Table 3.
Qualitative framework analysis: themes, sub-themes, and illustrative caregiver comments
| Theme/Sub-theme | Illustrative caregiver comments | Diagnosis |
|---|---|---|
| Theme 1: Impact and experience of symptoms | ||
| Emotional impact of the condition | “She occasionally gets upset and tearful which is new for her. Even when she had cancer I never saw her upset or negative. She realises this is not going to be pleasant and I think that worries her greatly. For me the frustration is that there is little I can do to slow this down”. | lvPPA |
| Earliest symptoms noticed | “Compulsive/impulsive behaviors seemed an early stage symptom, as well as socially inappropriate actions, with my wife often believing them to be humorous.” | nfvPPA |
| Adding additional information about symptoms already listed in the stages | “I also forgot to say that tastes in music seems to have changed for my husband. He used to like heavy metal music and punk but now prefers more middle of the road music like the Corrs.” | lvPPA |
| Adding descriptions of symptoms not included | “I have noticed that there is a tendency to do half a job. For example, when drying after a shower there is a failure to dry the whole body and the back remains wet. When shampooing hair, the shampoo will go on but will not be washed off…I believe that we are at the moderate stage at present.” | nfvPPA |
| Theme 2: Illness progression/trajectory | ||
| Fluctuations in decline | “One thing that has been very noticeable with my wife’s condition is that changes happen very quickly sometimes from one day to the next. It is not a gradual decline.” | nfvPPA |
| Speed of progression | “The progression seemed faster than for other people we came across with this illness. For us it was 3 years from diagnosis to death.” | nfvPPA |
| Theme 3: Experience of doing the research | ||
| Difficulties answering questions on behalf of the plwPPA | “These points are from pure observation since my wife has not been able to speak since the moderate stage of the condition and when she could speak she would never accept there was anything wrong with her.” | nfvPPA |
| Difficulties with the way the survey was designed | “I found it difficult to complete this questionnaire, not necessarily for emotional reasons, more because of the requirement to allocate the ‘correct’ positioning of the various symptoms to a particular stage.” | nfvPPA |
| Theme 4: Utility of the stages | ||
| Perceived strengths of the stages | “The stages so far are what I have experienced, no one ever told me the likely stages, it is left to carers to search for stages. This makes it very difficult to cope with and to prepare for. Describing the stages is a good idea and will be helpful for many carers.” | nfvPPA |
| Perceived limitations of the stages | “Regarding staging, the difficulty is like trying to decide where the boundaries lie between yellow, orange and red in the rainbow - making sharp boundaries between items on a continuous 'spectrum' can only be approximate. But I understand the need to try!” | lvPPA |
| Theme 5: Suggestions for further development/dissemination | ||
| Incorporating care milestones/appropriate therapies into the stages | “Reference to types of therapies that may be helpful at later stages – input from neuro physios and neuro occupational therapists so that appropriate physical and other sensory therapies can be used when other activities become too difficult or do not maintain interest. Thank you for doing this.” | lvPPA |
| Aligning stages with intact abilities | “I think this is great but maybe would be also useful to add what the person IS still able to do as well as CAN’T.” | lvPPA |
| Acknowledging individual differences | “I dare say everyone’s progress through the illness is different, and I’m sure you will make this clear in your leaflet.” | lvPPA |
| Importance of how and when information is accessed | “I think the points made in the introduction are very valid – a road map of symptoms presented at an early stage could well be overwhelming and distressing to contemplate. A partner may feel unequal to the task of managing these symptoms when they are described in behavioural terms. The person with the diagnosis may feel life would not be worth living with these symptoms”. | svPPA |
The Table presents Themes and Subthemes identified in the Qualitative Framework Analysis, with illustrative caregiver quotations representing each Subtheme. For the purposes of publication, this Table has been edited to fit one page; the full version is given in Table S4. lvPPA, logopenic variant primary progressive aphasia; nfvPPA, nonfluent/agrammatic variant primary progressive aphasia; plwPPA, person living with primary progressive aphasia; svPPA, semantic variant primary progressive aphasia