Table 4.

Resources for involvement work

Information and knowledge	Support	Material resources
Most people we spoke to wanted more information. For some patients, being informed was a key means of being involved; not being informed provoked anxiety or frustration. Some people needed information to make decisions or plans for future care, especially carers.	Support networks were a key resource for many patients. Sometimes. support networks provided additional support to enable a patient to readjust to living independently postdischarge. For example, Shirley outsourced her IW while in hospital but was keen to regain autonomy at home. However, being subject to disruptive hospital routines and feeling unwell at the point of discharge meant that readjusting was challenging. However, Shirley mobilised her support networks to help her in the immediate postdischarge period until she could fully resume her normal activities.	Involvement work (IW) was sometimes financially costly. Relatives of patients reported spending a lot of money on hospital parking costs to visit relatives. However, attending hospital was necessary for gaining information and being involved in decision‐making and future care planning. Relatives often felt that these costs were unavoidable if they wanted to be involved.
People who wanted to maintain their IW were more likely to seek information than people who outsourced their care to others:
‘I always ask, I'm a great believer in asking, asking questions, and they may not know the answers but they'll get to know the answers for you, you know? So I find that it's like, life's less complicated that way’. (Diana, 78)		Information about postdischarge care was often limited and most patients had few means of accessing additional or correct information when it was missing or inadequate. Access (or not) to resources, such as a computer or internet access, was sometimes instrumental in being able to resolve issues. For example, Doris (99) received a letter asking her to call a telephone number to book a clinic appointment. Unfortunately, the number provided was no longer in service and Doris had no means of contacting the clinic to book an appointment. Compare this with Ray (76), who, when faced with a similar situation, was able to source the correct clinic number using an internet search engine. He not only called to make his appointment but also alerted staff to the error on the letter, who assured him they would change the incorrect information.
Likewise, ‘delegates’ were also likely to be active information‐seekers:	Other patients relied on ongoing family support to stay at home and avoid residential care. Martin's nephew provided help with washing and dressing every morning and evening, enabling Martin (83) to stay at home and reducing burden on Martin's wife, who was unable to provide this type of support because of her own health issues.
‘You know what I'm like, I interrupt them, I ask questions, I've got to know the inside out of what's it, and, you know, I cause a lot of problems for a lot of people [health care professionals] because I'm just interested, well I need to know the information’. (Serena's daughter—Serena, 92)
Patients receptive to information, but not active in seeking it out, were less likely to receive information because most staff expected people who wanted information to request it:	Access to social support networks were also necessary when patients wanted to delegate IW, or when tasks needed doing that the patient was unable to do. For example, during his stay in an intermediate care setting, Peter (84) spent 3 weeks in the same pair of hospital pyjamas he was discharged in. Care home staff frequently documented that ‘family need to bring clean pyjamas in’; however, Peter had no family or friends and consequently, no one to provide him with additional clothes.
‘We [nurses] wait until a patient asks [for updates], but don't tend to worry about it at all if they're confused, because they won't take it in’. (Staff nurse, AMUfOP—nonverbatim quote paraphrased from field notes)
Patients and carers with existing knowledge were often advantaged. Pearl's daughter Tracey, for example, worked as a healthcare assistant in the hospital and was familiar with many hospital processes. Likewise, Philip was a retired pharmacist, which enabled him to spot and avoid a potentially serious medication error during his hospital stay.