ASSESSMENT TOOL (D-SCAT): CONCEPTUALIZATION AND ASSESSMENT OF SELF-CARE IN A REAL LIFE
II. METHODS Study Setting
This study was conducted in Negeri Sembilan that is located in the central region of Malaysia. Its population is made up over one million of multiracial population with majority are Malays 61.5 percent, 22.9 percent Chinese, and 15.1 percent Indians, while other ethnic groups make up 0.5 percent. Among the states in Malaysia, Negeri Sembilan is well-known for its unique culture and traditions which is stems from the Law of Perpatih (AdatPerpatih) that brought over from Minangkabau, Sumatera Indonesia in the eighteenth century and passed down through generations. The Law of Perpatih is also modeled the monarchy system of state government. In Malay culture, AdatPerpatih is interpreted as a symbol of unity and protection for its subject.
According to them’, ‘culturebringoutthegoodandeliminatesthebad’ and these serves as a systematic rule based on community harmony. Culture is not just about marriage, eating, and coronations, but it is a way of life that should be nurtured and protected until today. These cultural beliefs have strongly influence their perception of health and quality of life.
Negeri Sembilan are among the states in the Peninsular Malaysia recorded the highest rates of diabetes prevalence (15.3%) (Minhat et al., 2014). Survey conducted on adult Malay living in the rural community of Negeri Sembilan revealed of poor understanding related to diabetes among the study population. Poor knowledge and understanding was likely related to the small involvement of patients in diabetes education and intervention program; and the fact that diabetic education in the health centres only conducted for those attended the hospital and clinic visits. Ideally, a more comprehensive approach should be conducted targeted especially those with high risk such as family members as part of the primary prevention program.
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The D-SCAT was Developed in Five Stages:
Stage-1: Conceptualization Phase: defining self-care which involved reviewing literature, focus groups with people with type 2 diabetes and healthcare professionals;
and consulting with multidisciplinary experts using consensus method.
Stage-2: Item-development: preliminary scale development began with building on the domain identified in the stage-1 and operationalizing them with survey items within each domain. The process including; generating, refining and testing a large item pool from patients focus group interview and review of the previous instruments.
Stage-3: Determine the Scaling Method of Assessment Instrument: scaling method was determined based on the purpose and the used of the assessment instrument through a review of the previous similar instruments. Thurstone scale – the unidimensional scale was used in this study for the purpose of keeping tract the patient’s self-care behavior.
The draft of self-care assessment instrument was then prepared for a pilot testing. This study used factor analysis psychometric methods to develop the scale and test the preliminary instruments psychometric.
Stage-4: Pretesting of the Draft of Self-Care Assessment Instrument: pretesting of draft instrument was conducted in two steps; step one, perception of the Registered Nurses (RNs) on the importance of item-construct to measure self-care behavior in patients with type-2 diabetes were obtained during the continuous professional development (CPD) workshops at three different contact time. The importance of each item was determined through a percentage of respondent’s response for each item. This is followed by pretesting of the complete drafts of self-care assessment instrument to a selected group of RNs at one private hospital. Instrument revision was done following feedback from the respondents.
Stage-5: Pilot Study and Psychometric Analysis: the draft of Diabetes Self-Care Assessment Tool instrument was implemented to a group of the Registered Nurses (RNs) and their patients with type-2 diabetes who were admitted during the time period of data collection at one of the private hospital in Seremban, Negeri Sembilan.
The reliability of the developed instrument was tested using test-retest reliability method and Cronbach’s alpha for internal consistency method.
This paper describes the conceptualization phase of the development process.
Conceptualization of Self-Care Concept
This study employed hybrid concept analysis method to define a concept of self-care in type 2 diabetes which considers the inclusion of patient’s perspectives that allowed for generation of a more patient-centered definition of the concept. The method consists of three phases of data collection; theory, fieldwork and analysis (Hibbard et al. 2004). The fieldwork process in this study involved patients and Diabetes Nurse Educators through focus group interview. The in-depth interview was conducted with the multidisciplinary experts using the expert consensus.
Development of Diabetes Self Care Assessment Tool (D-SCAT): Conceptualization…
The data from literature review and focus group were analyzed using the Domain Analysis Method. This method help researcher develops the concept emerged from literature, focus group and in-depth interview into taxonomy according to a specific domain. The raw statement emerged from both literature and focus group was presented using a theme table. The domain identified at this stage informed the preliminary development of instrument in stage two. Finally, the list of self-care concepts and its dimension emerged from this process were later presented to the Panel Expert and reached agreement on the domain and constructs to be included in the self-care assessment instrument.
Step-1: Literature Review
Methods: Literature selected for this review involved local and international publications from the disciplines of nursing, psychology and medicines; established diabetes guidelines and nursing theories. The main purpose of literature review was to explore self-care attributes from published literature and established diabetes organization that can assist patients with type-2 diabetes achieved their glycemic control. Two independent searches were performed to identify relevant articles using the open access database PubMed, Ovid Medline, CINAHL and Google Scholar, and limited to the years 2008 to 2014. Keywords were ‘self-care’ AND ‘self-management’
AND ‘type-2 diabetes’ AND ‘self-help’ AND ‘adherence’ AND ‘compliance’ AND
‘engagement’ and ‘intervention’. Articles were limited to ‘adults only’. Of the 201 papers that met inclusion criteria, 110 papers included a specific theoretical perspective that guided or influenced the approach to the self-care assessment in this study.
The most frequent used theoretical frameworks includes; Self-Efficacy Theory (Bandura, 1977), Chronic Care Model (CCM) (Wagner et al. 2001), Patient Activation (Hibbard et al. 2004), Orem Self-Care Theory (Orem et al. 2011) and Middle-Range Theory of Self-Care (Riegel et al. 2011). Since this study is focusing on self-care concepts from the nursing perspectives, Orem’s Self-Care Theory and Middle Range Theory was considered to guide the understanding about self-care in people with type-2 diabetes and provide guidance in the development of self-care assessment instrument in this study.
Findings: The review of literature indicates that patients who are success in their self- care are most likely to have a better glycemic controlled and health outcome (Funnel et al. 2007). This can be determined through their psychosocial, personal and physical attributes (Bandura et al. 2011). In Social Cognitive Theory (SCT) (Bandura, 1989), Bandura suggested that if we want to know about one behavior, it can be done through four factors; goal, outcome expectancies (OE), self-efficacy and socio-structurally variables (Bahn, 2001). This theory helps the researcher to stay focus within a topic under research. OE has three dimensions; physical, social and self-evaluative. In this study, the discussion of self-care concepts and its measures is referring to these three dimensions as suggested by Bandura (2011).
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The main principle underlying self-care include, decision making, reflection and support from the healthcare professionals. However, patients rarely use such methods to make a rational decision and rarely generate and compare options in a systematic way. Reflection is related to the acquisition of knowledge and both are important in self-care. Persons with little or no knowledge of the rationale for personal care may be insufficient (Luszcynska et al. 2005). Unfortunately, there are many people who do self-care activities without knowing the reasons behind it.
To summarize the review of literature, successful self-care must be; 1) reflective and have a high level of internal and external motivations, 2) participate in daily decision of self-care, 3) knowledge and skills in managing the daily fluctuates of blood sugar, 4) engage with daily self-care activities that maintain physical functioning, 5) coping with daily social influence on self-care activities, 6) knowing what and how to make reporting about self-care to healthcare professional (Bandura et al. 2011). These concept dimensions become the basis on the analysis of focus group interview with type-2 diabetes patients.
Step-2: Focus Group Interview
Focus group interview were conducted separately with both; type-2 diabetes patients and followed by healthcare professionals. The purpose of focus group with diabetes patients was to seek a real picture of daily self-care practiced by diabetes patients in their existing environment. While focus group with the Diabetes Nurse Educators (DNE) was undertaken during the development process for refining and verifying the items content that to be included in the draft of self-care assessment tool.
Self-care concepts extracted from the literature was revised and reworded in a layman’s term before used as the basis for patients focus group. Interview protocol was developed based on the key components of self-care that determine for better control of diabetes. Meanwhile, the discussion with Diabetes Nurse Educator, was guided by the interview questions that were prepared based on the themes emerged from patients focus group. The focus was on their challenges in delivery diabetes counseling to patients with type-2 diabetes and their reasons for not adhering to the recommended diabetes regimen.
List of the specific question used in focus group interview are listed in Appendix 1.
CharacteristicofRespondentInvolvedinFocusGroup
There were ten (N=10) participants involved with patients focus group interviews. The focus group was arranged and organized in collaboration with the local community leader. Respondent were invited to attend the focus group interview at the end of one community program. Twenty of them attended the health talk program and ten stayed back for the interview. Average age of participants was 55.0 years; range of 40–70years old with ten males (33.3%) and the rest are female (66.7%). As for the healthcare professional, it involved six diabetes nurse educator at Diabetes Counseling Unit of one tertiary teaching hospital during the attachment of researcher at this unit for two weeks. Characteristic of patients involved in focus group are illustrated on Table 1.
Development of Diabetes Self Care Assessment Tool (D-SCAT): Conceptualization…
Table 6.1 Characteristic Patients with Type-2 Diabetes Involved in Focus Group
Demographic Men(N=4) Women(N=6) Total(N=10)
Marital status (no. of participants)
Single/never married 0 0 0
Married 4 4 8
Separated/Divorced 0 0 0
Widowed 0 2 2
Unreported 0 0 0
Education (no. of participants)
Less than primary education 0 0 0
Lower secondary school 1 2 3
Higher secondary school 1 4 5
Completed college or university college 2 0 2
Unreported 0 0 0
Employment (no. of participants)
Part time/Self-employment 1 0 1
Unemployed/fulltime housewife 0 3 3
Retired 1 1 2
Fulltime working 2 2 4
Unreported 0 0 0
Length of diabetes (no. of participants)
Below one year (newly diagnosed) 1 1 2
1yr – 3yrs 1 1 2
3yrs - 5yrs 1 1 2
5yrs – 7yrs 0 2 2
7yrs – 10 years 1 1 2
10 years and above 0 0 0
Unreported 0 0 0
Type of current treatments (no. of participants)
Oral hypoglycaemic agent 3 3 6
Insulin injection 0 0 0
Combination of both (oral & insulin injection) 1 3 4
Unreported 0 0 0
Focus Group with Type-2 Diabetes Patients
Method: Patients focus group was conducted for further verification on the self-care practice of patients with type-2 diabetes in the existing environment. As for that purpose, the potential domain explored from literature review were re worded in layman’s terms and used as the basis for a discussion on the two components of 1) reflective and have a high level of internal and external motivations, 2) participate in
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daily decision of self-care, 3) knowledge and skills in managing the daily fluctuates of blood sugar, 4) engage with daily self-care activities that maintain physical functioning, 5) coping with daily social influence on self-care activities, 6) knowing what and how to make reporting about self-care to healthcare professional.
Findings: Results of focus group interview has two parts; results of patient’s focus group, results of focus group with healthcare professionals and finally in-depth interview with multidisciplinary experts. There four self-care concepts emerged from this interview informed the development of self-care assessment instruments in the next stage of study; 1) self-care social obligation, culture and personal value;
2) self-care on daily function and reducing risks behavior; 3) self-care on managing the daily fluctuates of blood sugar; 4) self-care reporting to healthcare professionals.
The examples of personal, psychosocial and physical attributes of self-care from the perspective of patients with type-2 diabetes are summarized on Table 2.
Table 6.2 Personal, Psychosocial, and Physical Attributes of Self-Care from the Perspective of Patients with Type-2 Diabetes in the Existing Environment
Patient’sStatement Sub-themes Themes Domain
Nagging from families cause distress and low motivation
Intra personal psychosocial factor
Psychosocial attributes (PS1)
Self-Care of Psychosocial obligations, culture and values
(PS) Nagging from family
members reminding on diet causes emotional distress and feeling low motivation
Environment psychosocial factor
Type of psychosocial attributes of diabetes self-care
Highly respect on social culture often cause dilemma. i.e. rejecting food served consider disrespect of a host.
Desperately exercise when about to attend hospital visits to avoid being
‘punished’ by doctor
Psychosocial Barriers to self- care
Characteristic of psychosocial attributes on diabetes self-care Having difficulties to
prioritize diabetes over daily social activities;
work, family and personal commitment
High social obligation
Level of Psychosocial influence on self-care
Preferred to have own choice of food or diet
‘cheating’ in social gathering
Low social obligation
Development of Diabetes Self Care Assessment Tool (D-SCAT): Conceptualization…
Able to link activities with blood glucose variations only on a short term
Positivity Coping with daily function
Self-Care on Maintaining Daily Functioning
and Prevent Risk
Behavior No problems to avoid
certain foods that may cause blood sugar high Not sure of the benefits blood sugar checks at home
Uncertainty personal experience
Knowledge on risks to daily function
Taking risk without feeling guilty
Having doubt in managing daily illness-related symptoms
Doubt of benefit Benefit of self-care to daily function Having difficulties to
identify the cause for the fluctuates of blood sugar
Information on blood sugar
Knowledge in self- monitoring
Self-Care on Managing Daily
fluctuates of blood sugar level Unable to appropriately
experimenting with diet, exercise
Skills in managing self- care
Skills in self- monitoring
Unable to appropriately reported of experienced hypoglycaemic episodes
Managing unpredictable event
Decision making in self-monitoring
Tend to get information about disease from closest family members, friends and neighbours
Acknowledge of support from social network
Benefits of support
Self-Care on Reporting to healthcare professional Social networks can
enhance learning through real life experience as a role model.
Personal learning from social support Benefits from professional
advices and other social networks
Respects of professional support
Respect of support
Theme-1:Self-careofsocialobligation,cultureandvalues
Social obligation is the first factor being highlighted by participants of the focus groups. Participants in this study have been shown to have elevated level of anxiety, depressions and other emotional reactions. The disease progress and challenges that the person embraces every day with unsuccessful efforts of self-care altered their self- esteem and self-confidence (Rivera-Hernandez, 2014). The adjustment to self-care
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was influenced by other variables such as individual personality, availability of various types of support and their understanding and appraisal of their experience. Promotion of self-management skills could be useful to maximize the person’s functional level and quality of life.
Theme-2:Self-caredailyfunctioningandreducingriskbehavior
Changing and making adjustment on a lifelong habit and choices in daily life are difficult process. Despite the knowledge and skills, confident level of a person is very important to success. This is because a person’s capacity to maintain a complicated regimen of diabetes care has an effect on their self-management behavior.
Theme-3:Self-caremanagingdailyfluctuatesofbloodsugar
Coping with unpredictability was a challenge and often come along with ‘up’ and
‘down’ of the journey which make a planning in everyday lives is more difficult.
Additionally, with uncertainty, participants reported of their awareness about a known future of being diabetes (status and progress of the disease) but the situation/condition of that future is unknown because it is heavily dependent on individual factors and progression of the illness. Uncertainty and unpredictability is very much related with the stages of adaptation for self-care responsibilities. They would increase and decrease when the new stages were reached and managed as they moved through the fear of the unknown (Palinkas et al. 2011). The early stage of diagnosis expressed as being the most difficult in trying to validate the transitions from fluctuating conditions of illness to the phase of wellness and hoping for the symptoms would just go away whilst blood sugar is well controlled. These experiences presented the challenge of learning to accept, adjust and cope with the illness (Rucket et al. 2012).
Theme-4:Self-carereportingtohealthcareprofessionals
Participants often talk about having difficulties in getting to understand the professional advice in such a limited time during the hospital visits. The way out is sharing their problem with friends, or family members who is having a similar disease condition. The role of family members in influencing self-care is undeniable.
Respondents in this study reported on giving the priority to the wellbeing and stability of the family member rather than their own needs in self-managing their illness. This practice is undeniable because it is part of their culture, however it will somehow indirectly affect the self-management behavior of a person. This problem needs further exploration, how the family contextual issues make the care of type 2 diabetes unique and challenging.
Point of Departure: Focus group with type 2 diabetes patients was undertaken to explore further on their life journey after being diagnosed as diabetes in the light of personal, psychosocial and physical attributes of self-care. Participants in this study raised concern about being challenged in daily life such as neglected partners and taking back seats, not knowing them or their condition.
Development of Diabetes Self Care Assessment Tool (D-SCAT): Conceptualization…
Due to these complexity of self-care, where patients need to adapt and make changes in their daily lifestyles, continuous learning is required. Learning to learn is therefore a crucial skill alongside accepting responsibility for self-care and quality of life. Reflection is therefore, is part of this progression process, and the development of reflective skills will help patients with the learning and acceptance of self-care responsibilities (Dye, 2011). Reflecting on self-care achievements can empower patients to make intelligent decisions about how to move forward with the needs of their self-care skills. However, the success requires continuous assessment, revision, and improvement in self-care performance. Bandura (1989) recommended for assessment of individual’s capability should be measured across various domains of activity with different degrees of task difficulty and under different situational circumstances. He described self-care behavior as a results of cognitive processes that a person employ when acquiring knowledge. The development of personal plan for people with diabetes will enable them to interact more significantly with health professionals and set goals to success in self-care.
This can establish their independence, self-esteem, and strategy. It is observed that most support strategies in this country were developed based on a professional’s care plan and pathway which were written by professionals with limited are shared with the patients. This study proposes for real consideration should be given to a self-care plan that mostly promotes patient’s participation with professional inputs to enhance nurse-patient’s relationships. This plan would also be useful to families in setting out the boundaries and support that they can provide to the person with diabetes.
Four self-care domain emerged from this interview; 1) self-care social obligation, culture and personal value; 2) self-care on daily function and reducing risks behavior;
3) self-care on managing the daily fluctuates of blood sugar; 4) self-care reporting to healthcare professionals. The descriptions of each domain is described on Table 4.4.
These 4-domains of self-care informed the development of behavior items for each domain that needed by the patients to perform on everyday basis. Therefore, interview with the healthcare professionals was about; whatself-carebehaviorareneededbythe patientstobettermanagetheirillness?
Focus Group Interview with Diabetes Nurse Educators
Method: Focus group discussion with Diabetes Nurse Educators was undertaken at Diabetes Counseling Unit at one tertiary teaching hospital. It was to explore further from the nursing professional’s point of view on the 4-themes emerged from the patient’s focus group. Example of question asked: What usually the reason given by patients for not keeping up with the recommended self-care?
Findings: Patient’s reasons for not keeping up with the recommended self-care can be divided into 3-parts; 1) reasons for having difficulties in performing a role as self- manager; 2) reasons for having a gap in communication with healthcare professionals;
3) reasons for the needs of support in the process of accepting and adapting their self- manager’s role.