of nurses. Data were collected using the Pain in the Elderly Questionnaire. Results The overall mean total score on the questionnaire was 65%, with scores ranging from 7-100%. While there is no recommended score, results indicate lack of nurse knowledge. The four questions with the lowest percentage of correct scores were related to pharmacology. Less than 25% of nurses had recent pain management education. Conclusion These findings indicate a knowledge deficit among nurses regarding pain and its management in older people, particularly in relation to opioid management. To improve pain management, nurses caring for older people would benefit from participation in an education programme with clinical application, such as expert-led, real-life or simulation demonstrations rather than lecture/discussion format only.

Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies.

It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed. This review paper, drawing on prior work, identifies key strategies for the meaningful inclusion of persons with dementia within qualitative research studies, it examines the articulation of these strategies and shares how these strategies were operationalised within one national research study in Ireland. Strategies within the literature were categorised and then synthesized into a guide consisting of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE). The CORTE guideline was used to as a tool for analysing relevant research reports. CORTE is a synthesized account of grouped strategies that could be used to maximize the meaningful involvement of persons with dementia and can also provide a guide for reporting the strategies used so that researchers can learn from each other.

'Seeing me through my memories': a grounded theory study on using reminiscence with people with dementia living in long-term care.

AIMS AND OBJECTIVES: To understand people with dementia, staff and relatives perspectives on reminiscence, its impact on their lives and experience of care and care giving. BACKGROUND: The quality of life of people with dementia living in long-term care is an important question for providers and policymakers. Reminiscence is thought to have potential for increasing resident-staff interaction, thereby contributing to enhanced personhood for people with dementia. Relatively little is known about the effects of reminiscence on people with dementia or staff. DESIGN: This is a grounded theory study. This design was chosen because of its focus on understanding people's behaviour, interaction and response to events. METHODS: In-depth interviews were conducted with residents with dementia (n = 11), relatives (n = 5), healthcare assistants (n = 10), nurses (n = 9) and nurse managers (n = 3). RESULTS: Reminiscence enabled staff to see and know the person beneath the dementia. It acted as … a key revealing the person to staff, enabling them to engage with the person with dementia in a different way. Knowing the person enabled staff to understand (through the lens of the person's past) and sometimes to accommodate the person's current behaviour. CONCLUSION: The theory of 'seeing me (through my memories)' was generated from the data. This theory explains that through reminiscing and engaging with the person with dementia, staff begin to see the person (their personhood) through the mirror of their memories. RELEVANCE TO CLINICAL PRACTICE: This study found that reminiscence enhanced the experience of living in long-term care for residents with dementia and working in long-term care settings for staff.

Improving the quality of life for older people in long-term care settings.

Many governments across Europe and America set maintaining the quality of life (QoL) of older people living in long-term care as a key policy objective; however, much of the evidence reveals that life in many care environments is still routinized and institutionalized. QoL is a term that is widely used but poorly defined and understood. The focus of this Review is on identifying the components of QoL and reviewing strategies for improving QoL in long-term care. Six components of QoL were consistently identified across studies: autonomy, environment, connectedness, meaningful activity, independence and sense of self. A review of strategies for improving QoL revealed that the evidence of effectiveness across studies remains inconclusive. The judgment of quality was often hampered by inadequate details on the study design and the use of nonspecific and wide-ranging QoL tools. Furthermore, high-quality studies are required to determine effectiveness.

Policy-makers' views on impact of specialist and advanced practitioner roles in Ireland: the SCAPE study.

AIM: To ascertain and explore the views held by key healthcare policy-makers on the impact of clinical specialist and advanced practice nursing and midwifery roles. BACKGROUND: Specialist and advanced practice roles are common world-wide and were introduced in Ireland in 2000. After experiencing these roles for a decade, the views of healthcare policy-makers were sought as part of a national evaluation. METHODS: A qualitative, descriptive design was used. Following ethical approval, 12 policy-makers were interviewed in 2010, using a six-part interview schedule. RESULTS: Policy-makers believed that specialist and advanced practice roles resulted in better continuity of care, improved patient/client outcomes and a more holistic approach. These clinicians were also said to be leading guideline development, new initiatives in care, education of staff, audit and policy development. They lacked administrative support and research time. Budget cuts and a government-applied recruitment moratorium were said to hamper the development of specialist/advanced practice roles. CONCLUSION: Healthcare policy-makers believe that specialists and advanced practitioners contribute to higher quality patient/client care, particularly at a strategic level. IMPLICATIONS FOR NURSING MANAGEMENT: These roles could make an important contribution to future health service developments, particularly in relation to chronic-disease management and community care, where more advanced practitioner posts are required.

Reminiscence in dementia: a concept analysis.

This paper is a report of an analysis of the concept of reminiscence in dementia and highlights its uses as a therapeutic intervention used on individuals with dementia. No single definition of reminiscence exists in healthcare literature; however, definitions offered have similar components. The term life review is commonly used when discussing reminiscence; however, both terms are quite different in their goals, theory base and content. This concept analysis identified reminiscence as a process which occurs in stages, involving the recalling of early life events and interaction between individuals. The antecedents of reminiscence are age, life transitions, attention span, ability to recall, ability to vocalise and stressful situations. Reminiscence can lead to positive mental health, enhanced self esteem and improved communication skills. It also facilitates preparation for death, increases interaction between people, prepares for the future and evaluates a past life. Reminiscence therapy is used extensively in dementia care and evidence shows when used effectively it helps individuals retain a sense of self worth, identity and individuality.

The impact of reminiscence on the quality of life of residents with dementia in long-stay care.

BACKGROUND: There is increasing recognition of the potential use of reminiscence in maintaining or improving the quality of life of people with dementia. Despite being used widely in dementia care, evidence on the effectiveness of reminiscence remains uncertain. AIMS: This study aims to evaluate the effectiveness of a structured education-based reminiscence programme-the Dementia Education Programme Incorporating Reminiscence for Staff-for people with dementia residing in long-stay care settings in Ireland. METHODS: Dementia Education Programme Incorporating Reminiscence for Staff is a two-group, single-blind, cluster randomised trial conducted in long-stay residential care settings in Ireland. The primary outcome was the self-rated quality of life of residents as measured by the Quality of Life-Alzheimer's Disease instrument. RESULTS: Using an intention-to-treat analysis, we found that the estimated effect of the intervention on the quality of life of residents was a non-significant 3.54 (p = 0.1; 95% confidence interval -0.83, 7.90), expressed as the difference in mean improvement between the intervention and control groups. However, the per-protocol analysis yielded a significant effect for the intervention on the quality of life of residents of 5.22 (p = 0.04; 95% confidence interval 0.11, 10.34). CONCLUSIONS: Reminiscence may, in certain circumstances, be an effective care option for people with dementia in long-stay settings with potential to impact positively on the quality of life of residents.

Exploration of the meaning of connectedness for older people in long-term care in context of their quality of life: a review and commentary.

BACKGROUND: A link between 'quality of life' and 'connectedness' is emerging in the literature. However, there has been little debate on what 'connectedness' means and how it can be fostered in long-term care settings. This review examines the meaning of 'connectedness' in long-term care. AIM: This paper critically examines the meaning of 'connectedness' in the context of its contribution to the quality of life of older people living in long-term care settings. METHOD: Key databases (CINAHL, PsychInfo and Medline) were searched systematically. Fourteen papers and two book chapters met the inclusion criterion of papers exploring 'connectedness for older people in residential care'. CONCLUSIONS: The experience of connectedness for older people in long-term care settings is linked with quality of life and successful ageing. Fundamental prerequisites of connectedness for older people are: self-awareness, meaningful relationships with family and friends, involvement in meaningful activities and connections with wider society. However, barriers to these prerequisites are evident for many residents in long-term care settings. IMPLICATIONS FOR PRACTICE: Register and Herman (Advances in Nursing Science, 33, 2010, 53) identify six connections that combine to generate connectedness for older people. These connections are representative of the factors associated with increased quality of life for residents living in long-term care settings. The six connections are helpful in identifying areas to focus on when planning person-centred care.

The cost-effectiveness of a structured education pulmonary rehabilitation programme for chronic obstructive pulmonary disease in primary care: the PRINCE cluster randomised trial.

OBJECTIVE: To assess the cost-effectiveness of a structured education pulmonary rehabilitation programme (SEPRP) for chronic obstructive pulmonary disease (COPD) relative to usual practice in primary care. The programme consisted of group-based sessions delivered jointly by practice nurses and physiotherapists over 8 weeks. DESIGN: Cost-effectiveness and cost-utility analysis alongside a cluster randomised controlled trial. SETTING: 32 general practices in Ireland. PARTICIPANTS: 350 adults with COPD, 69% of whom were moderately affected. INTERVENTIONS: Intervention arm (n=178) received a 2 h group-based SEPRP session per week over 8 weeks delivered jointly by a practice nurse and physiotherapist at the practice surgery or nearby venue. The control arm (n=172) received the usual practice in primary care. MAIN OUTCOME MEASURES: Incremental costs, Chronic Respiratory Questionnaire (CRQ) scores, quality-adjusted life years (QALYs) gained estimated using the generic EQ5D instrument, and expected cost-effectiveness at 22 weeks trial follow-up. RESULTS: The intervention was associated with an increase of €944 (95% CIs 489 to 1400) in mean healthcare cost and €261 (95% CIs 226 to 296) in mean patient cost. The intervention was associated with a mean improvement of 1.11 (95% CIs 0.35 to 1.87) in CRQ Total score and 0.002 (95% CIs -0.006 to 0.011) in QALYs gained. These translated into incremental cost-effectiveness ratios of €850 per unit increase in CRQ Total score and €472 000 per additional QALY gained. The probability of the intervention being cost-effective at respective threshold values of €5000, €15 000, €25 000, €35 000 and €45 000 was 0.980, 0.992, 0.994, 0.994 and 0.994 in the CRQ Total score analysis compared to 0.000, 0.001, 0.001, 0.003 and 0.007 in the QALYs gained analysis. CONCLUSIONS: While analysis suggests that SEPRP was cost-effective if society is willing to pay at least €850 per one-point increase in disease-specific CRQ, no evidence exists when effectiveness was measured in QALYS gained. TRIAL REGISTRATION: Current Controlled Trials ISRCTN52 403 063.

COPD in primary care settings in Ireland: stories from usual care.

The aim of the PRINCE study was to determine the effectiveness of a structured education pulmonary rehabilitation programme for those living with COPD in primary care in Ireland. This qualitative element of the larger PRINCE trial aims to describe the constituents of 'usual care' for patients allocated to the control arm of the study. A descriptive qualitative study was used to explore the constituents of usual care. A convenience sample of participants (n=20) allocated to the usual care group were interviewed. Three main themes arose from the study: experiences of having and managing COPD, lifestyle advice, and factors that helped or hindered self-management. Usual care left many people grappling in the dark trying to manage their COPD. It was found that usual care was not at its optimum for people with COPD in the control arm of the PRINCE study.

An overview of interpretive phenomenology as a research methodology.

AIM: To provide an overview of interpretive phenomenology. BACKGROUND: Phenomenology is a philosophy and a research approach. As a research approach, it is used extensively in nursing and 'interpretive' phenomenology is becoming increasingly popular. DATA SOURCES: Online and manual searches of relevant books and electronic databases were undertaken. REVIEW METHODS: Literature review on papers on phenomenology, research and nursing (written in English) was undertaken. DISCUSSION: A brief outline of the origins of the concept, and the influence of 'descriptive' phenomenology on the development of interpretive phenomenology is provided. Its aim, origins and philosophical basis, including the core concepts of dasein, fore-structure/pre-understanding, world view existential themes and the hermeneutic circle, are described and the influence of these concepts in phenomenological nursing research is illustrated. CONCLUSION: This paper will assist readers when deciding whether interpretive phenomenology is appropriate for their research projects. IMPLICATIONS FOR RESEARCH/PRACTICE: This paper adds to the discussion on interpretive phenomenology and helps inform readers of its use as a research methodology.

The effectiveness of a structured education pulmonary rehabilitation programme for improving the health status of people with moderate and severe chronic obstructive pulmonary disease in primary care: the PRINCE cluster randomised trial.

OBJECTIVE: To evaluate the effectiveness of a structured education pulmonary rehabilitation programme on the health status of people with chronic obstructive pulmonary disease (COPD). DESIGN: Two-arm, cluster randomised controlled trial. SETTING: 32 general practices in the Republic of Ireland. PARTICIPANTS: 350 participants with a diagnosis of moderate or severe COPD. INTERVENTION: Experimental group received a structured education pulmonary rehabilitation programme, delivered by the practice nurse and physiotherapist. Control group received usual care. MAIN OUTCOME MEASURE: Health status as measured by the Chronic Respiratory Questionnaire (CRQ) at baseline and at 12-14 weeks postcompletion of the programme. RESULTS: Participants allocated to the intervention group had statistically significant higher mean change total CRQ scores (adjusted mean difference (MD) 1.11, 95% CI 0.35 to 1.87). However, the CI does not exclude a smaller difference than the one that was prespecified as clinically important. Participants allocated to the intervention group also had statistically significant higher mean CRQ Dyspnoea scores after intervention (adjusted MD 0.49, 95% CI 0.20 to 0.78) and CRQ Physical scores (adjusted MD 0.37, 95% CI 0.14 to 0.60). However, CIs for both the CRQ Dyspnoea and CRQ Physical subscales do not exclude smaller differences as prespecified as clinically important. No other statistically significant differences between groups were seen. CONCLUSIONS: A primary care based structured education pulmonary rehabilitation programme is feasible and may increase local accessibility to people with moderate and severe COPD. TRIAL REGISTRATION: ISRCTN52403063.

Life with chronic obstructive pulmonary disease: striving for 'controlled co-existence'.

AIMS AND OBJECTIVES: To understand the meaning of chronic obstructive pulmonary disease (COPD) for people and their response to this disease. BACKGROUND: COPD is a major cause of disability and death. The symptoms of COPD have the potential to impact on every aspect of a person's day-to-day life. To date most published qualitative studies have focused on the 'experience' of breathlessness and its impact on the person. Few studies have sought to 'understand' the meaning of COPD to people and their response to this disease. This study aimed to address this gap. DESIGN: Straussian grounded theory guided study design. Grounded theory was considered appropriate for this study because of its focus on how people respond to and act on the problems they encounter. METHODS: Data were collected through semi-structured interviews with 26 people with COPD. Study participants were recruited from general practices on the western seaboard of Ireland. RESULTS: Two interrelated categories were identified as contributing to 'co-existing with COPD': 'hiding' and 'battling'. 'Co-existing with COPD' was conceptualised as the core category. The potential to 'co-exist' with COPD was influenced by mediating factors. CONCLUSION: The Theory of Co-existing with COPD was generated from the data. This theory explains the delicate balance people with COPD maintain to 'co-exist with COPD'. 'Controlled co-existence' enables the person to feel in control and live life to the optimum. This is a fragile balance however and the unpredictability of COPD can tip the person into 'strained co-existence' or 'uncontrolled co-existence'. RELEVANCE TO CLINICAL PRACTICE: Understanding the experience of living with COPD and the balances involved in 'co-existing with COPD' can help health professionals provide more focused and empowered client care. Enabling people to achieve 'controlled co-existence' with COPD challenges health professionals to educate people with COPD on how to effectively manage their disease.