Article

Community practitioner involvement in collaborative research

Dementia 2015, Vol. 14(4) 450–467 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1471301213498760 dem.sagepub.com

Gillian Stockwell-Smith, Wendy Moyle and Ursula Kellett Centre for Health Practice Innovation, Griffith University, Australia

Henry Brodaty Dementia Collaborative Research Centre – Assessment and Better Care, University of New South Wales, Australia

Abstract This paper focuses on the benefits and limitations of collaborative research in community-based service settings explored through the implementation of a psychosocial intervention. The study aimed to establish the effectiveness of working with dementia dyads (person with dementia and family caregiver) in the early stages of dementia and to recruit and train an existing practitioner workforce to deliver a psychosocial intervention designed to assist dementia dyads to manage the consequences of dementia. Seven intervention staff participated in post-intervention semistructured interviews. Whilst staff recruitment and retention proved challenging the degree to which staff demonstrated the required communication skills and competence was an important component in dyad acceptability of the intervention. Participatory factors, collaborative development, selective recruitment, focused training and ongoing specialist support, can assist the implementation of practice-based research. However, intervention staff participation and therefore intervention delivery can be hampered by workplace culture and workforce demands. Keywords community, dementia, early intervention, nurses, training

Introduction The number of people with dementia in Australia is projected to increase from 270,000 people in 2011 to almost a million by 2050 (Access Economics, 2011) as a consequence of population ageing. Coping with dementia necessitates fundamental changes to everyday living, and is frequently uncertain and unpredictable (Robinson, Clare, & Evans, 2005; Corresponding author: Gillian Stockwell-Smith, Centre for Health Practice Innovation, Griffith University, 170 Kessels Rd., Nathan, Queensland 4111 Australia. Email: [email protected]

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Steeman, Dierckz de Casterle´, Godderis, & Grypdonck, 2006). Dementia impacts on both the person with dementia (PWD) and the family caregiver (the dyad) and supportive dyadic partnerships play an important role in effectively managing the disease process (Mittelman, 2008; Mountain, 2006). Recent dementia research has explored ways to include people with dementia along with their caregivers in focused interventions aimed at enabling and empowering them to respond and manage issues they may experience during the disease trajectory (Judge, Yarry, & Orsulic-Jeras, 2010; Whitlatch, Judge, Zarit, & Femia, 2006; Yarry, Judge, & Orsulic-Jeras, 2010). The period of early cognitive change is a time when both the person affected and their family caregiver can come to terms with and learn to manage the changes associated with a progressive terminal condition. Early stage interventions enable the PWD to actively participate in partnership with their caregiver in the management of their condition whilst early shared future planning may also reduce the burden of decision making experienced by caregivers in the later stages of the condition (Andre´n & Elmsta˚hl, 2008; Fillit, Knopman, Cummings, & Appel, 1999; Moniz-Cook, 2006; Mountain, 2006; Whitlatch et al., 2006). People with dementia and their family caregivers commonly delay accessing formal community support until a crisis occurs (Witucki Brown, Chen, Mitchell, & Province, 2007). This is generally related to a lack of awareness of community support services and/ or reluctance on the part of the PWD to accept support from individuals outside of the family (Scourfield, 2006; Winch, 2006). Acceptance of service staff is a critical component in dementia dyads (PWD and family caregiver) accessing formal support in a timely manner as opposed to in a crisis when the dyadic relationship is at risk of breaking down (Howse, Ebrahim, & Gooberman-Hill, 2005; Witucki Brown et al., 2007). Forward planning and early introduction to community service providers are two strategies, which can alleviate this situation (Judge et al., 2011; Ploeg et al., 2010). They are also critical elements in empowering dementia dyads and fostering appropriate identification of and access to support along the disease continuum (Vernooij-Dassen & Olde Rekkert, 2004; Vickrey et al., 2006). The key features of this study were establishing the effectiveness of working with dementia dyads in the early stages of dementia and recruiting and training an existing practitioner workforce from within community-based aged care services to deliver a psychosocial intervention. Documenting and analysing the staff recruitment, training and support component of the study provide an insight into how this may be achieved.

The study Aim The main aim of the study was to determine the effectiveness of a modified psychosocial intervention in assisting community-based dementia dyads to manage the consequences of dementia. This paper explores the practical aspects of psychosocial intervention implementation and acceptance to determine the feasibility of using a community agedcare practitioner workforce (registered nurses (RNs) and ancillary staff (unlicensed care staff)) to deliver the intervention. It is not the purpose of this paper to give a full account of the study findings; these will be reported elsewhere, but an attempt to explore the benefits and limitations of collaborative research in community-based service settings.

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Design An exploratory sequential mixed-methods design was utilised with the qualitative data collection following the quantitative (Creswell, Plano Clark, Gutmann, & Hanson, 2003).

Sample Intervention staff were recruited from two South-East Queensland, Australia communitybased service organisations. Eligibility criteria was a minimum of one-year community agedcare experience, knowledge of community support services and experience in supporting dementia dyads. Selective recruitment strategies were utilised to identify staff with the emotional strengths and behavioural characteristics essential in working with people with dementia (see Table 1) to ensure a balance of personal attributes, skills and experience (Cantley & Wilson, 2002). The staff recruitment process involved engaging with service managers to identify staff that not only met the entry criteria but also possessed specific attributes/personal characteristics. Significant challenges were experienced in recruiting intervention staff and maintaining their participation within the high demand and limited resource community service sector. Over a period of 18 months a total of 23 community practitioners were recruited; RN (n ¼ 3) and personal care workers (PCW) with a vocational education Certificate III in aged care (n ¼ 20) (see Table 2). Six PCW and one RN agreed to participate in a post-intervention interview (44% response rate).

Table 1. Favoured characteristics/skills. Personal characteristics . Compassionate/empathetic . Adaptive . Sense of humour . Motivating/motivated . Tactful . Optimistic

. . . . .

Good listening/communication skills Respectful/non-judgmental Willing to learn/self directed Patient Intuitive

Skills . Good time management . Comfortable meeting and interacting with new people  Ability to put participants at ease . Good knowledge of local community networks/support structures . Good knowledge of common behavioural changes in dementia . Capacity to eectively deliver structured sessions  Ability to decipher and paraphrase session content  Ability to deliver session content within designated timeframes . Capacity to identify and respond appropriately to individual participant issues/concerns  Ensure each participant is validated  Connect with and support diverse participants

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Table 2. Staff profile. Demographic characteristic Gender Male Female Age 40 y Discipline Registered nurse Personal care worker Employment status Part-time Full-time

Initial Interview. Demographic sample group characteristic 0 23

0 7

3 20

0 7

3 20

1 6

13

6

7

1

Educational level Junior high school Senior high school Qualifications Vocational cert/dip  Cert 3 (aged care, health)  Cert 4 (assistant in nursing)  Diploma (beauty sc, lifestyle/leisure) Graduate/post graduate  Grad dip (paediatric nursing)  Bachelor degree (nursing, human services)

Initial Interview. sample group 7 16

2 5

17

6

4

1

Intervention The study implemented an existing psychosocial intervention, the early diagnosis dyadic intervention (EDDI), developed and trialled in USA by Whitlatch, Judge, Zarit, and Femia (2006). EDDI was modified to acknowledge the characteristics of the Australian community aged care workforce. The intervention was delivered to community dwelling individuals aged 65 or over, with symptoms consistent with Clinical Dementia Rating 0.5–1 (Morris, 1997) or a diagnosis of early-stage dementia and a primary family caregiver willing to participate (The Dyad). Ninety-six dyads were recruited across four study regions (metropolitan and coastal communities) in South-East Queensland, Australia and, based on their region, assigned to either intervention or control group. Forty-five dyads were assigned to the intervention group; 7 did not receive the intervention due to ill health or nursing home placement, 34 completed the intervention (4 sessions). Staff attended two 6 h training workshops and received a protocol manual and programme manuals which comprehensively described all aspects of the programme (see Table 3). The training workshops combined practice-based modules with the written support material. It was originally assumed that staff participants would mainly be RNs but in fact PCWs (unlicensed care staff) greatly outnumbered RN’s. Once this became apparent the training sessions were revised to accommodate their educational and practice backgrounds (see Table 4). The staff training sessions were not only aimed at introducing and embedding new skills in delivering the intervention protocol but also at building the capacity and confidence of the intervention staff in utilising their existing communication and negotiation skills, often referred to as tacit knowledge. An informal screening process was incorporated into the training period. Understanding of intervention concepts was assessed in relation to how staff applied communication strategies and delivered the programme content during staged scenarios. Evaluation forms were developed for the training sessions and staff completed them after each session. These assisted in refining the training sessions to ensure staff acceptance as well as competence.

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Table 3. Intervention manuals content. Manual name

Used by

Purpose

Content

Intervention Facilitator Manual

Intervention facilitator

Intervention protocol and reference manual

Clinical notes Manual

Intervention facilitator

Case notes(returned to research team for data entry once dyad have completed the intervention)

1. Intervention facilitator records relevant information obtained during the sessions – track progress of each dyad as well as unique aspects of a dyad’s response. 2. Contains scripts and strategies to initiate and explain major discussion issues. 3. Contains programme specific forms used during sessions to implement features of the intervention. 4. Contains session evaluation questionnaire completed by intervention facilitator after each session with the dyad.

Care Giver & Care Recipient Manuals

Dyad

Session workbooks (retained on completion of the intervention for reference)

1. Written materials to supplement sessions and allow CRs and CGs to review material covered in the programme during and after they have completed the EDDI programme. 2. Contains the programme specific forms used during sessions to implement features of the intervention.

1. Project overview. 2. General instructions for each session. 3. Specific instructions for filling out the Research Tool 4. Session methods . Step-by-step description of the content of each session . Session scripts/strategies to initiate and manage major discussion points and manage key/challenging issues that may emerge during or following each session

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Table 4. Training workshop sessions/modules. Module content 1

Module 1: Structure of study and programme 1. Introduction to study, intervention manuals and training modules Module 2: Dementia knowledge 1. Physiological changes 2. Functional changes 3. Communication changes and strategies for PWD/FCG Module 3: Facilitation and communication 1. Developing the care partnership/ facilitation skills 2. Influence of values and attitudes on behaviour and practice Module 4: Intervention protocol/session delivery 1. Intervention sessions 1–3 – content, delivery, session tools

2

Module 3: Facilitation and communication 3. Identifying and understanding care provider and care location preferences Module 4: Intervention protocol/session delivery 2. Intervention sessions 4–7 – content, delivery, session tools Module 3: Facilitation and communication 3. Communication strategies to manage conflict

Module 1: Structure of study and programme 2. Final review of programme documentation and ongoing support

The key elements or ‘active ingredients’ of EDDI were emphasised during the training sessions and regular support meetings. This was done by identifying core elements of the programme, which were not to be modified and key characteristics that could be modified in response to individual dyad needs. These concepts were clarified using practical examples from the intervention protocol and session content and through initiated discussion amongst the staff. For example, when looking for reassurance that they might not be able to cover all session contents because of a lack of time or dyad acceptance, staff were advised to identify and focus on the main session objective or the core intervention aim of improving communication between the dyads on care related preferences. Opportunities for staff reflection to assist in understanding their own and the dyads’ responses to the session content were provided throughout the intervention delivery period. Individual trainers in specialist areas (dementia knowledge and strategies, communication skills, EDDI protocol) were available to provide support and staff were encouraged to contact them at any time. To keep staff informed on the progress of the study, including recruitment and timeframes for completion, two group meetings were convened during the intervention delivery period of the study. To ensure that the study structure was appropriate and acceptable it was adapted in consultation with an expert reference group (dementia specialists, service delivery staff and family caregiver).

Data collection Data were collected over a two year period in 2010–2012. The qualitative component of the study, reported in this paper, involved individual semi-structured interviews with intervention staff post-intervention delivery. An interview guide developed in consultation

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Table 5. Interview questions. Category

Question

1.

Experiences of participation

1. 2. 3. 4.

What made you want to be part of the project? Would you do it again? Was being part of the project what you expected? How did it fit with your other work?

2.

Opinion of training, intervention delivery and support processes

1. 2.

Did the training prepare you for your first visit? Would it have helped to have more support with your first dyad? How useful did you find the project manuals? How did you manage the delivery of the programme? Did this change over time? When things did not go well what did you do?

3. 4. 5. 6. 3.

Significant outcomes

1. 2.

Which dyad (or individual) do you feel you got the best result from/got the most out of the programme? Which dyad (or individual) do you feel you got the worst result from/did not get anything out of the programme?

with the study trainers was used to focus discussion. Questions concentrated on the staff experiences of participation in the study (see Table 5).

Ethical considerations Recruitment commenced after ethical clearance from the relevant Human Research Ethics Committees. Participants were provided with informed consent materials and were assured that confidentiality would be maintained at all times. Both members of the dyad provided consent. The consenting family member/health attorney countersigned that of the person with mild cognitive impairment/dementia.

Data analysis Qualitative interview data were analysed using structured thematic analysis phases (Braun & Clarke, 2006). Following verbatim transcription of the interviews, each transcript was read several times to identify distinct incidents, anecdotes, or stated opinions about discrete topics using the interview subsections as initial content categories. Common meanings, values and intentions were determined and competing or alternative perspectives identified (Struebert Speziale & Carpenter, 2003). Emerging issues were discussed and following consensus the data were classified into themes.

Validity and reliability/rigour A pragmatic, exploratory qualitative approach, situated in the interpretive paradigm (Neuman, 2000) was taken for the analysis of qualitative data. This enabled an examination of the experiences of the intervention staff in delivering a research intervention. The words of the participants were used to identify their opinions

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and multiple interviews provided the opportunity to clarify and probe specific issues to ensure they were interpreted as the participants intended (Krueger & Casey, 2000). This ensured that the participants’ narratives provided trustworthy information in keeping with the research aim. An audit trail was also maintained in the study (Koch, 1994; Morse & Field, 1995, 1996). The technique was used to authenticate the processes used and assisted others to follow the development of the study and understand how the conclusions were achieved. Furthermore, the interviews were audio-taped to ensure accuracy of the participant’s voice during analysis of the data.

Results Experience of participation The majority of staff reported difficulties in juggling study participation with their routine work, ‘. . . we had a mass influx of new clients [following an advertising campaign], it was really challenging to fit in the workload and this extra on top of it, so there was one week where I was a bit stressed to get it all through and done’ [IF09].

Service sites were recompensed for staff time on the study but some service managers and intervention staff gave participation in the study a lower priority than their routine services. They cited demands on staff time as affecting the service sites ability to meet government funded service outputs. Meeting service outputs was allocated a higher priority than study participation as not meeting them had the potential to affect current and future funding from government bodies on which the service site relied. One facilitator considered her ability to participate in the study was severely compromised by lack of service site support, ‘Didn’t get a whole lot of help from the people in the office’ a matter also related to high staff turnover, ‘I think since joining the project we’ve probably had four different coordinators come through’ [IF10]. Initially dyad recruitment was slow but as the study progressed and dyad recruitment rates improved difficulties in having intervention staff in the right geographical area emerged. Workplace restrictions greatly inhibited the ability of intervention staff at some sites to accommodate dyads located outside of the geographical area they covered in routine service delivery. Some staff were willing to travel but were limited by strictly defined geographical boundaries imposed by site management or administrative staff. In some instances, intervention continuity was affected when the dyads cancelled intervention sessions at short notice. This would not have proved insurmountable if all intervention staff were able to be flexible in when they were available to visit dyads, but some were severely limited on the time they were able to commit to the study. From a study perspective it was advantageous that most intervention staff were employed part-time. Workplace pressures resulted in the majority of them being obliged to participate in the study outside of routine work hours, ‘I would have preferred to have done it [intervention delivery] within the two days, but clearly that was going to cause some friction’ [IF07]. Workplace demands greatly affected staff participation and featured as a common reason for attrition, resulting in the loss of eight intervention staff. Four dropped out when workforce pressures made their continuing involvement in the study difficult to maintain, a further four left the recruitment organisations employment.

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The expert reference group with key industry representation was intended to foster collaborative connections, thereby raising the profile of the study and facilitating both staff and dyad recruitment. Despite initial enthusiasm it proved difficult to maintain a worthwhile ongoing commitment from all reference group members. This was evidenced by diminishing meeting attendance and difficulty in obtaining meaningful feedback from members within specified timeframes. The high profile of some members within their organisations, which initially appeared advantageous in respect to their knowledge and influence, ultimately proved to be a disadvantage. As members of multiple decisionmaking groups they found it difficult to commit to smaller projects.

Training and support All staff participants were experienced community aged-care service practitioners but most had little or no experience in delivering structured programme. They were generally positive of the training and support components of the study, ‘I thought the training was pretty good. It was basically going through what we do and it was broken up into a couple of sessions’ [IF09]. Some considered more detail was required, ‘I think the training program itself needed to be longer and probably just a bit clearer somehow’ [IF15]. Most would have appreciated an experienced ‘buddy’ to provide hands on assistance during session delivery with their first dyad, ‘I was really nervous when I first went in. I’m used to going out blind and then dealing with clients because that’s the nature of the business. That wasn’t a factor. I think it was more delivering the material so, perhaps if the first time you went, you go with someone could be a way of doing it.’ [IF09]. Considerable variability in competence emerged during the training sessions with some staff quick to learn the required skills and apply them in the role play sessions, whereas others found it challenging. Of 23 staff recruited, seven did not progress to intervention facilitator status. Of all the positive features of the study, the one cited most frequently by staff was the regular support that came with study participation. The chief investigator (GSS) conducted individual weekly face-to-face or phone meetings with each staff member, ‘I think the [weekly] phone call from you was just brilliant. . .because sometimes you gave us other paths that would help’ [IF11] and ‘What was helpful was that you were always available and we could talk afterwards so I could ask questions on how we should handle situations’ [IF22]. The staff also appreciated having ready access to the specialist knowledge of the research team when they encountered difficult situations, ‘. . . on the times when I did feel that I was out of my depth or I needed a sounding board, I did ring [CI] several times, and I spoke to [Dementia Trainer] another time. She was excellent. I really valued the input she gave me on that particularly difficult one’ [IF07].

The two group meetings provided an excellent forum for intervention staff to share individual experiences and strategies. It also kept them up-to-date on the progress of the study as a whole, including recruitment and timeframes for completion, ‘The second meeting we had, not the training but the meeting we had. . .you did tell us more about the project and how many dropped out, how many finished and the result. So I found it really interesting’ [IF22].

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Dyad and staff outcomes A main focus of the intervention was on reducing the risk of dyadic relationship stress, and potential for breakdown of the caregiving relationship, by encouraging dyads to expand their caring network beyond the primary family caregiver. During intervention sessions staff provided information and advice, initiated a pathway into support networks and facilitated the active participation of the PWD in the information sharing, decision making and planning process. The degree to which staff demonstrated the required communication skills and competence was an important component in dyad acceptability of the programme, ‘. . . if you’re not too overpowering and too loud and just let them talk, and let them show their emotions and their feelings, you gain their trust’ [IF03]. Some staff took the initiative and exercised creativity in applying the material. One used a memory game in a session with a dyad to assist the family caregiver member of the dyad to recognise the extent of his wife’s memory loss. In this circumstance, it was a meaningful minor deviation. It exposed the wife’s poor short term memory to her husband and proved far more effective than previous discussions and information. The intervention staff were predominantly mature women and their empathy and compassion proved to be one of the great strengths of the study, ‘. . . [Being older] you are more acceptable to the dyad as somebody that has had that life experience and does have a level of empathy to the experience that they’re having as well’ [IF07]. Intervention staff considered participation in the sessions not only increased the dyad’s understanding of the cognitive and consequent functional changes which occur with dementia but provided a forum for them to acknowledge and discuss their experiences, ‘With somebody else there, I think, she felt that she could say things that she couldn’t with just the two of them’ [IF15]. They also relayed how satisfying they found it when communication breakthroughs occurred, ‘. . .one of the sessions was an intense talk with mother and daughter, I was kind of outside just listening. . .it was really good watching them talking’ [IF22]. Most dyads had limited knowledge or experience of supportive community services and were disinclined to use them, due in part to concerns over the trustworthiness and competence of staff, ‘. . . she [CG] was very determined not to get help. She was reluctant because she’s never had to rely on anybody in her life – very independent woman, not comfortable with strangers’ [IF07]. During the intervention sessions staff initiated focused discussions with the dyads on alternative or additional support from family and friends and/ or community service providers, ‘. . . that’s where it’s interesting, when you just see them starting to communicate with each other. They’re talking about things that they’ve never really spoken about’ [IF03]. Intervention staff endeavoured to demystify community services by giving examples of the types of support they provided to their routine aged-care service clients ‘... I made sure when we went through the services and that I would say to them, well, today I did six showers, I took a lady shopping and a did a clean and whatever, just so that they know that I do that and we’re really not that scary.’ [IF10].

They became the compassionate human face of what for most dyads were unknown and anonymous providers of services, ‘I said okay, I’m a personal care worker. What if I was to come into your house three times a week for hygiene? How would you feel? They said oh you’re fine – we’d love to have you.

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I said but initially you didn’t know me, and you’ve grown to respect and like me, and your husband is very comfortable with me’ [IF03].

Community aged care service staff mainly provide support to dementia dyads in the later stages of dementia and for some staff participation involved a considerable cultural shift in which they were required to rethink their current practice. A number of the staff considered participation had made them more confident in routine interactions with dementia dyads, ‘I’ve taken that into my job now and I am so much more courageous now than I was before the project’ [IF07]. Most staff strongly believed in the capacity of the programme to achieve meaningful outcomes for the majority of dyads, ‘I’ve seen laughter, I’ve seen tears, had people who didn’t think they wanted to go through all this, and then at the end were just so grateful for the knowledge’ [IF03] and ‘It’s a wonderful programme, and it got them to talk to each other’ [IF09]. In addition to expressing confidence in the intervention, the PCW’s considered they were capable of delivering the intervention as documented, ‘If you get the right PCW with the experience, and great communication skills, and a little bit of nous about them, I think they’re more than capable of following this programme through for sure’ [IF03]. A view reinforced by this staff member, ‘It’s been worth the effort, it really has. I’ve really enjoyed the whole process of it, really challenging but rewarding’ [IF09].

Discussion Organisational support The organisational context/culture is critical to the success of intervention research in practice settings. Making sure a research study obtains the organisation’s full support is known to be an important prerequisite for the effective implementation of a practice-based research approach (Canadian Institutes of Health Research, 2008). Unfortunately, difficulties in gaining full support from key stakeholders (executive, service managers and practice staff) and finding room in the work schedule for research activities are not uncommon to research in practice settings (Harrop, Nelson, Kuratani, Mullen, & Paskett, 2012; Kitson, 2009; Verhoef, Mulkins, Kania, Findlay-Reece, & Mior, 2010). Influential champions of the intervention within both service organisations proved extremely helpful in gaining and maintaining the support of other key staff, addressing challenges to implementation as they arose, and in providing ongoing support for the study, but at some sites within the main service organisation resistance prevailed. Our experience indicates that little has changed since Beattie, Cheek, and Gibson (1996) noted the impact ‘the politics of collaboration’ had on practice-based research, in that they, ‘. . .operate on the individual and institutional levels and can have debilitating effects on the research enterprise’ (Beattie et al., 1996, p. 682).

Workplace constraints It became apparent early in the study when we started to experience difficulty in intervention staff recruitment and retention, that the capacity and enthusiasm to engage in research activities were not shared by all levels of staff within one of the participating service organisations. Gaining access to staff involved navigating a succession of ‘gatekeepers’, a prolonged and on occasion circuitous exercise. At some service sites a lack of recognition by site managers of the relevance of the study greatly hindered staff recruitment

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and participation. The most successful staff recruitment sites had a service manager or deputy who understood and could see the value of the study and who facilitated staff participation in the study but at some service sites workplace constraints dominated and no staff were recruited. Existing intervention staff also proved to be excellent service site champions and provided some assistance with recruiting additional staff. Across the service sites local level autonomy was compromised by government funding structures and sector workforce limitations. The pressure to meet government funded service outputs and limited staff numbers at a number of service sites greatly reduced their capacity to encourage service staff involvement in anything outside of funded service provision. This is partly related to the convention of output-based service funding practices in Australian aged care service provision but also to the workforce recruitment and retention difficulties which are endemic in the Australian aged care service sector (Access Economics, 2010; Productivity Commission, 2011). One of the main sources of intervention staff attrition at the main recruitment service organisation once they were trained and deemed competent was related to these competing demands. Intervention staff time was paid to enable the branch to backfill during the study period, however at some of the smaller service sites this did not occur due to a small staff complement, particularly of RNs. At these sites part-time or casual staff frequently worked additional hours to cover staff absence due to annual or sick leave. When these events occurred during the study intervention staff were often required to reduce, sometimes at short notice, the hours they were able to commit to the study. These factors resulted in delays in commencing new dyads and progressing intervention sessions with existing dyads.

Staff selection and participation Good quality dementia care is dependent on the values and attitudes of care staff, traits which are difficult to influence (Cantley & Wilson, 2002). Professional research staff delivered the original US intervention and a key feature of this study was to use an existing workforce to improve engagement between dementia dyads and community services. Selective recruitment and focused training of paraprofessional staff proved to be an effective and efficient means of delivering the intervention. The characteristics deemed essential in delivering the intervention consistently and effectively, namely compassion, good communication skills and a motivation and willingness to learn, were modelled on those used to select lay leaders for Chronic Condition Self Management Programs within one of the recruitment organisations. The staff selected as facilitators exemplified these characteristics and proved favourable to the dyads so their involvement yielded maximum benefits. Practitioner knowledge and decision making is known to be influenced by past experiences and practice (Tyson McCrea & Bulanda, 2010). One of the most significant benefits of practitioner staff involvement in the study was engaging with dementia dyads at the beginning of the disease process prior to the emergence of significant stressors. Initially a number of staff expressed misconceptions regarding dementia progression, dyadic relationships and the benefits of a participatory model of care. Their perceptions of people with dementia and the role of the family caregiver appeared to be coloured by the behaviours of people with mid-to-late stage dementia and the highly stressed carers commonly encountered in their daily practice. A key indicator of change amongst staff participants was the extent to which they were willing to compromise by abandoning,

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at least in part, usual patterns of practice and opinions of worthwhile strategies (Palinkas et al., 2008; Verhoef et al., 2010).

Intervention delivery Whilst the initial training was an important component in ensuring consistent implementation of the intervention, maintaining close contact with programme delivery staff throughout the intervention period was critical in monitoring treatment fidelity and providing clarity and consistency in responding to issues that occurred during intervention sessions. Time and energy were devoted to finding a balance between the session’s content as designed, staff capacity and the individual needs of the dyad, which resulted at times in compromise. Sometimes staff did what they had to do to stay on track and maintain the dyads’ interest and participation, particularly in the early sessions when the staff member and the dyad relationship were being established. Adding material to an existing programme whilst otherwise maintaining fidelity is not considered as a detrimental effect on programme impact (O’Connor et al., 2007). Some staff proved more enthusiastic than others about delivering the intervention. When the opportunity to use the skills they had learned was delayed by slower-than-expected dyad recruitment some expressed frustration whilst others were more accepting of the difficulties associated with recruitment. Those that appeared less enthusiastic were more likely to report difficulties in arranging sessions, engaging with the dyads or conducting the sessions as defined. If staff did not engage with the intervention they were unlikely to make the necessary adjustments to their work schedules and practice to implement the intervention as it was designed. The best indication of engagement was demonstrated by the staff that remained committed to the programme despite the challenges involved in arranging or delivering sessions or managing challenging situations with dyads.

Strengths and limitations This study contributes to an understanding of the significance of using an existing practitioner workforce to deliver a focused psychosocial intervention with dementia dyads. A major strength was the richness of data from the staff interviews, which highlighted the importance of staff characteristics on dyad acceptance and the capacity of the staff to deliver the intervention effectively. Staff participants were representative of the community service workforce with respect to age, gender and discipline (King et al., 2012). The lack of cultural diversity amongst participants could be considered a limiting factor. The majority of staff and dyads came from white Anglo-Saxon backgrounds, therefore, complex issues experienced by Culturally and Linguistically Diverse (CALD) and Aboriginal and Torres Strait Islander (ATSI) staff and dyads’ were not explored in this research.

Conclusion Reviewing the study in this way has highlighted the effect sector and organisational context and priorities on facilitating or impeding practice-based collaborative research. Whilst the challenges we experienced in implementing a dementia intervention research study within the Australian community service sector cannot be generalised, certain aspects can be applied to other studies in practice settings; adapting knowledge to the local context, assessing the

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barriers and supports to participation, selecting, tailoring and implementing the intervention, monitoring intervention delivery and evaluating outcomes. We conclude with the following ‘lessons learnt’ in which the strengths and weaknesses of the study are highlighted to ensure future studies enhance the positive aspects and take steps to avoid similar pitfalls.

Lessons learned . The organisational context/culture is critical to the success of intervention research in practice settings. Effective collaborative research requires an organisational culture open to research participation. . Invest early in relationship-building to establish strong buy-in from senior staff and identify influential champions to act as liaisons between the research team and key decision makers. . Output-based aged care service funding and sector workforce constraints greatly limit the capacity of service organisations to encourage staff involvement in research. . Utilising an existing workforce is a potentially efficient means of delivering the intervention . Selective recruitment, focused training and ongoing specialist support facilitated staff competency in delivering the intervention, the personal characteristics, practical knowledge and experience of the individuals chosen to act as facilitators were favourable to the dyads so their involvement yielded maximum benefits.

Summary statement Why is this research or review needed? . Forward planning and early introduction to community service providers are critical elements in empowering dementia dyads and fostering appropriate identification of and access to support along the disease continuum. . Documenting and analysing the staff recruitment, training and support component of a dementia early interventions study provides an insight into the effectiveness of working with dementia dyads in the early stages of dementia and highlights the strengths and weaknesses in using an existing practitioner workforce to deliver the intervention.

What are the key findings? . Participatory factors, collaborative development and structured staff training and support, can assist the implementation of practice based research but intervention staff participation and therefore intervention delivery can be hampered by workplace culture and workforce demands. . Utilising an existing workforce is a potentially efficient means of delivering the intervention

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. Selective recruitment, focused training and ongoing specialist support facilitated staff competency in delivering the intervention . The personal characteristics, practical knowledge and experience of the individuals chosen to act as facilitators were favourable to the dyads so their involvement yielded maximum benefits.

How should the findings be used to influence policy/practice/research/education? . Community practitioners have a significant role to play in advising and supporting dementia dyads in the early stages, at a time when they are more receptive to new care practices and before a crisis occurs. . Training and increased scope of practice has the potential to enhance job satisfaction for the staff involved. Acknowledgements The authors thank the Wicking Trust for study funding, DCRC: Carers and Consumers for a Publication Support Grant and the dyads and community service organisations for their participation in the study.

Conflict of interest No conflict of interest has been declared by the authors.

Funding This work was supported by a JH & JO Wicking Trust Grant and G Stockwell-Smith was a recipient of a PhD scholarship from the Primary Dementia Collaborative Research Centre.

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Author Biographies Gillian Stockwell-Smith is a PhD Candidate with Health Practice Innovation in Griffith Health Institute, Griffith University. Ms Stockwell-Smith’s research interests include early intervention with dementia dyads, dementia care practice issues in residential aged care and community respite uptake by informal caregivers of frail older people. Wendy Moyle is Professor and Director of the Centre for Health Practice Innovation in Griffith Health Institute, Griffith University. Professor Moyle’s research focus has been on finding evidence for managing agitated behaviours in people with dementia, quality of life for people with dementia and their carers and assistive technologies. Ursula Kellett is Gerontology Convenor at the Griffith Health Institute (GHI), Centre for Health Practice Innovation. Dr Kellett’s research has encompassed families’ caring for older relatives in community and long-term care settings; biographical approaches to aged/ dementia care; and staff-family participatory approaches to aged/dementia care.

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Henry Brodaty is Scientia Professor of Ageing and Mental Health, Director of the Dementia Collaborative Research Centre-Assessment and Better Care, Co-Director Centre for Health Brain Ageing, Montefiore Chair of Healthy Brain Ageing at the University of New South Wales and Consultant psychogeriatrician and Head of the Memory Disorders Clinic at Prince of Wales Hospital in Sydney. Professor Brodaty’s research interests lie in the fields of dementia caregivers, drug treatments for Alzheimer’s disease, behavioural and psychological symptoms of dementia (BPSD), nursing homes and epidemiology of cognitive health and decline.

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