Strategies to support older adults' mental health during the transition into residential aged care: a qualitative study of multiple stakeholder perspectives.

BACKGROUND: The move from home into residential care is one of the most stressful life experiences for older adults. 'Relocation stress' is a significant risk factor for anxiety and/or depression in aged care residents. Whether long-term or recently diagnosed, these mood disorders are associated with a decline in overall well-being, daily functioning and independence. The mental health needs of older adults are often poorly recognised and supported, including during the transition into residential care. Despite growing interest in how to facilitate this major life transition, few studies have taken the perspective of multiple stakeholders. The aim of this study was to explore resident, relative and staff experiences of the transition into residential aged care, and to identify strategies to support the mental health of older adults at this time. The role of pastoral care practitioners to facilitate transitions and support residents' mental health was also examined. METHODS: This phenomenological study involved individual interviews with 35 aged care residents, relatives and staff, between January and April 2021. Participants were selected using purposive sampling. Audio-recorded interviews were transcribed verbatim and supported by field notes. Data analysis followed Giorgi's steps for qualitative data analysis. RESULTS: Results were distilled into three main categories related to the overall transition experience, recognising and responding to residents' mental health needs, and tailoring support to individual needs. A novel contribution of this study relates to the need to address a broad misunderstanding of the role of pastoral care and subsequent under-utilisation of a potentially valuable resource. CONCLUSIONS: By describing transition experiences and the resources to support residents' mental health, findings of this study provide practical, 'real world' suggestions for reducing relocation stress. New resources developed from the findings include guides, checklists and short question-and-answer films, in which current residents and staff describe strategies to support mental health and overall quality of life. Similar resources could be used to support transitions in other care settings.

What constitutes 'good' home care for people with dementia? An investigation of the views of home care service recipients and providers.

BACKGROUND: Our objective was to explore what people receiving and providing care consider to be 'good' in-home care for people living with dementia. METHODS: We conducted 36 in-depth interviews and two focus groups with key stakeholders in Australia in the first quarter of 2018. Participants included those receiving care (4 people living with dementia, 15 family carers) or providing care (9 case managers, 5 service managers, 10 home care workers). Qualitative thematic analysis was guided by Braun and Clarke's six-step approach. RESULTS: Consensus was reached across all groups on five themes considered as important for good in-home dementia care: 1) Home care workers' understanding of dementia and its impact; 2) Home care workers' demonstrating person-centred care and empathy in their care relationship with their client; 3) Good relationships and communication between care worker, person with dementia and family carers; 4) Home care workers' knowing positive practical strategies for changed behaviours; 5) Effective workplace policies and workforce culture. The results contributed to the co-design of a dementia specific training program for home care workers. CONCLUSIONS: It is crucial to consider the views and opinions of each stakeholder group involved in providing/receiving dementia care from home care workers, to inform workforce training, education program design and service design. Results can be used to inform and empower home care providers, policy, and related decision makers to guide the delivery of improved home care services. TRIAL REGISTRATION: ACTRN 12619000251123 .

Self-Identity and Meaning in Life as Enablers for Older Adults to Self-Manage Depression.

Depression is the most common mental illness in older adults and is a leading cause of global disability. Generally, those who have a stronger sense of self-identity and find meaning in their lives tend to manage the symptoms of depression better than those who do not. Little is known about the association between self-identity, meaning in life and self-management of depression in older adults. The aim of this grounded theory study was to explicate how older adults with depression attempted to reclaim self-identity in ways that facilitated self-management. Data collection and analysis were informed by Corbin and Strauss' approach to grounded theory. Thirty-two older adults with a formal diagnosis of moderate depression participated in in-depth, semi-structured interviews. The core problem for participants related to their sense that they were not treated as individuals as they sought to receive and adapt to a depression diagnosis. This challenge was conceptualised as Struggling to maintain personal identity as an older adult with depression. By empowering themselves and striving for a meaningful existence, participants strived to master their current circumstances in ways that strengthened their sense of personal identity. This, in turn, supported their efforts to effectively manage their symptoms of depression and employ adaptive coping strategies that optimise well-being. Our findings identify the need for recovery-oriented models of interdisciplinary practice that enhance self-identity and meaning in life in older adults, in ways that support self-management of depression.

Strategies to optimize aged care volunteer recruitment and retention: A systematic review.

Population aging and resource constraints in aged care indicate an ever increasing need for volunteers in this growing sector. Volunteers in aged care have different expectations and experiences, as they typically form longer and closer relationships with residents, and perform important social support functions that may otherwise not be delivered. Tailored strategies to recruit and retain these volunteers are needed. The aims of this review were to identify the motivations and expectations of aged care volunteers, and to examine strategies that foster their recruitment, retention and role satisfaction. A systematic review of MEDLINE, PsycINFO, CINAHL, Embase and Cochrane Library was conducted. Selection criteria included qualitative and quantitative studies published in English, with no date restrictions. Volunteering roles were restricted to residential aged care services. The 18 studies eligible for review presented consistently strong themes across volunteer motivation, recruitment/retention, and satisfaction/involvement. Implications for policy and practice relate to the importance of setting clear role expectations, matching volunteers' skills with roles, ongoing training and support, and the need for operational frameworks that support volunteers with administrative processes, communication and complaint resolution. Improved volunteer management that enables the consistent provision of social support in this setting stands to improve residents' quality of life.

A Theory on the Components of Depression Self-Management in Older Adults.

Depression is the most prevalent mental illness in older adults and is expected to increase with population aging. Health care policy in higher income countries increasingly promotes the self-management of long-term conditions, including depression. Scant research has considered how older adults understand and practice self-management. In this article, we present the findings of a grounded theory study which sought to explain how older community-based adults experience and self-manage depression. Interviews and observations were conducted with 32 older adults with a formal diagnosis of moderate depression. Participants responded to a diagnosis of depression by Taking stock, Accessing support, and Reclaiming self-identity. Their efforts were influenced by perspectives on age and depression, access to the health care system, and individual capacity for self-management. Improved understanding of how to facilitate self-management strategies may enable older adults to remain independent and healthier for longer, while moderating the risk of a chronic condition worsening.

Factors influencing self-management of depression in older adults: a qualitative study.

Objectives: A considerable body of work addresses prevalence and treatment options for depression in older adults. However, less is known about their capacity to self-manage their depression. Effective self-management of depression has the potential to improve individuals' quality of life through information, empowerment and perceived control, while enabling more efficient health service utilisation. The aim of this paper was to identify the barriers and facilitators to self-management of depression in older adults.Method: A qualitative study comprising in-depth, semi-structured interviews with 32 older adults with a diagnosis of moderate depression.Results: Three over-arching themes captured the barriers and facilitators to participants' capacity to self-manage their depression. Perspectives on age and depression represented how views of older age and mental health influenced the approach to self-management. Ability to access the health care system concerned the ability to identify and engage with different services and support. Individual capacity for self-management reflected participants' views on and the resources required for effective self-management.Conclusion: This study offers a better understanding of the factors that positively or negatively influence older adults' ability to self-manage their depression. Strategies to improve self-management should address misconceptions about age and depression, and older adults' interest in and capacity to embrace self-management practices.

The Influence of a Successful Wellness-Illness Transition on the Experience of Depression in Older Adults.

This paper identifies the components of a successful wellness-illness transition on the experience and management of depression. Data collection and analysis were informed by Corbin and Strauss' approach to grounded theory. Exemplars and case studies are used to illustrate the findings. Three themes reflected participants' experiences of a wellness-illness transition relating to depression in older adults: Accepting a change in wellness-illness status, Adapting to the changeable nature of depression, and Creating new meaning. A change in wellness-illness status is interpreted through personal beliefs about depression, and the knowledge, skills and resources required to optimise well-being. Successful transitions were associated with improved experience and management of depression. The findings have implications for how older adults recognise and respond to symptoms of depression. Judicious advice and support from health professionals can facilitate wellness-illness transitions, thereby enhancing health and well-being outcomes for older adults with depression.

Experiences of family members supporting a relative with substance use problems: a qualitative study.

BACKGROUND: Affected family members (AFMs) play an important role in supporting relatives with alcohol and/or other drug (AOD) misuse. However, they frequently lack support and experience considerable challenges to their own well-being. AIM: To explore the experience of AFMs who support a close relative with AOD misuse. METHOD: Thirty-one AFMs were recruited through AOD helplines and through their social media accounts in the Australian state of Victoria. A semi-structured interview guide was used to inform data collection, focusing on their general experiences, impact of support-giving and support options. Interviews were audio-recorded and conducted by telephone. RESULTS: One overarching theme and six related subthemes were abstracted from the data. The overarching theme was conceptualised as Feeling overwhelmed by, and struggling with, the experience. Subthemes were as follows: Emotionally draining and exhausting, Maintaining constant vigilance: curbing social activities, Grappling with the financial impact, Struggling to cope with harmful family dynamics, Avoiding and containing aggression and Fearfulness and hopelessness about the future. CONCLUSION: Affected family members experienced wide-ranging harms, which affected their emotional, social and financial well-being, safety and family dynamics, and instilled a persistent sense of fearfulness and hopelessness about the future. The findings have implications for mental health nurses and other clinicians in AOD services to identify AFMs' needs and provide them with timely, accessible and appropriate support to help sustain their important role.

False gold: Safely navigating open access publishing to avoid predatory publishers and journals.

AIM: The aim of this study was to review and discuss predatory open access publishing in the context of nursing and midwifery and develop a set of guidelines that serve as a framework to help clinicians, educators and researchers avoid predatory publishers. BACKGROUND: Open access publishing is increasingly common across all academic disciplines. However, this publishing model is vulnerable to exploitation by predatory publishers, posing a threat to nursing and midwifery scholarship and practice. Guidelines are needed to help researchers recognize predatory journals and publishers and understand the negative consequences of publishing in them. DESIGN: Discussion paper. DATA SOURCES: A literature search of BioMed Central, CINAHL, MEDLINE with Full Text and PubMed for terms related to predatory publishing, published in the period 2007-2017. IMPLICATIONS FOR NURSING: Lack of awareness of the risks and pressure to publish in international journals, may result in nursing and midwifery researchers publishing their work in dubious open access journals. Caution should be taken prior to writing and submitting a paper, to avoid predatory publishers. FINDINGS: The advantage of open access publishing is that it provides readers with access to peer-reviewed research as soon as it is published online. However, predatory publishers use deceptive methods to exploit open access publishing for their own profit. Clear guidelines are needed to help researchers navigate safely open access publishing. CONCLUSION: A deeper understanding of the risks of predatory publishing is needed. Clear guidelines should be followed by nursing and midwifery researchers seeking to publish their work in open access journals.

Addressing the vexed issue of authorship and author order: A discussion paper.

AIMS: To review and discuss authorship and author order in the context of nursing and midwifery publications and to present a set of principles to guide and justify author order. BACKGROUND: Variation in author order trends is evident across different authors, disciplines and countries. Confusion and conflict between authors give rise to important issues concerning ethics and collaboration and may delay publication. Lack of transparency in authorship practices also impedes judgements when individual contributions are used in support of employment, promotion, tenure and/or research funding applications. DESIGN: Discussion paper. DATA SOURCES: A literature search of BioMed Central, Cumulative Index to Nursing and Allied Health Literature (CINAHL), MEDLINE with Full Text and PubMed for original peer-reviewed papers published in English between 2007 - 2017, in the disciplines of nursing and midwifery. IMPLICATIONS FOR NURSING: Much is written about authorship practices across disciplines and countries. Despite existing authorship guidelines, author order remains an area of confusion and contention. Disputes about authorship and author order have the potential to cause distrust and breakdowns in research relationships, thereby disrupting nursing and midwifery scholarship and research. The main issues concern honorary and ghost authorship, authorship versus acknowledgement, confusion about collaboration, author order, research students as co-authors, equal author credit and the need for explicit guidelines. CONCLUSION: Good communication and mutual respect are crucial to the authorship process. However, clear instructions are needed to guide decisions on authorship and author order. It is recommended that the "first-last-author-emphasis" be adopted uniformly internationally across nursing and midwifery research.

Understanding, choosing and applying grounded theory: part 1.

BACKGROUND: Grounded theory is one of the most widely used qualitative research methodologies. However, it is complex and frequently misinterpreted and misapplied. AIM: To provide a critical overview of grounded theory, to support neophyte researchers' understanding of a methodology for systematically generating theory from data. DISCUSSION: The uniqueness of grounded theory is evident in the way researchers explicate concepts from the data during research, rather than entering the field with a list of predefined concepts. Adherence to its rigorous standards enables researchers to contribute to knowledge and practice. CONCLUSION: Grounded theory is particularly useful in nursing and midwifery research, where it can be applied to a broad range of topics. Neophyte researchers should not be deterred by its rigorous standards, although time and effort are required to appreciate the similarities and differences between grounded theory approaches. IMPLICATIONS FOR PRACTICE: A clear understanding of its philosophical foundations and attention to its main features should underpin researchers' efforts to conduct a high-quality grounded theory study.

Understanding, choosing and applying grounded theory: part 2.

BACKGROUND: A fundamental decision when planning a study is the selection of the most appropriate approach to the research. Researchers choosing grounded theory must consider which approach is best suited to for collecting and analysing data. AIM: To enable nurse researchers to choose and apply a grounded theory methodology, using a worked example to illustrate the main elements and considerations. DISCUSSION: Grounded theory provides a helpful framework to guide data collection and analysis, and to generate theory from the data. It can also be used to modify or advance existing theories. CONCLUSION: Neophyte researchers need to understand the jargon, technical language and specific requirements of grounded theory to use it to its capacity. This supports the correct application of their preferred approach to grounded theory, and continuity between the study's question, aims and methods. IMPLICATIONS FOR PRACTICE: It takes time and effort to understand the different approaches of grounded theory, and to learn its rigorous standards. This paper offers guidance to nurse researchers by explaining fundamental decisions to be made when choosing and adopting a grounded theory methodology.

Paying patient and caregiver research participants: putting theory into practice.

AIM: To review and discuss the ethical and practical considerations about paying patient and caregiver participants in nursing research and, based on this review, to develop a set of guiding principles about payment of participants. BACKGROUND: To increase recruitment and retention, it is becoming increasingly common in nursing research to provide some form of payment to participants. The risk is that the promise of a payment may influence a patient or caregiver's decision to participate in research. However, research ethics protocols seldom provide explicit guidance about paying participants. Even where formal policies or fee schedules exist, there is little consistency in determining how payments should be calculated or administered. This has resulted in highly variable payment practices between locations, disciplines and institutions. DESIGN: Discussion paper. DATA SOURCES: PubMed, MEDLINE with Full Text, CINAHL and Health Source (Nursing/Academic Edition) were searched for terms related to paying research participants published between 2000 - August 2016. IMPLICATIONS FOR NURSING: Nurse researchers must comply with international, national and institutional ethical standards. Important ethical and practical considerations should guide the decision-making process about whether to pay research participants and how to determine the nature or value of the payment. Guiding principles can support researchers by highlighting key factors that may direct their decision-making in this regard. CONCLUSION: A deeper understanding of the fundamental ethical and practical considerations is needed to support researchers in their deliberations about paying participants in nursing research.

Improving mental health service users' with medical co-morbidity transition between tertiary medical hospital and primary care services: a qualitative study.

BACKGROUND: Mental health service users have high rates of medical co-morbidity but frequently experience problems accessing and transitioning between tertiary medical and primary care services. The aim of this study was to identify ways to improve service users' with medical co-morbidity care and experience during their transition between tertiary medical hospitals and primary care services. METHOD: Experience-based co-design (EBCD) qualitative study incorporating a focus group discussion. The study took place in a large tertiary medical service, incorporating three medical hospitals, and primary care services, in Melbourne, Australia. A purposive sample of service users and their caregivers and tertiary medical and primary care clinicians participated in the focus group discussion, in August 2014. A semi-structured interview guide was used to inform data collection. A thematic analysis of the data was undertaken. RESULTS: Thirteen participants took part in the focus group interview, comprising 5 service users, 2 caregivers and 6 clinicians. Five themes were abstracted from the data, illustrating participants' perspectives about factors that facilitated (clinicians' expertise, engagement and accessibility enhancing transition) and presented as barriers (improving access pathways; enhancing communication and continuity of care; improving clinicians' attitudes; and increasing caregiver participation) to service users' progress through tertiary medical and primary care services. A sixth theme, enhancing service users' transition, incorporated three strategies to enhance their transition through tertiary medical and primary care services. CONCLUSION: EBCD is a useful approach to collaboratively develop strategies to improve service users' with medical co-morbidity and their caregivers' transition between tertiary medical and primary care services. A whole-of-service approach, incorporating policy development and implementation, change of practice philosophy, professional development education and support for clinicians, and acceptance of the need for caregiver participation, is required to improve service users' transition.

Who speaks my language? Linguistic diversity among people living in Australian residential aged care facilities.

OBJECTIVES: Australia's migration programs mean that an increasing number of people living in residential aged care (RAC) were born in a non-main English-speaking country (NMESC) and have a preferred language other than English (LOTE). This study describes the number of such residents in aged care facilities in Australia and discusses the implications for their care. METHODS: This study presents a secondary analysis of the Australian Institute of Health and Welfare (AIHW) National Aged Care Data Clearinghouse 2020-2021 to examine the country of birth and preferred language of people living in RAC in each state and territory and the number of residents who are lone speakers of their language in their facility. RESULTS: Less than half (45 per cent) of the residents born in a NMESC had a preferred LOTE. Of those, 50 per cent spoke Italian, Greek or Cantonese. At least 60 other preferred languages were recorded, the majority with very few speakers. Australia-wide, more than one in five residents with a preferred top 20 LOTE are the lone speaker of their language in their facility. The proportion of lone speakers is highest in Tasmania, the ACT and Queensland. CONCLUSIONS: Understanding the extent of language diversity, location and linguistic isolation of people living in RAC is essential for planning to ensure residents with a preferred LOTE receive high-quality, individualised care. There is a need for consistent and timely data collection about the diversity of aged care residents and workers in this sector.

Facilitating advance care planning in the thriving retirement village setting.

OBJECTIVES: To investigate the factors that influence the adoption of advance care planning (ACP) in the retirement village setting. METHODS: Purposive sampling was used to recruit residents and staff from a retirement village in a regional town in Victoria, Australia. Data collected in semistructured interviews were analysed through a process of reflexive thematic analysis and coded in NVivo. RESULTS: Twenty participants, comprising 14 residents and six staff, participated in the study. Four main themes arose, relating to awareness of the ACP process, the logistics of ACP, the role of service providers in facilitating ACP, and trust in the process. Most residents were unaware of the ACP process, but thought the transition into a retirement village was a good time to prepare instructions. Being given information on ACP was appropriate, but participants agreed that staff should not be involved in the actual ACP process. Finally, concerns were raised about the extent to which participants could trust that their wishes would be followed. CONCLUSIONS: Viewed along a continuum of care, the retirement village setting is an appropriate point at which to inform and support the ACP process, particularly for providers offering incremental support in response to changing client needs. These findings add to the relatively limited literature on ACP in this setting and could inform the development of strategies and resources to support residents in the ACP process. In so doing, they support best practice for facilitating ACP across care settings.

Co-designing a dementia-specific education and training program for home care workers: The 'Promoting Independence Through Quality Dementia Care at Home' project.

Undertaking co-design with the end users of services has rapidly evolved as the best-practice approach to program design, development and implementation. Increased interest in using participatory co-design in dementia care has drawn attention to the need for evidence-informed methods for facilitating the meaningful involvement of people with dementia and their family carers in co-design activities. The aim of this paper is to describe the co-design framework used in the co-design of a dementia specialist training program for home care workers. The Promoting Independence Through quality dementia Care at Home program is a successful example of co-design methodology used across multiple project stages and with various stakeholder groups, including people living with dementia, family carers, home care workers, managers and researchers. Co-design methods were tailored to each stage, purpose, and stakeholder group, and to facilitate the involvement of people living with dementia. Findings provide unique insights into optimising input from co-design partners, including people living with dementia; the methodology, conditions and requirements for participants to co-design and implement ideas; and perspectives on the enablers and challenges of using co-design in this population. In this paper, we present a comprehensive approach for involving people living with dementia as active and equal contributors in inclusive and meaningful participatory co-design.

Promoting Independence Through quality dementia Care at Home (PITCH): a research protocol for a stepped-wedge cluster-randomised controlled trial.

BACKGROUND: Home care service providers are increasingly supporting clients living with dementia. Targeted and comprehensive dementia-specific training for home care staff is necessary to meet this need. This study evaluates a training programme delivered to care staff (paid personal carers) of clients living with dementia at home. METHODS: This study is a pragmatic stepped-wedge cluster-randomised controlled trial (SW-CRT). Home care workers (HCWs) from seven home care service providers are grouped into 18 geographical clusters. Clusters are randomly assigned to intervention or control groups. The intervention group receives 7 h of a dementia education and upskilling programme (Promoting Independence Through quality dementia Care at Home [PITCH]) after baseline measures. The control group receives PITCH training 6 months after baseline measures. This approach will ensure that all participants are offered the program. Home care clients living with dementia are also invited to participate, as well as their family carers. The primary outcome measure is HCWs' sense of competence in dementia care provision. DISCUSSION: Upskilling home care staff is needed to support the increasing numbers of people living with dementia who choose to remain at home. This study uses a stepped-wedge cluster-randomised trial to evaluate a training programme (PITCH) for dementia care that is delivered to front-line HCWs. TRIAL REGISTRATION: anzctr.org.au ; ACTRN12619000251123. Registered on 20 February 2019.

Volunteer-led behavioural activation to reduce depression in residential care: a feasibility study.

OBJECTIVES: Symptoms of depression are highly prevalent and under-treated in residential aged care facilities. Behavioural activation is a simple, cost-effective psychosocial intervention that might be appropriate to help reduce depression and improve well-being in this setting. The purpose of this study was to investigate the feasibility and efficacy of an 8-week, volunteer-led behavioural activation intervention designed for depressed aged care residents. METHOD: This feasibility study employed a single-arm design, where outcomes were measured at baseline, post-intervention and 3-month follow-up. Aged care residents with depressive symptoms were invited to participate, and healthy volunteers were trained to deliver the intervention. Intervention feasibility was assessed on six a priori-determined domains. Depression, anxiety and flourishing were included as outcomes using intention-to-treat analysis. RESULT: Seventeen aged care residents with depressive symptoms and 13 volunteers were successfully recruited within the expected 6-month timeframe. Both residents and volunteers were satisfied with the intervention (7/8), and there was a high (87%) completion rate. The intervention was associated with a large and statistically significant reduction in resident depressive symptoms, d = - 1.14, with the effect increasing to d = 2.82 when comparing baseline to 3-month follow-up. Anxiety reduced from mild symptoms at baseline mean = 6.17 (5.12) to the subclinical range post-intervention, mean = 3.53 (4.29) (g = 0.61, p = 0.03). CONCLUSION: This 8-week volunteer-led behavioural activation intervention was found to be feasible and acceptable to depressed aged care residents. The intervention was effective in ameliorating depression. A larger randomized controlled trial is warranted.

'I know they are not trained in dementia': Addressing the need for specialist dementia training for home care workers.

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well-being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community-based care for people with dementia can be challenging. Workers often lack training in dementia-specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person-centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in-depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers' understanding of dementia, person-centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers' lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.