PLANS has been developed as a self-management intervention which utilises local and community resources as a strategy to support people with vascular disease, its underlying ethos acknowledging the importance of the everyday contexts of living with a LTC and the range of problems experienced such as having access to everyday support, being active and involved in meaningful activities.
Resistance to the PLANS intervention ranged from an unclear health rationale for doing so, the double disruption of introducing a new intervention together with the unexpected knowledge that they were suffering from CKD, or the perception that their social life was under scrutiny. Men were particularly resistant to the PLANS intervention which is reflected in the difficulty recruiting them for this qualitative study (42% of the RCT participants were male). Men were more likely to see PLANS as an unwanted intrusion in their social life. It should also be noted that although the trial recruited from a wide geographical area of Greater Manchester including areas with high populations of ethnic minorities but very few participants in the trial were non-white (1.4%). It was therefore difficult to recruit non-white participants for this qualitative study with only one participant of mixed-race descent.
The invisibility or lack of awareness of CKD could be a hindrance to engagement with PLANS because some participants could not see the relevance of doing so and in some cases participants were upset because of the introduction of a new diagnosis. Therefore PLANS or any self-management resource is likely to struggle for relevance where there is an unclear health rationale for action. These findings suggest the need for greater consistency in the management of CKD within primary care for self-management support to be effective. It is reasonable to imagine that PLANS might have been more relevant or useful if delivered to a population with more ‘visible’ long-term health problems such as arthritis, heart disease or diabetes. However the ‘invisibility’ of CKD exposed some of the problems of delivering self-management support to people who do not prioritise their health in the context of other everyday life priorities and so demonstrates the value of an intervention like PLANS which operates at different levels, e.g. offering the opportunity to reflect on practical, personal or health-related problems which make life difficult but which have become normative.
It became clear that understanding the experiences of retirement was important for encouraging engagement with PLANS as was an appreciation of some of the hidden pressures and responsibilities older people encounter. Timing of PLANS is also important as growing older and retirement in circumstances where a LTC is involved appeared to risk a future where people lose touch with things they enjoy only to be faced with a further problem, that of finding it difficult to reconnect with others as a result of the passing of time and feelings of vulnerability.
The perception of ‘outsider support’ was another barrier to engagement with PLANS and demonstrates the difficulty of providing support for people who feel responsible for themselves and for those they look after. This illustrates the importance of understanding personal pride in relation to support, but also how feelings of vulnerability to unwanted attention by external agencies can influence engagement with PLANS. It seems that for some people who live day-to-day with overwhelming responsibilities, it is still regarded as better than available alternatives. As much of the sociological literature about chronic illness testifies, coming to terms with the onset of chronic health problems involves not just learning to manage clinical therapies, but also how this relates to valued aspects of life such as maintaining relationships and doing meaningful things.
For some participants, PLANS did not fit with the previous norms and sense of coherence of the work usually associated with a visit to primary care for a LTC. A focus on networks, socialising, participation, finding support and promoting activity as a means of alleviating the mundaneness of living life with a long-term condition sat uneasily with the normal expectations of healthcare support and advice on offer. For telephone workers, challenging everyday assumptions by offering alternatives to embedded routines required some skill, flexible thinking, and patience together with the ability to manage the unexpected realisation of the disclosure of a problem which many people were not aware they had.
Overall, PLANS involves work for patients. It requires engagement, rationalisation and understanding the need to do something else, and then taking the next step such as contacting groups or services. This process will likely involve negotiation with others and embedding into their lives. Hence there were occasions where participants only wanted information which was put ‘on the shelf’. Additionally the initial engagement with PLANS requires work from support workers who need the skills to encourage participation through finding trigger points for action and solutions to practical problems. This has implications for wider roll out as these are important factors for the effectiveness of a PLANS-style intervention.
One limitation of PLANS delivered in this way is that patients who are unable to use the phone adequately e.g. are hard of hearing, would not be able to receive the intervention in this format. This group are likely to be vulnerable and socially isolated who would benefit from an intervention to increase their social support and therefore it is important to consider how PLANS could be adapted as a face-to-face resource so that this group could access it.
NPT was an appropriate heuristic device with which to analyse this data as each of the four constructs relate well to the processes of engagement and the implementation of PLANS as experienced by participants in the study. Although we looked for data that fell outside of our coding framework, we were in fact able to code all relevant data with reference to one of the NPT constructs. However, whilst NPT is presented as a temporal process, this analysis showed that many participants experience the constructs of NPT simultaneously. For example, the work of sense-making necessarily involves an appraisal of the cost-benefits of PLANS for participants. Correspondingly, the work of engagement or ‘buy-in’ was influenced by these processes. This suggests that NPT is a useful way of understanding the experience of the PLANS intervention but best understood as a non-linear progression towards successful (or not) implementation.