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Table 15 Qualitative Study Design – Support Worker Roles

From: What is the effectiveness of the support worker role for people with dementia and their carers? A systematic review

Article Sample Intervention Control Outcome Measures Outcomes/Results Conclusion
Boughtwood et al., (2011) [57]
N = 24 multicultural community link workers from four Australian culturally and linguistically diverse communities (Arabic, Chinese, Italian and Spanish) • Focus of this study was on workers’ perspectives on the dynamics and management of family caregiving for dementia in culturally and linguistically diverse communities
• Multicultural workers provide health education and promotion, community development, information and support groups, and to a more limited extent case work
N/A • Interviews with multicultural workers
• Field notes with description of participants, settings, reflections on interview
• Three main themes were identified: cultural and familial norms pertaining to illness and older people; understanding and naming the term ‘carer’; and patterns in family caregiving.
• A number of sub themes were also identified including: keeping dementia in the family; judged by the community; women as carers; children carers; spousal carers; and family sharing care.
• (e.g. expectation that elderly people would be cared for by one or more family members usually women, variations of “keeping dementia in the family”
This qualitative study found that multicultural workers perceive and experience many different influences on decisions made about family caregiving including: cultural expectations about what is seen as appropriate behaviour for individuals and families as well as the relationship carers have with the person living with dementia which was sometimes perceived as linked to culture and practical considerations like financial commitments.
Burton et al., (2005) [53]
N = 16 client cases
N = 2 Admiral Nurses interviewed 16 times about the individual cases
• The aim of the study was to examine the individual decision-making processes of Admiral Nurses in relation to referral management including: how decisions were made regarding referrals and what factors influence this decision making process N/A • Case file analysis of cases to identify appropriate cases over a 6 month period for detailed exploration
• Interviews with Admiral Nurses
• Four themes influence Admiral Nurse’s decision making: Complexity of carer’s situation; Admiral Nurses’ perception of their specialist role; mode of referral and information received and cross-functional working/trust-wide provision.
• The most significant factor that came out of the data was the perceived complexity of the presenting situation, one in which both the circumstances of the carer and the person with dementia were considered. It was also shown that decision-making was influenced where significant risk was identified to either party.
This qualitative study found that the decision to offer the Admiral Nursing service to carers was influenced not only by perceived need but also by the nurses feeling professionally responsible for perceived gaps in service provision. It is suggested that Admiral nurses may need to limit their involvement with carers in line with the service aspirations and become more confident in promoting on-referrals and discharging individuals from the service. It is concluded that it does not appear practical for Admiral nurses to provide a specialist service that meets the needs of all the carers who require support.
Dewing et al., (2005) [54]
N = 11 Admiral Nursing teams within England, with two or three Admiral Nurses in each team. The teams were based within existing National Health Service or another provider organisation • The aim of the study was to work collaboratively with Admiral Nurses to facilitate the development of a competency framework that reflects the needs of the Admiral Nursing Service; to provide a way to structure evidence demonstrating evolving competency and to specifically enable the nurses to demonstrate evidence of achieving the UK Nursing and Midwifery Council’s Higher Level Practice standard. N/A • Emancipatory action research and systematic practice development
• Observations and in-depth interviews with stakeholders (Admiral Nurses, service managers, and staff and trustees from among the project commissioners)
• Main outcome was development of a specialist nursing competency framework.
• The competency framework was made up of a set of eight core competencies: therapeutic work/interventions; sharing info about dementia and carer issues; advanced assessment skills; prioritising work load; preventative and health promotion; ethical and person centred care; balancing the needs of the carer and the person with dementia; promoting best practice.
• There were also process-derived outcomes associated with combining systematic practice development with an emancipatory action research design that had an impact on the culture
• The main outcomes were that practitioners engaged in and experienced learning about how to research their own practice and the consequences of doing this which are mainly research method findings.
• There was some increase in awareness about the culture within the teams and organisations.
This qualitative study developed a competency framework that reflected the needs of the service, was owned by the majority of practitioners and project commissioners which had a positive impact on implementation. It is suggested that the competency framework will enable Admiral Nurses to demonstrate their level of specialist practice as individuals and as a service while also promoting the principles of nurses as lifelong learners.
Duane et al., (2013) [58]
N = 9 people aged over 65 years, with a 6 month history of cognitive decline and functional decline but who had no previous diagnosis of dementia and cognitive impairment in the absence of delirium were included in the study.
N = 11 health professionals (focus groups)
• Participatory action research used to refine the role of a Clinical Nurse Consultant specialist in Dementia.
• Clinical Nurse Consultant specialist in Dementia role included provision of pre-diagnosis support to people with dementia and their carers/families.
N/A • Field notes (reflective practice methods)
• Semi-structured interviews with participants and their cares
• Focus groups with home care nursing service staff and aged care assessment service staff
• The role of a clinical nurse consultant dementia was highly regarded by clients and other health professionals.
• It was successful in providing timely assistance and support for consumers and support for other health professionals.
• Important aspects of the role included assistance with adjusting to changes in cognition, the relational aspect of the CNC role and opportunities for people with dementia and their carer’s and families to explain their needs and concerns in a time and manner of their preference.
This qualitative study suggests that an inclusive model of community nurse care led by a specialist dementia Clinical Nurse Consultant was successful in providing timely assistance and support for consumers and support for other health professionals. Further research into service provision and evaluation are recommended.
McGhee et al., (2010) [56]
Glasgow, UK
N = 36
• 18 key workers
• 18 carers
• Carers were identified solely by the patient’s consultant psychiatrist (purposive sample). Key workers identified by the carer.
• Aim was to create a theoretical explanation of the development of the relationship between key workers and lay carers involved in the care of an individual with dementia N/A • Semi-structured, iterative interview to explore participants’ views of the carer-key worker relationship • A theoretical explanation for the carer/key worker relationship as a complex reciprocal process was described.
• Results describe how the relationship may be initiated, strengthened (e.g. through validating and appreciating the carer’s work effort and boosting the confidence of the carer) and managed, but also how it can be weakened (e.g. if the carer adopts a position/view that they are the only individual to be involved in providing care or alternatively the key worker pushes a very dominant approach) and other mediating influences on the relationship.
• Very little information is provided in this paper as to the key worker role itself.
• Overarching theory of the reciprocal relationship is illustrated in a diagram.
This qualitative study has produced a model that provides a framework for further research into the psychosocial aspects of care giving. The theory requires further empirical study to allow for a more confident prediction that these propositions will produce the benefits for this relationship. There are implications for health care professionals working within the field of dementia care as well as those providing care/support to a close relative or friend living with dementia.
Quinn et al., (2013) [55]
N = 6 dyads (six female spousal caregivers and six male care recipients)
N = 3 Admiral Nurses
• Study of relationship between Admiral Nurses (ANs), caregivers and care recipients. The aim was to explore how the members work together with this triadic context. N/A • Semi-structured interviews with dyads and Admiral Nurses
• Case studies were then created presenting perspectives of the caregiver, the care-recipient and the Admiral Nurse
• The case studies were encompassed under an overarching process the authors call “negotiating the balance”, i.e. the ongoing struggle of the members to balance the views of other members against their own needs emerged. The process is seen as dynamic as it is constantly changing.
• There was evidence of coalitions occurring between the caregivers and the Admiral Nurses and between the caregivers and care-recipients. It is also showed that coalitions can also arise between the Admiral Nurses and the care-recipients.
• There was evidence of both enabling and disabling dementia communication where care-recipients were encouraged to express their feelings and participate in decision-making but where also, in some cases, discouraged from expressing their thoughts and excluded from decisions. Though negotiation was present.
• Admiral Nurses perceived that some care givers had difficulty attributing care recipients changes in personality and behaviour to dementia.
This qualitative study showed that the differences in the views of the triad influenced the way they worked together and negotiating the balance of the interactions influenced the effectiveness of the support provided by the Admiral Nurses. It is suggested that longitudinal studies are need to explore how the relationship between the triad changes over time as the negotiations continue to try and reach a balance.
  1. Note: Assessment of bias was not relevant for the qualitative studies as their study design did not meet the criteria for the risk of bias tools; instead the methodology was critiqued according to Greenhalgh & Taylor’s [21] paper and Britten & Pope’s [22] work