http://informahealthcare.com/dre ISSN 0963-8288 print/ISSN 1464-5165 online Disabil Rehabil, 2014; 36(23): 1943–1963 ! 2014 Informa UK Ltd. DOI: 10.3109/09638288.2014.884173

REVIEW

Goal setting with caregivers of adults in the community: a mixed methods systematic review Heidi Shaunna Tang Yan1, Lindy Maxted Clemson1, Fiona Jarvis1, and Kate Laver1,2 1

Discipline of Occupational Therapy, Faculty of Health Sciences, The University of Sydney, Lidcombe, NSW, Australia and 2Department of Occupational Therapy, La Trobe University, Victoria, Australia Abstract

Keywords

Purpose: To examine how goal setting is used with caregivers of community residing adults and the effect of goal setting practices in improving the outcomes. Methods: A mixed methods systematic review was conducted. The methodological rigour of included studies was critiqued using Cochrane Collaboration’s risk of bias assessment tool, Downs and Black checklist and a framework for evaluating qualitative research. Narrative synthesis was created through tabulation and categorisation, visual mapping of the goal setting process, thematic analysis on common goal setting features and critical reflection on the accuracy and robustness of the synthesis. Results: Seventeen studies were included: 10 randomised trials, 5 other quantitative studies and two descriptive studies which incorporated qualitative methods. The trials demonstrated a relatively low risk of bias in contrast to the other studies that had varied methodological rigour. No studies isolated the effect of the goal setting process on outcomes and therefore the effectiveness of goal setting could not be evaluated. However, through a narrative synthesis six prominent features of collaborative goal setting were identified. Conclusions: Despite the fact that goal setting is an important component of client-centred care, and the prominence of client-centred care in healthcare discourse, the review uncovered a surprisingly limited number of studies. Goal setting is an elusive process that is of therapeutic value and warrants further investigation.

Carers, elderly, family, goals History Received 9 November 2012 Revised 14 November 2013 Accepted 13 January 2014 Published online 23 May 2014

 Implications for Rehabilitation  



The current body of empirical evidence suggests that there are six prominent features of collaborative goal setting with caregivers. The goals that are most important to caregivers are often different to those that are important to clinicians; it is important that caregivers and clinicians agree on goals to maximise adherence to treatment and goal attainment. The quality of evidence for goal setting with caregivers is limited although some intervention trials illustrate the usefulness of collaborative goal setting in contributing to improved outcomes.

Introduction Goal setting is the essence and cornerstone of effective rehabilitation [1,2]. It is an integral part of healthcare used by many health professionals, including those working in the fields of medicine [3,4], occupational therapy [5,6], nursing [7] and physiotherapy [8]. Health professionals often use the goal setting process to identify intervention goals. Studies in the area of adult rehabilitation have highlighted the importance of family involvement in goal setting [9–12]. With the move towards client-centred

Address for correspondence: Professor Lindy Clemson, Ageing, Work & Health Research Unit, Faculty of Health Sciences, The University of Sydney, C42 – Cumberland Campus, The University of Sydney Room M302B, Lidcombe, NSW 2141, Australia. Tel: +61 2 9351 9372. Mobile: +61 438 630 208. E-mail: [email protected]

healthcare, where the caregiver and care recipients are viewed as the ‘‘experts’’ [13], it is prudent that goal setting takes place in a collaborative forum [14]. Two models for collaboration with families have been identified [15,16]; however, there is little evidence to suggest which aspects of the goal setting process contribute to positive outcomes (such as increased treatment compliance or satisfaction with care) for caregivers and care recipients. Brown et al. [16] conceptualised the family–therapist relationship in a seven level hierarchy of family involvement accompanied with corresponding therapist attitudes and required professional skills at each level. The levels are graded from no family–therapist collaboration (level one) to family-directed service (level seven). The seven levels labelled according to the family role [16] are: (1) no family involvement, (2) family as informant, (3) family as therapist’s assistant, (4) family as co-client, (5) family as consultant, (6) family as team collaborator and (7) family as director of service.

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More recently, Sohlberg et al. [15] developed three phases specifically for collaborative goal setting with families of care recipients who have a brain injury. In brief, the three phases involve a semi-structured initial interview using an intervention guide, collaborative goal selection and monitoring change through observations. A pilot study that examined the effectiveness of the model demonstrated that collaboration with families results in higher quality of life and increased sustainability of interventions [17]. Empirical and anecdotal literature illustrate that health professionals seek to involve caregivers in goal setting, however, often face challenges that sometimes become barriers for the development of effective therapeutic relationships [17–21]. Barriers include the demands of the health-care system on clinicians’ time, conflicting beliefs about the purpose of goal setting and caregivers’ unrealistic expectations of what is achievable [20,22]. Consequently, health professionals are left to determine the most effective way of goal setting. However, there seems to be no consensus on what makes goal setting effective. There is a lack of literature that has analysed the important aspects of the client-centred goal setting process to meet the needs of caregivers and adult care recipients in the community [8]. Systematic reviews have been conducted on how care recipients are involved in the process [23], the utility, validity and reliability of goal setting tools [24–26] and the effectiveness of goal setting in rehabilitation [27], but none that investigate caregiver involvement in goal setting. In this study, we used a mixed methods systematic review to answer the following question: How is goal setting involving caregivers utilised and what are the outcomes? This systematic review (a) examines the application of goal setting with caregivers of community residing older adults and (b) examines the effects of collaborative goal setting on improving outcomes for the caregiver and/or care recipient.

Methods The aims of this systematic review were addressed through a critique of the methodological rigour of included studies, a review of the findings and a narrative synthesis on how goal setting was used. A mixed methods design limited the pooling of results however, allowed for the examination of evidence across the body of research. Ethical approval was received from the University of Sydney Human Ethics Committee. Protocol A protocol specifying the research question, aim, objectives, and sources of information, search terms, eligibility criteria, screening process and data collection methods were developed prior to commencing the review. Following the identification of studies from databases, the eligibility criterion regarding publication date was narrowed to the last decade (January 2001 to March 2011) to enhance the review’s focus on the current use of goal setting with caregivers. Eligibility criteria The following inclusion and exclusion criteria were used to select the studies: Types of studies: Quantitative and qualitative enquiries that involve goal setting with caregivers. No language or publication status restrictions were imposed, however, studies published before 2001 were excluded. Types of participants: Studies were included if caregivers of community residing adults were involved and at least 60% of care recipients were over the age of 45 years.

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Types of intervention and outcome measures: Studies that involve any type of goal setting used as part of the intervention process or as an outcome measure were included. Types of setting: Studies examining community-based programmes or interventions were included. Studies were excluded if they included care recipients who were inpatients in hospital, living in a hostel or resided in a nursing home. Search The search strategy was developed by first examining concepts related to: (a) the use of goal setting, (b) the population of interest (caregivers and adult care recipients) and (c) the community setting. The search strategy was also guided by key terms from known relevant studies [8,24,25]. To enhance the sensitivity of each strategy, MeSH terms and indexing methods specific to each database were examined and the search strategies were altered accordingly. The following terms were used to search all databases: goal*, ‘‘goal attainment’’, ‘‘goal attainment scaling (GAS)’’, ‘‘Canadian Occupational Performance Measure (COPM)’’, caregiver*, ‘‘caregiver burden’’, aged, rehabilitation, ‘‘health services for the aged’’. Search strategies were developed, recorded and performed by one reviewer (H.T.Y) in consultation with the other reviewers (L.C. and F.J.). The full electronic search strategy for Medline is presented in Appendix A. Information sources Articles were identified by searching the following electronic databases and scanning reference lists of included articles: Ageline (Ebsco) (1978 – March 2011), AMED (OvidSP) (1985 – March 2011), Cochrane Central Register of Controlled Trials (CENTRAL) (OvidSP) (1991 – March 2011), CINAHL (EBSCOhost) (1981 – March 2011), EMBASE (51966 – March 2011), Medline (OvidSP) (1948 – Feb week 4 2011), PSYCH INFO (OvidSP) (1806 – March 2011) and Web Of Science (ISI Web of Knowledge) (1899 – March 2011). In addition, relevant articles were found by mapping the citations of selected studies on SCOPUS and Web Of Science. Study selection Articles were screened by (a) title, (b) abstract and (c) full text. Each article was screened independently by two of the three reviewers in an unblinded standardised manner according to the inclusion and exclusion criteria specified in the protocol. Disagreements between reviewers were resolved by consensus or arbitration by the other reviewer. When consensus could not be reached at the full text level of screening, the author was contacted for further information. Data collection Due to the expected heterogeneity of articles, it was not possible to develop a data extraction sheet before completing the screening process. Subsequent to the final stages of selection, the following data were extracted by one reviewer (H.T.Y.) in consultation with other reviewers (L.C. and F.J.): (a) the population of interest, (b) aims and objectives of studies, (c) study designs, (d) the application and purpose of goal setting and the level of family– therapist involvement which was assessed according to Brown et al.’s [16] hierarchy. Authors of articles were contacted when clarification was required regarding the use of goal setting. Appraising methodological rigour and clarity of reporting The methodological rigour and reporting quality of all studies was assessed by one reviewer (H.T.Y.) in consultation with other reviewers (L.C. and F.J.).

Goal setting with caregivers

DOI: 10.3109/09638288.2014.884173

In accordance with Liberati et al.’s [28] recommendations, the Cochrane risk of bias tool [29] was used to ascertain the validity of eligible randomised controlled trials (RCTs). Domains assessed within the tool include: sequence generation, allocation concealment, blinding of participants, personnel and outcome assessors, incomplete outcome data, selective outcome reporting and other sources of bias. Each domain is assessed as being at high, low or unclear risk of bias. We accessed study protocols, where available, to identify selective reporting. The Downs and Black checklist (items 11–27) [30] was used to assess articles of a quantitative study design that were not RCTs. This checklist was developed out of the need for a framework to appraise the methodological quality of non-randomised studies. The checklist items assessed within this review are presented in Table 3. Although the checklist is recognised as a useful tool for systematic reviews, items 21–23 pertaining to selection bias (i.e. the mechanism of allocating subjects) are specific to experimental studies and there are no items related to baseline comparability [31,32]. Therefore, modifications to checklist items 21–23 were made for relevance to observational studies and guided by the McMaster guidelines on sample/selection bias [33]. Baseline comparability was assessed as an additional item in accordance with Deeks et al.’s [31] recommendations. Studies using qualitative methods were described using a framework devised by Spencer et al. [34]. The framework items relate to credibility of the findings, to what extent the study extends knowledge and addresses its intended aims, scope for drawing wider inference, clarity of evaluative appraisal, justification of research design and sample selection [35]. The first 10 items of the Downs and Black checklist are related to the quality of reporting [30]. These were used to assess the reporting quality of all articles that report quantitative studies; RCTs and non-randomised studies. Finally, due to the heterogeneity of study designs, it was not possible to evaluate the risk of publication bias across studies. Narrative synthesis The extracted data were analysed by one reviewer (H.T.Y.) in consultation with the other reviewers. Since there were no exclusion criteria for study design and clinical setting, it was expected that the group of included studies would be diverse and therefore a meta-analysis was not appropriate [36]. The narrative synthesis described in the University of York’s Systematic reviews: CRD’s guidance for undertaking reviews in healthcare [36] guided the process of data analysis and synthesis. Narrative synthesis involves four elements: (a) developing a hypothesis of how the intervention works, why and for whom, (b) developing a preliminary synthesis of findings of included studies, (c) exploring relationships within and between studies and (d) assessing the robustness of the synthesis [36]. Therefore, the extracted data were first analysed through tabulation and categorisation of the features of goal setting used in each of the studies and their findings. A thematic analysis of the tabulated data led to the development of a hypothesis on the relationship between the purpose of goal setting and the subsequent approach used. This preliminary synthesis was revised through visual mapping and coding of themes evident in the process of goal setting. Potential relationships between the setting, purpose and approach to goal setting collaboratively with caregivers were also explored. When reviewers were unclear about the details of the goal setting process in individual studies, the authors were contacted for clarification. Critical reflection on the interpretations drawn from the data were ongoing, and team discussions took place to assess the robustness of the synthesis and accuracy of conclusions drawn from data.

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Results Study selection The initial search provided a total of 16 319 articles. Figure 1 illustrates the screening process. A total of 36 articles have been included of which there are 17 primary studies, 15 sub-analyses and four other articles that describe the methodology of studies [38–73]. The level of agreement for the first run at each stage of screening was tested using Cohen’s kappa statistic. Agreement was moderate for title screens ( ¼ 0.544), fair at the abstract level of screening ( ¼ 0.332) and good for full text screens ( ¼ 0.780). Characteristics of included studies The characteristics of included studies are presented in Table 1. The mean age of caregivers was 63.5 (SD ± 4.8) years and the mean age of care recipients was 78.9 (SD ± 3.1) years. All caregivers were family members or unpaid, informal caregivers who assumed the primary role of caring for the care recipient. Fifteen studies included caregivers of people with dementia, one study was conducted with care recipients who had a stroke and their caregivers, and another study was in a mental health and behavioural setting. The clinical contexts of the studies are diverse ranging from pharmacological studies, to occupational therapy functional community interventions, studies that evaluate comprehensive geriatric assessment programmes and to those that examine the effectiveness of a caregiver intervention. Seven studies examined interventions aimed at meeting caregivers’ needs alone, four studies assessed interventions targeted at the needs of care recipients and the interventions of another four studies were aimed at addressing the needs of caregivers and care recipients. Two studies examined the goals of caregivers whose care recipients were enrolled in a comprehensive geriatric assessment programme. The study designs were determined according to guidelines in the Cochrane handbook [37]. Out of the 17 studies, there were 10 RCTs, 2 case series and 2 descriptive studies which involved qualitative methods, one cross-sectional, one non-RCT and one before–after design. The 15 articles that report sub-analyses of study data used the following study designs: 7 case series, 4 RCTs, 1 before–after comparison and 3 descriptive studies which used qualitative analyses. The remaining four articles describe the methodology of included studies. Appraisals of the methodological rigour and clarity of reporting The appraisals of the methodological rigour of quantitative studies are presented in Tables 2 and 3. Supporting evidence for judgements is available upon request. The risk of bias across RCTs was relatively low with more recently published studies demonstrating the highest rigour (Table 2). Most studies had low risk of selection and attrition bias and in many trials participants were not blinded due to the nature of the intervention. Some articles reported sub-analyses of data from primary studies. Therefore, the assessments made on reporting bias were less applicable. There was greater variability in the methodological rigour of the other non-randomised quantitative studies (Table 3). For most quantitative studies, we were unable to determine the representativeness of the targeted population and in a number of articles, there was an inadequate adjustment made for confounding factors. Nevertheless, all articles used appropriate outcome measures, statistical tests and data dredging was not evident in 10 out of 15 of the articles.

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Disabil Rehabil, 2014; 36(23): 1943–1963

Articles identified through database searching (n=16319)

Identification

Articles published ≤ 2001 excluded (n=5170) Articles from database searching published ≥2001 (n=11149)

Articles after duplicates removed (n=10251)

Screening

Articles screened by title (n=10251) Articles excluded (n=9936)

Eligibility

Abstracts of articles assessed for eligibility (n = 315)

Articles excluded (n=9) Reasonsb Carers not involved in goal setting (n=7) Care recipients not adults ≥45 years (n=4) Not in a community setting (n=3)

Included

b Total number of reasons exceeds number of excluded articles as some articles were excluded for more than one reason

Articles excluded (n=297) Reasons b Not a qualitative or quantitative enquiry (n=47) Carers not involved in goal setting (n=26) Care recipients not adults ≥45 years (n=3) No goal setting (n=300) Not in a community setting (n=11) b

Total number of reasons exceeds number of excluded articles as some articles were excluded for more than one reason

Reference lists screened for potential eligible records

Full-text articles assessed for eligibility (n=18)

Articles included after full text assessment (n=27)c c

Articles included in synthesis from main search

Includes multiple articles for some studies. Sub studies that do not contribute to evidence on goal setting were excluded

Final number of articles included in synthesis

17 studies: 10 RCTs, 2 case series, 1 before after study, 1 cross sectional, 1 non randomised controlled trial, 1 case study, 1 qualitative content analysis a

Flow diagram adapted from Liberati et al. [28]

Figure 1. Details of the screening processa.

All articles reporting a quantitative study were further assessed for reporting quality using items 1–10 from the Downs and Black checklist. The articles with the highest reporting quality were studies by Graff et al. [59,60] which met 100% of the reporting criteria and a further eight articles met 80% or more [41,43,48,51,52,55,57,63].

The five descriptive studies that used qualitative methods were limited in their scope and varied in the methodological rigour. The single case study reported by Graff et al. [58] aimed to enhance practitioners’ insight into the provision of occupational therapy at home and the aspects that make it successful for older people with dementia and their caregivers. Data were collected

Caregivers and physicians of patients undergoing initial evaluation at an outpatient geriatric assessment centre in New Haven, Connecticut [n ¼ 200]

As above

Before–after design

Case series

RCT

2 Bogardus et al. [40]

Bogardus et al. [41]

3 Burgio et al. [42]

REACHI study. Refer to study [73] [n ¼ 118]

As above

Case series

Aminzadeh et al. [39]

Informal caregivers of patients referred for an assessment of cognitive status to an outpatient Comprehensive Geriatric Assessment (CGA) programme in a teaching facility in Ottawa Canada [n ¼ 141]

Population [n ¼ sample size]

Qualitative-content analysis

Study design

1 Aminzadeh et al. [38]

Study and article reference

Table 1. Characteristics of included studies.

78.8

78.3 (±8.4)

78.7 (±8.3)

As above

82 (±6, 62–94)

Age of care recipients in years (SD, range)

62

Not reported

Not reported

As above

60.1 years (±13.8, 36–95)

Age of caregivers in years (SD, range) To explore the goals and needs of informal caregivers on admission to the programme and examine the caregivers’ evaluation of the effectiveness of the programme in meeting their goals and needs four months after discharge To examine patterns of patient/caregiver adherence to interdisciplinary recommendations and identify characteristics associated with low adherence To describe treatment goals for frail elderly patients from the perspectives of family caregivers and physicians. To ascertain which treatment goals are most frequently considered of greatest importance and to assess agreement on treatment goals between family caregivers and physicians To determine predictors of recommendation adherence and goal attainment of family caregivers To evaluate manual guided interventions based on common needs and cultural preferences of White and AfricanAmerican family caregivers of individuals with dementia

Study aims and objectives

As a component of the intervention

As above

As an integral part of the study design

As above

As an integral part of the study design

Use of goal setting

To ameliorate caregiver distress

As above

To describe the treatment goals of patients and explore the level of agreement between goals of the clinician and caregiver

As above

To assess the effectiveness of a CGA programme in meeting the needs of caregivers

Purpose of goal setting

Application of goal setting

Level 6

As above

Level 5

As above

Level 5

Family–therapist interactiona

Study findings

(continued)

Caregivers in both groups reported a decrease in levels of problem behaviours, behavioural bother, and increased satisfaction with leisure activities over time. White family caregivers in the minimal support control condition showed more improvement. African-American caregivers showed the greatest improvements in the skills training condition

Caregiver agreement was a predictor of adherence. About half of the goals were attained

Goals pertaining to day-to-day functioning were most commonly identified as most important. Agreement level on the most important goal between physician and caregiver was poor ( ¼ 0.20)

Mean rate of adherence was 75.1% (range 0–100, SD ¼ 25.1). Highest rates for medical recommendations (80.7%) and lowest for social/ supportive recommendations (53.4%)

Most caregiver goals focused on the needs of the care recipient. More than two-thirds of goals were attained

RCT

Case series

Methodology paper

RCT

Cross-sectional

Corcoran and Gitlin [44]

Corcoran and Gitlin [45]

5 Eisdorfer et al. [46]

6 Foster et al. [47]

Study design

4 Gitlin et al. [43]

Study and article reference

Table 1. Continued.

Caregivers from a notfor-profit communitybased mental health and family services clinic [n ¼ 49]

REACHI study. Refer to [73] [n ¼ 225]

N/A

Family caregivers of people with a diagnosis of Alzheimer’s disease or related disorder Caregiver must identify self as primary caregiver and report dependence of patient in at least two ADLs and report difficulty managing IADL or ADL assistance or dementia behaviour [n ¼ 171] As above [n ¼ 100]

Population [n ¼ sample size]

82.9 (±9.2)

83.23 (±7.7)

N/A

78.3

78.5

Age of care recipients in years (SD, range)

60.3 (±10.1)

68.84 (±11.3)

N/A

59.3 (23–87)

61 (23–92)

Age of caregivers in years (SD, range)

To describe an environmental intervention designed to address caregiver concerns with managing dementia and specific aspects of treatment accepted and utilised by family caregivers To describe an environmental intervention designed to address caregiver concerns with managing dementia To examine the efficacy of family therapy and technology-based intervention in reducing depressive symptoms among family caregivers of patients with Alzheimer’s disease To examine caregiveridentified goal areas and the utility of specific interventions to address goal areas

To identify short-term effects of a home environmental intervention on self-efficacy and upset in caregivers, and on the daily function of patients with dementia

Study aims and objectives

As an integral part of the provision of healthcare

As an integral part of the provision of healthcare

As above

As above

As an integral part of the provision of healthcare

Use of goal setting

‘‘Treatment goals’’ were used to guide intervention

To guide intervention

As above

To guide intervention strategies and enhance the skills of caregivers

See below (Note: ‘‘goal setting’’ not mentioned in this article but was part of the intervention as described below)

Purpose of goal setting

Application of goal setting

Study findings

A significant difference on depressive symptoms at six months from baseline was seen between caregiver type (defined by ethnicity and relationship to care recipient) [F(5,142) ¼ 3.02, p ¼ .013]

Self care and reduction in burn out was the most selected goal area (74% of caregivers). The most used interventions related to the improved understanding of the care recipient’s illness, needs and the caregiver role

Elements of 7b

N/A

Caregivers were willing to use 1068 strategies of which 81% were frequently used. Strategies that modified the task and social environments were more accepted by caregivers than strategies related to the modification of objects

Spouses in the intervention group reported reduced upset (p ¼ 0.049) and women reported greater self-efficacy in managing behaviours (p ¼ 0.038)

Elements of levels 4 and 5

As above

As above

Level 6

Family–therapist interactiona

RCT

RCT

RCT

Case series

Case series

7 GallagherThompson et al. [48]

8 Gitlin Winter et al. [49]

Gitlin et al. [50]

Chee et al. [51]

Hilgeman et al. [52]

80.9

80.1

80.4

80.2

As above [n ¼ 127]

As above [n ¼ 105]

As above [n ¼ 243]

77.1

REACHI study. Refer [73] [n ¼ 190]

REACHI study. Refer to [73] [n ¼ 213]

60.9

60.9

60.8

60.5

57.2

To examine caregiver socio-demographic and psychological characteristics, patient illness severity and treatment implementation factors as predictors of caregiver adherence to an intervention that helps families manage dementia care problems at home To examine the influence of positive aspects of caregiving (PAC) as a moderator of treatment outcome across 12 months

To examine whether treatment effects found at 6 months following active treatment were sustained at 12 months

To examine the effects of the Environmental Skill-Building Programme and covariates on caregiver well-being and care recipient functioning

To compare the impact of two distinct interventions on Anglo and Latino caregivers of elderly relatives with dementia

As above

As above

As above

As an integral part of the provision of healthcare

As a component of the intervention

As above

‘‘Goals’’ not mentioned in paper but goal setting was part of the intervention used in this study as reported above

As above

To guide intervention

To increase positive mood in order to better cope with caregiving

As above

As above

As above

Level 6

Elements of 7b

(continued)

Time varying PAC was predicted by time varying daily burden of care, depression and behavioural bother

Caregivers in the Coping With Caregiving intervention showed a significant increase in the use of coping strategies [t(104) ¼ 3.44, p ¼0.00] compared with the Enhanced Support Group intervention that demonstrated no significant increase [t(107) ¼ 0.51, p ¼ 0.614] The intervention showed significant effects on caregivers’ objective burden at six months from baseline with those in the experimental group reported receiving fewer days help with ADLs (p ¼ 0.026) and less upset with memory related problem behaviours (p ¼ 0.027) At 12 months caregivers in the intervention group reported improved skills (p ¼ 0.028), less need for help (p ¼ 0.043) and fewer behavioural problems (p ¼ 0.019) compared with control group. There was a trend for maintenance on some outcomes Greater adherence was seen in caregivers with better physical health (p50.001), greater exposure to treatment (p50.001), more problem areas addressed (p ¼ 0.012) and when more active therapy techniques were used (p ¼ 0.004)

RCT

82.4 (±8.9)

Patients aged 21 years, with a diagnosis of dementia (or MMSE524) and their family caregivers who provided care for 8 h/week. Patients needed to live within 5 miles of family caregivers [n ¼ 237] Patients aged 65 years with mild to moderate dementia as determined by the brief cognitive rating scale (score 25–40), attending the memory clinic and day clinic of a department of geriatrics. Patients had a caregiver attend to them at least once a week [n ¼ 135] to

RCT

12 Graff et al. [58]

N/A

N/A

Methodology paper

Gitlin et al. [56] 11 Gitlin et al. [57]

78.1

82.1 (±8.4)

Caregivers aged 21 years living with patients with a diagnosis of dementia of MMSE greater than 0, 524 [n ¼ 272]

RCT

10 Gitlin et al. [55]

N/A

N/A

Methodology paper

80.6

Age of care recipients in years (SD, range)

Reever et al. [54]

Families at three Main Line Health Adult Day Service (ADS) centres. Family caregivers identified self as primary caregiver for care recipient at home and participated in ADS admission process [n ¼ 129]

Population [n ¼ sample size]

Non-RCT

Study design

9 Gitlin et al. [53]

Study and article reference

Table 1. Continued.

63.7

62.2 (±12)

N/A

66.3 (±12.2)

N/A

63.3

Age of caregivers in years (SD, range)

To determine the effectiveness of community-based occupational therapy on daily functioning of patients with dementia and caregivers sense of competence

To test a non-pharmacologic intervention (COPE) realigning environmental demands with patient capabilities

To describe project ACT

To describe ADS Plus programme and how to implement the service in adult day settings To test the effects of a non-pharmacologic intervention (ACTAdvancing Caregiver Training) that helps families manage distressing behaviours in people with dementia

To examine the shortand long-term effects of ADSs Plus to enhance family caregiver well-being, increase service utilisation and decrease nursing home placement of impaired older adults enrolled in adult day care

Study aims and objectives

As an integral part of the provision of healthcare

As an integral part of the provision of healthcare

As above

As an integral part of the provision of healthcare

As above

As an integral part of the provision of healthcare

Use of goal setting

To guide intervention

To guide intervention

As above

To guide intervention

As above

To guide service provision

Purpose of goal setting

Application of goal setting

Level 6

Level 5

As above

Level 5

As above

Level 6

Family–therapist interactiona

Study findings

Intervention care recipients had less functional dependence (p ¼ 0.02) and improved engagement (p ¼ 0.03) compared with controls. Caregivers in intervention group had improved wellbeing (p ¼ 0.002) and confidence in using activities (p ¼ 0.002) compared with control caregivers Scores at six weeks on motor performance, process skills and competence for caregivers and care recipients in intervention group showed greater improvement compared with control group participants (p50.0001)

Intervention caregivers reported greater improvement in targeted problem behaviour (p ¼ 0.002), less upset with behaviour (p ¼ 03) and increased confidence in behaviour management (p ¼ 0.01) compared with controls N/A

At three months, ADS plus caregivers reported less symptoms of depression (p ¼ 0.016), enhanced well-being (p ¼ 0.001) and improved confidence managing behaviours (p ¼ 0.013) compared with control caregivers. Intervention effects were demonstrated in long-term results with fewer nursing home placements in intervention group N/A

RCT

Case study

RCT

RCT

Case series

RCT

Graff et al. [59]

13 Graff et al. [60]

14 McCurry et al. [61]

McCurry et al. [62]

15 Nualnetr et al. [63]

16 Rockwood et al. [64]

Stroke survivors from a community in Thailand. Patients who had a stroke 46 months previously, would receive caregiver support for programme more than 30 min per day for study and patients who have mobility problems [n ¼ 10] Community residing, English-speaking people with probable Alzheimer’s disease who had daily contact with a caregiver. Mild to moderate dementia MMSE score 10–25 inclusive and ADScog score 18 [n ¼ 130]

Community dwelling patients with Alzheimer’s Disease and their family caregivers [n ¼ 22]

Community dwelling patients with Alzheimer’s Disease and their family caregivers [n ¼ 36]

An older patient with mild dementia and primary caregiver (wife) [n ¼ 1]

As above

77.5

69.7 (±6.8)

77.4 (±6.6, 63–88)

77.8 (±8.1)

71

As above

Not reported

56.1 (±16.3)

65 (±15.7, 21–87)

77.6 (±6.7)

68

As above

To test the efficacy of galantamine by using the GAS to detect change and comparing those results with findings from other validated instruments

To evaluate whether NITE-AD sleep programme improves sleep in patients who have dementia and who live at home with caregivers To examine the feasibility of training caregivers to implement sleep hygiene recommendations in patients with dementia To evaluate changes in motor activity and mental and social conditions of stroke survivors after participating in the 12week community rehabilitation using a family-centred approach

To enhance an insight into the process of occupational therapy and changes after therapy in an older patient with mild dementia and his primary caregiver

To investigate the effect of community occupational therapy on dementia patients and caregivers quality of life, mood and health status, and to assess caregivers’ sense of control over life

As an integral part of the study design

As an integral part of the provision of healthcare

As above

As an integral part of the provision of healthcare

As an integral part of the provision of healthcare

As above

To measure clinically meaningful change resulting from the treatment

To guide and develop familycentred intervention

To improve patient sleep and to measure outcomes of training programme

To improve patient sleep

To guide intervention and measure outcomes

As above

Level 6

Level 6

As above

Level 5

Level 6

As above

(continued)

Clinician GAS scores showed significantly greater improvement in galantamine group (p ¼ 0.02). Patient/caregiver GAS scores showed more improvement in galantamine group compared with placebo group however, the difference was not significant (p ¼ 0.27)

Family-centred approach to neurorehabilitation significantly improved the client’s mental and social conditions (p50.05)

Care recipients and caregivers in the intervention group had significantly greater improvement on QoL scores compared with the control group (p50.0001) and scores on all other measures showed significant improvement for intervention group participants Global categories of content analysis were daily performance and communication. Themes include the patient’s capacity for pleasure, autonomy and appreciation in participating in daily activities. Caregiver competence improved after occupational therapy Compared with the control group participants in intervention group showed significantly greater (p50.05) improvement in sleeping patterns and increases in weekly exercise days Participants in the active treatment group demonstrated significantly more consistency in maintaining a consistent bedtime and rising time (p50.01)

RCT

Before–after design

Qualitative framework analysis

Qualitative framework analysis

Qualitative framework analysis

Case series

Rockwood et al. [66]

Cook et al. [67]

Cook et al. [68]

Hamilton et al. [69]

17 Rockwood et al. [70]

Study design

Rockwood et al. [65]

Study and article reference

Table 1. Continued.

As above

As above [n ¼ 130]

Community dwelling Alzheimer’s patients with probable mild to moderate dementia and their caregivers [n ¼ 100]

As above

As above

61 (±14)

76 (±8)

As above

As above

As above

As above

Age of caregivers in years (SD, range)

As above

As above

As above

As above [n ¼ 99]

As above

As above

Age of care recipients in years (SD, range)

As above

Population [n ¼ sample size]

To examine how commonly misplacing was reported as a problem. To describe the features associated with misplacing and the frequency of setting goals targeted at reduction in misplacing To understand treatment goals and to estimate whether goals are met during treatment with donepezil. To compare goal attainment

To understand how commonly diminution of verbal repetition was a goal of treatment in patients with Alzheimer disease To compare ADAS-cog responses at six months with outcomes on three clinical measures: clinician’s interviewbased impression of change-plus caregiver input (CIBIC+), patient/caregiver-goal attainment scaling (PGAS) and clinician-GAS (CGAS) To provide a descriptive phenomenology of decreased initiation as reported by patients, caregivers and treating physicians without attention to group assignment To characterise the nature of verbal repetition and its correlates

Study aims and objectives

As an integral part of the study design

As above

As above

As above

As above

As above

Use of goal setting

To measure the outcomes of treatment

As above

As above

As above

As above

As above

Purpose of goal setting

Application of goal setting

Level 6

As above

As above

As above

As above

As above

Family–therapist interactiona

Study findings

Physicians set fewer goals (342, mean (SD) per patient ¼ 3 (1)) than patients/caregivers (855, mean ¼ 9 (3)). CGAS scores demonstrated consistent goal attainment compared with the variable scores described

Decreased initiation of daily activities and/or leisure activities was reported in 65% of care recipients at baseline, 84% of whom specifically targeted increased initiation as a goal of treatment. The most common manifestation was the need for prompting Verbal repetition was reported in 77% of care recipients and 57% of whom identified diminished repetition as a goal for treatment Recurrent occurrences of misplacing were described for 74% of care recipients, 27% of whom identified the issue as a goal for treatment. Care recipients were often aware of the issue and were distressed by it

Reduction of verbal repetition was set as a treatment goal for 44% of care recipients. More patients/caregivers (32%) set repetition goals than physicians (18%) ADAS-cog change scores at six months correlated modestly with changes on the CGAS (r ¼ 0.31), the PGAS (r ¼ 0.29) and the CIBIC+ (r ¼ 0.31)

Case series

Methodology paper

Asp et al. [72]

3,5,7,8 Wisniewski et al. [73]

Caregivers: over the age of 21, living and providing care for relative with ADRD at least 4 h/day for past six month. Care recipients: MMSE524 (moderate–severe cognitive impairment) and at lease on limitation in ADLs or two dependencies in IADL

As above

As above

79

As above

As above

62.3

As above

As above

b

Assessed according to Brown et al.’s [14] seven hierarchy of family–therapist interaction. The goals set with caregivers were not inclusive of care recipients’ needs.

a

Case series

Rockwood et al. [71]

To describe the research design, interventions and outcome measures used in REACH and to characterise the recruited sample. Purpose of study: (a) to test diverse theory driven. caregiving interventions (b) to develop a standardised outcome protocol to assess the impact of different strategies on caregivers and their care recipients and (c) to create a common database that would enable the pooling of data across sites. Overall: to examine the feasibility and outcomes of multiple different intervention approaches

To understand whether a four point change on the ADAS-Cog was reflected in other clinical measures To examine how often reducing repetition was set as a treatment goal and to assess whether change in repetition correlated with changes in other domains

with standard measures

Four out of six sites were included in this review Refer to individual studies: 3,5,7,8

As above

As above

Four out of six sites were included in this review Refer to individual studies: 3,5,7,8

To assay the expectations of patients, caregivers and physicians. To monitor change

To evaluate patientcentred outcomes

Refer to individual REACH articles

As above

As above

physicians. PGAS scores correlated more highly with CIBIC+ than ADAS-cog scores ADAS-Cog change scores correlated with PGAS scores (r ¼ 0.29), CGAS (r ¼ 0.31) and CIBIC+ (r ¼ 0.27) Reducing repetition was a treatment goal for 46% of care recipients. At nine months improvement was seen in 18% and 9% showed improvement at three months. The three month scores correlated with improvement in areas of leisure (r ¼ 0.69) and social skills (r ¼ 0.68) N/A

3 3 3 3

3

3 3

U/C

3 3

3 3

3 3 3 3

3 3 3

3 3 3 3

3

3 3

3 3

3

3 3 3 3 3 3 3 3 3 3

3

3

High Low U/C High Low U/C

3 3 3 3 3 3 3 3 3 3 3 3 3 3

The effect of goal setting on caregiver and care recipient outcomes

3 3 3 3 3 3 3 3 3 3 Burgio et al. [42] Eisdorfer et al. [46]b Gallagher-Thompson et al. [48]b Gitlin et al. [43]c Gitlin Winter et al. [74]b Gitlin et al. [50]b Gitlin et al. [57] Gitlin et al. [55] Graff et al. [60] Graff et al. [59] McCurry et al. [62]c McCurry et al. [61]c Rockwood et al. [64] Rockwood et al. [65]

b

U/C, unclear. a Higgins et al. [29]. b REACHI study. c Protocols were not found for these studies.

3 3 3 3

U/C

Low

High

U/C

3 3 3 3 3 3 3

Low

High

from the patient’s record, the occupational therapist’s report and the initial interview. The report included observations and narrative in-depth interviews taken over the full course of the intervention. The case was reported in-depth and the authors explored the perspectives of patient, carer and therapist through content analysis and narrative style writing. The authors stated that their analysis was based on the principles of systematic comparison of situations and grounded theory. The main limitation of this study is its limited generalisability because the sample is representative of only one person’s experience [74]. Another study [38] provided a simple content analysis of goals and outcomes (n ¼ 141) of data collected through semi-structured interviews. The researchers were interested in exploring the goals and needs of caregivers who attended a Comprehensive Geriatric Programme and the effectiveness of the programme in meeting their goals. The complexity and detail of data was not conveyed, for example, the selection of narrative comments presents only a selection of positive feedback about the programme. The authors felt that their results were validated as they were comparable with findings of previous studies. While the qualitative data in this study provided interesting information, the analyses of data could have been strengthened by further exploration of diversity within the sample population. Three studies [67–69] analysed secondary data of video recorded semi-structured interviews (n ¼ 130) via the framework analysis (a deductive analytical approach used to identify themes that emerge from qualitative data) [75]. The studies used qualitative data that were collected during an RCT [64]. The aims of the studies were to characterise commonly reported symptoms of Alzheimer’s Disease. The retrospective nature of the studies prevented the researchers being able to diversify and intensify the data, develop data management strategies and report on quality assurance checks. Moreover, the findings of the study are limited to the select population of people who participated in the RCT and results cannot be generalised without taking into account potential confounding factors and selection bias. Overall, two of the five descriptive studies more clearly stated their aims with clear links between data interpretation and conclusions [38,58]. The case study provided detailed analysis and rich data, however, was limited to only one case, while the other studies were limited in the depth and richness of collected data. On the whole, the RCTs demonstrated relatively low risk of bias in contrast to the other studies that had varied methodological rigour. Given that we were interested in finding out how goal setting has been used with caregivers, none of the studies were excluded based on their methodological rigour and reporting quality.

3 3

3 3 3 3 3 3 3

Low

High

U/C

Disabil Rehabil, 2014; 36(23): 1943–1963

High Low

Incomplete outcome data Blinding of outcome assessment Blinding (participants and personnel) Allocation concealment Random seq. gen.

Attrition bias Detection bias Performance bias Selection bias Article reference

Table 2. Methodological rigour of RCTs appraised using the Cochrane Collaboration’s risk of bias assessment toola.

Selective reporting

H. S. Tang Yan et al. Reporting bias

1954

No studies isolated the outcomes of the goal setting process from the other elements of the intervention. Therefore, we were not able to isolate and analyse the direct effect of goal setting on the caregiver and/or care recipient outcomes.

Narrative synthesis A narrative synthesis was conducted to examine the application of goal setting. More specifically, the use and purpose of goal setting, the level of collaboration and the process of collaborative goal setting were explored. Use and purpose of goal setting The use and purpose of goal setting in individual studies is presented in Table 1. The process of goal setting for each study is outlined in Figure 2.

N/A – 5

3 5 5



3 –

3 –

– –

3 –



3



5

3

3

3 3

– 3

3

– 3

3

16. Data dredging made clear

3

3

3

3

3

N/A 3

3 3

3

3 3

3

17. Adjust for diff. length of follow up

3

3

3

3

3

N/A 3

3 3

3

3 3

3

18. Appropriate statistical tests

Internal validity (bias)



3

3

3

3

3 3

3 3



3 –



19. Compliance reliable

3

3

3

3

3

3 3

3 3

3

3 3

3

20. Main outcome measures accurate



3b

5b

5

3

5b

5

5

3

5

N/A 3

5 – 3

3 –

N/A

5 N/A

N/A

23. Attention control group

– –

3

– 3

3

22. Low risk of seasonal bias









3 5

5 5

3

– 3

3

21. Low risk of referral/ voluntary bias

5

3

5

3

3

5 3

3 5

3

3 3

3

24. Confounders considered

3

5

5

3

5

N/A –

3

3

3

3



N/A –

3 5

3

5 3 5

3 5

3

26. Loss to follow up considered

5 5

N/A

25. Adjustment for confounders

Internal validity (selection bias)

5

N/A

N/A

N/A

N/A

N/A N/A

N/A N/A

N/A

N/A N/A

N/A

27. Baseline comparability

3

3



3

5

3 3

3 N/A

3

– 3

N/A

28. Sufficient power

Power

3, Yes; 5, No; N/A, not applicable; –, unable to determine. a Downs & Black [30]. b Items 21–23 for the experimental study are from the Downs and Black checklist: 21. Were the patients in different intervention groups from the same population? 22. Were subjects in different intervention groups recruited over the same period of time? 23. Were study subjects randomised to different intervention groups?

3

5

5



3

3

5









3





5

3

5

3

5 3

5

5



N/A 5

3

N/A –

3 5

5 3

3

3 3

3

– 3

5 N/A

– –

N/A

15. Assessors blinded

N/A

– 3

3



14. Subjects blinded

3

Aminzadeh et al. [39] Asp et al. [72] Bogardus et al. [41] Bogardus et al. [40] Chee et al. [51] Corcoran and Gitlin [44] Foster et al. [47] Hilgeman et al. [52] Nualnetr et al. [63] Rockwood et al. [66] Rockwood et al. [65] Rockwood et al. [70] Experimental studyb Gitlin et al. [53]

Study

13. Setting rep.

12. Subjects included representative

11. Subjects asked representative

External validity

Items 11–26 and 28 from the Downs and Black checklist including modifications to items 21–23 (for observational studies only) and addition of item 27

External and internal validity of non-randomised quantitative studies

Table 3. Methodological rigour of other quantitative studies appraised using the Downs and Black checklista.

1956

H. S. Tang Yan et al.

Two distinct approaches to collaborative goal setting are evident: (a) goals are defined collaboratively with the caregivers and care recipients [47,49,53,58,60,61,63] and (b) areas of concern are identified through consultation with caregivers and care recipients after which therapists set goals in a written care plan for the client [55,57]. The mechanism of goal setting is informed by the purpose for which goals are set [76]. Therefore, it is advisable that any attempt to analyse goal setting should consider stratification by the purpose for which goals are set. However, no consistent relationship across studies is evident between how goal setting is used and the why it is used. Nevertheless goal setting is used in three ways:  As an integral part of the provision of healthcare. In the majority of studies, the application of goal setting was either representative of routine clinical practice or the study proposed a novel method of goal setting as part of providing a healthcare service.  As an integral part of the study design. In four studies [38,40,64,70], goal setting was used as a primary outcome measure to make conclusions about the effectiveness of the programme or intervention that was being evaluated, e.g. in Aminzadeh et al.’s study, goal setting was used primarily to measure the effectiveness of an outpatient geriatric programme [38].  As a component of the intervention. In two studies [42,48], goal setting was one component of the caregiver intervention that was being evaluated. The therapists trained clients to set goals in order to achieve the specific objectives of the intervention.

Level of collaboration with caregivers The studies included in this review fit into levels 4–7 of Brown et al.’s [14] hierarchy of family–therapist involvement (Table 1). Some studies do not fit neatly into one level but reflect elements from one or more levels. For example, Foster et al.’s [47] crosssectional study surveyed caregivers who voluntarily participated in group interventions that targeted only caregiver needs. In this instance, elements of collaboration at level seven is evident whereby the caregiver was the director and chose what services were needed. However, the goals set with caregivers were not inclusive of the care recipients’ needs and therefore goals were not family oriented. Similarly, the ‘‘structure ecosystems family therapy’’ implemented in Eisdorfer et al. [46], display elements of level four and five of the hierarchy for family–therapist involvement. A feature of level five evident in the study is the consultant role of the caregiver when the therapist gathered information about family history, care recipient functioning and the caregiver’s experiences. However, from then on, the therapist used the information to assist in family stability which reflects features of level four. Overall, the included studies demonstrate high levels of collaboration with caregivers. Studies that involved goal setting as part of the study design but not as part of the intervention process were not evaluated using the Brown et al.’s [14] hierarchy but it was noted that there were differences in the types of goals set by patient–caregiver dyads and clinicians [40,65,67,68]. For example, caregivers were more likely to report that day-to-day functioning goals were most important whereas clinicians were more likely to be concerned about medical issues [40]. Bogardus et al. [40] sought to identify the level of agreement between caregivers and physicians on the most important treatment goals for frail-aged care recipients. Although 79% of caregivers and physicians had at least one goal in common, the kappa level for agreement on the most important

Disabil Rehabil, 2014; 36(23): 1943–1963

goal was poor ( ¼ 0.2). In a sub-analysis of the same data [41], it was found that the highest percentage of goal attainment reported by caregivers was in the category with the highest distribution of the most important goal identified by caregivers; not physicians. Almost half of the caregivers reported goal attainment of the goal they considered to be most important. Rockwood et al.’s RCT [64] also illustrated differences in the outcomes of treatment perceived by clinicians and patient–caregiver dyads. This suggests that it is important for clients and clinicians to agree on goals for adherence to treatment and goal attainment. There were also differences in the outcomes of treatment perceived by health professionals and patient–caregiver dyads [64]. Therefore, setting goals without care recipient and caregiver collaboration may result in the provision of treatment that is not seen as important by the family and thus not client centred. The process of collaborative goal setting Two groups of articles emerged: those that explain how goals were defined, and articles that provide information on how goals were achieved. All studies except two [42,48] provided information about the process involved in defining goals. Through visual mapping and coding, a number of common phrases became apparent: ‘‘discussed’’, ‘‘interviewed’’, ‘‘trained’’, ‘‘taught’’, ‘‘problem solve’’, ‘‘assessment’’, ‘‘concern’’, ‘‘needs’’ and ‘‘treatment plan’’. The common themes associated with these phrases are more closely examined in the following discussion. No consistent patterns or relationships were identified between the purposes of goal setting, the levels of collaboration with caregivers and the application of goal setting. On the other hand, two studies describe the strategies caregivers were taught on how to monitor progress and achieve goals [48,57]. In both studies, goal setting was a component of the intervention that was provided to alleviate caregiver distress and burden. In Burgio et al. [42], caregivers were free to choose any goal, taught to generate solutions, monitor progress and refine or add goals accordingly. Furthermore, Gallagher-Thompson et al. [48] reported that caregivers were taught to ‘‘set self-change goals and reward oneself for accomplishments’’. Six prominent features of collaborative goal setting Six prominent features of collaborative goal setting emerged from the narrative synthesis of findings as described below. Note that the term ‘‘clients’’ has been used to refer to caregivers, care recipients and any significant others. Rapport was developed with the clients Rapport between health professionals and their clients was recognised in two studies as a key feature of the goal setting process. Corcoran and Gitlin [45] and Eisdorfer et al. [46] explicitly stated that the purpose of the initial sessions of therapy was to build rapport with clients. Other articles alluded to this step in their report of how health professionals sought an understanding of family histories, the roles and current well-being of their clients [53,54,57,58,70], for example, ‘‘during home visits, patients and their carers discussed their experiences of Alzheimer’s Disease’’ [70] and in Reever et al. [54], the family service director listened to the wants of the caregiver. Clients’ areas of concern were discussed The identification of ‘‘needs’’ or ‘‘concerns’’ of clients was a recurring feature across all articles. Articles used the terms ‘‘assessment’’, ‘‘interview’’ and ‘‘discussed’’ to describe how clients’ concerns were identified. One study [59] used formalised

Goal setting with caregivers

DOI: 10.3109/09638288.2014.884173

Family conference was arranged to summarise findings of assessment, discuss recommendations and address caregivers’ and care recipients’ concerns.

Informal caregivers were encouraged to be actively involved in the assessment process, goal setting and treatment planning.

Four months after discharge semi structured questionnaire about caregivers’ needs and goals. Caregivers asked to rank top three goals.

Aminzadeh et al. 2005 [38]

Physician and case manager discussed the assessment and treatment plan with patients and caregivers. Treatment goals for the patient were ascertained separately from the caregivers.

As part of the geriatric assessment, patients and family caregivers were each seen by a physician and a case manager. Caregivers’ perspective on patients’ care actively sought.

Within one week of assessment, caregivers were asked to describe any goals they had for the patient in each of the six categories: ADL, safety, behavioural issues, caregiver stress, medical issues, social support and other. Physicians received a self administered questionnaire within hours of patient’s visit.

Bogardus et al. 2001 [40]

Caregivers were given specific instructions in the application of problem solving to achieve personal goals that might ameliorate caregiver distress.

Caregivers were free to choose any goal related to caregiver distress.

Caregivers were taught to define a problem, generate solutions, choose and implement the solution and monitor progress towards the goal.

Caregivers were also involved in cognitive restructuring: caregivers were taught to have more realistic beliefs and goals. Burgio, Stevens, Guy, Roth, & Haley 2003 [42]

Therapists built rapport & collaborative relationships with caregivers.

Caregivers were encouraged to identify up to three problem areas to address. For each area, the OT and caregivers set behavioural goals, examined environmental influences on behaviour and designed environmental strategies to resolve problems.

The approach and strategies were refined according to progress. Strategies were then generalised to other problem areas.

Gitlin, Corcoran, Winter, Boyce, & Hauck 2001 [43]

Therapists met with caregivers and families to gather information about the family, the care recipient and the caregiving experience. The purpose was to build rapport, establish goals and begin to assess family interactions.

Therapists assessed interactions, determined which ones should be targeted in treatment and established a plan.

Eisdorfer et al. 2003 [46]

Clients and clinicians collaboratively selected treatment goals specific to caregivers’ needs. Foster, Layton, Qualls, & Klebe 2009 [47]

Caregivers were taught cognitive behavioural mood management skills.

Gallagher-Thompson et al. 2003 [48]

Figure 2. The process of goal setting in individual studies.

One of the skills caregivers learnt was to increase positive mood by setting self change goals and rewarding oneself for accomplishments along the way.

1957

1958

H. S. Tang Yan et al. Occupational therapists conducted a systematic evaluation caregiver needs assessment based on eleven domains.

Disabil Rehabil, 2014; 36(23): 1943–1963

Therapists and caregivers developed a targeted plan and initial problem area to target.

Therapists worked with caregivers to identify an achievable behavioural goal (e.g. reduce number of toileting accidents).

Therapists and caregivers engage in collaborative problem solving to identify alternate care strategies.

Therapists coached caregivers’ on use of strategies, reviewed the strategies and taught carers how to generalise the use of them to potential future problems.

Gitlin et al. 2003 [49]

Service directors listened to the wants of caregivers.

Caregivers met face to face with the service director to identify areas of concern and needs.

Service directors conducted informal assessments of caregiver and care recipient interactions and provided education.

A care plan was developed with caregivers. The care plan included goals, objectives and strategies.

Follow up support was provided to all caregivers.

Gitlin, Reever, Dennis, Mathieu, & Hauck 2006 [53]

Occupational therapists met with caregivers to introduce intervention goals, review targeted problem behaviours identified at baseline and conduct observational assessments.

Therapists trained caregivers to problem solve and identify triggers of target problem behaviour and brain stormed with caregivers to identify strategies.

A typed action plan was provided stating the agreed upon target behaviour, treatment goal, potential triggers and strategies.

Gitlin, Winter, Dennis, Hodgson, & Hauck 2010 [55]

Occupational therapists interviewed caregivers to identify patient routines, previous and current roles, habits and interests and caregiver concerns.

Therapists conducted cognitive and functional tests on patients to identify strengths and deficits.

Therapists trained caregivers to implement strategies and use problem solving to identify solutions for caregiver concerns.

Therapists provided caregivers with an action plan for each targeted concern. The plan described treatment goals, patient strengths and specific strategies.

Gitlin, Winter, Dennis, Hodgson, & Hauck 2010 [57]

Four sessions of diagnostics and goal defining took place.

Three narrative interview instruments were used to help patients and caregivers learnt to choose and prioritise meaningful activities: the ethnographic interview for the caregiver, the COPM for both patient and caregiver and the occupational performance history interview.

Graff et al. 2006 [60]

The occupational therapist conducted an in depth interview with the caregiver to gather information about the concerns of the carer and patient with dementia, and to understand the caregiver’s experience of providing care.

The therapist observed the caregiver and patient engaged in gardening and cooking activities. The therapist recorded her observations and analysed the situation.

The therapist initiated discussion about goals. The caregiver suggested a goal which was negotiated and mutual agreement was reached. Likewise, the patient suggested a goal for himself.

Graff et al. 2006 [58]

Figure 2. Continued.

tools to guide the process of identifying clients’ needs: ethnography interview, Occupational Performance History Interview-II and the COPM. Clients were asked about their priorities In a number of studies caregivers prioritised areas of concern [44,49,55,57,58,60,70]. A range of methods were used to

empower clients to identify their priorities. One study gave clients the option to weight their goals [70], in another study clients were asked to identify up to three problem areas to target [44] and caregivers in Aminzadeh et al. [38] ‘‘were asked to identify their top three assessment goals for themselves or the patient’’. Furthermore, the COPM was used in one study [58] to help clients ‘‘choose and prioritise meaningful activities they wanted to improve’’ [60], and the Caregiver Assessment of

Goal setting with caregivers

DOI: 10.3109/09638288.2014.884173

Caregivers kept a one week baseline sleep diary of patients’ sleep patterns.

Caregivers had one group session of sleep hygiene education and reviewed handouts with interventionists.

Interventionists reviewed baseline diaries and if no regular patterns were apparent, caregivers were asked to select a bed time and rising time for the patient. Caregivers were also asked if they wanted to set any sleep hygiene goals.

1959

Caregivers and interventionists identified particular sleep hygiene factors that were problematic and developed an individualised plan.

McCurry, Gibbons, Logsdon, Vitiello, & Teri 2005 [61]

During the first four weeks of the study period, clients’ problems and achievable goals of rehabilitation were discussed among the client, his/her caregiver and the investigator.

A home-based rehabilitation program relevant to the client was cooperatively designed.

Nualnetr, Srisoparb, & Eungpinichpong 2010 [63]

A health professional conducted GAS interviews with caregivers and patients to determine dementia related issues that had the most impact on everyday life. This was done separately from the study physician.

The health professional then probed for detailed descriptions of what patients and carers considered better or worse outcomes.

GAS goals were designed on the basis of information gathered.

Rockwood, Fay, Song, MacKnight, & Gorman 2006 [64]

Treating physicians and nurses set “clinician goals” during baseline office visits based on their examination and observations of patients.

Field researchers conducted in depth home interviews with patients and caregivers within one week of office visits. Patient and caregiver experiences of Alzheimer’s disease, the effect of the disease on everyday life and the expected effects of treatment were discussed.

Field researchers made inquiries in four domains: cognition, function, behaviour and leisure to assist patients and caregivers identify treatment goals. The goals were recorded in patients’ and caregivers’ own words.

Field researchers elicited from patients and carers better and worse outcomes in order to complete the formulation of GAS goals.

Patients and caregivers were given the option to weight their goals on a visual analogue scale in order of relative importance.

Rockwood, Graham, Fay, & Investigators 2002 [70]

Figure 2. Continued.

Management Problems tool was used in two intervention trials on caregivers of people with dementia [55,57]. Clients were involved in collaborative problem solving In seven studies, clients were involved in problem solving to identify strategies to address areas of concern, identify antecedents of behavioural problems, and to develop care plans and rehabilitation programmes [43,49,53,55,58,60,61]. For example, in Gitlin et al.’s [49] study, therapists helped caregivers to identify problem areas and use alternative strategies to manage areas of concern. Similarly, in McCurry et al.’s [61] sleep hygiene study, caregivers were assisted in identifying possible triggers for night time awakenings and plans were collaboratively developed to eliminate triggers. In contrast, clients involved in the pharmacological studies were not involved in collaborative problem solving as medical staff determined treatment doses [64,70]. Goals were defined Goals were defined and recorded in all studies, although the format of goals varied. Three studies used measureable goals [62,64,70], e.g. to maintain regular times (±30 min from selected time) for going to bed and rising [62]. Rockwood et al.’s studies [64,70] used GAS. GAS requires the specification of a measurable goal which is broken down into five sub-goals used to rate the

client’s progression towards the achievement of the overall goal. Two studies set broad goals using immeasurable terms [53,56], e.g. ‘‘Increase perceived health’’ and ‘‘reduce frequency of occurrence of repetitive questioning in the morning and caregiver anger when behaviour occurs’’ The other studies did not provide examples of the recorded goals although statements such as ‘‘establish therapeutic goals’’ [46] and ‘‘sessions of diagnostics and goal defining’’ [60] suggest that goals were defined. Clients were engaged in monitoring progress towards goal attainment In a number of studies where goal setting was implemented as part of the intervention or as a component of the intervention, caregivers were ‘‘trained’’ or ‘‘taught’’ to monitor progress, apply strategies and implement change [43,49,55,57,58,60,62]. For example, caregivers were trained to use problem solving and effective strategies to manage problem behaviours [60] and therapists sought to enhance caregivers’ ability to ‘‘develop more realistic expectations and appraisals of the caregiving situation’’ [49]. Moreover, the pharmacological studies used GAS to measure and monitor change [64,70] and the sleep study [62] used sleep hygiene target goals to assess progress. In Graff et al.’s [58] case study, the COPM was used to gauge the client’s selfperception of improvement.

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Discussion The findings of this mixed methods systematic review suggest that there may be benefits associated with the use of goal setting with caregivers. The review examined how goal setting is used with caregivers of community residing adults aged 45 years and older. Research in dementia was prominent in this area with 88% of the studies having a sample population of people with dementia and their families. The studies ranged in their methodological rigour and clarity of reporting with more recent studies demonstrating higher quality. In conducting the narrative synthesis across the studies on the application of goal setting, six prominent features that highlight the goal setting process were identified: (1) rapport was developed with the clients (caregivers and care recipients), (2) clients’ areas of concern were discussed, (3) clients were asked about their priorities, (4) clients were involved in collaborative problem solving, (5) goals were defined and (6) clients were engaged in monitoring progress towards goal attainment. However, the effects of collaborative goal setting with caregivers cannot be evaluated as current studies do not isolate this component of the intervention process. Our findings resonate with goal setting models based on empirical research [13] and theoretical concepts [77]. Despite the difference of clinical setting and age of care recipients between Sohlberg et al.’s [15] study and our review, the features of clientcentred goal setting are similar. This suggests that it is possible to develop a framework for client-centred goal setting that health professionals can use regardless of the care recipients’ age. Our findings are also supported by a causal model for goal setting developed from seven theoretical constructs that influence the initiation and continuation of goal-related behaviour [77]. Scobbie et al.’s [77] model is framed around behaviour change techniques, including developing goal intention through negotiation with the client, setting a specific goal, activating goal-related behaviour and providing feedback. The common aspects of goal setting between our findings and those of Scobbie et al. [77] and Sohlberg et al. [15] are goal focused discussions, defining the goals and monitoring progress. The GAS and COPM were tools used by studies to measure individual progress and outcomes that are meaningful to the caregivers and care recipients [58,59,60,64,70]. The GAS is a goal setting tool designed primarily for the measurement of outcomes. It was used in the pharmacological studies to evaluate the clinical meaningfulness of a drug intervention from the perspective of the caregivers and care recipients [64,78]. Although the GAS does not provide directions on how to set goals in a collaborative forum, the pharmacological studies and research from other areas of clinical practice [79–81] illustrate the utility of the tool in guiding goal focused discussions. The COPM, on the other hand, provides useful instructions for engaging the caregiver and care recipient in setting goals and measuring outcomes as demonstrated in Graff et al. [58]. In contrast, we found several intervention trials that illustrated how collaborative goal setting processes can guide intervention without the use of formal goal setting tools [49,53,55,57]. The results of these studies suggest that the process of collaborative goal setting has therapeutic value that contributes to the achievement of positive outcomes. The process of goal setting is complex, intrinsically allusive and requires clinical skills that are often internalised and carried out unconsciously which makes the process more difficult to report. For example, developing rapport with caregivers and care recipients was explicitly stated in

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only two studies; however, other studies alluded to aspects involved in developing rapport in their descriptions of the initial stages of the goal-setting process. Moreover, cultural competency and therapists’ attitudes towards family involvement in healthcare are of primary importance for client-centred goal setting. These are highlighted in McLaughlin’s [17] review on collaborative interventions and Brown et al.’s [16] description on the various levels of family– therapist interactions in the provision of occupational therapy. Without interpersonal skills and cultural awareness any application of goal setting is arguably not effective client-centred practice. This is also suggested in a study on therapists’ use of the COPM in a non-Western culture whereby the effectiveness of the COPM in collaborating with clients was found to be partly dependent in the establishment of rapport prior to the use of the tool [82]. A distinct pattern between the purpose of setting goals and the method of goal setting was not obvious from the findings of our review. Levack et al.’s [76] systematic review identified four major purposes for goal setting in rehabilitation. They argued that the purpose for goal setting influences the application of goal setting. For example, setting goals for the purpose of legislative requirements shifts the focus of goal setting from the care recipient to the system, and thereby influences the extent to which caregivers and care recipients are involved. Since this was not evident in our review, further investigation is recommended on how the purpose for which goals are set influences the process of collaborative goal setting with caregivers. The limitations of this review include the heterogeneity of the study designs and therefore the inherent weakness of mixed methods systematic reviews [83]. Given that the aims of this review were exploratory and evaluative, the search strategy did not exclude studies by design and thus a mixed methods approach was most appropriate. The majority of articles were selected from hand searches of reference lists and author citations. Although this increases the risk of bias [28] and raises concerns regarding the reliability of the search strategy and the screening process, the results presented in this review are based on the studies; not on the results of the individual articles. Furthermore, the kappa levels of agreement in the initial screening runs ranged from fair to good. In addition, search strategies were tailored to each indexing system and guided by search terms used in published systematic reviews on goal setting and caregivers. Therefore, confidence may be placed in the rigour of the screening process and search strategies. The findings of this study show that there is emerging evidence for the use of goal setting with caregivers of community residing adults. Despite the fact that client-centred care is prominent in healthcare discourse, there were a surprisingly limited number of studies on collaborative goal setting that we uncovered in this review. This highlights the problem that health professionals are currently unable to determine whether their goal setting practices are effective. Empirical research on how various aspects of the goal setting process influence caregiver and care recipient outcomes would provide invaluable work towards the development of a comprehensive evidence-based model for goal setting with caregivers of adults.

Conclusion In conclusion our systematic review examined the inclusion of caregivers in the goal setting process. Our findings illustrate that the quality of evidence regarding the application of goal setting with caregivers of community residing adults is emerging but is limited in scope and quality. Furthermore, we are currently unable to determine the effect of goal setting as none of the studies

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permitted analysis of caregiver and/or care recipient outcomes that were directly related to the process of goal setting. Nonetheless, our narrative synthesis provides clinicians with a summary of how goal setting has been used in practice and in research. The six prominent features of goal setting that have been identified warrant further investigation.

Acknowledgements We thank all the authors and researchers who responded to requests for further information regarding their work on goal setting. We also acknowledge Elaine Tam who provided guidance with developing the search strategy and Henna Tang Yan who assisted with data management during the screening process.

Declaration of interest This research was completed in partial fulfilment of Heidi Tang Yan’s Bachelor of Applied Science (Occupational Therapy) (Hons) degree at the University of Sydney. The authors have no conflicts of interests to declare.

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Appendix A Final search strategy (Medline) (1) exp Caregivers/

Goal setting with caregivers

DOI: 10.3109/09638288.2014.884173

(2) (3) (4) (5) (6) (7) (8) (9) (10) (11) (12) (13) (14) (15) (16) (17) (18) (19) (20)

care* burden.mp. carer*.mp. care* relief.mp. carer* need*.mp. exp Legal Guardians/ guardian*.mp. exp Family/ proxy/ 1 or 2 or 3 or 4 or 5 or 6 or 7 or 8 or 9 exp Goals/ goal* set*.mp. set* goal*.mp. goal* plan*.mp. goal attainment.mp. goal attainment scale.mp. goal attainment scaling.mp. exp Patient Care Planning/ exp Motivation/ goal attainment method*.mp.

(21) (22) (23) (24) (25) (26) (27) (28) (29) (30) (31) (32) (33) (34) (35) (36) (37) (38)

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attainment.mp. Canadian Occupational Performance Measure.mp. exp ‘‘Outcome and Process Assessment (Health Care)"/ exp ‘‘Outcome Assessment (Health Care)"/ exp Communication/ exp Interview/ exp Interview, Psychological/ carer* need* assessment.mp. exp Geriatric Assessment/ 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27 or 28 or 29 exp Middle Aged/ exp Aged/ exp Rehabilitation/ Rehabilitation Nursing/ Health Services for the Aged/ 31 or 32 or 33 or 35 10 and 30 and 36 limit to humans and Middle Aged (45 years plus)

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Goal setting with caregivers of adults in the community: a mixed methods systematic review.

To examine how goal setting is used with caregivers of community residing adults and the effect of goal setting practices in improving the outcomes...
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