is based on a re-worked literature review published in ... · guided by recommendations, the...

Relatives’ Recommendations for their Information, Support and Training Needs: from evidence to service evaluation on the aphasia care pathway

AUDIT CHECKLIST VERSION 2 May 2014 Rose Hilton and Shona Leenhouts Address for correspondence Dr. Rose Hilton NETA Aphasia Support Centre Speech and Language Sciences King George VI Building Newcastle University Queen Victoria Road Newcastle-upon-Tyne NE1 7RU

[email protected] Phone: (+44) (0)191 208 8550 Fax: (+44) (0)191 222 6546 marked “Aphasia Centre”

Update and Revisions for Version 2

May 2014

Version2 is based on a re-worked literature review published in Aphasiology (Hilton et al 2014). For the revised literature review, we

added the search term therapy in view of the review being focussed on intervention needs.

The inclusion criteria were modified to exclude review articles, in order to keep data closer to the primary source. As a result of this

change, three review articles (Hafsteinsdóttir et al., 2011; Turner & Whitworth, 2006; Visser-Meily et al., 2006) were excluded. Three

mailto:[email protected]

APHASIA: INTERVENTIONS FOR RELATIVES AUDIT CHECKLIST VERSION I January 2013 HILTON & LEENHOUTS

additional articles met our criteria: one had been published after development of the first version of the audit checklist, (Blom

Johansson et al 2013); the other two were linked to the new search term (Brumfitt et al 1994) or found by hand searching, (Pound et al

2001).

A new version of Tables 2 and 3 were created (Hilton et al. 2014) for submission for publication. The superscripts in Version 2 of the

audit checklist relate to these submitted versions.

One author (Hilton) reviewed the synthesis of recommendations into prompts for a semi-structured interview format, including

assigning new data from the 3 additional papers to an appropriate prompt item in the audit checklist. A modified version of the new

Table 3, labelled Table 3 Version 2 is included here. Recommendations listed in the modified Table 3 are cross referenced to prompt

items in the audit checklist. This makes the origins in the literature of the prompts more transparent.

The audit checklist introduction and instructions have been re-written to include the more salient in-patient / out-patient

categorisation evident from the pilot study. The stages of the care pathway have been defined. Version 2 also expressly highlights the

options to use the checklist as a flexible tool to meet different service needs, as indicated by a service provider / service user

consultation event (Hilton, Morris and Leenhouts 2014).

BACKGROUND to VERSION 1

A search of current literature up to September 2012 was undertaken to investigate the needs of relatives of people with aphasia. The scope of the review included sudden onset aphasia, and excluded aphasia secondary to dementia and primary progressive aphasia where this was differentiated in the literature. The literature refers to relatives, carers and family members, spouses and significant others. Except within quotes, we will use the term ‘relatives’ to cover all of these terms.

Databases searched included PubMed, Scopus, Web of Knowledge and Google Scholar. The terms: caregiver, carer, family, relative, spouse; were used in combination with: aphasia, communication, stroke; and: information, education, support, training, needs. Searches were not limited by year or country. Criteria for inclusion were that it was possible to identify views being expressed by relatives of a person with aphasia when they were talking about the


impact of aphasia and their aphasia related needs. Papers where the ownership of the opinion was ambiguous, or where professionals or people with aphasia were suggesting how relatives’ needs should be met, were excluded.

Data was scanned for two broad themes: what is needed and when it is needed. In order to further explore emergent themes and to cluster commonalities, pragmatic definitions were used, (Table 1), to categorise recommendations into three intervention types: factual information, emotional and psychological support, and practical skills.

Recommendations were assigned to the three time periods defined by Avent et al, (2005) where this was explicitly suggested by participants in the literature. For example, need for emotional support was constant at every stage, but knowledge about prognosis was far

more important in the acute stage than the chronic stage. Recommendations not specified into a stage were categorised as “unspecified”. The included papers and an outline of the methodology used in each study are shown in Table 2.

Excluding literature reviews, the evidence was re-ordered into frequency of occurrence and grouped according to the suggested stage along the care pathway (Table 3). Table 3 identifies WHAT type of intervention and WHEN it is recommended, if specified, ranked by frequency of occurrence.

THE AUDIT CHECKLIST

Construction method for version 1

To create an audit tool, (see Appendix), the raw form of Table 3, taken direct from the articles, was condensed into a checklist of recommendations by one author, (SL), by amalgamating similarly worded comments. For example, ‘opportunity to receive psychosocial support in a 1:1 setting’ and ‘opportunity to talk about your situation as the significant other of a person with aphasia,’ were combined into item 40 on the checklist: ‘an opportunity to discuss psychological and emotional issues one-to-one.’ Similarly, ‘Details of where to go/who to contact for further information needs: ‘a named contact’ and ‘Relatives should be made aware of who/where to go to for further information’ are combined into item 33: ‘a point of contact provided for further information throughout pathway’. The audit tool was designed for clinicians to tally which interventions had been offered, but from the perspective of the service user.

To assess the robustness of this process, a different author, (RH), independently related the unreferenced checklist items back to Table 3. 111 recommendations in Table 3 (92%) were identically assigned by this process. Two additional items were specified on the checklist by RH, possibly reflecting greater clinical experience. For example, where SL included ‘Additional support during transitions between hospital and home’ within more general support, RH identified that as a specific area of need. Other areas of difference were resolved by reference back to the literature and by five further amalgamations where items were seen to overlap in meaning. Superscripts were then added to the completed checklist relating each item to the literature identified in


Tables 2 and 3. The resultant checklist is formed of 69 single-sentence recommendations within subsections of Information, Support and Training, sequenced with the aim of being able to tally the checklist during a naturally flowing conversation.

Three check-boxes, relating to care pathway stages, (Avent et al., 2005) , were provided for each recommendation. A pre-printed point in the box showed that the recommendation in the literature was related to a specific stage by the informant. Shading represented a general recommendation not specified to a stage. Some items included both stage-specific and general recommendations from different informants. An unmarked white box therefore indicated that the intervention had been specifically recommended as more appropriate at a different stage of the care pathway. Space was provided to record additional comments.

Pilot study

A pilot study was conducted in order to assess the validity of the checklist in accessing retrospective information in a semi-structured interview format, the practicality of the tool for a clinical setting, and the ability of the tool to capture useful information beyond the checklist items.

For the pilot study, a more open dialogue, rather than a questionnaire, was used to reveal issues not already identified in the checklist. These might be unmet need, or constructive suggestions for service improvement, or an individual variable. Given the qualitative nature of the underlying evidence for the audit tool, and individual variation in experience and adjustment, it was felt that other needs were likely to be mentioned, and would need to be accommodated. By contrast, a questionnaire can be more focussed, quicker to administer and with the potential for remote administration, but less able to validate individual and variable perspectives. For the pilot study, it was more important to be able to elicit alternative viewpoints, than to confirm what interventions relatives had or had not received, as we were not auditing a service. Questions for semi-structured individual interviews were embedded in the audit tool for ease of use (see Appendix).

Pilot Procedure

Participants

Pilot participants were four relatives of people with acquired aphasia following a single stroke. All the participants were involved in a local aphasia charity. Participants were approached by the charity co-ordinator who obtained verbal agreement to participation. Written consent for video-recording and for use of the recording for teaching and research purposes was obtained prior to interview. All four pilot participants had experienced every stage of the stroke care pathway (Avent et al., 2005) across a range of providers and service structures. Two men and two women with two to five years’ experience of aphasia (see Table 4) were interviewed. Collectively, they had experience in two regional units (acute and rehabilitation), three hospitals and three community services. Interview Procedure


The audit tool was piloted using individual semi-structured interviews to cover specific topics during full exploration of participants’ experiences. The procedure for conducting the semi-structured interviews was that advocated by Pring (2005).

The preamble (see Appendix) was designed to inform participants of the interview purpose with emphasis on experiences related to aphasia rather than the wider impact of stroke (in line with Greenwood et al., 2010). All the semi-structured interviews were conducted and analysed by one author (SL).

Open questions (see Appendix) derived from each sub-section of Table 3 were asked. Guided by recommendations, the interviewer could probe and prompt participants (Robson, 2002) allowing completion of the audit tool and recording of additional information. For further insight, the final question aimed to encourage reflection unguided by specific themes.

Interviews were conducted in a clinic room. The person with aphasia was occupied in support group activities nearby during this period, so that the interviews were private and unhurried. The checklist was tallied during the interview. Video-recordings were viewed shortly after each interview for clarification and verbatim transcription of relevant comments.

Results of the pilot study

Validity

The format of the semi-structured interview was an effective method to elicit reflective information. Audit tool recommendations provided effective prompts to facilitate recall. Closed questions, derived from recommendations, were acceptable to help participants attribute experiences specifically to aphasia, which can be difficult to separate from the global experience of stroke (Le Dorze & Signori, 2010), and to prompt recall without restricting elaboration.

The pilot suggests that the audit tool could evaluate service provision and prompt ideas for improvement. Pilot participants reflected on personal experience, while demonstrating ability to view services from the perspective of others. For example, on the psychosocial impact of aphasia P1 suggested: ‘I don’t think I particularly suffered from it but I can well imagine how others would.’ P3 was aware of the individual nature of aphasia: ‘it’s difficult for professionals to give everybody what they need because everybody’s needs are so different.’

The audit tool demonstrated ability to surface barriers and facilitators to meeting relatives’ needs described in Le Dorze & Signori (2010), and explore reasons behind unmet needs at the dyad level as in the ecological framework of Paul & Sanders (2010). For example, P3 said of respite opportunities: ‘That again came too early, when he’d just come home.’ P2 responded to the same question: ‘I’ve suggested that to [… ] and she looks with absolute horror and I couldn’t do it.’ This response may illustrate the limitations arising from mutual dependency described by Denman (1998). Facilitators, such as charity involvement, were also highlighted. The audit tool could enable services to identify barriers and facilitators, informing meaningful service change.


The pilot highlighted relatives’ ability to identify problem areas they can cope with and those which require services to manage (Denman, 1998). For example, P4 knew where to obtain formal support, but had not: ‘I haven’t really felt as though I’ve needed to contact anybody outside family at all…I’ve been able to turn to one or the other.’ P2 knew he had the opportunity to discuss psychosocial issues but said: ‘I wouldn’t bother them…I reckon I could cope with anything.’ Regarding communication partner training, available locally, P2 felt he could have benefitted from it earlier. P1 said: ‘Had that been offered, and had that been available, I definitely would have done that.’

Revealing novel unmet needs

Presentation of the audit tool in this format supported recall and did not exclude reporting of other needs. For example, P1 recalled needing support as a parent of young children but found ‘there was nothing there.’ P1’s response indicates the audit tool’s power to uncover user-specific recommendations when presented as a semi-structured interview, allowing individual variations in service need to be accommodated. It functioned as both a service monitoring tool and also a clinical check for that individual.

Retrospective Recall

Although some fine detail of experience was difficult to recall after a significant timespan in the case of the pilot participants, hindsight could provide suggestions for service improvement. For example, P4 reported: ‘in hindsight now, looking back, it would have been nice to speak to someone who was maybe 2 or 3 years down the line.’ Relatives could look back, and reflect on their experience over several years, recalling details about interventions they had received, been offered, or would have wished for, but they were vague in some aspects of recall. In particular, the three stages in the care pathway were not readily distinguished. This may be unsurprising: recommendations were based on the experiences of relatives whereas the pathway relates to the patient experience.

Practicality

The semi-structured interviews for the pilot study took 45 to 90 minutes each and additional time to review recordings. With practice over the course of the study, time requirements reduced. Live scoring was affected by participants not readily and clearly relating to the pathway stage, as discussed above. Generally, it was possible to complete the audit tool and transcribe comments live, but recording allowed clarification and verbatim transcription.

DISCUSSION

The audit tool was able to record whether recommendations about best practice were achieved for a particular individual, while capturing constructive responses for implementing change.


Analysis of relatives’ needs, especially relating to adjustment to caregiving roles, indicates transition from hospital to home is significant (Cameron & Gignac, 2008; Denman, 1998). Categorising recommendations as inpatient or outpatient could provide a more memorable distinction for the relative, and be applicable to a range of health service organisational structures. Additionally, revision could include specific space to record timing-related comments.

Time costs are an important consideration for implementation. In clinical practice, services would be unlikely to want to audit an entire stroke pathway experience in one session, as was the case during the pilot study. Focussing on just one type of intervention, or just one stage of the care pathway, would considerably shorten the time needed. By contrast with the circumstances of the pilot study, which involved a wide range of services, time requirements would reduce further if just one service was being audited, whose structure and care pathway was familiar to the interviewer. A more focussed snapshot would also make on-line scoring easier to complete, although additional qualitative information may be limited without audio-recording.

While the pilot study only validates the audit tool’s use as a semi-structured individual interview, it is adaptable and with appropriate re-phrasing and piloting can be remodelled as a questionnaire, or reduced to short subsections for use with individuals or focus groups. For example, designing a questionnaire purpose-made to address a sub-section of the checklist would provide a more practical audit tool for larger numbers of participants, or where time constraints are paramount. The semi-structured interview format does, however, promote the importance of individual experience at a specific time, a factor which has been highlighted as important in clinical practice ((Denman, 1998; Howe et al., 2012; Purdy & Hindenlang, 2005). It is a flexible tool that can be used selectively to explore relatives’ perceptions of service provision at a particular point in the care pathway, or of a particular type of intervention, or combinations of these. Alternatively, it can be used to track experience longitudinally, over a whole care pathway. It has a dynamic aspect, allowing novel perspectives to be incorporated into the checklist and added to the qualitative evidence base.

CLINICAL APPLICATION

The information in the literature is dispersed and relatively inaccessible in terms of being able to extract understanding of best practice. By clustering the information into themes and structuring it, we can make it more easily available to clinicians in order to implement it for current service users.

The pilot study of the audit tool, in a checklist format, showed that exploration of relatives’ experience and needs in a semi-structured interview allows for novel opinion and experience to be included, as well as monitoring provision against an evidence based standard. The checklist can both provide a means to develop clinicians’ awareness of the needs of relatives of people with aphasia (Blom Johansson et al 2011), and a system for grass roots feedback from service users, (Royal College of Physicians, 2012). Recurrent themes in the literature documenting relatives’ needs (Howe et al., 2012) are evident within the audit tool. By clustering emergent themes from a disparate literature we can see what the consensual needs are. Consistent use of a systematic tool for gathering information about service user experience would capture views of the wider population of relatives, without favouring those with strong feelings on the subject (Horton et al., 1998; Howe et al., 2012).


Consulting service users and using their experience to inform stroke professionals, and service users new to stroke, is well established (Law et al., 2010). Needs identified through exploration of relatives’ experiences should inform service organisation (Denman, 1998). Recommendations service users have made for enhancing the quality of care are reflected in the audit tool.

Current focus is on quality of care, with an imperative to both deliver and record this. Services benefit from setting and monitoring standards of care and having more tangible evidence of qualitative aspects of interventions (RCSLT, 2009). Services need to be able to show that they are meeting the needs of relatives, and be able to identify gaps in order to implement improvement. There are gaps between what therapists know they should provide and what they do provide (Blom Johansson et al., 2011), and between the existing evidence and awareness of it by professionals and by service users (Pollock et al., 2012) , and between recommended best practice and perceived delivery (Greenwood et al., 2010; Manders et al., 2011). This audit tool can compare service-user views and experience with published evidence, providing rationale for change.

Clinical guidelines recognise the need for intervention with relatives (Pellerin, Rochette, & Racine, 2011). Their needs do not necessarily relate to aphasia severity (Michallet et al., 2001), but gender, age and pre-morbid family roles may have influence (Blom Johansson et al., 2012). Needs correspond to adjustment to life with aphasia and the caregiving role (Purdy & Hindenlang, 2005), as well as the stages of aphasia treatment: acute (hospitalisation); rehabilitation (therapy) and, in the words of one researcher “chronic carer” (Martyn cited in Denman, 1998). The audit checklist includes information about timing which has the potential to indicate to clinicians which interventions to concentrate their resources on at different stages in the care pathway.

Greater attention should be given to the documented diversity of relatives’ experiences as a basis for improving clinical practice (Avent et al., 2005; Greenwood et al., 2010). A pre-requisite for improvement is to have a system for measurement of existing practice, a rationale for making changes, and a mechanism for monitoring the effect of changes. All these need to be set against pre-established and evidence-based criteria. These are the elements of a clinical audit cycle (NICE, 2002). Within the cycle there are stages that follow a systematic process of establishing best practice, measuring care against criteria, taking action to improve care, and monitoring to sustain improvement. The checklist developed in this paper offers published advice from service users about best practice and a tool to measure services and monitor the effects of change. The checklist encapsulates recommendations in a functional format, enabling services to look at their care pathway and monitor whether they are implementing those recommendations in a way that is perceived by relatives as helpful. The initial pilot study indicates that the audit tool could provide a framework for evaluation of information, support and training received by relatives of people with aphasia. Individual unmet needs can be revealed and added to the cumulative evidence base. Manders et al (2011), for example, recognise younger relatives’ needs are not represented in the current literature and this area did not appear explicitly in the audit tool but surfaced during the pilot interviews. The audit tool has potential to evaluate availability, access and use of services: for example, identifying where lack of information is influencing service take up.


The methodology to derive the quantitative checklist is transferable to other aspects of health and social care. From qualitative information, for example talk and opinion in focus groups, the data was organised into a framework offering concrete guidance from service users to clinicians which could then be formatted into an audit tool. The administration of the audit tool is open to revision of either format or, as evidence accumulates, content. Service providers can use this to measure the quality of their care and to support clinicians’ interventions with relatives. The tool is both reflective and dynamic in being able to monitor a standard of intervention and add to the evidence base by embracing novel recommendations from participants.


Table 1 Working definitions of “Information” “Support” and “Training”

Category Definition

Information Factual knowledge relating to stroke, aphasia and the individual’s communication impairment. Therapy approaches and plans for the individual as well as prognosis. Knowledge about the availability of services providing further information, support or training for relatives of people with aphasia. Signposting to services including wider support e.g. respite care, carers’ centres. Example: Telling someone about a support service

Support Psychosocial support for relatives provided as part of the speech and language therapy process. Specific counselling services designed to support adjustment to and acceptance of aphasia and resulting role changes. Peer support e.g. through relatives’ and carers’ groups. Referral to specialist support e.g. counselling Example: Providing counselling or referring to counselling, or specifically targeting psychosocial support for relative

Training Specific, practical coaching in communication techniques and the experience of aphasia. Teaching of techniques or strategies to enable the relative to support conversation and facilitate successful communication with the person with aphasia. Example: Training in a skill to be able to hold a conversation with person with aphasia


Table 2: Summary of literature used to develop the audit checklist (alphabetical order; details as reported in the original paper) submitted to Aphasiology January 2014

ID

No.

Author,

Year,

Country

Relevant Aims or Purpose Participants/

Sample

Time Post

Aphasia Onset and

Severity of Aphasia

Methodology

1 Avent et al.,

(2005),

USA

To identify needs of family

members at acute,

rehabilitation & chronic

stages of aphasia

16 adult relatives

(12 spouses, 2

children, 1 parent, 1

partner).

15 female, 1 male

Mean 5.5 years

(range 1;10 – 13

years)

Severity not

reported

Qualitative thematic analysis of multiple focus

groups (4-6 participants) in 2 settings

Retrospective at 3 stages: onset of aphasia,

during SLT, chronic phase at home. Transcripts

were checked by participants for accuracy. Needs

were ranked according to frequency of mention.

2 Blom

Johansson et

al., (2012),

Sweden

To describe significant

others’ experience of

speech and language

therapy services and their

motivation to be involved

173 significant others

139 recruited through

SLT services; the

remainder from

Aphasia Associations.

115 female; 57 male;

At least 3 months.

Mean 41.3 months

(range 3-312

months)

Aphasia type was

described for the

majority of

Questionnaire based on previous research: fixed

responses and open questions – quantitative and

qualitative analysis. Informants consecutively

invited to participate through SLT services and

aphasia associations across Sweden.


147 co-habiting with

PWA, 4 non co-

habiting partners; 6

parents, 13 children, 1

brother, 1 friend.

(Missing values on

some questionnaires

accounts for different

total numbers )

Mean age 64 (range

33-87)

participants: anterior

72, posterior 47,

global 18.

The majority had

severe or moderate

aphasia with

approximately a fifth

having mild aphasia.

3 Blom

Johansson et

al (2013)

Sweden

Feasibility study of early

intervention for relatives

exploring content,

outcome, format and

materials in relation to

emotional support,

2 men and 1 woman

and their partners

with aphasia

0.5 to 2 months post

onset.

1 severe Wernicke’s

aphasia

1 severe Broca’s

aphasia

Qualitative and quantitative analysis pre- and

post- intervention for each member of the 3

dyads assessing supported conversation skills,

conversation participation, understanding of

aphasia and communication, and an evaluation of

the intervention.


information and

communication partner

training.

1 recovering non-

fluent aphasia.

4 Booth &

Swabey,

(1999),

UK

To determine whether a

communication skills group

programme is beneficial for

caregivers

4 dyads

2 female, 2 male.

2 spouses; 2 other

relatives,

All living with person

with aphasia (PWA)

Age 45-72

At least 6 months.

Mixed type and

severity of aphasia

Qualitative and Quantitative analysis pre- and

post- intervention, Conversation Analysis Profile

for People with Aphasia, CAPPA (Whitworth,

Perkins and Lesser, 1997) to evaluate formal

conversation partner training using data from

individual dyads.

5 Brown et al.,

(2011)

Australia

To explore the meaning of

living successfully with

aphasia, from the

perspective of family

members

24 relatives of 23 PWA

(9 male,

15 female;

19 spouses, 3 parents,

2 children. Age 40-87)

Nominated by PWA

More than 2 years.

17 mild (of whom 6

were recovered), 6

moderate-severe

Qualitative (interpretative phenomenological)

analysis of semi-structured, in-depth individual

interviews


6 Brumfitt et al

(1994),

UK

To evaluate the usefulness

of written information for

relatives about acquired

communication disorders

and compare with SLT

views

14 ‘carers’ and 20

SLTs.

No information Questionnaire and structured interview

consisting of largely closed questions providing

quantitative data and a final open question plus

capture of other qualitative data was also

transcribed for clarification of answers.

7 Denman,

(1998),

UK

To identify the needs of

spouses. To determine

their ideas for solutions to

problems faced.

9 spouses

(6 female; 3 male)

At least 1 year.

Severity not

reported

Qualitative analysis of semi-structured 1:1

interviews

8 Hinckley &

Packard,

(2001),

USA

To evaluate a 2 day family

education seminar for

relatives of PWA

Total 36

Intervention and non-

intervention groups

21 spouses who

attended a course;

mean age 56;

Mean 3.6 years.

Severity not

reported as not felt

to be relevant to

aim.

A qualitative comparison of relatives attending an

aphasia education seminar with non- participants

sent written resource guide.

Questionnaire to participants and to non-

participants immediately after training seminar +

6 month follow up


15 spouses who could

not attend the course;

Mean age 62

Topic based knowledge ratings completed

separately by PWA and relative.

Other quantitative measures were completed

jointly as single outcome from the dyad

9 Horton et al.,

(1998),

UK

To determine how relatives

of PWA perceive speech

and language therapy

services

18 PWA and 12

relatives

Mixed group of

Partners/relatives of

PWA.

Greater than 9

months.

Severity not

reported

Focus groups about therapy provision – relatives

and PWA present

10 Howe et al.,

(2012),

New Zealand

& Australia

To identify the

rehabilitation goals family

members of PWA have for

themselves

48 relatives

nominated by 45 PWA

(28 partners, 5

siblings, 4 daughters, 3

sons, 2 parents, 6

other).

36 female, 12 male

1-195 months

Mixed severity

including 6 possibly

recovered.

From a cohort

recruited to

represent maximum

Qualitative analysis of in depth semi-structured

interviews


Aged 24-83

Nominated by PWA

variation across a

wide range of

parameters

11 Le Dorze &

Signori.,

(2010),

Canada

To identify the needs of

spouses and the barriers

and facilitators to meeting

them

11 spouses (9 female;

2 male)

Mean age 60.5

Mean 6 years 8

months

(range 3-15 years)

Severity of aphasia: 3

mild, 4 moderate, 4

severe

Qualitative analysis of group interviews (2-4

participants)

12 Manders et

al., (2011),

Belgium

To investigate how

important significant

others find it to be

informed, supported and

trained by speech and

language therapists and

how these needs are

fulfilled. (also considered

Total 77

54 partners (mean age

60;04) 23 children

(mean age 41;08)

30% less than 6

months; 41% 6

months-2 years; 29%

more than 2 years

No indication of type

or severity of

aphasia

Questionnaire based on literature findings

(electronic/paper versions). Participants to rate

importance of factors. 4 point scale reduced to

binary choice important/not important for

analysis => quantitative data


therapists’ views in

parallel)

13 Michallet &

LeDorze,

(2001),

Canada

To investigate needs

perceived by spouses

caring for people with

severe aphasia.

6 spouses (5 female, 1

male)

Age 59-71 years

(mean 65;10)

At least 1 year

All with severe

aphasia

Qualitative analysis of 1:1 semi-structured

interviews. 2 interviews with gap of 4-8 weeks.

Interview 2 to validate analysis, clarify and verify.

Retrospective recall of 3 stages: hospitalisation,

rehabilitation, coming home.

Need defined as a discrepancy between what is

and what should be i.e. actual versus hope for

situation.

Analysis and categorisation of need verified with

a group of relatives of PW severe aphasia (1 of

whom was in the original study)

14 Paul &

Sanders,

(2010), USA

To explore the education

experiences and needs of

communication partners of

9 communication

partners

Mean age 58

2 males, 7 females;

0.5-24 months

Range of severity in

functional

communication as

Qualitative analysis of 1:1 semi-structured

interviews.


PWA, within the healthcare

system

3 wives, 1 husband, 1

friend, 2 daughters, 1

son, 1 significant other

assessed by non-

aphasic participant

15 Pound et al

(2001)

UK

To use autobiographical

reports to discover the

impact of aphasia on their

lives and deliver a tailor-

made course to facilitate

creation of new ways of

living with aphasia

4 spouses all women 12-22 months post

onset

3 severe aphasia ; 1

moderate

In depth interviews before, the course,

immediately after and 6 months after the course.

16 Purdy &

Hindenlang,

(2005),

USA

To explore the benefit of a

caregiver education and

training programme (using

didactical and experiential

approaches in a group

setting)

10 caregivers (7

spouses,

1 fiance, 1 sister, 1

aide.

Mean age 64.6 years

4-130 months (mean

35.2 months)

Moderate to

severely impaired.

9 sudden onset

aphasia but 1

primary progressive

Questionnaire to obtain relatives’ views on

benefits. Qualitative results tallied.


aphasia (paper

retained in review as

PPA would not

substantially change

the outcome of a

one-off training).

17 Simmons-

Mackie et

al., (2005)

USA

To evaluate

communication partner

training in a single case

study, for a wife of a

person with aphasia

1 wife and her

husband with aphasia.

Age 62

4 years

Moderately severe

Quantitative outcome measures of specific

communicative behaviours. Post treatment

qualitative questionnaire completed by wife to

obtain her views on the intervention.


Modified Table 3. Recommendations for Information, Support & Training at three stages on the aphasia care pathway ; Version 2 cross referenced to prompt items on the

Audit Checklist Version 2 May 2014

Submission tom Aphasiology published as Hilton et al 2014

Superscripts refer to the article identity in Table 2 in Hilton et al 2014. P number refers to related prompt item number in Audit Checklist

INFORMATION

Acute Stage

Rehabilitation Stage

Chronic Stage

Unspecified stage

P2-Clear information, description

and diagnosis of aphasia, its causes

and nature 1,7,10,12,13,14

P9-Information about prognosis

1,2,7, 10,13 including likelihood

recurrence13,

P1-Information about stroke 10,2,13

including physical consequences13

P37,38-Information about

rehabilitation plans from ward

staff3

P11-Need to be made aware of the

aims, purpose, processes and results of

assessment/therapy/treatment1,10,11,12,13

P7-Information on how to facilitate the

PWA in conversation1,10,12,14 including

checking level of understanding14 and

communication: do’s and don’ts17

P11-Involvement in therapy to gain

understanding of the PWA condition

and progress10,2 e.g. observing

sessions10,2,12,14 should be mandatory13

P39-Information on resources to help

live with aphasia e.g. long term

planning, travel, finances etc1,11,14

P11,13-Information about and

involvement in therapy even many

years post onset10 and how to continue

therapy at home1,2

P2,5,8-Continued need for

comprehensive information on

aphasia1,13, on its complex nature4 , and

P37-Information about local aphasia

associations or services7,2,11,12,14

P2,7,9-Comprehensive information about

aphasia8 including prognosis2, 12 and how

conversations can break down and be

facilitated4,16

P11,13,65-Information about how to continue

therapy at home8 and improve communcation12

including AAC devices and how to adapt them2

P4-Information about benefits related to

aphasia14 and financial support 11


and availability of local aphasia

services before leaving hospital1,7

P5-Specific information about the

individual’s aphasia 1,12,14

P4-An explanation of procedures

and entitlements7

P6-Information on how much

support to provide/independence

to encourage5

P32,35,41-Information on what

might help deal with the situation

and psychosocial support1

P7-Information on what the family

can do to help the PWA

communicate1

P37,38-Information about services

available10 and how to access them1,5,7

P13-Information on how to support the

person with aphasia (PWA) with

therapy at home10,2,14

P12-Clear information on their role and

expected level of involvement in

therapy1,9,10

P9-Prognosis1,13

P2,5,8- On-going need for

comprehensive information about

aphasia and impact on relatives’

communication with PWA1,11,13

P14-To have someone go through

psychological and emotional issues the

caregiver might experience, e.g.

how to minimise impact on

communication at home 1

P27,37-To be made aware of the

services available in the community7

even many years post onset10 with

details of where to go/who to contact

for further information needs,

especially for family living separately

from PWA10

P40-Information on the benefits of

wider rehabilitation services in addition

to therapy e.g. voluntary opportunities

and alternative therapies and activities1

P37,41-Information on support services

available for families and PWA1

P27-Relatives should be made aware of

who/where to go to for further information5,7

P18-Specific information, tailored to individual

including coping strategies 8,16

P22-Need for information and understanding so

they can answer PWAs questions when they

arise10

P40,41-Information about communication

partner training and psycho-social services 2

P6-Information on how much support to

provide/independence to encourage, e.g. PWA

managing finances if aphasia affects number

use14

P27-Access to medical information and

services15


P3,15-Information about co-

existing behavioural and medical

conditions 1

P10-Information about language

stimulation3

depression1, and give information on

how to cope1,8

P8-Specific information on how aphasia

would affect day to day life at home12,13

P1- On-going need for comprehensive

information from medical and

rehabilitation staff about effects of

stroke, aetiology, medication, the PWA

capabilities and disabilities, even once

condition has stabilised13

P15-Information on the psychological

and social consequences of stroke1

including how to deal with co-existing

behaviours e.g. depression1

P16-Information on how to deal with

frustration in daily communication1


P41-Signposting to psychosocial support

from peers1

Manner of giving information

in acute stage

P17-With positivity and

hopefullness1,10,14

P30,31- Information given verbally

and in writing6, with written

information such as a guidebook

before leaving the acute

setting6,11,14

P18-Personal explanations; not

overloaded with literature 6,7,10

P25-Opportunity for one-to-one

time with clinicians 1,3,10

Manner of giving information

in rehabilitation stage

P17-Information to be given with

positivity and sense of hope1,5, 10,14

P22-To have a good relationship with

health professionals and to be

considered a partner in the processes

2,10,13 with own expertise to contribute 10

P25-Opportunity for one-to-one time

with the therapist3, 9,14

P30,31-To have a short, clear guidebook

provided before leaving rehabilitation

setting6,11,14

Manner of giving information in

chronic stage

P17-Continued need for

hopefullness1,5,13,14

P42-Importance peer support groups

for access to leaflets and information

exchange 7,13

P27-A named contact person7

P22-To have a good relationship with

health professionals and to be

considered a partner in the processes13

P7-Individualised information specific to

dyad14

P31-Written information to refer back

to in the long term6

Manner of giving information unspecified

P31-Information about aphasia should be given

orally and in written forms 2,6,10,11,12,14,16

P17-Hopefullness5,14,16 and positivity10,12

P22-Need to be considered a full member of the

rehabilitation team11,12 with access to the same

information as the PWA11 involved in

discussions and decision making rather than just

given information13 e.g. attending progress

meetings14

P19,20,30 -Information should be provided in a

co-ordinated systematic way7,10,14 and available

in a complete format with all information in one

place7,10 without need to request it7,10,14


P21,26-Time allowed for explaining

and answering questions13 at an

accessible time14

P10,26.29-Information about

aphasia and therapy should be

provided repeatedly with

opportunities to seek clarification

as acceptance occurs 7,9

P24-Opportunity for early contact

with SLT for information and

clarification3,9

P22-To have a good relationship

with health professionals and to be

considered a partner in the

processes 10,13

P30-Information offered, rather

than on demand 7

P27-To have a point of contact for

questions that arise1

P23-Maintain dignity of PWA avoiding

focus on impairment in front of

relative15

P28-Information should be provided in an

accessible format, free from medical

jargon6,10,14,

P27,30-Explanations should be regularly

repeated9 and with a chance for follow up,

rather than one off provision 9,14

P7-Observing SLT working with support groups

and opportunities to talk to other PWA14

P25-One-to-one information in private11


P2-Importance of using the label

“aphasia”10

SUPPORT

Acute Stage


Chronic Stage

Unspecified Stage

P43-Psychosocial support1,10,14

P33-Support to adjust to new

role5,10,11

P32-Emotional support from health

care professionals3,13

P46-Support with managing

finances10

P14,15,43-Someone to talk about

the emotions, mood swings and

behavioural changes to expect in

the PWA1

P50-Informal support from others who

have experienced similar1,5,10

P49-Additional support during

transitions between hospital and

home7,10,13

P52-Support group9,10

P35-Suggestions from health

professionals of what might help you

cope7

P44-Formal support from a

counsellor/social worker1

P43-Psychosocial support1

P50,52-Putting in touch with support

groups – contact with others in a similar

situation 4,7,,10,11,12,13,15

P48-Respite7,10,13 including regular time

off via sitting service/PWA

groups7,10,11,13 time off from being sole

communicator for the couple11 rest

from new responsibilities13 and

holidays10

P43,54-Ongoing psychosocial support1,7

even years post onset10,11

P56-Knowing there was someone you

could talk to1,15

P34-Opportunity to talk about your situation as

the significant other of a PWA2,5,7,11

P32,45,46,54-Specific action to support needs

of relative11, with consistent emotional and

practical support to deal with consequences of

aphasia throughout pathway7,11,13 including

from medical and social services15

P46-Practical assistance (e.g. cooking, financial

matters) because difficult for PWA to

instruct11,13

P56-Knowing there was someone you could go

to, to talk to10

P44-Formal counselling10


P45-Social worker to facilitate

consensus within family13

P53-Meeting other PWA5

P32-SLT services5

P55-Back-up to take on carer role in

case relative unwell10

P47-Support to cope with emotional

and mental fatigue10

P46-Support managing joint affairs13

P50-Opportunity to meet other

PWA/caregivers12

P45-Support to set ground rules re caring role15

P36-Reassurance in an unknown world10

P45-More to help the carer6

Manner of giving support

in acute stage

P32-Acknowledgement of the

impact of aphasia on the relative3

P34-Opportunity to talk privately

about your situation as the

significant other of a PWA3

P35-Very early intervention for

relatives including emotional

support3


in rehabilitation stage

P45-Interview with social worker

prepared with list of likely areas of

need11

P32-Emotional support should be

offered alongside information13


in chronic stage

P56-6 monthly review of PWA to

support carer7


unspecified

P50,51- Psychosocial2/social support provided

through group education16, or in a group

setting10,11

P54-Support services should be accessible,

cheap and co-ordinated13

P34-Opportunity to receive psychosocial

support in a 1:1 setting10

P57-Fit for purpose e.g. matching service to

need11

TRAINING


Acute Stage


Chronic Stage

Unspecified Stage

P58-Communication partner

training1,2,3

P58,67-Training in skills to

communicate with PWA effectively,

including about their

needs/emotions1,10

P58-Assistance with day to day

communication11 to acquire an effective

mode of communication with the

aphasic partner13

P59-Training to recognise/self-monitor

good communication17

P61,63-Dyad-specific instructions in

alternative communicative strategies17

P64-Group training in use strategies

even years post onset16

P63,58-Individualised advice to facilitate

collaborative repair4,5,10 and manage everyday

conversation 4,5,14

P66-Training to learn how to communicate with

the PWA11,12 and especially to understand

needs/emotions being expressed10

P60,61-Training to increase own perception of

aphasia4 and role reversal opportunities16

P58,61-Chance to practise variety of strategies

and gain confidence4,16

P62- Learning to share conversation equally10,16

P63-Training involving the dyad 10,17

P62-Demonstration of techniques that facilitate

communication16

P63,64-Group training of dyads learning from

each other16


P65-Training in use of AAC2

P58,59-Training about conversation theory4

P58,59-Confidence in appropriateness of

attempts to communicate with PWA15

Table 4: Characteristics of Participants in Pilot Study

Participant

Relationship to person with

aphasia

Age Range of Participant

(years)

Age Range of people with

aphasia (years)

Time post aphasia-onset

(months)

P1 Husband 40-49 40-49 24

P2 Husband 70-79 70-79 38

P3 wife 70-79 70-79 60

P4 wife 60-69 60-69 47

Acknowledgements

We wish to thank members of the North East Trust for Aphasia who participated in the pilot study and Julie Morris and Anne Whitworth and Janet Webster for their support and encouragement. We thank the Institute for Social Renewal, Newcastle University, for funding a consultation event related to this work.


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