Sixty-three individuals replied to the screening questionnaire indicating that they would like to take part in the research. From these, 36 informants, selected to achieve maximum diversity in the sample, were interviewed in phase one, with 18 informants re-interviewed for phase two. Interviews (across both phases) were conducted between February and December 2009. Interviews lasted between 40 and 90 min (in phase one) and 25 and 70 min (in phase two). Table 1 shows the characteristics of the interview informants.
Phase 1: the conceptual attributes of the measure
Following the 36 interviews in phase one, five conceptual attributes of capability wellbeing were developed; the meaning of, and key influences on, each attribute is described below.
The desire for a sense of continuity in life (in terms of friends, work and location) was evident from early interviews. Later interviews revealed a close link between continuity and general aversion to feeling threatened and living with uncertainty. These issues were combined as the “stability” attribute. Stability appeared to come through the interplay of various aspects of informants’ lives, including more ‘objective’ factors (such as the absence of dramatic changes in their lives) and more ‘subjective’ factors (such as whether informants felt stressed and were able to assign meaning to their lives):
…my health broke down again … which came as a shock… I had to give up work immediately …and it cast a long shadow because it’s always there in the background, you never know when it might jump on you. So you live with uncertainty. [Female, 78]
The capability to have ‘stability’ was affected by a broad range of factors. Poor health (as above), unemployment and crime (and the threat of each of these) were important negative influences. Positive influences included consistent friendships and family groups, guaranteed work, secure finances, home ownership and a strong belief system:
…whatever religion you are, when you feel horrible inside, you feel sad inside you quickly go back to your God and say “oh God, help me” don’t you? Everybody does that. [Female, 55]
The importance of love, support and social contact was apparent from early interviews. These concepts were combined with concepts about affection, being close to people and belonging, to create the “attachment” attribute. The ability to feel attached appeared to rest both on the ability to interact and on the quality of individuals’ relationships. Informants expressed a desire for these relationships to be loving, honest, understanding and supportive:
At ante-natal classes …six of us really gelled and just became the closest of friends. It was like we’d known each other for years and years and years. … we see each other all of the time and we help each other out which is great. [Female, 32]
Attachment was strongly related to the presence of a partner, close family and good friends. Poor health and bereavement within the family were cited by a number of informants as factors in bringing them closer to other family members. The notion of feeling supported was not always related to the amount of practical and emotional input received, with (cap)ability to call on support being noted:
I’m not saying I don’t like having them [friends] round in case they’re needed, but whether I would ask for it [help] is slightly different. [Male, 62]
A desire to be independent was clear from the very beginning of the interviews, with informants talking about not wanting to be a “liability” and wanting to be their “own person”. Whilst factors like being able to look after oneself and independence in decision making were regularly cited, complex issues regarding privacy (not wanting living areas to be overlooked, for example) and identity (wanting freedom to be the person that they saw themselves as) were also important. These concepts were drawn together as the “autonomy” attribute:
…our privacy, our independence of thought, all those kind of things make you who you are…[Female, 22]
Home ownership, self-employment and, more generally, an individual’s freedom to control their working environment were associated with greater autonomy:
…the worst humiliation to me is to be told to stop doing something really. [Male, 86]
On the other hand, poor health was an important limiting influence on autonomy, for example, through dependence on medication, through to poor health limiting an individual’s ability to carry out basic activities.
The achievement attribute reflects the degree to which an individual is able to both move forward in their life and attain their goals. The attribute also reflects the importance of being able to look back with satisfaction at achievements (pride) and having their role and achievements noticed by others (recognition and appreciation):
As a Physics Teacher, to do 6 years without any promotion is pretty unusual really because they’re in such short supply. And I was beginning to feel left on the shelf. [Male, 28]
Individuals’ ability to achieve appeared to be strongly related to their opportunities to be successful at work, to have a family and to own things. For many individuals, achievement was related to outside interests, particularly voluntary work and sport:
I do like playing …competitive sport… it’s got a bit of an edge …. I suppose through that there’s a bit of an achievement thing and it’s quite nice to be in a team or to be a captain for one of the teams [Male, 29]
The interviews revealed that informants sought and valued enjoyment in their lives. Enjoyment ranged from the “quiet pleasures” in life to things that were perceived to be “fun” or “exciting”. Pleasure was also often gained from simply being around people (and sharing in their happiness) and from removal from the often frantic pace of everyday life:
It [TV programme] is wonderful…I’d recorded it over Christmas…And I just thought this is fantastic. So a great deal of pleasure… [Female, 60]
A number of informants mentioned periods of their life when they were depressed, felt “down” or were in pain; these were periods of their life that were clearly not enjoyable:
…obviously it’s [mother’s illness] been hard, it’s been upsetting…and visiting her now isn’t exactly a barrelful of laughs… I guess it’s saddening … [Female, 29]
The capability for enjoyment was generated by the presence of families, friends, pets, leisure activities and the countryside in the informants’ lives. Key limiting factors on enjoyment included financial difficulties and poor health:
[The chest infection] just made it miserable for a week or two, I couldn’t get out or about … [Male, 75]
During the interviews, informants also talked about the wider world. This discussion often arose towards the end of interviews when informants were asked whether there was anything important to them in their lives that had not been covered. The importance of the values, actions and attitudes of other people were mentioned by a number of informants:
…we’re just not learning anything… I listen to that Guantanamo thing, we’re not giving people a trial …if they’re wicked they should be punished, but everybody, I don’t care who they are or what they’ve done they must have a trial. [Female, 55]
Given that the intention with this work was to develop a measure of personal capability wellbeing that could be used in trials to measure the effectiveness of health and social care interventions, it was judged that issues about the type of world the informant wanted to live in lay outside what was being measured and are in fact are more akin to Sen’s notion of agency wellbeing (concerned with the objectives that a person has reason to promote, even if these do not contribute to their own personal wellbeing) . Issues categorised under this theme were therefore excluded from this measure of personal capability wellbeing, although the findings are being taken forward in other work.
Phase 2: the development of the descriptive system
The conceptual terminology for attributes, such as “stability” or “attachment”, was unsuitable for including in a self-complete questionnaire for all members of the general population. Informants commented, for example, that “stability” brought to mind being “mentally unstable”. The second phase of interviews offered the opportunity to explore the most appropriate terminology for the attributes. For reasons of space, it is not possible to report the development of each set of wording individually here (the wording explored for each attribute is given in Table 2). However, as an example, the attachment attribute was initially labelled “support and affection” (drawing on earlier interviews for terminology); informants variously indicated that the word affection was “trivial” or “random”. Words such as “love” and “friendship” were judged by the informants to be more evocative of the concepts encompassed by the attribute. The terminology was further refined through the interviews, first to “support, love and friendship” (which was rejected because informants overly focused on issues of charitable or state support) and then finally to “love, friendship and support”. In general, developing lay terminology for attributes required a balance to be struck between keeping attributes concise (so as to keep the measure straightforward and unambiguous) and detailed (so as to invoke the range of concepts covered by each attribute).
The final lay terms (conceptual attributes are in parentheses) for the attributes were those where misunderstanding by informants was avoided, and where the meanings informants derived from them were those most closely related to the original conceptual attribute: settled and secure (stability), love, friendship and support (attachment), independence (autonomy), achievement and progress (achievement) and enjoyment and pleasure (enjoyment).
One aim when selecting levels was to cover the capability space as widely as possible, and therefore as far as possible, the bottom level for each attribute needed to represent the absence of capability and the top level, full capability. For two of the attributes, “attachment” and “enjoyment”, it was harder to find a logical expression of full capability, without measuring preferences rather than capabilities (“all that I want” for example) and, as a result, a top level (representing full capability on that attribute) of “a lot” was used. Given that there would be two levels at the extremes, a decision was made to have two further intermediate levels for each attribute. This represented a desire for the measure to be sensitive, yet capable of being valued using econometric techniques. To derive intermediate levels, other outcome measures were reviewed for terminology: the use of the terms “moderate” and “some” was explored with informants, along with “a lot”, “a little”, “many” and “few”. After piloting, “moderate” and “some” were rejected. Informants appeared to interpret “some” inconsistently; it could mean more or less than half. The word “moderate” on the other hand was perceived to not make sense in the context of an individual’s attachment or enjoyment. The terms “quite a lot”, “a little”, “many” and “few” were acceptable and therefore used in the final descriptive system for the measure presented as Fig. 3. At this point, scores are not available for the measure, but profiles can be identified using the numbers associated with each item. For example, the state 44444 would indicate full capability on all attributes, whilst the state 11111 would indicate an absence of capability.