Using life story work to enhance care

Life story work has been promoted as a tool to enhance the care provided to older people, particularly those with dementia. The benefits for individuals, families and/or friends and for staff include improving understanding of the individual, promoting relationships and assisting in the delivery of person-centred care. However, professionals often experience difficulties using life story work. This article considers a range of life story tools and advice on gathering information about a person. It highlights the importance of leadership and developing positive cultures to ensure that life story work can be effectively sustained.     

Life story work in health and social care: systematic literature review

AIM: The aim of this paper is to review the literature on life story work in health and social care practice. BACKGROUND: Life story work as an intervention has been used with a number of health and social care clients, such as children people with learning disabilities, older people on medical wards and with older people who have dementia. It may help challenge ageist attitudes and assumptions, be used as a basis for individualized care, improve assessment, assist in transitions between different care environments, and help to develop improved relationships between care staff and family carers. However, to date there has been no attempt to collate the findings from published accounts. METHODS: A systematic search of the literature on life story work was conducted in February 2004, using nursing, medical and social science databases and a combination of thesaurus and free text search terms. This revealed over 1000 publications; the use of carefully constructed inclusion and exclusion criteria identified 51 relevant items. Fourteen were subsequently selected and reviewed using a set of reflective critical appraisal questions. FINDINGS: A range of methodological approaches has been adopted to explore the use of life story work with no one specific methodology prevailing. The work has been most frequently used with older people and people with a learning disability and life story books are the most common approach. Staff perceptions of life story work have been explored, but patient and carer views are less frequently reported. The findings of the studies are discussed in broad themes, offering some tentative recommendations for using life story work in practice. CONCLUSION: Evidence on the use of life story work is immature, leading to the recommendation for more research. Although appraising literature from a range of approaches is complex, there are some potentially far-reaching benefits of life story work in health and social care practice.     

Seeing the person behind the patient: enhancing the care of older people using a biographical approach

Recent policy statements have stressed the need for fundamental changes to the NHS, especially to the hospital care of older people. Person-centred care underpins such changes. If practitioners are to deliver person-centred care, then they need to learn more about the patient as an individual. One way that this might be achieved is through biographical approaches. This paper describes the findings of a developmental study undertaken over a 6-month period to investigate the introduction of a biographical approach to care on a unit in a NHS hospital. It concentrates on the views of the practitioners who used the approach. The study aimed to explore whether a biographical approach - in the form of storytelling - might be used to encourage person-centred practice. Using a practice development approach, the study explored the views of older people, their family carers and practitioners regarding their participation in life story work. Initial data were collected by focus groups with staff from a nursing home who regularly used life stories as a basis for care planning. Further data were collected through focus groups, semistructured interviews and observation - undertaken before and after the introduction of life story work - with older people, family carers and practitioners. Findings revealed that life stories helped practitioners to see patients as people, to understand individuals more fully and to form closer relationships with their families. Support workers also said how much they enjoyed using the approach to inform their care. Further longitudinal research is required to investigate biographical approaches more fully and to work more closely with practitioners to explore how biographical approaches can be undertaken as part of standard practice and be integrated into the culture and management of care.     

Enhancing partnerships with relatives in care settings

AIM: The aims of this project were to implement guidance that sought to involve carers of older people in decision-making processes, and to promote practice development through work-based learning. METHOD: Data were collected and analysed to examine how carer involvement was being managed on the wards. The data were then fed back to staff in each area and meetings were held to discuss which aspects of carer involvement were priorities for them. These were then matched with the four markers of satisfactory involvement identified in a previous study (Walker et al 1999). RESULTS: Several strategies were implemented to enhance carer involvement, including life story work, written communication books and a newsletter. Early feedback from the project highlighted benefits for staff and relatives, which included greater confidence in negotiating care and closer relationships between relatives and staff. CONCLUSION: If carer involvement in care is to become a reality, staff need support and encouragement to develop meaningful relationships with relatives and to value their expert opinions.     

Developing person-centred practice: nursing outcomes arising from changes to the care environment in residential settings for older people

mccormack b., dewing j., breslin l., coyne-nevin a., kennedy k., manning m., peelo-kilroe l., tobin c. & slater p. (2010) Developing person-centred practice: nursing outcomes arising from changes to the care environment in residential settings for older people. International Journal of Older People Nursing 5 , 93–107 Aim. To present the nursing outcomes from the evaluation of developments in the care environment in residential settings for older people. Design. The evaluation data reported here is derived from a larger national programme of work that focused on the development of person-centred practice in residential services for older people using an emancipatory practice development framework. A multi-method evaluation framework was utilised. Outcome data were collected at three time points between December 2007 and September 2009. The data reported here were collected using an instrument called the ‘Person-Centred Nursing Index’. Findings. Heavy workload was the main cause of stress among nurses. Personal and professional satisfaction with the job was scored highest by the total sample of nurses. Nineteen factors were examined using the Person-Centred Nursing Index. Statistically significant changes were observed in 12 of these. In addition, there were statistically significant changes in nurses’ perceptions of caring, indicating a shift from a dominant focus on ‘technical’ aspects of care, to one where ‘intimate’ aspects of care were more highly valued. Relevance to clinical practice. The findings highlight the importance of the development of effective teamwork, workload management, time management and staff relationships in order to create a culture where there is a more democratic and inclusive approach to practice and space for the formation of person-centred relationships.     

Using biography to enhance the nursing care of older people

This article describes how the use of the biographical approach in nursing practice should enable a fuller understanding of older people as individuals, based on their lived experience. This, in turn, should affect the way in which nurses work with, and care for, older people, encouraging person-centred practice. First, drawing on a life story, the article describes the ways in which people's accounts of their past lives may provide an insight into their present needs, priorities and aspirations; it also helps to reveal and challenge our assumptions about later life. Second, the article discusses why the biographical approach is particularly appropriate for the care of older people in continuing care settings and how this approach could be undertaken.     

Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts

moyle w., murfield j.e., griffiths s.g. & venturato l. (2012)?Assessing quality of life of older people with dementia: a comparison of quantitative self-report and proxy accounts. Journal of Advanced Nursing68(10), 2237-2246. ABSTRACT: Aims. This article reports on a study of quality of life of older people with dementia, as assessed by the person with dementia, family carer and care staff. Background. People with dementia can give meaningful assessments of their quality of life, but these often differ from proxy ratings. In understanding this discrepancy, the influence of age, extent of cognitive impairment and activity limitation has been investigated. A lack of conclusive associations between quality of life ratings and these variables indicates a need for further research. Methods. Fifty-eight triads comprising the person with dementia, family carer and member of care staff from four long-term care facilities were surveyed on the Quality of Life-Alzheimer's Disease questionnaire between August and December 2007. Results. There was an important difference in the Quality of Life-Alzheimer's Disease questionnaire total mean scores between groups, with the person with dementia providing the highest ratings. Level of impairment in Activities of Daily Living had an important effect on quality of life ratings, with proxies, particularly care staff, providing lower ratings when there was greater activity limitation. This was not replicated for assessments made by the person with dementia. Age or level of cognitive impairment did not influence any ratings. Conclusion. People with dementia can give assessments of their quality of life. However, discrepancy in ratings, with greater activity limitation affecting proxy ratings but not those made by the person with dementia, indicates the importance of including both self-report and proxy measures in research and care planning.     

The fragmented story of pain: a saga of economic discourse, confusion and lack of holistic assessment in the residential care of older people

The long-standing problem of overlooked and/or undertreated pain experienced by so many older people living in Australian residential care facilities condemns these people to a life robbed of quality. Such a degree of suffering experienced by older people calls into question the pain assessment skills of staff who work in residential care. However, the problem of undetected and unresolved pain experienced by older people is not simply a skill or knowledge issue. It is much broader than that. In this paper we portray pain as likened to a story; a narrative that only the older person, as the author, can impart and one in which only they can communicate their experience of pain. Nevertheless, as opposed to seeking the older person's pain narrative, nurses attempt to measure the immeasurable. In part, their actions relate to the confusing terminology which envelops pain assessment. However, political policy and economic discourse also influences nurses' pain assessment practises to the detriment of older people and the profession of gerontological nursing. Discussion in this paper includes the experience of pain for the older person, an overview of the specific role of pain-screening tools compared with the requirements of a person-centred pain assessment, and person-centred pathways to help nurses and others interpret and heed the older person's pain story. Analysis also incorporates the argument that current and previous Federal Government funding tools for residential care subtly impact on holistic pain assessment causing confusion for caregivers and fragmentation of the older person's pain story.     

'It's easier just to separate them': practice constructions in the mental health care and support of younger people with dementia and their families

There is no standard model of specialist care for younger people with dementia (onset before the age of 65 years) and specialist service provision varies widely throughout the UK. In order to gain a clearer picture about ways in which clinical staff work with younger people with dementia, semi-structured interviews were conducted with dementia care staff working in the north-west of England. Interviews focused on exploring daily working practices and the meaning placed on clinical decision making when involving family/carers in routine practice. Content analysis generated three core themes: (1) Maintaining Separation: how clinical staff conceptualize the meaning of 'family' in the provision of dementia care services; (2) Providing Practical Help: the focus in care provision on assisting families with aspects of daily life such as finances, education and physical care; and (3) Acknowledging the Family Context: how staff understand and interact with family members in an attempt to initiate care, utilizing biographically informed practice. By understanding how staff view their role in providing younger people with dementia with effective, high-quality dementia care, it is anticipated that a more family-centred approach can be integrated into already established patterns of working that more holistically meet the needs of this group.     

Development and acceptability of the person-centred observation and reflection tool for supporting staff and practice development in dementia care services

Background

Observational tools can support the understanding of the complex needs of older people with dementia and aid delivery of person-centred care. However, existing tools are complex and resource intensive to use.

Objectives

To develop and evaluate the acceptability and feasibility of a low-resource, observational tool to support staff reflection and practice development.

Methods

Intervention development of the Person-Centred Observation and Reflection Tool (PORT) and acceptability and feasibility study, using surveys and focus groups in the UK, Norway and Spain.

Results

PORT was reported as easy, accessible and acceptable to use. The observation was identified as powerful for individual staff development and provided an evidence-based source for underpinning individualised care planning. Potential time challenges associated with implementation were identified.

Conclusion

Initial evaluation indicates PORT is an acceptable and feasible tool for use in health and social care settings for older people. Further research is needed on implementation models and the impacts of PORT use.

Implications for Practice

PORT may be a useful tool to support individual staff development in care settings and person-centred care planning for people with dementia.     

Explanatory models of dementia: links to end-of-life care

We will describe four models used to understand dementia: as a neurological condition; as a neuro-psychiatric condition; as a normal part of ageing; and seeing dementia from a person-centred perspective. Adopting the last of these allows an engagement with palliative care that has the potential to enrich the end-of-life experience of people with dementia, of their families and of the professional care staff who work with them. In this article, it will be argued that our perceptions of what is possible for practising person-centred care at the end of life are constrained by the paradigms we work within. There is developing evidence about how approaches to end-of-life care for people with dementia can move beyond what was, at best, therapeutic pessimism and at worst ill-treatment towards something that optimizes the capacities of those with dementia and mobilizes imaginative care practice.     

Using drama to improve person-centred dementia care

kontos p.c., mitchell g.j., mistry b. & ballon b. (2010) Using drama to improve person-centred dementia care. International Journal of Older People Nursing 5 , 159–168 Aims and objectives. We implemented a 12-week drama-based educational intervention to introduce to dementia practitioners person-centred care that emphasizes the notion of embodied selfhood (defined as non-verbal self-expression). Background. Person-centred dementia care guidelines emphasize the assessment of individual needs, and where appropriate, the use of non-pharmacological interventions before resorting to pharmacological management. However, dementia care is not consistent with these guidelines suggesting conceptual limitations and reliance on passive knowledge translation strategies. Design and methods. Focus groups and semi-structured interviews with practitioners (n = 24) in two nursing homes in central Canada were undertaken to assess the effectiveness of the drama-based components of the intervention. Results. Our findings suggest that drama was effective as an educational modality, and helped implement the person-centred approach into practice. Significant practice outcomes included: new awareness that residents’ body movements and dispositions can convey meaning; seeking biographical information from families; increased time efficiency; and supporting residents’ independence. Conclusions. Our findings make an important contribution to person-centred dementia care by broadening the notion of personhood, and by facilitating implementation using drama. Implications for practice. As an enhancement of person-centred care, the support of embodied selfhood may significantly improve residents’ quality of life, quality of care, and practitioners’ care-giving experience.     

What constitutes good care for people with dementia?

Person-centred care for people with dementia is an aspiration of both family and professional carers, but what constitutes person-centred care and how it can be achieved is less clear. This article describes a Swedish study in which in-depth interviews were completed with both family and professional carers of people with dementia with the purpose of exploring what they considered to be "best care". Important areas of similarity and difference were identified and the results suggest that both groups of carers need to work closely together if person-centred care is to become a reality.     

A survey of staff attitudes and responses to people with dementia who are aggressive in residential care settings

Aggression is reportedly common among older people with dementia in residential care. The attitudes of staff in care homes and strategies they use are under researched. Theoretical models that may be used to both understand and respond to such behaviour exist. They are the standard and person-centred paradigms. The aim of this study was to explore the views of nursing staff about aggressive behaviour in people with dementia and strategies used in practice. A survey of the attitudes of staff in six dementia care units using the Management of Aggression in People with Dementia Attitude Questionnaire was conducted including an audit of aggressive incidents using the Staff Observation Aggression Scale-Revised over a 3-month period. Staff expressed views reflective of a person-centred as opposed to standard paradigm. They viewed aggressive behaviour by people with dementia as deriving from the environment, situation or interactions with others. Participants strongly supported interpersonal means of responding to aggression, the moderate use of medication, and were largely opposed to physical restraint. Aggressive incidents were managed using less intrusive strategies such as distraction and de-escalation. Responses to aggressive behaviour, while pragmatic, were largely underpinned by a person-centred ethic as reflected in the attitudes expressed by staff.     

The senses in practice: enhancing the quality of care for residents with dementia in care homes

Aim. The study aimed to develop, deliver, and evaluate a training programme in care homes to enhance the quality of care for people living with dementia based on the principles of relationship‐centred care expressed through the Senses Framework. Background. There are increasing numbers of people living with dementia worldwide with a growing proportion requiring residential long‐term care. This makes the quest for enhancing the quality of care and quality of life for people with dementia ever more pressing. Design. A mixed‐methods design was used adopting a Practice Development approach. The findings from one care home in the North West of England are reported. Methods. Eight facilitated workshops based on the principles of relationship‐centred care were completed and evaluated in 2010, using pre‐ and postintervention design. A focus group was undertaken with staff on completion of the study to gain a more comprehensive understanding of the practice/training context, augmented by case examples of changes in practice identified from the study workshops. Results. Structured questionnaires were used to profile the care home before and after the training. Following the workshops, staff felt more able to collect and use biographical information. In particular, staff reported how this information supported them to initiate meaningful conversations with the person with dementia as part of everyday care routines, thus improving overall feelings of well‐being. Conclusion. Using a biographical approach to care planning structured through the Senses Framework helped staff to develop a greater understanding of the person with dementia.     

The challenges of achieving person-centred care in acute hospitals: A qualitative study of people with dementia and their families

Background

Person-centred care has been identified as the ideal approach to caring for people with dementia. Developed in relation to long stay settings, there are challenges to its implementation in acute settings. However, international policy indicates that acute care for people with dementia should be informed by the principles of person-centred care and interventions should be designed to sustain their personhood.

Objectives

Using Kitwood's five dimensions of personhood as an a priori framework, the aim of this paper was to explore the way in which current approaches to care in acute settings had the potential to enhance personhood in older adults with dementia.

Design

Data collected to explore the current experiences of people with dementia, family carers and co-patients (patients sharing the ward with people with mental health problems) during hospitalisation for acute illness were analysed using a dementia framework that described core elements of person centred care for people with dementia.

Settings

Recruitment was from two major hospitals within the East Midlands region of the UK, focusing on patients who were admitted to general medical, health care for older people, and orthopaedic wards.

Participants

Participants were people aged over 70 on the identified acute wards, identified through a screeing process as having possible mental health problems. 34 patients and their relatives were recruited: this analysis focused on the 29 patients with cognitive impairment.

Method

The study involved 72 h of ward-based non-participant observations of care complemented by 30 formal interviews after discharge concerning the experiences of the 29 patients with cognitive impairment. Analysis used the five domains of Kitwood's model of personhood as an a priori framework: identity, inclusion, attachment, comfort and occupation.

Results

While there were examples of good practice, health care professionals in acute settings were not grasping all opportunities to sustain personhood for people with dementia.

Conclusions

There is a need for the concept of person-centred care to be valued at the level of both the individual and the organisation/team for people with dementia to have appropriate care in acute settings.     

Support for carers of people with dementia during hospital admission

The aim of this study was to help develop support services for carers of people with dementia on admission to a district general hospital. Qualitative methodology was used in the form of individual semistructured interviews. These interviews suggest that service developments need to take into account the individual need of each carer. Identified themes included communication, vulnerability of the carers and the need to develop a therapeutic relationship with the carer as well as the person with dementia. Recommendations for change include a letter introducing the dementia specialist nurse to be given to carers, a poster in wards across the trust to support the letter; and workshops on dementia care for staff with emphasis on the need to work in partnership with informal carers.     

Dementia, dignity and quality of life: nursing practice and its dilemmas

manthorpe j., iliffe s., samsi k., cole l., goodman c., drennan v. & warner j. (2010) Dementia, dignity and quality of life: nursing practice and its dilemmas. International Journal of Older People Nursing 5 , 235–244
doi: 10.1111/j.1748-3743.2010.00231.x Aims. The need for healthcare practitioners to respect the dignity of older people is widely recognised in England, where it has been given attention by politicians, professionals and health service regulators. This article aims to provide examples of how such ambitions may be used in practice development. Methods. This article reports the use of five vignettes discussed by dementia care practitioners that explored the areas of dementia diagnosis, lying, incontinence, behavioural and psychological distress, and end of life care. Findings. Each vignette promoted discussion of differences of perspectives about the ways to enhance the dignity of people with dementia in hospital, care home and community settings. The discussion confirmed that while dignity may be one quality indicator of good care potentially enhancing quality of life, it is not always straightforward. It may be more easily conceptualised when talking of physical care and treatment than other areas. Conclusion. The opportunity to debate the subject and to discuss practice examples revealed differences of opinion and moral perspectives between practitioners about the use and relevance of the term dignity. These need to be acknowledged in any debates about objective and subjective definitions of quality of life.