Chapter 2: Patient Centered Concerns
- Linda Norton MSc.CH, PhD, IIWCC (CAN), OT Reg. (Ont.)
- Patricia Coutts RN, IIWCC (CAN)
- Identify the impact chronic wounds have on the client’s quality of life
- Describe the interplay between chronic wounds and lifestyle factors
- Demonstrate adapting best practices to the client’s situation
Mary is a 74-year-old woman who is well known to you. She has had several neuropathic foot ulcers over the years, that have always progressed to closure. You have been seeing her for the past 6 weeks for a neuropathic foot ulcer on the plantar aspect of the first metatarsal head. Despite Mary telling you that she is following the treatment plan and offloading her foot, you notice that once again she has a significant callus build up around the wound. As you work on debriding the callus, Mary tells you how excited she is now that her daughter and grandchildren have moved back to town. Mary is looking forward to babysitting her grandchildren once per week, and baking cookies with them. She tells you about all the fun she is having scurrying around the kitchen with them. As you listen to her talk, you recognize that baking cookies with her grandchildren is likely contributing to the increased callus and may contribute to difficulty closing the wound. How would you address this situation with Mary?
The treatment and management of chronic wounds is multifaceted, complex and requires the client to change many aspects of the way they live their life to adhere to the treatment plan. For example, a recommendation to offload a neuropathic foot ulcer may mean a warehouse worker cannot perform their job, a family caregiver cannot look after their loved one, or a person cannot go for a walk outdoors, that they have previously found helpful for their mental health. Given the far-reaching impacts of treatment plans, health care providers have a responsibility to address patient centred concerns to help to foster adherence to the treatment plan.
It is important to recognize that chronic wounds affect the client’s quality of life and may potentially influence what the client is able to do; but the client’s lifestyle – the way they live their life – can influence the heal-ability of the wound. By examining both quality of life and lifestyle factors, clinicians can determine the specific factors that are relevant for each client and address them as part of the treatment plan.
Client-Centred Concerns: Quality of Life
Quality of life, when discussed in the medical literature, is restricted to health-related quality of life (Price & Krasner, 2012) i.e. related to the individual or group’s perceived physical and mental health over time (Centers for Disease Control and Prevention, 2022). Quality of life is an all-encompassing term and includes both “health-related quality of life” and all factors that impact on an individual’s life (Price & Krasner, 2012). In Mary’s case, the impact of the chronic wound is not just on her perception of her health but has a meaningful impact on the way she interacts with her grandchildren, and her hobby of baking cookies.
This idea of quality of life is far reaching and requires an assessment in many domains of the client’s life including loss of sense of self, influence on relationships, coping, treatment plans, relationships with caregivers, mobility, pain, depression, and lifestyle factors. Each of these will be discussed in turn.
Loss of sense of self (Kinmond, Mcgee, Gough, & Ashford, 2003)
The wound or the injury takes over—they become the wound rather than the person. The individual’s schedule and choices they make are influenced by the wound rather than their own desires.
Influence on relationships (Gorecki C, Brown JM, Nelson EA, Briggs M, Schoonhoven L, Dealey C, Defloor T, 2009; Gorecki, Nixon, Madill, Firth, & Brown, 2012)
The wound may prevent the person from maintaining intimate relationships with their spouse or impact the relationship with their families and friends. The wound may prevent the person from engaging in their usual social activities. The odor and exudate may make the individual hesitate to interact with others and make others uncomfortable to interact with them.
Coping (Gorecki et al., 2012)
Individuals react differently to stress and may have difficulty coping with the health impacts. Sleep patterns can also be disrupted, resulting in a lack of restful sleep. The length of time the individual has had the wound also impacts their ability to cope. One coping strategy that an individual might normally employ includes increasing their activity, however activity can be limited by the chronic wound. Education may play a role here to help empower the client and improve their coping abilities. (Gorecki C, Brown JM, Nelson EA, Briggs M, Schoonhoven L, Dealey C, Defloor T, 2009). The circle of care, including friends and family can contribute to the individual’s ability to cope.
Treatments (Price & Krasner, 2012)
The individual needs to schedule their activities of everyday living around dressing changes, and the schedule of the health care provider. Inconsistencies in care providers, timing of dressings, approach to completing the dressing etc., can all have an impact on the individual’s quality of life. Scheduling around dressing changes may make it difficult for the individual to maintain their employment and could have a financial impact.
Relationships with Care Provider (Gorecki C, Brown JM, Nelson EA, Briggs M, Schoonhoven L, Dealey C, Defloor T, 2009)
Expectations around treatments and goals may be different between the individual and the health care provider. The health care provider’s expectation may be that the individual will follow the set treatment plan, the individual’s may be that the care provider will heal the wound, regardless of whether the treatment plan is followed. In Mary’s case, her wounds have always progressed to healing. She may not recognize that the goal of spending time baking and standing on her feet for indefinite periods of time with the grandchildren is negatively impacting the goal of wound healing.
Mobility (Price & Krasner, 2012)
Mobility has a major influence on every aspect of the client’s life including their independence with activities of daily living, their ability to grocery shop, their ability to continue working and participation in family activities etc.
Pain (Price & Krasner, 2012)
Recognizing that pain is an important factor influencing quality of life, and has been studied in relationship to chronic wounds, it is not the sole factor contributing to the individual’s perceived quality of life. Even if the client is not in pain, the wound could still have a detrimental impact on the individual’s quality of life. Listening to the client’s reported pain levels and in particularly, increases in pain levels, can provide early indications of deterioration or the need for analgesics.
Depression needs to be considered in relationship to individuals with chronic wounds. All of the factors listed – decreased mobility, pain, potential for isolation, treatment regimes, coping, loss of sense of self can all contribute to feelings of depression. Feelings of depression can further negatively impact quality of life. (Price & Krasner, 2012)
Client Centered Concerns: Lifestyle factors
Clinicians believe lifestyle factors are important to address, but there isn’t a common definition of lifestyle factors nor how to address them (Norton, 2018). Lifestyle factors can be defined as the habits and choices the individual makes throughout their day.
Performing simple activities of daily living (ADL) can be difficult for clients with chronic wounds and can result in client’s needing to reorganize these activities (Joaquim, Silva, Garcia-Caro, Cruz-Quintana, & Pereira, 2018). Conversely, the way a client currently performs their ADLs may impact wound healing. Consider a client with a spinal cord injury dressing independently in bed; the area of the wound may be subject to increased pressure or shear forces during this activity.
Treatment plans, especially those that require time, or a change in the client’s lifestyle can be difficult to implement.
“Many people with spinal cord injury perceive a trade-off between performing pressure- redistributing activities and participating in life. Everything takes longer to accomplish for a person with spinal cord injury, and many feel they simply do not have time for both. Participating in life is the choice they often make.” (Houghton, Campbell, & Panel, 2013)
Recognizing the impact that the wound, and treatment plans have on the client and their lifestyle, enables the clinicians to move beyond how to “fix” the wound, and move alongside the client to jointly determine the best course of action for that specific client given their goals, their abilities and lifestyle.
Consider a person with a neuropathic foot wound, like Mary described in the case study. Offloading, might be part of the treatment plan, however barriers to accessing devices such as funding, delivery systems etc. make access to this equipment difficult (Mattison, Wilson, Wang, & Waddell, 2020). Having the client limit the time on their feet may be another strategy, however this strategy may have unintended outcomes. For example, if the client is working, they may need to have accommodations made at work, or it may limit their ability to work. In Mary’s case, making a recommendation of reducing the time on her feet, would result in her not being able to enjoy baking cookies with her grandchildren.