My GP collaborates with me. For me and people with chronic illness we want to minimise medicines taken and therefore want to explore natural options. NP 1026 Building trust and understanding with healthcare advisors allows people burdened by chronic disease to make decisions about their health with confidence (feeling supported). Fear and anxiety caused by poorly communicated treatment options are unlikely to support the effort needed to make treatment recommendations fruitful.
My community matron has given me confidence KH 1149
The majority of patients attend healthcare rather than healthcare treating them in or near to home. The community matron role has become increasingly important to those too unwell to leave home for regular follow-up. Specialists in self-management these individuals help support people in their chronic disease management to reduce acute admissions to hospital. By providing care at home community matrons also become aware of the home environment, caring arrangements and preferences in a much more direct and contextual way.
Page 125 of 288 These Senior specialist nurses communicate and interact with multiple multidisciplinary colleagues and health agencies so that the individual receiving treatment has one point of contact and a coordinated package of care.
My partner drove me to hospital when I was acutely ill, it was useful someone else taking over and telling me that I had reached the point of needing more help. LS 1047
Partners, husbands, wives, children, carers and important others play an important role in assessing and reacting to changes in health. Habituation to chronic disease means that symptoms are very familiar to the individual affected. This combined with the stoic attitude needed to stay positive in adverse conditions and the fatigue, physical and cognitive effects of severe symptoms can make it difficult to seek help.
I have no doubt of the value of these education sessions, I was pro-active and checked on my sputum result at the GP yesterday, I have started prioritising checking things since we spoke. NP 1026
In this jotting the participant describes the positive effect of the education sessions. It is unclear how the education sessions were positive but they appear to have motivated and supported this individual in performing self-management.
The jottings illustrated here outline aspects of living with bronchiectasis that present challenges to health and happiness. These participant sound bites have been organised into a framework of themes. Two of these represent barriers to self-management, two demonstrate opportunities for self-management and the remaining six embody what it is to live with bronchiectasis. To honour the generosity of the participants who shared this information it is necessary to seek a unifying theory to provide structure for and underpin the formulation of solutions or enhancements to care tailored for the self-management of bronchiectasis.
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Figure 10 Maslow’s hierarchy of needs and bronchiectasis
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Maslow’s motivational needs (229)
Key to the figure previous page
Beginning with basic needs and culminating in self-actualisation.
Physiological needs: sleep, mental and physical wellbeing, nutrition, respiration. Security Needs: employment, finance, healthcare, housing.
Social Needs: belonging, caring and being cared for, family, friendship, love, relationships, support, understanding.
Esteem Needs: accomplishment, identity, independence, personal worth, social recognition.
Self-actualisation: acceptance, fulfilling own potential.
Discussion
Maslow’s motivational needs can usefully be used as a theoretical framework linking the information received in the patient insights as illustrated above. Considering the participant motivation within this psychological framework makes addressing motivation needs in a coordinated fashion with materials aimed at clearly defined areas of health and social care to form a foundation for empowered self-management of bronchiectasis (self-actualisation).
Brief but positive directed telephone conversations were undertaken during BET, those randomised to the intervention were able to share their hopes and fears during the patient education. Taking part in the research also encouraged some to ask questions and collaborate with their health workers, using the driving force and motivation of being a participant to keep track and also increase their understanding of bronchiectasis. It is not unexpected, due to social response to coughing, to read that weddings, baptisms, funerals, theatres, cinemas, gymnasiums and restaurants are problematic for those affected. This helps explain some of the isolation experienced by people with bronchiectasis. Encouraging independence in people with chronic disease requires stages of learning, support and supervision until health actions are safe, fully understood, prompt and efficient. Educating and supporting individuals takes time and attention. Where staff are over-stretched, activities may be reduced to component health-professional responsibilities. Managing a high demand with minimal interaction and collaboration may be an attempt to save time.
Page 128 of 288 The role of specialist nurses in patient education, nurse-led clinic follow-up and self-management advice has grown. This allows physicians to redefine their roles, leading to better outcomes for chronic disease patients (369). Microbiology labs are unable to process samples unless they are labelled appropriately. Providing sample pots and Identified labels with only the date and sample collection time would reduce confusion and expedite the process.
A decision tree or decision flow-chart to help guide symptom management such as sputum clearance beginning with hydration (such as keeping a glass of water at the bedside and avoiding caffeine if possible). Followed by choices and guidance related to nebulising saline in conjunction with specialist physiotherapist advice on airway clearance (to reduce the viscosity of sputum and help expectorate it). Encouraging physical activity assists expectoration. Finally medication options such as mucolytic medications are effective for some individuals. As pressure on healthcare increases and the complexity of treating individuals with multi-morbidities and complex needs escalate so do demands on clinicians. This issue provides an opportunity to seek novel technical solutions in maintaining documentation regarding treatment strategy and results to provide an enhanced data picture. This data might inform decisions and provide a source of collaborative discussion for people with bronchiectasis and their healthcare teams to exchange and inform each other. Airway clearance is a key element of bronchiectasis self-management. Providing physiotherapist specialist training and regular refreshers would help underpin this skill development but funding for this is not currently available.
Sympathy and empathy can be limited and people with chronic disease minimise ill health in their social interactions perhaps because they wish to be identified for their personal traits and not defined by their ills. In order to survive and endure daily ill-health there is a re-adjustment of expectations in which self-management might help retain control and identity as illustrated by an extract from Appendix 25 below.
“…I do think there is so much people with bronchiectasis can do to improve their health. Having Diabetes has been a really good pointer in terms of self-management as I have found it far easier to influence than lung disease. And the increase in self-esteem I feel at being in the top 10 GOOD PATIENTS for diabetes makes me feel I can be more pro-active about my lungs” NP 1026
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Discussion Jottings
The participant feed-back within this chapter demonstrates obstacles and opportunities to self-care that exist in current bronchiectasis interactions with health. Exploring how to smooth the bronchiectasis journey may create a better foundation from which individuals can increase their self-management skills and hence self-efficacy. The useful categorisation of needs presented by Maslow (used here as higher order codes) provide an easily understandable approach and framework from which to interpret patient experiences to create self-management interventions in the future.