Closing the loop in person-centered care: patient experiences of a chronic kidney disease self-management intervention

Figures & data

Figure 1 Closing the loop in person-centered research.

Abbreviation: PCC, person-centered care.

Table 1 Principles of person-centered care

Principle	Description
Respect for patients’ values, preferences, and expressed needs	Recognizing patient individuality and making an effort to deliver care which fits with their values, culture, and wishes.
Coordination and integration of care	Liaising with the patients other HCPs in order to ensure an integrated care experience in which patients receive complementary care and advice.
Information, communication, and education	Honest, transparent, easy-to-understand communication of health information and education regarding self-management behavior which may improve health.
Physical comfort	Alleviation of disease-related pain/discomfort and provision of a comfortable clinical environment.
Emotional support & alleviation of fear and anxiety	Recognition of the emotional impact of illness and efforts to respond to resulting issues such as anxiety and depression.
Involvement of family and friends	Accommodation of close loved ones in clinical appointments, correspondence, and decision-making and provision of support to those who take on a patient caregiver or support role.
Transition and continuity	Ensuring that patients and loved ones fully understand necessary regimens and are aware of warning signs to look out for, as well as pathways for follow-up.
Access to care	Provision of clear instructions regarding how patients may access care when they need it, and ensuring that processes (in hospitals, for specialist referrals, etc.) are as efficient as possible.

Notes: Data from Capuano et al²⁶; Edgman-Levitan and Cleary²⁷; Gerteis et al²⁸; Shaller²⁹; National Clinical Guideline Centre.⁵⁵

Abbreviation: HCPs, healthcare professionals.

Table 2 Categorization matrix

Categories	Codes	Example
Understanding my kidneys	CKD and what to expect Kidney functions Meanings of laboratory results ESKD and dialysis Innovations in CKD treatment	Perhaps a little more knowledge of how to manage kidney disease and what I should be doing to enhance it, so that it doesn’t get worse … It’s made me more aware of what I needed to know and what I needed to focus on … So that’s been a good education.
Having confidence	To self-manage Interacting with HCPs	The main thing is I keep up my exercise and keep up my medications. I keep up my food, diet, and I just got to be more comfortable and self-confident that I can do it, and I feel – I feel that I am.
Self-managing my condition	Modifying my lifestyle	It’s made me think a bit more about what I should and shouldn’t be eating and doing … I’ve made a couple of little changes along the way which I guess has got to be a good thing.
	Actively participating in healthcare (including managing my medications and establishing routine and planning ahead) Developing and sustaining a positive attitude and caring for mental and physical wellbeing	The tracking sheets, they were the best, yeah. So, next time- and the appointment journals, yeah that was everything that I’ve never thought of doing myself. [the program has] had a big impact. I’ve been able to, to actually deal with stress better than I have been in the past. The family’s noticed that too. I’m not yelling at them as much … The stress relief guide is one of the best ones that I’ve seen for ages. I think it should be mainstream for everyone. Because it does, it does help because I was suffering with a bit of stress, so going through that, working through that as well, has done a lot of good and it’s alleviated some of the pain.
	Building and sustaining effective relationships with HCPs	I’ve actually got a lot more confidence and know that I can actually ask questions … And don’t have to think ‘oh the doctor’s going to tell me this’ and then come home and think ‘the doctor didn’t answer that question’. So being able to, to know that I can actually ask them questions.
	Recognizing and effectively responding to symptoms	Well I do understand now … that you can get anaemia from the kidney and I do understand that the kidneys can cause a lot more problems than what I even thought.
	Engaging and sustaining social support	Just to be able to know that there are, there is support for, for different types of kidney problems … there’s a lot more that can be done if- you’ve just got to ask.
	Maintaining social and occupational roles	[It has improved my confidence in] keeping up with family.
Complexity and inconsistency in healthcare	Appointment-management Contradictory advice from HCPs Remembering information across multiple illnesses Concern about conflicting treatments Seeing a different doctor each time	I think what it’s [the intervention’s] done is it does tie all of the different aspects around caring for my health together, because everybody – and particularly the health team – has a different role to play. The dietician only talks to you about what you’re eating. The pharmacist only talks to you about your medication and probably your GP is the closest person that comes to knowing your whole story, but it is helpful to have that all tied together and I’m sure that’s quite difficult to navigate for most people because it is very complex and the health professionals don’t always talk to each other. So, I think that anything that helps tie that all together for you is a positive.
Wanting to help others	Wanting to help further research Wanting to help others with CKD	The information I give you could save someone’s life next year, or even next week, so I don’t mind doing kidney research.

Abbreviations: CKD, chronic kidney disease; ESKD, end-stage kidney disease; HCPs, healthcare professionals; GP, general practitioner.

Figure 2 Model and context of self-management from the patient’s perspective.

Abbreviations: CKD, chronic kidney disease; HCPs, healthcare professionals.

Table 3 Suggestions for future SMS interventions

Suggestion	Times identified (% of participants)
More face-to-face sessions	8 (12.7)
Integration with online/app interface	5 (7.9)
Specialized dietary intervention (ie, meal plans)	5 (7.9)
Ongoing support	5 (7.9)
Sessions after renal appointments at hospital	3 (4.8)
Structured, non-individualized approach	2 (3.2)
Involving HCPs	1 (1.6)
Enforced tracking/“homework”	1 (1.6)
Checklist for phone calls	1 (1.6)
Shorter program (6 weeks)	1 (1.6)
No phone sessions	1 (1.6)

Abbreviations: SMS, self-management support; HCPs, healthcare professionals.

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