Patients and social support. Surprisingly, patients were reluctant to discuss the extent of practical and emotional support they received from family and friends, despite prompts in the interview. When support was reported, it was referred to as a general type of support rather than support specific to controlling their blood sugar or healing their ulcers.
Interviewer: “Do you find that your family [is] very supportive?”
Patient: “Oh, yeah, yeah.”
Interviewer: “And do they help with your diabetes and your foot problems specifically, or is it a more general kind of support?”
Patient: “Just general kind of support I suppose. They do things for me that I can’t do…well, my elder son, he runs me about everywhere. He brings me up here every time I got to come, and I got me mobile phone they bought me for Christmas.” (female, 61 years, diabetes for 18 years, foot ulcer 1 year)
It also appeared that other patients with diabetes were good sources of social support, as such patients shared personal experiences of living with the condition, which provided a sense of camaraderie and identity.
Interviewer: “Do you feel you would like a bit more support from your family then?”
Patient: “It would be nice. But I don’t keep ringing them up. If they wanna ring up, the phone’s there. I mean I ain’t gonna spend hours and hours talking to them every day of the week, but it ain’t going to change the fact that they never done it, and I can’t see them starting it now.”
Interviewer: “What about other diabetics?”
Patient: “Oh, I get on very well with the other diabetics I know down at the Bristol Royal Infirmary [Hospital]. I know quite a few, because we do see each other on a Tuesday or Friday or whatever. We knows all, and we all have the same bad shoe treatment like the little flat sandal with the things that flap over the top. We’ve all had ulcerated toes. There’s a lot who have had amputations.” (male, 57 years, foot problems for 10 years)
Podiatrists’ perceptions of social support. Podiatrists differed in their perceptions of the effect of family on patient outcomes, as the following quotes portray. Some perceived family to be a positive influence, providing practical and social support in terms of help with dressings, transport to the clinic, and emotional support.
“If they’ve got caregivers to help them with, say, changing the dressings or checking that the dressings are okay and things, that’s got to help; they’re going to heal better. And…well, having family contacts or, you know, social contacts that can help you would make a difference. You know, when you feel better…easier to comply with what we’re asking them to do [laughs]. So, really, if you’ve got a patient who’s in a family unit, they’re far more likely to heal, generally, than the patients who are on their own.” (female podiatrist)
However, some podiatrists perceived family to exert a potentially negative influence by making it difficult for patients to rest and follow advice. This was perceived to be the case for patients with caregiving roles or when family members did not understand the patient’s condition and needs.
“[If they had a] partner encouraging them to eat the wrong things or expecting them to go to, say, the Galleries [a shopping center] or something for 3 hours and being upset because that person can’t do the walking…Certainly, if your spouse or partner or whoever doesn’t understand…definitely. They might not have the sympathy that you need or the support, so it would hinder healing I would think.” (female podiatrist)
It was perceived that patients who live alone are lonely, and this may affect ulcer healing. Healing may also be hindered by the lack of practical support with self-care and activities, such as shopping and cooking, so that their abilities to rest appropriately, look after their feet, and eat nutritiously is affected.
Responsibilities in patients’ lives, such as caregiving or work, were perceived to affect patients’ abilities to rest. It was perceived that some patients might not be able to afford nutritious food, appropriate footwear, and other commodities, which could influence healing. There were mixed perceptions of the effects of educational levels on healing; some believed well educated patients had a better grasp of what the podiatrist was saying. Conversely, it was perceived that even highly educated patients would not follow advice.
Discussion
The studies presented in this article were qualitative examinations of the experience of foot ulceration and treatment from the perspective of both patients and podiatrists. Ulcers and subsequent treatment had considerable impact on patients’ lifestyles. Both ulcer and treatment affected mobility, independence, and social life, and these experiences often led to anger, fear, depression, helplessness, boredom, and loss of self-esteem. These findings support those of other studies.22,23
Podiatrists also perceived that foot ulcers had a negative impact on patients’ lives and their emotional well-being. They were also aware that psychosocial factors influenced the patients’ responses to their ulcers. In post-interview discussions, podiatrists described difficulties in accessing the relevant information from patients to help understand them better. Podiatrists felt that they lacked the necessary skills to deal with patients’ emotions and did not probe patients for this reason. They also said they did not know what questions to ask patients. Therefore, despite awareness of the issues affecting patients, podiatrists may have been unable to understand individual patients, because they were unable to elicit the relevant information.
The podiatrists’ perspectives generally appeared to be rooted in the clinical agenda, whereas patients appeared to have more expansive perspectives based on experiences. However, some podiatrists displayed an ability to think beyond the clinical situation and actively attempted to consider the patient’s psychosocial context.
The results also indicate that patients’ nonadherence with foot-care advice, particularly footrest, was common. Patients found it difficult to adhere within the constraints of their everyday lives. Patients often chose to prioritize their lifestyles and emotional well-being over their foot care, especially when the ulcers are painless, as is the case in the neuropathic foot. Patients seemed to also employ “strategic nonadherence,” balancing the importance of their QoL and their self-care and weighing the costs and benefits of adherence. Strategic nonadherence is common and has been documented in diabetes and other chronic conditions.24,25
For podiatrists, adherence to footrest and other advice was perceived as having an effect on healing. Podiatrists perceived adherence to change over time and dependent on the duration of the ulcer. This is consistent with findings in wider literature on adherence.26 Podiatrists were also aware of factors internal to the patient, external factors, and also factors relating to the podiatrist, which may influence adherence. Internal patient factors believed to play a role were denial or realization of the problem and patients’ expectations regarding treatment. Patients’ acknowledgement of the seriousness of their ulcers and of the possible negative consequences of nonadherence were considered to be a prerequisite to adherence.
Patients’ beliefs about the efficacy of the recommended behaviors were considered important. If patients were unable to see improvements relating to their behaviors, which is often the case, as ulcer healing is gradual, it was believed that this reduced their faith in the self-care treatments and consequently their adherence. Podiatrists also believed patient expectations of the medical profession played a role. It was believed that some patients expected the medical profession to be capable of and responsible for healing their ulcers and, therefore, did not believe their own input to be necessary. External factors that were perceived to affect adherence were socioeconomic factors, family, and occupational demands. They also noted that patients lacked the physical abilities to perform the required self-care tasks (eg, they may be unable to see their feet to check them or reach them to apply cream). The inability to feel pain was considered to be a barrier to resting and wearing appropriate footwear.
Podiatrists viewed ulcer healing from a biopsychosocial perspective, believing that medical factors, such as infection control, vascular supply, and self-care behaviors, were vital but acknowledged that self-care was mediated by psychosocial factors. It was believed a positive mental attitude and good social support would benefit healing. Low mood, loneliness, and denial were all perceived to have adverse effects on coping, self-care, and consequently healing. Podiatrists were aware of the difficulty of performing self-care behaviors because of constraints of everyday life, such as family and work.
Podiatrists believed that some patients, whom they perceived as lonely and lacking in social support outside of the clinic, become dependent on the social interaction with other patients and staff at the clinic. Ulcer treatment requires regular attendance, often on a weekly basis. This regular contact with the same patients, coupled with the bond created by shared experiences of diabetic foot ulcers, appears to have resulted in friendships and formation of social groups in the waiting areas of the clinics, resulting in a secondary social gain from patients’ ulcers. While only a minority of patients were perceived to become dependent in this way, podiatrists believed that the dependence had an adverse effect on their healing, because healing would mean loss of an important social network.
Methodological issues. Several methodological issues should be considered. Nontheoretical sampling was used, and this produced a patient sample that differed greatly in age, type of diabetes, treatment, and duration of diabetes and foot ulceration. An alternative approach would have been to use purposive, or theoretical, sampling. This would have allowed comparisons between different patient types, eg, men and women or those with current and healed ulcers. However, the nontheoretical approach was considered appropriate for this study, as it enabled the authors to elicit a wide range of views.
The cross-sectional design employed in the studies made it impossible to explore how QoL, psychological well-being, and adherence changed over time. It is likely that the current status and symptoms of the wound influence these factors. Future research employing a longitudinal design could examine these issues. It should be considered that patients’ and podiatrists’ responses might have been subject to a social desirability bias, despite every effort to assure confidentiality.
Implications for clinical practice and future research. The keys to improving adherence may be to understand patients’ priorities and constraints and to work with them to develop treatment plans. For example, understanding patients’ priorities may help healthcare providers to find alternative ways of motivating patients to comply with foot care. Healthcare professionals may also find it helpful to find out more about their patients, such as the impact of treatment on QoL and well-being, patients’ sources of social support, etc. Understanding and addressing psychosocial barriers to adherence and harnessing facilitating factors, such as social support, may increase adherence to self-care and improve clinical outcomes in patients with foot ulceration.
Acknowledgements
The authors would like to thank the patients and podiatrists who kindly participated in this research.
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References
1. Levin M. Diabetic foot wounds: pathogenesis and management. Adv Wound Care. 1997;10(2):24–30.
2. Williams R, Airey M. The size of the problem: epidemiological and economic aspects of foot problems in diabetes. In: Boulton AJ, Conner H, Cavanagh PR, eds. The Foot in Diabetes. Chichester, England: John Wiley & Sons; 2000.
3. Todd WF, Armstrong DG, Liswood PJ. Evaluation and treatment of the infected foot in a community teaching hospital. J Am Podiatr Med Assoc. 1996;86(9):421–426.
4. Ramsey SD, Newton K, Blough D, et al. Incidence, outcomes, and cost of foot ulcers in patients with diabetes. Diabetes Care. 1999;22(3):382–387.
5. O’Meara S, Cullum N, Majid M, Sheldon T. Systematic reviews of wound care management: (3) antimicrobial agents for chronic wounds; (4) diabetic foot ulceration. Health Technol Assess. 2000;4(21):1–237.
6. Kantor J, Margolis DJ. Expected healing rates for chronic wounds. WOUNDS. 2000;12(6):155–158.
7. Muha J. Local wound care in diabetic foot complications: aggressive risk management and ulcer treatment to avoid amputation. Postgraduate Medicine. 1999;106:97–102.
8. Tennvall GR, Apelqvist J. Health-related quality of life in patients with diabetes mellitus and foot ulcers. J Diabetes Complications. 2000;14:235–241.
9. Brod M. Quality of life issues in patients with diabetes and lower extremity ulcers: patients and care givers. Qual Life Res. 1998;7:365–372.
10. Carrington AL, Mawdsley SKV, Morley M, et al. Psychological status of diabetic people with or without lower limb disability. Diabetes Res Clin Pract. 1996;32:19–25.
11. Litzelmen DK, Slemenda CW, Langfeld CD, et al. Reduction of lower extremity clinical abnormalities in patients with non-insulin dependent diabetes mellitus. Ann Intern Med. 1993;119:36–41.
12. Suico JG, Marriot DJ, Vinivor F, Litzelman DK. Behaviors predicting foot lesions in patients with non-insulin dependent diabetes mellitus. J Gen Intern Med. 1998;13:482–484.
13. Armstrong DG, Lavery LA, Kimbriel HR, et al. Activity patterns of patients with diabetic foot ulceration: patients with active ulceration may not adhere to a standard pressure off-loading regimen. Diabetes Care. 2003;26:2595–2597.
14. Jorgensen WA, Polivka BJ, Lennie TA. Perceived adherence to prescribed or recommended standards of care among adults with diabetes. Diabetes Educ. 2002;28:989–998.
15. Knowles EA, Boulton AJ. Do people with diabetes wear their prescribed footwear? Diabet Med. 1996;13:1064–1068.
16. McNabb WL. Adherence in diabetes: can we define it and can we measure it? Diabetes Care. 1997;20:215–217.
17. Toljamo M, Hentinen M. Adherence to self-care and glycaemic control among people with insulin-dependent diabetes mellitus. J Adv Nurs. 2001;34:780–786.
18. Vilekieyte L, Rubin RR, Leventhal H, et al. Determinants of adherence to preventative foot care. Diabetes. 2001;50:A17.
19. Masson EA, Angle S, Roseman P, et al. Diabetic foot ulcers: do patients know how to protect themselves? Practical Diabetes. 1989;6:22–25.
20. Haynes RB, Sackett DL, Taylor DW, eds. Compliance in Health Care. Baltimore, MD: Johns Hopkins University Press; 1979.
21. Kurtz MS. Adherence to diabetes regimens: empirical status and clinical applications. Diabetes Educ. 1990;16(1):50–56.
22. Ashford R, McGee P, Kinmond K. Perception of quality of life by patients with diabetic foot ulcers. The Diabetic Foot. 2000;3:150–155.
23. Meijer JW, Trip J, Jaegers SM, et al. Quality of life in patients with diabetic foot ulcers. Disabil Rehabil. 2001;23(8):336–340.
24. Campbell R, Pound P, Pope C, et al. Evaluating meta-ethnography: a synthesis of qualitative research on lay experiences of diabetes and diabetes care. Soc Sci Med. 2003;56(4):671–684.
25. Donovan JL, Blake DR. Patient non-compliance: deviance or reasoned decision-making? Soc Sci Med. 1992;34(5):507–513.
26. Horne R. How to encourage good patient compliance. Medicine. 24 Feb 2000;94–95. |