What does ‘housebound’ mean? Mixed-methods study to develop a consensus definition

Systematic review

Searches identified 1203 articles (Figure 1). After removing duplicates, 847 titles and abstracts were screened, and 413 articles were retrieved for full-text review. Fifty-five articles or websites were included, with 52 definitions (Figure 1, Supplementary file 3).

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PRISMA flow diagram showing study identification, screening, eligibility assessment, and inclusion for a review on definitions of “housebound”. Studies were identified through two pathways: databases and registers, and other methods.In the databases and registers pathway, 1,203 records were identified from databases: Medline, 209; Embase, 343; PsycInfo, 138; Cochrane, 189; and CINAHL, 324. No records were identified from registers. Before screening, 356 duplicate records were removed. No records were marked as ineligible by automation tools or removed for other reasons. This left 847 records for screening.Of the 847 records screened, 424 were excluded. The remaining 423 reports were sought for retrieval. Ten reports were not retrieved, leaving 413 reports assessed for eligibility. Of the 413 reports assessed for eligibility from databases, 370 were excluded: 218 because the report did not describe “housebound”, 66 because the report was outside the UK, and 86 because the report was a conference poster. In the other methods pathway, 12 records were identified: 5 from websites, 4 from citation searching, and 3 from thesis searching. All 12 reports were successfully sought for retrieval and all 12 reports were assessed for eligibility. None were excluded. Across both pathways, 52 studies or websites were included in the review, representing 55 included reports.

Figure 1. Visual summary of the systematic review screening process (Preferred Reporting Items for Systematic reviews and Meta-Analyses [PRISMA] diagram)

The following five themes defining housebound were identified: (i) unable to attend GP surgery or needing home visits; (ii) unable to leave the house; (iii) unable to leave the house without assistance; (iv) self-reported housebound status; and (v) housebound recorded in electronic health records. Definitions varied from broad to narrow.

Subcategories of housebound included ‘fully’ versus ‘semi’ housebound (housebound most of the time but could leave the house with assistance); ‘temporarily’ versus ‘permanently’ housebound; and ‘blockbound’ (confined to a block of flats), ‘housebound’, ‘chairbound’, or ‘bedbound’.

Interviews with housebound people and carers

Twelve people were interviewed, ranging in age from 40–49 years to ≥90 years (Table 2). Three out of four of the carers considered themselves (that is, the carer) to be semi-housebound by virtue of not being able to leave the house due to caring commitments.

Views towards the word ‘housebound’ were mixed, with half of participants expressing negative views. They commented that it was a ‘scary word’, ‘not a pretty word’, ‘a label’, and ‘old fashioned’, and described feeling ‘bound in chains’, ‘trapped’, ‘shut in’, and ‘a prisoner’. For three of the interviews, the housebound people and their carers were interviewed together and, interestingly, none of the participants had openly discussed being housebound with one another before the interview. Some participants became tearful when reflecting on the word housebound and their circumstances, frustrated that they were unable to do things they wanted to do. Those with negative views of the word were unable to suggest a suitable alternative. Other participants did not mind being housebound and thought the word was acceptable, describing it as ‘the best we got’ and ‘a matter-of-fact word’.

Unable to leave the house

When asked ‘Can you tell me what you think about the word housebound?’, most participants commented that it meant being unable to leave the house irrespective of the reason for this. Most participants occasionally left the house (for example, to attend hospital appointments) and considered themselves to be housebound despite this occasional outing:

‘In my opinion being housebound is you’re stuck in your house, and you don’t go out much.’ (Housebound participant)

Unable to leave the house without assistance

Most housebound people and carers commented that people who needed assistance to leave the house were housebound. Several talked about housebound people being unable to do things on their own and being dependent on others:

‘I mean if you can’t go out on your own you are housebound, aren’t you? There’s no two ways about it.’ (Carer participant who described herself as semi-housebound)

In contrast, a housebound participant questioned whether she was housebound because she occasionally went out with family:

‘… as to whether I’m housebound or not ‘cos I have, ooh, I left the house twice in the last month, yes, and three times in the last quarter but before that I didn’t leave the house for a long time. So that’s why I’m not quite sure … I’m not totally housebound ‘cos I’ll go out with the girls.’ (Participant who considered herself semi-housebound)

Self-report of being housebound

Most participants commented that it was OK for researchers to ask people and their friends, relatives, or carers if they were housebound. One participant described feeling ‘overlooked’ and commented that it was important to ask the housebound person, not just their family:

‘Yeah, it’s important to ask the patients. Most of the time, if you are a patient, and if I have a disability or chronic illness, and you have someone with you [pause] umm, sometimes the patient is overlooked and the person with you is being asked questions instead of you.’ (Housebound participant)

Several participants argued that asking if someone was housebound was quite subjective and this would depend on their perceptions of what ‘housebound’ means and their insight into their circumstances:

‘… it’s going to be everybody’s perception of it isn’t it, and because it is a pretty vague term ... But I think it’s fine to ask. Quite often older people don’t have insight into their own situation … Now have I got complete insight into my situation? I don’t know whether I have.’ (Participant with experience of being temporarily housebound and a carer)

A carer participant commented that a housebound person and their carer may have different views about whether the person is housebound and at what stage they became housebound. They suggested that it would be more appropriate to use objective questions to determine whether someone is housebound rather than asking the person, friend, relative, or carer whether they were housebound:

‘Has to be physical or factual information rather than perception issue. Even talking to the GP and them making a decision who is housebound is wrong unless it is factually based.’ (Carer participant who considered himself to be semi-housebound)

Recorded as housebound on GP records

Overall, participants thought it was acceptable to identify housebound people using electronic GP records. One participant voiced concern about asking health and social care professionals to provide a list of housebound people; this would depend on their perception of housebound. Several participants commented that they were ‘flagged up’ as housebound on the GP records. While some did not like being ‘labelled’, participants were generally positive about GP practices being aware that they were housebound. This meant that they were not expected to attend the GP surgery and would sometimes be prioritised, for example, for vaccinations:

‘I think I’m housebound on their list, but they haven’t ever said to me you are housebound …Well it’s jolly handy isn’t it, they come round with injections ‘cos otherwise I’ve got to get myself up to the doctors which is a nuisance.’ (Housebound participant)

Some participants were concerned that being labelled as ‘semi-housebound’ on the electronic GP records might mean that the GP practice would expect them to attend the surgery:

‘Well it’s frustrating … I mean I go out but it’s with somebody, so I’m semi-housebound aren’t I? I can’t go out on my own, but I can go out with somebody else … If I rang up the receptionist and said he’s semi-housebound, receptionists are difficult to get past easily, “oh I mean in that case then you can come along”, you know.’ (Carer participant who considers herself to be semi-housebound)

Subcategories of housebound

Several participants commented that it was helpful to be able to describe how housebound a person was. Several participants described different degrees of being housebound:

‘... there are different layers of being housebound, whether you’re completely incapacitated and stuck at home, whether you can get out for medical appointments … I was bed-bound … I couldn’t walk … But with my [relative] … she was housebound but not bed-bound … she was in a wheelchair … I couldn’t get the wheelchair into my car so she was housebound … they [charity organisation] did have the facility to put the wheelchair in the car and that really opened her life … they would go to a pantomime at Christmas … So she was housebound to a degree but not completely …’ (Participant with experience of being housebound and a carer)

Expert consensus exercise

The expert panel comprised 14 individuals with varying years of experience: four GPs, three community nurses (including one retired), three paramedics, a social prescriber, two retired social workers, and a COVID-19 vaccine administrator (Table 2). Most participants (n = 12, 86%) were female and (n = 12,

86%) described their ethnic group as White.

Six definitions met the top-scoring criteria. The highest-scoring definition is shown in Table 3, alongside a summary of the refinements to the definition and the final consensus definition. Changes to the highest-scoring definition were minor, including changes to improve the readability of the definition.