What do family members want?

To be included in rehabilitation

• To be included in rehabilitation was identified as a goal by most of the participants, particularly during the early stages of rehabilitation. For example, one participant commented, 'one of the things that you needed to rehab are families as well, because if they're going to be the ones coping with it'. Family members wanted to have 'a little bit more inclusion ... IN the processes', rather than clinicians only giving them 'progress updates' and being 'dismissive'.
• Reasons for being involved in the rehabilitation process included wanting to know 'the best role for ... [them] to play as family members to help in his rehabilitation', to obtain a 'better understanding' of therapy, to see the person's 'progress', to 'see the other people [with aphasia] and interact with them' and to feel 'useful'. Some relatives indicated they wanted to be involved in rehabilitation even several years post- onset.
• A number of participants reported that their involvement in the individual's rehabilitation could help speech–language pathologists by reinforcing therapy goals because the clinician is 'not with that person 24/7' and by providing useful background information about the person, including cultural information for individuals from minority ethnic backgrounds.

To be provided with hope and positivity

• A number of family members spoke about the importance of being provided with a sense of hope and positivity, particularly during the early stages of rehabilitation: "We got the impression that they wanted to prepare us for the worst and not get our hopes up about any potential recovery... that was all very negative to us you know. I mean we didn't want false hopes of course, but we didn't want no hope."
• A few family members reported that hope was important in order to motivate them to keep focusing on their relative's rehabilitation ('If you're not given hope, then what's the point?').
• Several participants, however, indicated that many health professionals had been negative, particularly during the early period of rehabilitation ('They kept coming and telling me what she couldn't do. You know the whole thing was negative, "She will never be able to speak properly”').
• A few participants indicated that, because they had been told that the individual with aphasia would only progress during the first 6 or 12 months, they had become very concerned as the specific deadline approached.

To be able to communicate and maintain their relationship with the person with aphasia

• The majority of the family members indicated that they wanted to be able to communicate with their relative with aphasia.
• Some family members stated that they wished they had received some specific training, with one wife reporting, 'I don't think they [speech–language pathologists] realize how important it is to the actual carer ... to learn some of the skills [for communicating with the person with aphasia].'
• A few family members stated that they wanted someone to help them translate what the person with aphasia was communicating, particularly in relation to needs and emotions.
• Some participants also talked about the importance of being able to maintain their relationship with the individual with aphasia ('It's [their relationship with the person with aphasia] going to be affected, I can't really change that, but just trying to maintain it so that we feel close to each other').

To be given information

• Almost all the participants indicated that they wanted information about their family member's communication disorder.
• At the beginning of their relative's rehabilitation they wanted information about aphasia, stroke and what was going to happen to the person in the future.
• A number of relatives wanted information about services throughout the individual's rehabilitation, with some wanting this information even several years later.
• Some participants indicated that although they were told about aphasia, they were not given enough information about it, whereas others reported that in the early stages of rehabilitation they were not told that their family member had a disorder called 'aphasia' ('We didn't know there was a word called aphasia, we didn't know the specific name of this speech problem that she had').
• Family members identified a number of ways in which they wanted to receive their information. Some emphasized the importance of receiving verbal information, whereas others spoke about needing written information in order to have something to refer to at a later time. Still others indicated they wanted to have access to a helpline and one participant indicated she wanted information on a CD.
• A few participants indicated that by having more information, they would be able to answer the questions posed to them by the individual with aphasia ('I mean if you know more, you're more confident because whoever has had the stroke is looking to you for answers').

To be given support

• A majority of the participants identified support as a goal for themselves.
• This category included general, psychosocial and financial support.
• A number of participants spoke of needing general support to deal with the person with aphasia during transitions, particularly from the hospital to the home.
• Some relatives wanted formal psychosocial support from a counsellor or social worker, whereas others wanted more informal psychosocial support from other people who had been through a similar situation ('Somebody to talk to... . It doesn't necessarily need to be a therapist I reckon even somebody that's sort of gone through it').
• Although most participants spoke about needing psychosocial support during the early stages, some family members indicated that they needed support in the longer term ('Maybe some sort of a counselor ... because as you can see I'm still [five years after the onset of her daughter's aphasia] carrying a lot of stuff [crying]').

To look after their own mental, emotional and physical well-being

• A number of family members indicated that they had goals in relation to their own well-being, particularly once the individual was at home.
• Participants reported that they needed to ensure they had their own 'space and ... time' away from the person with aphasia to do things such as to participate in hobbies or to attend courses, in order to cope with the emotional and mental fatigue they experienced as the result of having a relative with aphasia. 

To be able to cope with new responsibilities

• Another category of goals identified by many family members involved being able to cope with new responsibilities that had arisen as the result of their family member having aphasia post-stroke.
• In the acute stages, some family members talked about suddenly having to deal with new financial concerns.
• Many family members spoke about having to cope with the new roles that they had to take on in addition to their other responsibilities particularly when the individual with aphasia returned home.