Table 1

(A–D) Top six list items with the greatest difference in salience between hospital staff with and without personal experience of dementia caregiving for each of four interview questions

A. Interview question: how to notice emotional distress
Higher salience items for staff members with personal experience of dementiaHigher salience items for staff members without personal experience of dementia
List itemDifference in salienceList itemDifference in salience
The person will tell you: patients are able to say that they are distressed, such as describing an emotion.−0.221 Withdrawn: included being quiet, disengaged or subdued; patients were described as being distressed within themselves.0.107
Body language or posture: including descriptions of a patient waving, pointing or putting hands to their head.−0.197 Asking for family or friends: included asking where family are, whether family are safe, whether family know where they themselves are.0.105
Face or facial expression.−0.160 Easily visible: distress was visible and seen by looking at somebody; or distress is obvious; ’it’s not hard to tell'.0.104
Seeking, searching, looking for someone or something: did not always describe what was being searched for.−0.118 Anxious or frightened.0.103
Behaviour or actions: sometimes described as a change for the person.−0.093 Repeated questions: included patients not feeling reassured.0.101
Knowing the person: to be able to notice distress; the patient not being their usual self, something being different.−0.082 Wanting to leave: included attempting to leave; asking to go out or for doors to be unlocked, trying exit doors, banging doors, absconsion, calling for a taxi, asking about the train station.0.081
B. Interview question: causes of emotional distress
Higher salience items for staff members with personal experience of dementiaHigher salience items for staff members without personal experience of dementia
List itemDifference in salienceList itemDifference in salience
Not knowing where they are: disorientation, asking where they are and not knowing that they are in hospital.−0.176 Being orientated or contradicted: included descriptions of others not understanding a person’s reality, questioning them and what they see or not giving an answer that a patient wants to hear.0.122
Strangers: unfamiliar or unknown people, unfamiliar faces and voices and patients not knowing who is around them.−0.145 Wanting to go home: missing home, asking to go home.0.112
Hunger or thirst.−0.134 Being away from loved ones: wanting to see family or friends, looking for them and thinking about them, not being with them, awaiting or not receiving visitors and not knowing where family are. Specific family members, such as ’mum' or ’husband', were mentioned. Descriptions also included feeling left or abandoned by family.0.085
Expression difficulties: patients being unable to express what they want to say or not being understood by others; included being unable to verbally express pain or emotions.−0.124 Frightened, scared or fearful.0.077
The hospital environment: an unfamiliar, new or foreign setting; this included descriptions of an intrusive environment and descriptions of hospital bays and beds.−0.109 Infection.0.063
Upset by staff: included descriptions of the attitude, skills and manner of staff and the way people were spoken to causing distress; included staff being impatient and not understanding how to talk to somebody.−0.102 Rumination, remembering the past: included patients replaying past scenarios, experiencing flashbacks of earlier life.0.060
C. Interview question: responses to emotional distress
Higher salience items for staff members with personal experience of dementiaHigher salience items for staff members without personal experience of dementia
List itemDifference in salienceList itemDifference in salience
Empathise: trying to understand, tuning in to what is troubling them, getting into their mind-set or universe; telling them they understand.−0.164 It depends on the level of distress.0.134
Distraction: sometimes distracting from the person’s thoughts or mood; changing topic; distracting for a short time.−0.136 Activities: a range of games and puzzles were listed, including jigsaws, draughts, bingo, skittles crosswords and word puzzles, flower arranging and building.0.109
Listening: included telling the patient they are listening.−0.103 Contact with family: enabling contact with family included speaking with family on the phone, allowing family to visit at flexible times or stay longer.0.093
Sometimes can’t help: staff said they sometimes could not help or could not fully understand; not every time; included stating that they do not know the patient well.−0.100 Reassurance: giving reassurance generally was listed without further description.0.092
Mirroring: mirroring the person, their actions or volume; described building off each other.−0.097 It depends on the circumstances.0.063
Talking: sharing conversation and stories; included talking while walking.−0.096 Comfort: included descriptions of being calming or nurturing.0.058
D. Interview question: responses to emotional distress that seem to work
Higher salience items for staff members with personal experience of dementiaHigher salience items for staff members without personal experience of dementia
List itemDifference in salienceList itemDifference in salience
Sometimes can’t help: staff said they sometimes could not help, sometimes nothing works or a response does not work; responses that work are never guaranteed.−0.110 Reassurance: giving reassurance generally was listed, including reassurance not to worry or that problems would be resolved.0.174
Empathise: trying to understand, putting self in their place; telling them they understand.−0.101 It depends on the level of distress.0.082
Knowing the person: staff described having to know or get to know the person; included each person being different/unique; being person-centred; being patient-led; different responses working for different people.−0.088 Contact with family: enabling contact with family included speaking with family on the phone, allowing family to visit at flexible times.0.076
Comfort: included descriptions of calming somebody, being nurturing or giving emotional contact.−0.077 Allowing space: to pace or let their anger out.0.073
Change the member of staff: included changing to a more familiar staff member or changing to a male or female staff member.−0.072 Listen: included telling and showing the patient they are listening.0.062
Consult colleagues: included consulting with and learning from multidisciplinary colleagues.−0.067 All/any responses: anything, everything or all of them was listed.0.058