Development of the Self-Care for Adults on Dialysis Tool (SCAD).
Abstract: The objective of this study was to develop a norm-referenced tool that would measure the self-care abilities and behaviours for adults requiring dialysis therapy. Guided by the Self-Care Deficit Nursing Theory (Orem, 2001) and an extensive review of the research literature, the Lay Care Giving for Adults on Dialysis tool (LC-GAD) (Horsburgh, Laing, Beanlands, Meng, & Harwood, 2008) was modified to develop the Self-Care for Adults on Dialysis (SCAD) measure. Content validity testing of the SCAD was conducted by a panel of 13 nephrology nursing experts. The tool was modified based on study findings. Further psychometric testing is required. When completed the SCAD tool will guide nurses to design and evaluate supportive self-care interventions for adults requiring dialysis.
Article Type: Report
Subject: Adults (Research)
Adults (Health aspects)
Self-care, Health (Training)
Chronic kidney failure (Diagnosis)
Chronic kidney failure (Research)
Dialysis equipment (Medical treatment) (Usage)
Dialysis equipment (Medical treatment) (Methods)
Authors: Costantini, Lucia
Beanlands, Heather
Horsburgh, Martha Elizabeth
Pub Date: 04/01/2011
Publication: Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2011 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136
Issue: Date: April-June, 2011 Source Volume: 21 Source Issue: 2
Topic: Event Code: 310 Science & research; 280 Personnel administration
Product: Product Code: E121940 Adults SIC Code: 3841 Surgical and medical instruments; 3845 Electromedical equipment
Geographic: Geographic Scope: Canada Geographic Code: 1CANA Canada
Accession Number: 259157201
Full Text: Background

Living with end stage renal disease (ESRD) necessitates regular dialysis treatments in conjunction with strict fluid and dietary restrictions, as well as complex medication regimens. Unfortunately, adults on dialysis cannot simply attend to the dialysis treatment; their self-care abilities and behaviours require life-long readjustment, if positive clinical outcomes are going to be reached (Braun Curtin, Mapes, Schatell, & Burrows-Hudson, 2005). Nephrology nurses routinely provide self-care instructions without any quantitative assessment tools that measure self-care abilities and behaviours in adults on dialysis. Providing information alone is insufficient when caring for a person with a complex chronic illness. Nurses need to determine the individual's capacity for self-care prior to providing health education. Nurses also require a method of assessing changes in self-care in response to the individual's illness trajectory and to nursing interventions.

A reliable assessment tool that measures self-care in people on dialysis is imperative. A norm-referenced measure of selfcare would allow nurses to assess self-care activities undertaken by adults on dialysis and, subsequently, direct nurses to develop supportive interventions designed to maximize self-care and, ultimately, improve health outcomes. While no instruments are available to measure dialysis-specific self-care, Horsburgh, Laing, Beanlands, Meng and Harwood (2008) developed a tool to measure caregiving activities provided by family/friends of adults on dialysis, the Lay Care Giving for Adults on Dialysis (LC-GAD) tool. Although developed for use with caregivers, the domains of the LC-GAD are congruent with the dimensions of dialysis self-care identified in the literature (Badzek, Hines, & Moss, 1998; Braun Curtin, Bultman Sitter, Schatell, & Chewning, 2004; Braun Curtin, Johnson, & Schatell, 2004; Braun Curtin, & Mapes, 2001; Braun Curtin et al., 2005; Curtin, Mapes, Petillo, & Oberley, 2002; Fok & Wong, 2003; Graham, 2006; Horsburgh, 1999; Horsburgh, Beanlands, Locking-Cusolito, Howe, & Watson, 2000; Horsburgh et al., 2008; Jones & Preuett, 1996; Lin, Lu, Wang, & Lai, 1998; Nozaki, Oka, & Chaboyer, 2005; Nugent, 2006; Oka, Kamiya, Sagawa, Yamana, & Tsuru, 2006; Polaschek, 2006; Sagawa, Oka, & Chaboyer, 2003; Sciarini & Dungan, 1996; Thomas-Hawkins & Zazworsky, 2005; Welch & Davis, 2000) suggesting the tool could be appropriately revised to measure self-care for adults on dialysis.

Purpose

This project was the first phase of a larger program of research designed to address the need for a norm-referenced, quantitative, self-care measurement tool. In this first phase, the investigators developed and tested an instrument to measure self-care activities for people on dialysis, the Self-Care for Adults on Dialysis tool (SCAD). Specific objectives for this project were to develop the SCAD and to conduct content validity testing of this tool with a panel of nephrology nurse experts.

Research method

This instrument development study involved revision of the LC-GAD (Horsburgh et al., 2008) followed by content validity testing of the new instrument, SCAD. An extensive literature review was conducted to identify content relevant to self-care for people on dialysis and to further categorize common domains of self-care. This empirical literature and Orem's theoretical perspective (Orem, 2001) guided the research team in modifying the LC-GAD to ensure that the SCAD captured content relevant to self-care.

Review of the literature

The Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline and Proquest databases were searched for articles that explored dimensions of self-care for people on dialysis. Articles published in English between 1980 and 2008 were included in the review. The terms self-care, self-management and dialysis were used to capture literature that fit these inclusion criteria. Studies in chronic kidney disease (CKD) where participants had not commenced dialysis therapy or had received a kidney transplant were excluded from this review. Of the 35 research articles found, seven focused on adherence, seven examined self-care in the context of psychosocial response to CKD, and the remaining 21 explored self-care activities and behaviours described by people on dialysis and/or their families.

In a review of the literature on adequate self-care among dialysis patients, Ricka, Vanrenterghem and Evers (2002) cited using Orem's (1985) definition of self-care and its dimensions to structure their review. The definition consisted of the following: "patients' deliberate actions regulating his/her functioning and development for health and well-being. The self-care theory claims that self-regulation is necessary for life itself, for health, for human development, and for general well-being" (Ricka et al., 2002, p. 329). Although they argued that Orem's definition of self-care was relevant for people living with kidney failure, the literature included in the review addressed adherence to various treatment dimensions rather than describing the actual self-care skills and abilities of people on dialysis. Therefore, the authors concluded that "very little is known about what dialysis patients actually do in [relation] to self-care" and that "a better understanding of dialysis self-care is needed" (Ricka et al, 2002, p. 337).

As described by Ricka et al. 2002, the adherence literature examined in this review used self-care language when describing study objectives. However, close examination of theoretical constructs and reported findings indicate that the ability of participants to follow prescribed treatment regimens was the actual aim of these studies (Christensen, Moran, Wiebe, Ehlers, & Lawton, 2002; Dowell & Welch, 2006; O'Connor, Jardine, & Millar, 2008; Richard, 2006; Ricka et al., 2002; Tsay, 2003; Zrinyi et al., 2003). This research examined various interventions, including different forms of behaviour modification to improve adherence with various aspects of the treatment plan (Christensen et al., 2002; Dowell & Welch, 2006; O'Connor et al., 2008; Tsay, 2003; Zrinyi et al., 2003). While these interventions provided people on dialysis with information and support that were designed to assist them in managing their care, the outcome measurements were only focused on adherence to treatment and did not address other aspects of self-care. Thus, these studies provided limited insight into the breadth of selfcare abilities and tasks undertaken by people on dialysis.

The psychosocial literature focused primarily on examining relationships among self-care and psychosocial indicators including quality of life, depression, adjustment and empowerment. Results of these studies suggested that, in general, self-care was associated with positive psychosocial indicators and that people on home dialysis or performing their own treatment in a dialysis unit (in-centre self-care) had higher role, social and psychological functioning, as compared with those dialyzing in a hospital setting (Ageborg, Allenius, & Cederfjall, 2005; Lev & Owen, 1998; Munakata, 1982; Meers et al., 1996; Tsay & Healstead, 2002; Tsay & Hung, 2004; Tsay, Lee, & Lee, 2005). These findings suggest that self-care activities are related to the overall wellbeing of people requiring dialysis, and highlight the need to further understand self-care. However, these studies did not explicitly examine self-care. They did not identify specific and measurable self-care activities and they failed to provide insight into the dimensions of self-care behaviours and abilities of people on dialysis.

The most relevant body of literature to understanding the specific domains of self-care was those studies that explored the subjective experiences of people on dialysis and their families (Badzek et al., 1998; Braun Curtin, Bultman Sitter, et al., 2004; Braun Curtin, Johnson, et al., 2004; Braun Curtin, & Mapes, 2001; Braun Curtin et al., 2005; Curtin et al., 2002; Fok & Wong, 2003; Graham, 2006; Horsburgh, 1999; Horsburgh et al., 2000; Horsburgh et al., 2008; Jones & Preuett, 1996; Lin et al., 1998; Nozaki et al., 2005; Nugent, 2006; Oka et al., 2006; Polaschek, 2006; Sagawa et al., 2003; Sciarini & Dungan, 1996; Thomas-Hawkins & Zazworsky, 2005; Welch & Davis, 2000). Although qualitative studies did uncover distinct selfcare themes, comparison of these themes across studies was challenging given the use of varying terms to describe similar concepts. For instance, the concepts monitoring, manipulation and deliberate management of symptoms and therapeutic regimes was a cognitive theme reported in several studies (Braun Curtin, Bultman Sitter et al., 2004; Braun Curtin & Mapes, 2001; Jones & Preuett, 1996; Nozaki et al., 2005; Lin et al., 1998; Polaschek, 2006; Sagawa et al., 2003; Thomas-Hawkins & Zazworsky, 2005). This descriptively suggests that patients put a great deal of thought into the meaning of their symptoms as well as how to manage the demands of dialysis. In addition, findings indicated that people on dialysis searched for disease specific information which allowed them to become more engaged in their own care (Badzek et al., 1998; Braun Curtin, Bultman Sitter, et al., 2004; Horsburgh et al., 2008; Thomas-Hawkins & Zazworsky, 2005). Integral to this process was the practice of maintaining vigilant oversight of one's own care or self-advocating. Here people on dialysis described forming relationships with health care professionals for the purpose of communicating preferences specific to their treatment (Braun Curtin, Bultman Sitter, et al., 2004; Braun Curtin, Johnson, et al., 2004; Braun Curtin & Mapes, 2001; Braun Curtin et al., 2005; Horsburgh et al., 2008; Jones & Preuett, 1996; Nugent, 2006; Polaschek, 2006; Thomas-Hawkins & Zazworsky, 2005). The literature further pointed to a distinction between managing the illness and managing one's everyday life. People on dialysis expressed a need to maintain a 'normal' lifestyle congruent with their beliefs and values (Braun Curtin, Johnson, et al., 2004; Braun Curtin et al., 2005; Horsburgh et al., 2008; Jones & Preuett, 1996; Lin et al., 1998; Polaschek, 2006; Sciarini & Dungan, 1996). As well, renal treatment regimens demanded the completion of numerous discrete tasks, often on a daily basis, in order to maintain optimal function and health (Braun Curtin, Bultman Sitter, et al., 2004; Braun Curtin, Johnson, et al., 2004; Braun Curtin & Mapes, 2001; Braun Curtin et al., 2005; Horsburgh et al., 2008; Lin et al., 1998; Sagawa et al., 2003; Welch & Davis, 2000).

Although the terminology used in the literature was not consistent, a number of common domains of self-care were evident. Specifically, the following five self-care themes were identified; appraising, knowledge seeking, advocacy, normalizing, and self-care tasks (Badzek et al., 1998; Braun Curtin, Bultman Sitter et al., 2004; Braun Curtin, Johnson, et al., 2004; Braun Curtin & Mapes, 2001; Braun Curtin, 2005; Horsburgh et al., 2008; Jones & Preuett, 1996; Lin et al., 1998; Nugent, 2006; Polaschek, 2006; Sciarini & Dungan, 1996; Thomas-Hawkins & Zazworsky, 2005; Welch & Davis, 2000). These themes were comparable to the themes uncovered during the development of the LC-GAD (Beanlands et al., 2005; Horsburgh et al., 2008) suggesting that this tool could be appropriately revised to capture self-care for adults on dialysis.

Conceptual definitions for each theme were developed by the researchers based on the literature review, Orem's theoretical perspective on self-care (Orem, 2001) and definitions uncovered in the development of the LC-GAD. The initial definitions for each theme are provided below.

Appraising. This theme was defined as "the often unseen, but energy-consuming process; the cognitive work that underlies the self-management of the illness and treatment."

Knowledge seeking. This theme was defined as "the search for information regarding kidney disease and illness management."

Advocacy. This theme was defined as "vocalizing one's preferences and desires related to the illness and treatment, as well as negotiating treatment plans with professional care givers."

Normalizing. This theme was defined as "the efforts people make to balance their illness with other areas of their lives."

Self-care tasks. This theme was defined as "readily observable and/or behavioural day-to-day activities directly associated with managing kidney disease and its treatment, including dialysis."

Development of the SCAD

Items were developed for each of the five domains of self-care based on the conceptual definitions and corresponding items on the original LC-GAD. Using an iterative consultation process the investigators reviewed and revised the items to ensure that a) a sufficient number of items were included in each domain, b) item content was congruent with the conceptual definition, c) various dimensions of each domain were represented, and d) the readability of the item was appropriate to the intended users. The resulting 77-item SCAD consisted of 16 appraising items, seven knowledge seeking items, six advocacy items, eight normalizing items and 40 self-care task items. Items were scrambled so they appeared in a random order on the SCAD for the purpose of content validity testing.

Content validity testing

Content validity testing examines the extent to which the items on a measure, and the instrument, as a whole, capture the underlying construct that the instrument is designed to examine (Waltz, Strickland, & Lenz, 2005). Assessment of content validity includes an evaluation of the congruence of items with conceptual definitions, the relevance of the items to the underlying construct and the comprehensiveness of the overall tool in capturing the construct of interest. The index of content validity is a commonly used approach to assess content validity. Polit and Beck (2006) define the Index of Content Validity (CVI) as "the degree to which a scale has an appropriate sample of items to represent the construct of interest ..." (p. 459). A CVI is calculated by having a panel of experts review each item and rank the relevance of each item, as well as the instrument as a whole, to the underlying construct and its various domains. In the present study, the SCAD was sent to a panel of expert nephrology nurses for content validity testing.

Sample. Following Research Ethics Board approval, a purposeful sample of 17 nephrology nursing experts (e.g., professors, nurse practitioners, clinical nurse specialists, and clinical educators) from a number of different Canadian provinces were invited to assess the content validity of the tool. A 50% response rate was anticipated resulting in a target sample size of nine, which is considered appropriate for content validity testing (Polit & Beck, 2006).

Measures & Analysis. Nurse experts were mailed a package with a letter of introduction, definitions of self-care domains, a copy of the SCAD, and instructions for the content validity index (CVI) assessment, a brief demographic questionnaire, and an evaluation form for completing the CVI. For the purpose of calculating a CVI, assessors were asked to rate the relevance of each item to self-care on a four-point Likert scale ranging from 1 (not relevant) to 4 (very relevant) (Waltz, et al., 2005). A CVI was calculated for each item by determining the number of experts who rated the item as "quite" or "very relevant". A mean CVI was calculated for each of the domains and for the total instrument. Items with a CVI of Less than .80 (i.e., less than 80% of experts rated them as relevant) were reviewed and a determination was made as to whether the item should be dropped from the tool or retained and rephrased based on expert feedback (Polit & Beck, 2006).

Experts were also asked to evaluate the fit of each item with the self-care domains based on the definitions provided and to comment on the completeness of the overall tool in capturing self-care. Experts' responses were then examined to determine level of agreement amongst the experts and investigators as to whether each item fit with the assigned domain. Items that had a low level of agreement (less than 80%) were examined by the investigators to determine if there were patterns of incongruence.

Results

Of the 17 packages mailed to potential experts, 13 were returned for a response rate of 76%. All CVI assessment packages were completed. However, two participants did not provide demographic information.

The sample of experts averaged 21.45 years of nephrology experience ranging from three to 34 years. Ten participants held a master's degree or higher and one expert reported the extended class nurse practitioner competency as their highest level of education.

The participants were employed in advanced practice roles in nephrology nursing varying from clinicians to educators. The majority of items had a CVI Greater than.80 with only 16 items falling below.80. The CVI for the appraising, knowledge seeking, advocacy, normalizing and self-care tasks domains were.87,.84, .95,.98,.88, respectively. Overall, the mean CVI was.89 for the SCAD tool.

Low agreement in terms of the fit of items with the domain between investigators and evaluators was evident. Of the 77 items in the SCAD tool, 32 items demonstrated 80% agreement amongst the researchers and experts. The domain items with the lowest level of agreement were appraising and self-care tasks.

Panel experts also provided qualitative comments about the items and the overall tool. These comments, coupled with the results of the CVI and item-domain matching, suggested that panel experts appeared to have difficulty with items that contained the words "assess", "determine" and "evaluate". Experts reported that these words were confusing when trying to link items to their domains based on the domain definitions. The investigators re-evaluated the items and determined that the word "monitor" should be substituted for the words "assess", "determine' and "evaluate" so that each item clearly represented content that was congruent with the definition of its respective domain. Therefore, appraising domain items were modified to read, "I monitor ..." rather than using the word "evaluate." As well, under the appraising domain the word "recognize" was used to replace the words "assess" and "determine." In addition, panel experts identified some areas of self-care that were not captured in the tool. Consequently, three new items were added under the appraising domain to include the following; "I monitor my bowel functions", "I monitor my breathing for shortness of breath" and "I monitor my mobility".

A number of revisions were made to the tool after reviewing items with low CVI and/or low agreement in terms of domain fit and taking into consideration expert feedback. Five items were reassigned to different domains. For example, the item "I evaluate my medical condition" was reassigned from self-care tasks to appraising. Fifteen items were dropped from the tool due to CVI scores that were less than.80. Twelve items were retained despite obtaining a low relevancy score, (included here were alternative therapy items), as investigators determined that rephrasing of the item and expanding the domain definitions would have resulted in a high relevancy score. This determination was supported by the literature and expert feedback. Domain definitions were reviewed and revised to enhance clarity and to more accurately reflect the domain content.

The final version of the SCAD tool contains 66 items and five subscales. Respondents will rate their self-care activities and behaviours based on a five-point Likert scale, which includes 'never', 'rarely', 'sometimes', 'quite frequently', and 'nearly always.' The 'appraising' domain consists of 18 items that speak to the cognitive work people on dialysis do to manage their illness. The 'knowledge seeking' domain captures seven items related to developing an understanding of ESRD and illness-related self-care. The 'advocacy' domain contains six items that describe forming relationships and asserting one's beliefs and preferences to health care professionals. The 'normalizing' domain comprises nine items that assess balancing preferred lifestyle with the illness and its treatment. The 'self-care tasks' domain consists of 25 items that measure discrete and often daily activities people on dialysis must perform in order to manage their illness. The final domain definitions with two examples of items for each domain are outlined in Table 1.

Discussion

Overall, the research findings support the content validity of the SCAD tool. The modifications made to the items and the rephrasing of the domain definitions were intended to enhance the clarity and comprehensiveness of the tool. A re-examination of the literature coupled with expert feedback indicated two principal issues with the content of the tool. Expert feedback indicated that the terms "assess", "evaluate" and "determine" were viewed as having a similar meaning, making differentiation of items using these terms challenging. Therefore, the investigators sought another term that could be used consistently in the SCAD to reflect these activities. Braun Curtin and Mapes (2001) found that study participants' used the word monitor when describing their self-care experiences. The dictionary definition of monitor is to "keep under observation, especially so as to regulate, record, or control" (Compact Oxford English Dictionary of Current English, 2008). Thus, words "assess" "evaluate" and "determine" were replaced with the word "monitor" in all items.

In addition, experts reportedly had difficulty with the domain definitions for appraising and self-care tasks making item placement inconsistent. Further evaluation of the literature, LC-GAD findings and meetings amongst project investigators resulted in the expansion of domain definitions for "appraising", "knowledge seeking", "advocacy", "normalizing" and "self-care tasks". A richer description of domain definitions coupled with clarification of items was intended to ameliorate ambiguity identified by the experts.

Items pertaining to alternative therapy activities and behaviours were retained despite low relevancy results. Examples of these items included, seeking assistance from a naturopathic doctor or acupuncturist to alleviate symptoms. The literature suggests that people on dialysis use alternative therapies and often do not report this usage to their health care provider. Duncan et al. (2007) reported that 81% of hemodialysis study participants' use, have used, or were willing to use, alternative therapies while only 37% had disclosed this information to their health care providers. In addition, Nowack (2009) found that 57% of dialysis patients regularly used alternative therapy products and 50% of these patients informed their physicians. These findings suggest that alternative therapy use is not routinely reported to the health care provider. It is possible that health care providers have not been trained to integrate alternative therapies into their practice. Therefore, they do not ask people on dialysis questions regarding use of other health management methods. This highlights the need to retain alternative therapy-related items, as health care providers must be aware of other factors that may impact on dialysis treatments and clinical outcomes. As well, providers must identify which alternative practices could be contraindicated and provide this information to adults on dialysis. As such, retaining the alternative therapy items will give nurses a more complete picture as to the self-care activities and behaviours of adults on dialysis.

The current research reports the first steps in developing the SCAD--an evidence-based, norm referenced measure to quantify the self-care activities and behaviours of adults on dialysis. As such, recommendations for future research are that the SCAD tool requires further psychometric testing with a sufficiently large and inclusive sample of adults receiving dialysis treatments for CKD. Subsequent testing is likely to lead to modifications that enhance reliability and validity of the SCAD. Ultimately, it is anticipated that the final version of the SCAD will prove useful to nurses in helping them design nursing systems that facilitate the self-care abilities and behaviours of adults receiving dialysis treatments for CKD, as these abilities and behaviours are acquired, developed, and carried out over time. Used in conjunction with measures such as the LCGAD (Horsburgh et al., 2008), the SCAD will also enable the examination of the interplay between self-care and supportive activities and behaviours that are often provided by close family members and friends.

Acknowledgement

The authors would like to acknowledge the support of a CANNT 2007 Research Grant for this project.

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Copyright [c] 2011 Canadian Association of Nephrology Nurses and Technologists

Lucia Costantini, RN, MN, CNeph(C), PhD student, McMaster University, Hamilton, ON.

Heather Beanlands, RN, PhD, Program Director, Master of Nursing Program, Daphne Cockwell School of Nursing, Ryerson, University, Toronto, ON.

Martha E. (Beth) Horsburgh, RN, PhD, Associate Vice-President Research - Health (University of Saskatchewan)/Vice-President Research & Innovation (Saskatoon Health Region), Saskatoon, SK.

Address correspondence to: Lucia Costantini, RN, MN, CNeph(C), PhD student, McMaster University, 1280 Main Street West, Hamilton, ON L8S 4L8. Email: costantini@cogeco.ca

Submitted for publication: November 17, 2010.

Accepted for publication in revised form: March 14, 2011.
Table 1. Self-care domains, final definitions and examples of SCAD items

Self Care Domain and                   Example items
Definition

Appraising             "I recognize when my health needs exceed my
"The often unseen      ability to care for myself"
cognitive work that    I recognize when I am getting worse"
underlies the
self-care activities
directed toward
managing the illness
and treatment. This
energy consuming
process involves
making judgments or
drawing conclusions
regarding care."

Knowledge Seeking      "I consult professional care givers (doctors,
"The search for        nurses, dieticians, others) for information about
information via        my illness and treatment"
asking questions,      "I learn how to do my medical treatments"
reading and/or
internet utilization
to gain an
understanding of
kidney disease and
learn how to manage
the illness."

Advocacy
"Expressing one's      "I speak out on my behalf"
preferences and        "I negotiate with professional caregivers
desires related to     (doctors, nurses, dieticians, others)"
the illness and
treatment as well as
negotiating treatment
plans with
professional care
givers."

Normalizing
"The efforts people    "I try to find ways that make my life as normal
make to balance        as possible"
their illness with     "I rearrange my routine"
other areas of their
lives including
maintaining usual
roles,
responsibilities and
desired lifestyles."

Self-care tasks        "I manage my medications"
"Readily observable    "I follow my prescribed diet"
and/or behavioural
day-to-day activities
directly associated
with managing kidney
disease and its
treatment, including
dialysis."
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