Community based care and quality of life in learning difficulties and dementia: a research journey

This commentary aims to convey my publications on community based care and Quality of Life (QOL), in Learning Difficulties (LD), and Dementia care. My rationale through this journey aims to critique my earlier observation, assessments, and interview findings and theory, in research care practices and policy. I further argue for reconceptualising care and QOL research methodology, underpinned by phenomenological theory and research focussing on service user lived experience and open dialogue between care disciplines. My contributions to knowledge in LD focuses on service user life experiences and varying QOL in private sector care homes, and observation of differences in quality of interaction in day-centre settings. Life experiences in LD residential care significantly changes over time in relationships; opportunities and freedom of choice, comparing poorly with the general population. The LD residential care research and LD day-centre observation is critiqued drawing on Social Role Valorisation (SRV) theory, and objective and subjective QOL. My Dementia research compares traditional, enhanced traditional and social models of care by setting. The social model provides more choice, control, recreation, privacy and social interaction, than traditional and enhanced-traditional models. Further work shows significant gender differences in interactions with staff in Dementia care. A lack of implementation of policy concerning a normal community based life in LD, is noted in residential and day-centre care. The social model setting’s policies and practice in Dementia care, is noted as more ‘enlightened’ and showing more positive interaction. Gender disparity findings in care interactions in Dementia is salient to practice and policy intervention, and my subsequent training program relates directly to practice by addressing quality of interaction training. My epistemic ‘shift’ escapes the ‘natural sciences’ method by proposing discursive and phenomenological enquiry into lived experiences of service users, in a practice and policy context of trans-disciplinary discourse promoting relational and compassionate care

Deconstructing Caring and Authentic Measurement

Abstract Background: This paper explores a deconstruction of care through looking at hermeneutic methods and their role in a 'stripping back' or deconstruction of the processes and outcomes of care. The societal structures in which care is delivered and the undoubted 'power' operating downwards on both carer's and cared for is often overlooked in current research. Methodology: It is proposed that Foucauldian discourse analysis could be a useful tool in the deconstruction of care. Further methods based in interpretative phenomenology such as Interpretative Phenomenological Analysis could further deconstruct what it means to care at a more individual level within this wider societal context of caring. Results: More authentic measures would be obtained and measures based inherently in the wider 'lived experience' of carers and those they care for, moreover phenomenological analysis in itself could produce more authentic measures of care, through its emphasis on individual interpretation and 'meaning' and how this operates in the caring scenario. Conclusions: This process of deconstruction in order to get a more authentic picture of and measures of the meaning of caring would be useful in the training of management and front line care staff

Quality of Life for Adults with Learning Disabilities in Private Residential Care: Monitoring Aspects of Life Experiences Over Time

The Quality of Life (QoL) of a sample of 56 adults with Learning Disabilities was studied longitudinally over 18 months while they lived in community-based private residential homes. Six homes participated in the study. The Life Experiences Checklist (L.E.C) Ager, 1990, 1998), which considers a person’s home environment, leisure, freedom, relationships and opportunities, was used as a measure of QoL. The L.E.C was administered to participants on three occasions at approximately six-monthly intervals. Simple feedback reports giving overall results for the L.E.C (and other measures) were produced for each home at the end of each of these three phases. The L.E.C. results showed that overall participants’ QoL changed significantly over the course of the study, with assessed QoL peaking at phase two after homes had received the first feedback report, and decreasing to near phase one levels by the end of the study. People living in one of the homes, however, sustained the observed improvement in QoL over time. Comparisons were drawn between the L.E.C results for the sample and the general population living in the same area. The sample experienced a lower QoL than the general population regarding Relationships, Opportunities and Freedom L.E.C. sub-scales and had a comparable QoL regarding the Home sub scale, and higher scores with respect to the Leisure sub-scale. Results are discussed in terms of subjective and objective QoL measurement as an indicator of quality of service provision and in particular the effects of feedback and monitoring per se. It is apparent that in the absence of intervention no sustained improvements in QoL are seen in this sample

Quality of Staff Service User Interaction in Two Day Centres for Adults with Learning Disabilities

This study involves quality of interaction between Day Centre staff and Service-Users with Learning Disabilities in two Day Centres (Dc1 n=50, Dc2 n=247). The Quality of Interactions Schedule (QUIS) was applied within an eight month prospective design, involving 32 visits which constructed a ‘typical day’ composed of 20-30 minute observational sessions within each Day Centre. The largest proportions of interactions were of a positive nature (87%) across both Day Centres. More positive care interactions were seen in Dc1 and significantly higher rates of positive interactions in Dc1. The greatest use of Verbal and Non-verbal interaction was observed in Dc1. Service users initiated more of the interactions in Dc2. Lengthier verbal interactions were seen in Dc1 and conversely greater amounts of short verbal interactions were seen in Dc2. Within both centres time-tables that were inspected indicated similar proportions spent in: Work, Leisure, Education, Community and Social skills sessions. In comparison to previous studies a relatively low proportion of activities were community based and social skills orientated. Results are framed within comparable observational studies in Day Centres; differences in measurement characteristics employed (Cummins, 2000, 2002) and service evaluation of quality of life in Day centres for adults with Learning Disabilities. Reliability and validity of results were also examined

Caring, Quality of Life and Service Provision: a new perspective

How Quality of Life and Care is conceptualized in highly complex care environments and the need to appreciate constructionist elements alongside empirical measurement for a complete portrayal of the entity

Caring: what we and those we know may be missing.

A distinguishing feature of Psychology is its rigorous scientific measurement and assessment. This is applied to a diverse range of Psychological phenomenon not least to Service Evaluation, Quality of Life research and: How others are cared fo

Caring, Quality of Life and Service provision: a perspective

This paper features Quality of Life (QoL) assessment in care provision, including the author’s own research with Alzheimer’s Disease and residential and day care services for adults with Learning Disabilities. Features of epistemology, methodology and methods are examined which may be unchallenged in the rush for objective empirical data. These unquestioned features may impede the development of theory and practice in this field. Questions include: What is meant by QoL in this type of highly artificial socially complex environment? What are the underlying assumptions in the way QoL is measured? Have underlying philosophical assumptions informed theory and aided understanding of QoL? What about the beliefs and attitudes of front line staff, those involved with clients? How do political, policy and other aspects of ‘praxis’ operate in caring environments? Rather than QoL and embedded services being measured in empirical terms, there is space available for a constructionist conceptualization; the latter need not sit uneasily with the former. The reality of, and within, care delivery processes should be challenged. Elements of hermeneutic enquiry and phenomenological psychology could help decipher the manifestations of the above phenomena, via accounts of the lived experiences and personal accounts of staff and carers

An evaluation of two models of long-term residential care for elderly people with dementia

This article reports the findings of a prospective study of two residential units for elderly people with dementia: a community hospital ward (unit 1) providing an enhanced version of traditional hospital care and a scheme developed in partnership with a charity (unit 2) operating an explicit policy emphasizing resident choice, opportunity, support and independence. Residents, staff and unit policy were assessed at baseline in long-stay mental hospital wards, and at 6 months and 12 months after relocation. The Quality of Interactions Schedule (QUIS) was carried out on one occasion on a comparison long-stay mental hospital ward, at 12 and 24 months in unit 1 and at 6 and 12 months in unit 2. At 12 months, there was an increase in the quality but not the number of staff- resident interactions observed in unit 1, compared to the long-stay ward: both number and quality had improved on this unit at 24 months. Much larger increases in number and quality of interactions were observed in unit 2 at both 6 and 12 months. These changes were associated in unit 2 but not unit 1 with a decrease in observed depression, no decline in self-care (ADL) and improvement in communication skills over the follow-up period. There was a significant excess mortality in the unit 2 cohort at 6 months, but there was no difference at 12 months. At 12 months, staff on both units reported good levels of job satisfaction and morale

Gender and interactions between care staff and elderly nursing home residents with dementia

Objective. This study explores the relationship between gender and the interactions of care staff and elderly people with dementia in residential care. Design. Non-participant, time-sampling observation and coding of interactions between staff and residents. Setting. 36-bed independent (not-for-profit) long-term care unit. Subjects. 36 elderly people with dementia (19 men and 17 women); 37 care staff (30 women and 7 men). Measures. The Quality of Interactions Schedule (QUIS). Results. Male residents initiated significantly more interactions with staff than female residents. Men did not initiate interactions with female staff significantly more often than with male staff. Women did not initiate any interactions with male staff. Female staff initiated more interactions with residents than did male staff. Both male and female staff initiated a higher proportion of interactions with male residents than with female residents. Conclusions. These findings suggest that gender may be a significant factor determining the rate of interactions between staff and residents in residential care, but further studies are required to confirm their generalizability across settings