Self-care has been defined quite simply as "the set of activities in which one engages throughout life on a daily basis."1,p.68 Examining this 'set of activities' more closely, we see that a number of these activities encompass "a person's attempts to promote optimal health, prevent illness, detect symptoms at an early date, and manage chronic illness."2,p.2 Hence, engaging in self-care activities may result in a range of different experiences depending on the set of activities that are performed and the reasons for their undertaking. "Self-care theory operates on the assumption that each human has a need to care for himself or herself."3,p.385 However, the individual's recognition and response to this need is influenced by many different factors including the individual's perception of their health status, their developmental stage, self-concept, perceived competence and control over their health, as well as the self-care behaviour itself.1;4 Furthermore, self-care is context dependent, and socio-economic, environmental and cultural factors are also predisposing factors that affect the individual's engagement in self-care activities and their experience of this engagement.
Self-care is seen to comprise two major components, therapeutic care (medication administration; self monitoring and self treatment) and personal care (activities of daily living - dressing, bathing, eating, etc.). With the increase in the numbers of individuals with chronic and longstanding conditions,5 much of the interest in self-care has focused on the performance of therapeutic self-care.6 However, it is also important to understand the challenges that personal care may pose for individuals with chronic conditions or impairments. Self-care may be performed for a variety of reasons including health promotion, prevention, restoration of health after illness or injury, detection and treatment of illness, management of chronic conditions or impairments, and in the case of personal care - the preservation of self. Orem's theory of self-care specifically addresses the purpose for performing self-care and provides a framework with which to explore the research in this area.
Orem's theory of self-care
Orem's theory of self-care posits that self-care behaviours are learned behaviours that purposely regulate human structural integrity, functioning, and human development (Orem 1995).7 Orem defines self-care as:
Self-care is the continuous performance of sets of related actions by older children and adults that supply the materials and bring about the conditions that are regulatory of their own functioning and development. Such actions when performed by responsible adults for socially dependent family members are named dependent-care. Self care is human behaviour that is self-directed and self-permitted. It is conduct of deliberate action or ego-processed behaviour.8,p.212
The essential contribution of the theory is the emphasis on the regulatory function of self-care.8 Self-care is learned behaviour deliberately performed in conformity with the regulatory requirements of the individual, for example, developmental stage, state of health or environmental factors.9
The theory of self-care has 3 conceptual elements:10
- Self-care - engaging in action to regulate functioning and development.
- Self-care agency - operational powers or capabilities specific to performing actions of self-care.
- Self-care requisites - requirements that guide the selection, choice, and conduct of regulatory actions in the care of self.
"The theory of self-care expresses the purpose of taking care of self, referred to as the self-care requisites; the how of taking care of self, referred to as the self-care agency; and the outcome of these known as the self-care practices or self-care system."11,p.104 The concept of agent is central to Orem's theory, and refers to the ability to meet self-care requisites, such as acquiring knowledge, making decisions and taking action for change.7
Orem describes three types of self-care requisites:7
- Universal self-care requisites - activities required by all people during all stages of life to maintain health, promote health and prevent disease including: air, water, food, elimination, rest and activity, solitude and social interaction, prevention of harm, and normalcy.
- Developmental self-care requisites - requirements related to developmental processes, acquired conditions such as pregnancy, or associated with an event such as the death of a family member. This includes maintaining conditions that support and promote the process of human development and preventing conditions that would negatively affect the developmental process.
- Health deviation self-care requisites - changes in self-care activities to regulate the effects of deviation from normal structure or function. This includes: seeking medical assistance; attending to the effects of the illness or condition; carrying out recommended therapeutic regimes; adapting self-concept to accept oneself as being in a particular state of health; adjusting to life with a particular condition or deviation from normal structure and function.
Orem's theory does have some biases. Her theory is confined mainly to Western professional medical practices without consideration of the contribution of complementary health practices or different cultural perspectives on health and health deviation. It is also not a holistic theory. However, it is valuable as a theoretical model with which to analyze the research literature on self-care because the three categories relating to the purpose of performing self-care (universal, developmental, and health deviation) provide a framework to analyze the research literature on this topic.
When dealing particularly with the health deviation requisite, research tends to focus either on one disease/impairment grouping or on one developmental grouping. Although the actual self-care behaviours performed when taking care of asthma differ from those activities necessary to care for arthritis, for example, the purpose, process and experience of engaging in these self-care activities may have common threads. Thus in performing this systematic review we sought to integrate individuals' narratives about their experiences of engaging in self-care across disease/impairment groupings. Further to this, we explored the range of experiences of self-care across developmental groupings.
A strong interdisciplinary team has been assembled as a review panel, bringing together the necessary theoretical, methodological, and clinical expertise to complete this review. We have combined extensive experience from nursing (MBH, ML, CG), rehabilitation sciences (RL) and qualitative research (ML). Panel members are also active in health services and epidemiology (MBH, IDG), policy (ML, IDG) and evaluation research (RL). As part of our investigator group library scientist PO specializes in health care and systematic review methodologies.
To integrate and summarize the experience of engaging in self-care activities as reported by individuals and /or their families. The question that guided this review was:
What is the experience of engaging in, or assisting a family member to engage in, self-care activities as reported by individuals and /or their families?
Criteria for considering studies for this review
Types of studies
In this review we considered qualitative studies that illustrated the experience of individuals (and/or families) who actively engaged in performing self-care, or were assisted with their self-care activities or provided support for self-care. These studies included, but were not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
Types of participants
In this review we considered studies that explored the experience of individuals of any age and /or their families, who actively engaged in self-care behaviours, were assisted with self-care behaviours or supported self-care behaviours.
Types of intervention
Studies were considered if the focus of the study was a description of the individual's experience of self-care in response to a particular intervention. Studies were also included that described the individual's experience of self-care where no intervention was introduced.
Types of outcome measures
Outcomes of interest from qualitative studies included individual experiences of self-care through self-report. Reports from family members who assisted or provided support for self-care were included.
The search strategy was performed with assistance from a library scientist (PO) with extensive experience in generating search strategies for systematic reviews. The search strategy was designed to locate both published and unpublished studies (e.g., theses) (Appendix I), and a three-step search strategy was used. An initial limited search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms was then undertaken across all included databases. Thirdly, the reference lists of all identified reports and articles were searched for additional studies. The databases searched included: CINAHL; Medline; EMBASE; PsycINFO; AMED; Cochrane Library; Scirus; and Mednar.
Electronic database searching had an international scope and retrieved articles were limited to those in English. The search for unpublished studies included: Dissertation Abstracts; Sociological Abstracts; and Conference Proceedings. Electronic searching results in lists of articles with details of title, author, source, and sometimes abstract. All identified articles were assessed on the basis of the abstract (or title if abstract not available), and full reports were retrieved for all studies that met the inclusion criteria for the review. When in doubt, the full article was retrieved.
Initial keywords included: Self-care; self-care skills; self administration; self medication; self efficacy; personal care; lay care; self maintenance; self regulation; self treatment; delivery of health programs; health prevention; health behaviour.
Use of the term 'self-care' and associated keywords generates a large return of citations. To address this issue, a variety of search strategies were generated that targeted various aspects of the self-care concept. For example: search strategies were generated to locate articles that included terms such as chronic illness, disability and impairment.
Methods of the review
Analysis of the review
To analyze the findings using Orem's theory, each study was classified according to one of the three self-care requisites: universal, developmental or health deviation. Self-care requisites indicate the purpose of taking care of self, hence studies were assigned according to their main focus or purpose. For example, studies focused on a particular condition such as spina bifida or diabetes mellitus were classified as 'health deviation' regardless of the age of the participants. Studies focused on health maintenance or health promotion, were classified as either 'universal' or 'developmental' based on the purpose of the study and developmental grouping of the participants. In instances where a particular health deviation (such as asthma) was studied within the context of a developmental grouping (such as children), these studies were classified as both 'developmental' and 'health deviation'. For example, Pradel12 compared self-care behaviours of seven year olds to 12 year olds with asthma. Moore and Beckwitt13 analyzed their data by Orem's self-care theory, and their results were therefore assigned all three self-care requisites. Studies were assigned these categories by the lead author and then checked for appropriateness in consultation with the review panel.
In this review we integrated several contexts such as age, type of impairment, and culture. To capture these important aspects when recording the findings, each finding incorporated these contextual details. For example, a finding would be coded as 'adults with schizophrenia and diabetes', or 'Australian adults with diabetes'. Likewise, each category or synthesized finding also incorporated the context according to Orem's self-care requisites. An example of a category generated for universal requisites would be: 'when addressing universal requisites, self-care requires an awareness of self and understanding of one's body'. The inclusion of these details in the findings, categories and synthesized findings greatly facilitated the analysis of the data according to each requisite and the final integration across the three requisites.
In order to examine the influence of developmental grouping on the experience of self-care, the data were also analyzed across developmental groups (including children, adolescents, adults and elders) for the most common health deviation, diabetes mellitus (14 studies).
Assessment of methodological quality
Methodological quality of the studies was assessed using the Joanna Briggs Institute (JBI) Qualitative Assessment and Review Instrument (QARI) Critical Appraisal Checklist for Interpretive & Critical Research (Appendix II). Two appraisers independently reviewed each study. There are ten questions on this checklist and a cut-off point of 6/10 was set to include studies into this review. This level was chosen because it was considered high enough to establish a level of methodological rigor, but still provide a representative set of studies to analyze.
Qualitative data were extracted from included studies using an adaptation of the Data Extraction Tool for Qualitative Evidence from the JBI-QARI. (Appendices III and IV).
In this review we integrated a variety of contexts, for example, different developmental stages, diseases/impairments and cultures. Consequently, findings extracted from the studies had to contain these details and the extraction form was adapted accordingly. For example, 'elderly Mexican men with diabetes'.
Qualitative research findings were pooled using the JBI-QARI. This involved the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings (Level 1 findings) rated according to their credibility and appropriateness, and categorizing these findings on the basis of similarity in meaning (Categories or level 2 findings). These categories were then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings (synthesized findings or level 3 findings) that can be used as a basis for evidence-based practice.
Description of the studies
The search strategy located 9,560 citations, of which 260 were obtained for full read to assess the articles (Appendix V). Ninety-six studies were off topic and discarded and 151 studies were excluded for not meeting the inclusion criteria. Four studies did not meet the methodological criteria, leaving a set of 50 studies to comprise the final set included in the review (Appendices VI and VII).
The citations and articles were reviewed by the lead author. In collaboration with the review panel, selected studies were checked to verify those accepted into the review and those excluded. Discussion with the review panel reinforced the boundaries of the review and maintained the focus of the analysis.
Fifty studies were included in this review (Appendix VIII). Studies ranged in publication date from 1993-2009. Ten countries (determined by the location of the lead author) were represented: USA (26); Australia (7); United Kingdom (5); Canada (3); Sweden (3); Finland (2); Brazil (1); Denmark (1); Taiwan (1); Thailand (1). Nineteen different cultures were represented, and 27 different conditions were addressed, the most common being diabetes mellitus (14 studies) and asthma (7 studies). Age of participants ranged from 3 - 92 years old, and sample sizes ranged from 4 - 258. Total number of participants was 1,478.
The methodological quality was assessed with a cut-off point of 6/10. Four studies scored 10, ten studies scored 9, 16 studies scored 8, 11 studies scored 7 and nine studies scored 6. The most common areas where studies lost points was neglecting to provide a statement locating the researcher culturally or theoretically, and not addressing the influence of the researcher on the research and vice-versa. Fourteen studies did not mention having received ethical approval.
Analysis according to Orem's theory of self-care
JBI defines a finding as: "A conclusion reached by the researcher(s) and often presented as themes or metaphors."14,p.35 Meta-synthesis of studies included in this review generated 326 findings which were aggregated into 29 categories and 9 synthesized findings. Four additional meta-synthesized findings were generated when integrating the three requisites together.
Universal self-care requisites
Activities required by all people during all stages of life to main health and life (basic human needs)(Figure 1). This analysis was based on six studies13;15-19 which generated 28 findings; five categories and two synthesized findings (Appendix IX). Two synthesized findings emerged:
- Supporting the self
- Balancing inner and outer worlds
Supporting the self
A precondition of meeting this requisite and engaging in self-care was gaining an awareness of self. Studies reported how their participants 'developed a sense-of-self' or had 'an understanding of the body' prior to taking action and satisfying universal needs. For example, for Native women, knowing themselves and their own bodies was a precondition for knowing when something was wrong.
And that's part of health, being healthy. Is knowing your own body. Knowing yourself well enough to know when something's out, when something's wrong, something's out of balance. Something's not right. So really being in touch with yourself and with your body. And with your mind and with your spirit world.15,p.421
For these women, understanding the body influenced their efforts toward taking care of self. "I think Native women are more in touch with their own souls. Understanding their own bodies. Healing themselves."15,p.422
Likewise, for homeless youth, the first step to self-care was becoming aware of themselves within the circumstances of family life which they had left, and the street life which they had entered. In the grounded theory study on homeless youth, some of the participants came from abusive home-lives and grappled with developing a sense of self. One youth stated "I made my decision not to be around them [family]. I had to learn to build my self-confidence."18,p.237 Once on the street, developing self-awareness was enhanced by gaining self-respect. "I'm not scared of no one [sic] … To an extent I'm very proud of myself because I've come a long way. I need to learn to respect myself and care for myself."18,p.238 Youth reported that learning to be self-reliant on the street helped them to engage in self-care. "I'm taking care of myself now better than I ever have in my life."18,p.238
Taking responsibility for meeting basic needs involved initiating and sustaining the self-care activities. For homeless youth, part of their self-care involved planning for self-protection. "I've got my big huge dog and I know how to fight and I carry weapons [knife]."18,p.239 In the case of Brazilian garbage workers,17 many of the workers were aware of the need to protect their hands when touching garbage, but very few actually wore gloves. Lack of access to gloves was the reason most frequently cited, but for others, not wearing gloves was a preference. When questioned about this self-care behaviour however, "arguments emerged in favor of using gloves, such as avoiding the accumulation of dirt under one's nails and protecting oneself from 'little animals that appear in the garbage, mainly in summer.'"17,p.733 In a study of children with cancer, both the parents and children did all they could to protect against risks to health or safety. "Mark was burned by the IV system, and after that happened, I would only let certain people [care for him]."13,p.8
Balancing inner and outer worlds
When meeting universal requisites, self-care activities also entailed balancing both the inner world of mind, body and emotions, and time spent sharing oneself with others. For homeless youth, self-care was facilitated by interacting with other people. "I'm constantly around people so it's not so lonely."18,p.239 For Native women being healthy and caring for self meant feeling the balance between the physical, mental and spiritual realms of their lives. "In my opinion health is like a three-legged stool. It's body, mind, and spirit. If one is out of balance or not up to par, then the rest follows. And an unhealthy spirit and mind can affect the body."15,p.420
Children with cancer also desired to maintain a balance between solitude and social interaction while in hospital. One child described being frustrated when friends avoided her because of her cancer: "People would say to me later, 'Well, I didn't call or I didn't write because I didn't know what to say.' Well, get over it. That's kind of how I feel."13,p.8 A study of six-year-old children indicated that these children also acknowledged the importance of sharing time with others. "When asked 'What sort of things do you do to look after yourself at school?' Felicity and Kylie designated 'playing around with my friends' to be a form of self-care because it kept them feeling 'happy.' When prompted to describe 'How is being happy self-care?' Kylie stated, 'Because when you're sad, you feel sick.'"16,p.73
Developmental self-care requisites
Requirements related to maintaining conditions that support and promote the process of human development and preventing conditions that would negatively affect the developmental process(Figures 2-4). This analysis was based on 16 studies,12;13;16;20-32 which generated 100 findings; 12 categories and four synthesized findings (Appendix X). Four synthesized findings emerged:
- Influence of outer and inner worlds
- Continued engagement in self-care
- Positive experience of self-care
- Abandoning self-care activities
Influence of outer and inner worlds
When meeting developmental self-care requisites several factors influenced the individuals' engagement in self-care. For example, one study reported that due to the influence of mother's time on daily routines, children with disabilities either lost or retained independent self-care activities. "When confronted by time pressure, Karen's mother adapted their daily routine in a way that retained the element of self-feeding independence. Karen ate her sandwich in the car 4 days a week while her mother traveled to pick up an older sibling from school."27,p.256 Mothers' anticipation of the future could influence the acquisition of self-care behaviours. Some mothers looked ahead and perceived self-care goals and values for children with disabilities in terms of the children's future, such as preschool that requires the child be potty trained. "This mother identified Allison's self-dressing as a goal, stating, 'Maybe if she can dress herself and take her pants off, it would help potty train her.'"27,p.256 Mothers' values could also determine which self-care skills were mastered. Some mothers placed a higher value on skills (such as eating) which have the potential for public scrutiny. "Dressing is not a subject that you talk to other moms about. It's a privacy issue, I guess. Even in just talking to my family.…No one says, 'Is he dressing?'"27,p.255
Not all mothers directed their children's acquisition of self-care behaviours. When introducing new self-care activities, one mother described allowing her child with disabilities to take the lead. "When she wants to do something, she tries. She just tries, and that's how I know she's ready. I let her tell me."27,p.256
For children with asthma the influence of adults was not always positive, as one child described struggling with having someone else decide the legitimacy of his/her asthma symptoms. "In 6th grade I had a teacher who questioned me like 'you're faking it.'"26,p.602 A study that explored self-care activities in children with diabetes noted that mothers' expectations also influenced the acquisition of self-care behaviours. Mothers of girls expected them to master the skill whereas mothers of boys were more protective of their sons and performed the task for them.31
Three studies25;26;30 noted that for children and adolescents, the availability of adult support that was present but not overwhelming, contributed to their ability to adopt self-care activities. Children with asthma enjoyed the support that allowed them the responsibility to perform the necessary self-care behaviours. "Usually my mom doesn't get involved with it unless it's really serious, like when I have to go to the hospital. Usually she lets me handle it because she knows I know how to."26,p.602 For some adolescents with spina bifida, engaging in self-care activities was helped by sharing decision making with parents. "Sometimes [my parents' advice is] dumb, but I listen to it anyway. And sometimes it's very good advice and all. I'll take it and I'll follow it."30,p.31
In a study on middle aged Thai women, the researcher noted that when the demands of the outer world decreased and they spent less time raising children, women felt justified in focusing on their own health and engaging in self-care.
My children are old enough. Now they go to school. I have more free time than I had before so I turn to thinking about myself-my health, my work, my future life. I recognize that my work and my future life will be good if I have good health. I won't be a burden to others if I start taking care of myself now. I used to care for others a lot; now it's time for me to think about myself.20,p.899
Continued engagement on self-care
The study that interviewed mothers of children with disabilities, described how the mothers fine-tuned daily routines and expectations in accordance with their perceptions of their child's abilities at that moment. Behaviours and self-care skill acquisitions were not seen as static. "Does he feed himself? Yes, he does. But sometimes he does, and sometimes he doesn't. I feel I want to be realistic about the things he does. It's not just black and white."27,p.256
A study of adolescents with diabetes who routinely engaged in self-care behaviours reported that these adolescents had mixed views on this experience. Some adolescents perceived the disadvantages of performing self-care activities as being the added burden of responsibility. "Just a lot of responsibility because if something bad happens … that was my fault."25,p.170 However, others saw no disadvantage, "I can do it all. I don't have to, but I do … I'm responsible."25,p.170 In general, most of the adolescent participants perceived benefits of engaging in diabetes self-care in terms of having the knowledge of or confidence in their abilities. "Just feeling that you can take care of it yourself."25,p.169
The study on middle aged Thai women described how for some of these women, continued engagement in self-care meant overcoming daily obstacles and responsibilities.
I go to work by bus in the early morning. I go back home in the afternoon to take care of my paralyzed husband. I cook for him and my children. After I wash dishes, I take my husband to bed. I spend a few minutes after I'm free from my housework doing Buddhist meditation or sometimes I listen to Buddha's teaching. In this way, I feel good in the morning and ready to go to work.20,p.902
Positive experiences of self-care
Several studies20;28;29;31 discussed the reinforcement of positive experiences on the performance of self-care activities. For example, one study mentioned that children most frequently identified 'feeling good' as their motivation to adhere to diabetes self-care behaviours. Avoidance of punishment or being concerned about the future were not strong motivators.31 For some adolescents with asthma engaging in self-care was facilitated through positive experiences. "I think what benefited me the most is working out … working out benefits my body, keeps me physically fit … I don't breathe hard … it puts my asthma away [in control and] I don't kinda come dependent on it-the nebulizer (13-yr male)."28,p.76
For adults and elders, positive attitudes to aging, and positive reinforcement of self-care behaviours assisted them to take charge and be responsible for their own self-care. This explanation from one middle aged Thai women exemplifies the "joy of self-care":
I think self-care is more than self-centered things. I do it because of my desire. I do it for myself. I do it for my own enjoyment. I do it for my personal growth. There is no one forcing me to do it; I swear. It's my trial to test the effectiveness of self-care. If I feel good, I will do it forever.20,p.900
A study on Finnish primary care patients noted that the participants' self-care practices were reinforced by positive experiences of social support and feelings of belonging. Feelings of togetherness with family, friends and colleagues were considered important. Giving social support as well as receiving it, was reported as a means of health maintenance and self-care. "We had a picnic together, the whole family. It is the best therapy for a person."29,p.736
Abandoning self-care activities
A study on primary health care patients remarked that individuals abandoned self-care when they felt helpless in the face of aging or when overwhelmed by symptoms. "Every day I feel helpless. I am only 53 years of age and I feel that there are still lots of things that would be nice to do, but I have to leave a lot undone. I simply cannot do any more."29,p.738
Health deviation self-care requisites
Changes in self-care activities to regulate the effects of deviation from normal structure or function(Figures 5-7). This analysis was based on 42 studies12;13;15;23-28;30-62 which generated 198 findings; 12 categories and three synthesized findings (Appendix XI). Three synthesized findings emerged:
- Interacting with health care professionals
- Accepting the disability or disease as part of life
- Embarking on self-care and overcoming challenges
Interacting with health care professionals
Health care professionals empowered individuals by acknowledging their knowledge, and recognizing their efforts when engaging in self-care behaviours. Likewise, health care professionals could also disempower individuals by doubting their knowledge and questioning the reliability of their self-care behaviours. For example, one study on adults and elders reported several instances in which the participants were disappointed that their experiences were discounted and that nurses appeared to rely only on physical measurements such as HbA1c or INR to determine the effectiveness of the self-care behaviours. As one participant commented:
I tell her (diabetes educator) about how tired I am, how I just don't have the energy I used to and she says that I am obviously doing well because my A1c (glycosylated haemoglobin) is so good. I am arguing that the new insulin is not for me because I feel terrible and she is saying it's fine because the numbers say it is.53,p.577
Health care professionals could also disempower informal caregivers. A study on informal caregivers of family members with mental illness indicated that sometimes health care professionals ignored or devalued their contributions about their family member. This was despite the intimate involvement and length of time the family caregivers spent providing the support needed by their relatives to develop self-care practices.
My main concern for carers is getting a response quicker, for people to listen to you … you know the person better than anybody else. They think that because they are the professional that they can judge better… but you are seeing that everyday. I think as a carer you know what they are like when they are normal and you know what they are like when they are ill.58,p.92
A couple of studies15;37 discussed how individuals wanted to be involved in making choices about their care. A study on adults and elders with chronic obstructive pulmonary disease (COPD) described how most of their participants preferred to take on the responsibility of adjusting their medications as their condition fluctuated. These participants were comfortable working in collaboration with their doctors in managing their illness. "When I saw Dr. X he gave me a range [referring to medication dosage] that I could fiddle [with] myself and then after that I was more comfortable.. doing that."37,p.173 Another study on Native women described their participants' desire to choose their own treatment modalities (conventional or alternate), or to combine traditional and conventional approaches when engaging in self-care. "I was in nursing school so I have a background there. I've always been interested in medicines and now holistic healing as well. Mostly herbal … aroma therapies also work."15,p.417
Accepting the disability or disease as part of life
In their study on individuals with chronic illness, Baker and Stern described what they termed 'finding meaning in the disease' as follows: "Informants who became self-care agents no longer sought a cure, scapegoated, or gave up, but perceived chronicity positively. They found symbolic meaning in chronic illness by assenting to it on the one hand, and by reframing its meaning in their life on the other hand."34,p.30 Hence, individuals who were able to reconstruct the implications of their illness or disability in a positive way saw themselves as the focus of their lives, not the disease/disability. This enabled them to engage in self-care. Finding this symbolic meaning provided hope for the future, strengthened coping mechanisms, and enabled a positive sense-of-self. This allowed the individual to acknowledge the vulnerability that accompanied the disease/disability but still maintain a balance in their lives in which they were the focus, not the condition.
One woman with diabetes had become effective in managing the symptoms of the illness after years of rejecting the prescribed treatment regimen and poor blood-sugar control. She described diabetes as something that she would always have and said, "It's not too bad really. I'm used to it now and I take it day by day. I have a good life."34,p.30
Adults with chronic illness who were not able to find symbolic meaning in their illness were not able to embrace self-care behaviours. Instead they searched for cures, blamed doctors for not fixing them or gave up on life. "You have to trust your doctors, but don't trust them to the point that you think they're going to fix you… prepare for the worst."34,p.29
Individuals who were able to create a positive perspective of their illness or disability were also able to accept emotions as an important component of self-care. These individuals recognized the need to acknowledge and express their feelings of hope and despair.
For some individuals spirituality and faith were integral aspects of their self-care that helped them find meaning beyond their illness/disability. For example, a study on African-American women with HIV reported that spirituality and religious practices were significant means of self-care that provided healing and strength to get through difficult times, and acceptance of themselves and their lives with HIV/AIDS. "Well, my mother always told me verses to read if I'm worried and depressed, and she played a big part in my Bible life, because I used to see her sit and read and read. And she told me, there's nothing God can't do for you … and we went to church together and prayed."57,p.53
Meaning could also be found in mothering. For these African-American women with HIV, mothering was inextricably linked to self-care and was a motivation for staying healthy and for continuing to live. All of the women talked about the importance of taking care of themselves so that they might live to see their children graduate from high school.57
My baby is on her way to being undetectable (viral load) now. It was like God was grinning down on me. So that inspired me to keep giving her meds, and I thought okay, if she is almost testing undetectable, then her mom needs to be the same way. You know, that made me want to take care of myself a little bit more.57,p.54
In another study on low-income white women with HIV, investing meaning in self-care meant searching for what was important in life, and involved creative strategies for living while facing death. "I talked to my therapist about people she's been with when they died. That has helped me and talking to my nurse practitioner … having a good relationship with her has helped because I know when my time comes she'll guide me through it."51,p.67
Embarking on self-care and overcoming challenges
For some individuals with health deviations, acquiring knowledge about their condition and how to perform self-care was an important first step when embarking on self-care behaviours. For example, in a study on adolescents with asthma, participants noted that their asthma symptom recognition and knowledge acquisition was enhanced by exposure to multiple educators. "I went to asthma camp…and took some other courses with swimming…so I kinda know a lot about it. (13 yr male)"28,p.76 Another adolescent stated: "I learned the most about asthma from my mom. She's knows everything - everything. My sister has it worse than I do (17-yr female)."28,p.77
Another study described how for elderly women with osteoarthritis, embarking on self-care meant holding on to their sense of wellbeing by seeking to know about arthritis and how to perform self-care and be self-caring. "So I think that I have had to learn to be self-confident and learned that I have to rely on myself."33,p.37
A study on Australian adults with diabetes portrayed how these participants sought discipline and disease control, and focused primarily on acquiring knowledge and looked for the best health professional to provide that information. "I found that I came here straight away and got under the DNE's [diabetes nurse educator] umbrella like and got education about how to read labels and that was more beneficial than any doctor at the time."43,p.5
Discussing the challenges for children with health deviations, a couple of studies23;31 mentioned how children did not want to be set apart from their peers and have to interrupt activities to perform self-care behaviours. One mother commented on her son:
So he knows what he's supposed to do, but sometimes when you're with other kids, it's like, 'I don't want to say anything. I don't want to have to leave just because I have to eat.' I think when he's with other kids it's like, 'Why do I have to be different from them? Why can't I just go as long as they do, and not eat lunch?'31,p.368
Some children with diabetes were also embarrassed by the diabetes care routine - such as wearing an ID bracelet or carrying supplies,31 and a few adolescents with asthma also reported being embarrassed at having to take medication and mentioned this as a reason for not adhering to their self-care regime.23
Studies discussed the numerous challenges and constraints adults and elders encountered that hampered their self-care behaviours when meeting health deviation requisites. These included financial limitations; workplace constraints; co-morbid conditions; professionals who were disempowering; costs and time wasted to attend appointments; habitual lifestyle patterns; stigma of their condition; and a sense of helplessness. Individuals needed to mobilize many resources to overcome these challenges. For example, a study on Latinos with diabetes commented that many participants reported financial constraints that impeded their diabetes self-care. ''I have [been] going for over a week without medications because of lack of money…I am hoping that the diabetes will stay well.''35,p.206
In another study on adults with disabilities, participants reported the importance of maintaining a belief in one's capacity to master challenges caused by the disability; to be independent and fight feelings of helplessness.
When you're going through a tough period, you have to fight it. Reassure yourself that you can make it and it'll be better. You should never give up, but force yourself to do the necessary things… Once you're out of bed and started doing something it usually gets better. (Female, 64 years, pulmonary disease).55,p.357
The detailed relationships between study findings, categories and synthesized findings for universal, developmental and health deviation requisites are listed in Appendices XII-XIV.
Meta-synthesis across Orem's self-care requisites
To synthesize the evidence across all three self-care requisites, the synthesized findings were aggregated on the basis of similarity in meaning to generate meta-synthesized findings (level 4 findings). Four meta-synthesized findings emerged (Figures 8-11):
- Caring for self
- Mastery and balance
- Sustaining self-care
- Disengagement from self-care
Caring for self
Engaging in self-care was facilitated by a strong, positive awareness of self, accepting the disease or disability as part of life, and acknowledging emotional, mental, physical and spiritual needs, and taking responsibility for attending to those needs.
Mastery and balance
Self-care entailed mastering specific behaviours, and balancing the inner world of mind, body and emotions, with the external influences of parenting, and support from family, health care professionals and others.
Perceiving oneself as being in control, acquiring knowledge and receiving support from others were important factors that facilitated the sustaining of self-care behaviours and assisted with overcoming challenges.
Disengagement from self-care
Individuals may abandon self-care when feeling helpless in the face of overwhelming symptoms and disability. Disengagement from self-care may not be a permanent process but could be temporary as individuals adapt to new experiences of disability or increasing levels of impairment.
Analysis across developmental groupings for diabetes mellitus
The most frequently reported health deviation was diabetes mellitus (DM) (14 studies24;25;31;32;34;35;41-44;46;47;53;62). This analysis was performed to gain a developmental perspective on self-care by purposively selecting DM as a rich source of data through which to consider this perspective. Developmental categories were defined by the study authors. In the 50 studies, the following age categories included: Children 3-14 years; adolescents 11-21 years; adults 19-65 years and elders 65-92 years. It is noted that there is an overlap in these categories. At each developmental stage, different aspects of self-care emerged and were reflected by four themes:
- Identifying symptoms and learning self-care routines
- Mastering self-care behaviours
- Integrating self-care: busy lifestyles and other challenges
- Self-care as a life goal
Identifying symptoms and learning self-care routines
One of the first motivating factors for children learning DM self-care behaviours was to decrease the pain involved by the procedure. In a study of young children with diabetes, a mother reports: "She was only 5 and we started out doing them for her. But then she did it soon after she was diagnosed. She felt like if she did it herself, it wouldn't hurt as much. Her fingers were really sore at first."31,p.366 The child referred to in this study may sound young to engage in self-care behaviours of this complexity, but Alderson and colleagues' study on children ages 3-12 years with DM found that there was no relationship between age and ability to use needles: "The children's ability and willingness to use needles were not age related. Jonny and Nicola were 4 years old when they did their own blood tests and injections. James, diagnosed when aged 7, could do his injections before his mother felt able to do them."32,p.301
Children were also motivated to engage in self-care for DM to be independent so that they could visit friends and spend time away from home and their parents. According to one study that compared the experience of girls and boys, mothers of most of the girls reported that their daughters easily learned the self-care behaviours in very limited time.31 However, many of the boys were not motivated to learn. This may have been due to the influence of mothers. "The mothers of the girls had higher expectations for self-care and were more willing to allow their daughters to assume complete responsibility for diabetes-related tasks than were the mothers of boys."31,p.366
Children learned to identify and treat episodes of hypoglycemia although these situations were more complicated to treat in the school environment. One mother commented: "It's hard at school because he has to go to the office, test himself, get the juice box, see if you feel better. [He thinks:] 'Should I have a starch, too, or is it close to lunch?' It's easier at home."31,p.367
Children reported learning about how to engage in self-care for DM from many sources. Some parents described teaching on an 'as we go' basis rather than through pre-planned sessions. "We teach her as we go-we don't sit down and read books about diabetes or anything like that. Learning has been gradual. She has learned from her experiences."31,p.366 Children with DM felt that having a friend or celebrity that had diabetes, made them feel better about themselves particularly from others with the condition who became role models for them.31
The developmental stage of the child was seen to influence the child's vigilance with DM self-care practices. Children were not consistently attentive and vigilant to diabetic self-care, possible due to an inability to reason. One mother described trying to reason with her son. "What happens if you're playing basketball and your brother is not there? You take your chain off and everyone else leaves? People wouldn't know how to take care of you."31,p.367 Despite this compelling argument, he refused to wear his ID necklace while playing basketball.
Mastering self-care behaviours
In a study on adolescents with DM, mastery of their self-care regimens gave participants the independence and freedom they desired. For example, they perceived the benefits of self-care in terms of having confidence in their self-management abilities. "Probably peace of mind when I'm off by myself."25,p.169 The study that explore the experience of the parents of these adolescents found that parents recognized the benefit of their adolescent's abilities and maturity and how this confidence helped with the mastery of their self-care behaviours. "She's just really matured and she's responsible for herself…knows that her health depends on her taking care of herself."24,p.197
Integrating self-care: busy lifestyles and other challenges
The key issue for adults with DM was integrating self-care behaviours into busy lifestyles. Several studies on adults with DM35;41-43 reported that participants had great difficulty changing their lifestyle habits, and the habits of their families. ''…my wife, she gives little importance to my illness. I feel she helps with the needs of my disease very little. She cooks foods that I am not supposed to eat and if I do not eat them she says that she is not going to prepare food for me again.''35,p.205 In the workplace, adults described situations which were awkward and unaccommodating and often they felt it best not to inform workplace colleagues of their condition. Other challenges faced by adults were financial constraints which prohibited the purchase of both medicine and appropriate foods; multi-morbidities which conflicted and complicated self-care regimes for DM; and health care professionals who refused to engage in collaborative care. Some individuals with schizophrenia and DM frequently lacked the basic necessities because of financial problems. "To tell you the truth, a lot of times, I don't eat breakfast…You gotta stretch it, you know. …I'll get back to eating breakfast when things get better, but right now I gotta pay my electric bill."42,p.54
Studies on Individuals from different cultures mentioned that their participants had different responses to DM and were motivated to engage in self-care for different reasons. For Mexican adults with DM their goal was to master both control of the self and control of the disease, and they struggled to change cultural eating habits. ''Old habits, way of life, of not having breakfast…to change habits is difficult.''35,p.205 They assessed how well they were managing the disease by how they felt rather than by glucose levels. Australians with DM expressed a sense of loss due to the disease "it stopped me eating chocolate"43,p.4 and sought knowledge to improve their self-care behaviours. Turks and Arabs living in Australia on the other hand saw DM as a result of stress and their main goal was to remain calm. They sought reassurance and emotional comfort from health care professionals. "The doctor usually tells you everything you need to know."43,p.6 While Swedes focused on mastering the management of the disease, Yugoslavians looked for creative ways to deviate from DM self-care regimes.46 Adults with both schizophrenia and diabetes applied their lessons with schizophrenia self-care to DM with regard to consistency of care and adherence to medications. They learnt that continuously engaging in consistent self-care provided a measure of freedom and they sought to replicate this with DM. "I've been stable mentally for 15 or 20 years…so I had a good jump on the diabetes when it started happening. I could take the medicine and remember to take it, and watch my sugar, and it would be ok."41,p.60
Self-care as a life goal
Studies on elders with DM often described their motivation to perform self-care couched in aspects of life goals, and in functional rather than biomedical terms, for example the need to ''remain independent,'' and ''being able to walk.''44,p.413 Elders desired to engage with health care professionals in collaborative care, however not all were successful at attaining this goal. In one study of elders with DM, participants stated that the way information was given by health care professionals often affected their willingness and ability to engage in decision making with the professional. For example, when health care professionals spoke in medical jargon they could not understand, they perceived it as accentuating the power differential between the professional and themselves.53 One elder discerned: "If he can't be bothered to talk so I can understand him, he doesn't really want me to make the decision with him."53,p.578
Other studies of elders with DM noted that elders also tended to make downward comparisons to others who were doing poorly in comparison to themselves. ''He had to retire because of diabetes, his vision was going, his legs and feet were going, and I look at him and I could see what could happen, you know, for myself, if I don't take care of myself….and it's really difficult…."44,p.413 These comparisons with others could provide a sense of empowerment ''I don't let it (diabetes) press on my mind and keep me from doin' things … if you got diabetes, whatever complaints you have, don't think about it … some people's mind is worse than mine … and keep on going and you just take care of yourself."44,p.413
Like adults, elders were challenged by financial constraints and multiple-morbidities which complicated diabetes self-care regimes. ''respiratory problems, leg problems, hypertension, and problems with stairs don't let me walk.''35,p.205 However, one study commented on how spirituality and faith played an important role for some elders and allowed them to feel supported over and above the care they received from health care professionals. "Patients often attributed positive behaviors to God's assistance and talked about the strength and comfort they received from saying prayers and giving thanks for God's guidance"35,p.207
Orem's theory of self-care provided a valuable framework for the analysis and synthesis of studies in this review. Orem's categories of universal, developmental and health deviation requisites facilitated the reframing of the data in terms of these components, and helped extract some of the key issues involved in engaging in self-care behaviours. As the self-care requisites represent the purpose of performing self-care, analyzing the data according to these requisites provided insights into why individuals performed these behaviours and the obstacles they encountered. Use of Orem's self-care framework also provided the opportunity to examine the process of engaging in self-care behaviours through different developmental groupings.
When the purpose of self-care was to meet the universal, basic human needs, studies reported that self-care activities focused around being aware of self, identifying needs and engaging in self-care behaviours that would meet these needs, such as protecting oneself from harm.
When meeting developmental requisites, studies reported that self-care behaviours were influenced by developmental stage and level of maturity. Individuals with a positive attitude toward health were more inclined to engage in self-care behaviours, which in turn were reinforced by feelings of well-being that occurred after the performance of care.
When meeting health deviation requisites, studies reported that an individual's desire to engage in self-care behaviours could be enhanced by positive and supportive relationships with health care professionals. Individuals who were able to find symbolic meaning in their disease/disability, saw themselves as the focus of their lives, not the disease/disability, and consequently found engaging in self-care behaviours much easier than individuals who were not able to find such meaning. Individuals had many challenges to overcome, including financial resources, workplace constraints, co-morbidities, and lifestyle habits. Support from others and a connection to spiritual support if desired, were frequently mentioned as facilitators of self-care behaviours.
The analysis of the experience of self-care across developmental stages for the health deviation of diabetes revealed a gradual evolutionary process. Children focused on identifying symptoms and learning the self-care behaviours. As the child matured into adolescence the desire for freedom and independence became primary goals, and the self-care behaviours were mastered. For adults self-care was reinforced by a collaborative model of care with a health care professional that allowed individuals to become partners in their care. Individuals struggled to overcome challenges and learned to balance care of self and care of the illness. Across all developmental stages, support from others was important and assisted individuals to initiate and sustain self-care behaviours. For elders, self-care was already a part of their lives and they had a strong preference to interact with health care professionals in a collaborative model and be partners in their care. Individuals abandoned self-care in the face of overwhelming symptoms or disability, or when disempowered by professionals.
Family members caring for their relatives also found that health care professionals tended to ignore their knowledge. Although they had extensive knowledge about their relative's condition and capacity for self-care, health care professionals seldom included them or asked for their input on treatment and recommendations for care.
It is interesting to note, that despite the multiple disease/disabilities represented by these studies, there appears to be a commonality in the experience of self-care. The four overarching themes obtained from this analysis apply to all conditions and there are similar threads in the experience of engaging in self-care that run through the different groupings.
When analyzing the reported experience of individuals and families engaged in self-care, it is seen as a process involving being aware of self, acquiring knowledge and taking responsibility for meeting needs at whatever level they are presented. The performance of self-care behaviours can be influenced both positively and negatively by attitudes of others. Throughout life the purpose for performing self-care differs and individuals face challenges that interfere with their ability to master these self-care behaviours. Individuals who are able to reframe their experience of disease or disability in a positive way are more capable of adapting and maintaining their focus on caring for themselves. Individuals abandon self-care when overwhelmed by symptoms or disability and/or feel that they are not supported.
Self-care is a generic care concept that transcends medical or impairment groupings. One of the strengths of this synthesis is the ability to integrate multiple disease/disability groupings and the recognition of a commonality among conditions in the experience of self-care. The benefit of combining 50 studies provides a wealth of data from which to view these common threads.
Implications for practice
It is valuable for health care professionals to understand the struggle that individuals experience when trying to engage in self-care. This knowledge may improve how support can be tailored to an individual or family's need. Furthermore, professionals need to be cognizant of how important their support is, in terms of encouraging individuals to adopt and maintain self-care behaviours. Some individuals do desire to engage in collaborative care models with health care professionals and these individuals would benefit greatly by this support and guidance. Conversely, doubt and disbelief in the ability of individuals to engage in self-care diminishes their confidence and desire to perform these behaviours. Individuals may actually abandon self-care when not supported by health care professionals resulting in a heavier reliance on the health care system. Recognizing the significance of their contribution to helping individuals engage in and maintain self-care behaviours will encourage health care professionals to consistently deliver this support.
Implications for research
This review integrated the experiences of self-care as reported by individuals and/or their families. Understanding how self-care is perceived contributes to the knowledge about factors that influence the adoption and maintenance of self-care behaviours. This review has provided insight into the process of engaging in self-care through the different developmental stages of life, as well as the adoption of self-care behaviours to meet different requisites. Two areas for further research are evident: 1) development and evaluation of reliable and valid self-care assessments in order that health care professionals can tailor support to need; and 2) evaluate the evidence on the effectiveness of supportive care interventions to assist individuals in engaging in self-care with attention to different disease/impairment groupings identified in this review.
The lead author would like to acknowledge the Canadian Institutes of Health Research (CIHR) for funding support provided by a PhD Fellowship Knowledge Translation Award (KPD 85181).
Conflicts of interest
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Appendix I: Search strategy
Appendix II: Critical Appraisal Instrument
Appendix III: Data Extraction Instrument
Appendix IV: Adapted Data Extraction Instrument
Appendix V: Search decision flow diagram
Appendix VI: Included studies
1 Alderson P, Sutcliffe K, Curtis K. Children as partners with adults in their medical care. Arch Dis Child 2006 Apr 1;91(4):300-3.
2 Arpanantikul M. Self-care process as experienced by middle-aged Thai women. Health Care for Women International 2006 Nov;27(10):893-907.
3 Backman K, Hentinen M. Model for the self-care of home-dwelling elderly. Journal of Advanced Nursing 1999 Sep;30(3):564-72.
4 Baird CL. Holding on: self-caring with osteoarthritis. Journal of Gerontological Nursing 2003 Jun;29(6):32-9.
5 Baker C, Stern PN. Finding meaning in chronic illness as the key to self-care. Canadian Journal of Nursing Research 1993;25(2):23-36.
6 Berman RL, Iris MA. Approaches to self-care in late life. Qualitative Health Research 1998 Mar;8(2):224-36.
7 Buston KM, Wood SF. Non-compliance amongst adolescents with asthma: listening to what they tell us about self-management. Family Practice 2000 Apr;17(2):134-8.
8 Canales MK. Taking care of self: Health care decision making of American Indian Women. Health Care for Women International 2004 May;25(5):411-35.
9 Carbone ET, Rosal MC, Torres MI, Goins KV, Bermudez OI. Diabetes self-management: perspectives of Latino patients and their health care providers. Patient Education & Counseling 2007 May;66(2):202-10.
10 Chapparo CJ, Hooper E. Self-care at school: perceptions of 6-year-old children. American Journal of Occupational Therapy 2005 Jan;59(1):67-77.
11 Chen K-H, Chen M-L, Lee S, Cho H-Y, Weng L-C. Self-management behaviours for patients with chronic obstructive pulmonary disease: a qualitative study. Journal of Advanced Nursing 2008;64(6):595-604.
12 Cicutto L, Brooks D, Henderson K. Self-care issues from the perspective of individuals with chronic obstructive pulmonary disease. Patient Education & Counseling 2004 Nov;55(2):168-76.
13 Clark DO, Frankel RM, Morgan DL, Ricketts G, Bair MJ, Nyland KA, et al. The meaning and significance of self-management among socioeconomically vulnerable older adults. Journals of Gerontology Series B-Psychological Sciences & Social Sciences 2008 Sep;63(5):S312-S319.
14 Clark L. Maternal responsibility for health in the household. Health Care Women Int 1995 Jan;16(1):43-55.
15 Dall'Agnol CM, Fernandes FS. Health and self-care among garbage collectors: work experiences in a recyclable garbage cooperative. Revista Latino-Americana de Enfermagem 2007 Sep;15:Spec-35.
16 Donald KJ, McBurney H, Browning C. Self management beliefs: attitudes and behaviour of adults with severe life threatening asthma requiring an admission to hospital. Australian Family Physician 2005 Mar;34(3):197-200.
17 El-Mallakh P. Evolving self-care in individuals with schizophrenia and diabetes mellitus. Archives of Psychiatric Nursing 2006;20(2):55-64.
18 El-Mallakh P. Doing my best: poverty and self-care among individuals with schizophrenia and diabetes mellitus. Archives of Psychiatric Nursing 2007;21(1):49-60.
19 Furler J, Walker C, Blackberry I, Dunning T, Sulaiman N, Dunbar J, et al. The emotional context of self-management in chronic illness: A qualitative study of the role of health professional support in the self-management of type 2 diabetes. BMC Health Services Research 2008;8:214.
20 Gorawara-Bhat R, Huang ES, Chin MH. Communicating with older diabetes patients: Self-management and social comparison. Patient Education and Counseling 2008 Sep;72(3):411-7.
21 Guidetti S, Asaba E, Tham K. The Lived Experience of Recapturing Self-Care. American Journal of Occupational Therapy 2007 May;61(3):303-10.
22 Hanna KM, Guthrie D. Parents' perceived benefits and barriers of adolescents' diabetes self-management: part 2. Issues in Comprehensive Pediatric Nursing 2000 Oct;23(4):193-202.
23 Hanna KM, Guthrie D. Adolescents' perceived benefits and barriers related to diabetes self-management—Part 1. Issues in Comprehensive Pediatric Nursing 2000 Jul;23(3):165-74.
24 Hjelm K, Nyberg P, Isacsson A, Apelqvist J. Beliefs about health and illness essential for self-care practice: a comparison of migrant Yugoslavian and Swedish diabetic females. Journal of Advanced Nursing 1999 Nov;30(5):1147-59.
25 Horner SD. Asthma self-care: just another piece of school work. Pediatric Nursing 1999 Nov;25(6):597-4.
26 Hunt LM, Arar NH, Larme AC. Contrasting patient and practitioner perspectives in type 2 diabetes management. Western Journal of Nursing Research 1998;20(6):656-76.
27 Kellegrew DH. Constructing daily routines: a qualitative examination of mothers with young children with disabilities. American Journal of Occupational Therapy 2000 May;54(3):252-9.
28 Kidd L, Kearney N, O'Carroll R, Hubbard G. Experiences of self-care in patients with colorectal cancer: a longitudinal study. Journal of Advanced Nursing 2008 Dec;64(5):469-77.
29 Knight D. Beliefs and Self-Care Practices of Adolescents With Asthma. [References]. Issues in Comprehensive Pediatric Nursing 2005 Apr;28(2):71-81.
30 Koch T, Jenkin P, Kralik D. Chronic illness self-management: locating the 'self'.[see comment]. Journal of Advanced Nursing 2004 Dec;48(5):484-92.
31 Kralik D, Koch T, Price K, Howard N. Chronic illness self-management: taking action to create order. Journal of Clinical Nursing 2004 Feb;13(2):259-67.
32 Leenerts MH, Magilvy JK. Investing in self-care: a midrange theory of self-care grounded in the lived experience of low-income HIV-positive white women. Advances in Nursing Science 2000 Mar;22(3):58-75.
33 Lippa KD, Klein HA. Portraits of patient cognition: how patients understand diabetes self-care. Canadian Journal of Nursing Research 2008 Sep;40(3):80-95.
34 McLaughlin J, Zeeberg I. Self-care and multiple sclerosis: a view from two cultures. Social Science & Medicine 1993 Aug;37(3):315-29.
35 Mendias EP, Clark MC, Guevara EB. Women's self-perception and self-care practice: implications for health care delivery. Health Care for Women International 2001 Apr;22(3):299-312.
36 Moore JB, Beckwitt AE. Children with cancer and their parents: self-care and dependent-care practices. Issues in Comprehensive Pediatric Nursing 2004 Jan;27(1):1-17.
37 Paterson B. Myth of empowerment in chronic illness. Journal of Advanced Nursing 2001 Jun;34(5):574-81.
38 Penney W, Wellard SJ. Hearing what older consumers say about participation in their care. International Journal of Nursing Practice 2007 Feb;13(1):61-8.
39 Persson LO, Ryden A. Themes of effective coping in physical disability: an interview study of 26 persons who have learnt to live with their disability. Scandinavian Journal of Caring Sciences 2006 Sep;20(3):355-63.
40 Plach SK, Stevens PE, Keigher S. Self-care of women growing older with HIV and/or AIDS. Western Journal of Nursing Research 2005;27(5):534-53.
41 Pradel FG, Hartzema AG, Bush PJ. Asthma self-management: the perspective of children. Patient Education & Counseling 2001 Dec 1;45(3):199-209.
42 Punamaki RL, Aschan H. Self-care and mastery among primary health care patients. Social Science & Medicine 1994 Sep;39(5):733-41.
43 Rew L. A theory of taking care of oneself grounded in experiences of homeless youth.[see comment]. Nursing Research 2004;52(4):234-41.
44 Sawin KJ, Bellin MH, Roux G, Buran CF, Brei TJ. The experience of self-management in adolescent women with spina bifida. Rehabilitation Nursing 2009 Jan;34(1):26-38.
45 Schmidt C. Mothers' perceptions of self-care in school-age children with diabetes. MCN, American Journal of Maternal Child Nursing 2003 Nov;28(6):362-70.
46 Shambley-Ebron DZ, Boyle JS. Self-care and mothering in African American women with HIV/AIDS. Western Journal of Nursing Research 2006;28(1):42-60.
47 Siegloff S, Aroni R. Mental illness and "self"-management in rural Australia: Caregivers' perspectives. Australian Journal of Primary Health 2003;9(2-3):90-9.
48 Townsend A, Wyke S, Hunt K. Self-managing and managing self: Practical and moral dilemmas in accounts of living with chronic illness. Chronic Illness 2006 Sep;2(3):185-94.
49 Unger WR, Buelow JM. Hybrid concept analysis of self-management in adults newly diagnosed with epilepsy. Epilepsy & Behavior 2009 Jan;14(1):89-95.
50 Wilson PM, Kendall S, Brooks F. The Expert Patients Programme: A paradox of patient empowerment and medical dominance. Health & Social Care in the Community 2007 Sep;15(5):426-38.
Appendix VII: Excluded studies
Ecks S. Bodily sovereignty as political sovereignty: 'self-care' in Kolkata, India. Anthropology & Medicine 2004 Apr;11(1):75-89.
Reason for exclusion: Score 5/10. Congruity between philosophical perspective and methodology unclear; congruity between methodology and analysis unclear; no statement locating researcher culturally or theoretically; no statement regarding the influence of the researcher on the research or vice versa; no statement of receiving ethical approval.
St.Aubyn B, Perkins E. Health visitors listening to mothers' perspectives of self care. Community Practitioner 2003 Feb;76(2):59-63.
Reason for exclusion: Score 5/10. Congruity between philosophical perspective and methodology unclear; congruity between methodology and objectives unclear; no statement locating researcher culturally or theoretically; no statement regarding the influence of the researcher on the research or vice versa; participants' voices not adequately represented.
Sutcliffe K, Sutcliffe R, Alderson P. Can very young children share in their diabetes care? Ruby's story. Paediatric Nursing 2004 Dec;16(10):24-6.
Reason for exclusion: Score 2/10. Congruity between philosophical perspective and methodology unclear; congruity between methodology and objectives unclear; congruity between methodology and methods unclear; congruity between methodology and analysis of data unclear; congruity between methodology and interpretation of results unclear; no statement locating researcher culturally or theoretically; no statement regarding the influence of the researcher on the research or vice versa; no statement of receiving ethical approval.
Wang HH, Hsu MT, Wang RH. Using a focus group study to explore perceptions of health-promoting self-care in community-dwelling older adults. Journal of Nursing Research 2001 Sep;9(4):95-104.
Reason for exclusion: Score 4/10. Congruity between methodology and interpretation of data unclear; no statement locating researcher culturally or theoretically; no statement regarding the influence of the researcher on the research or vice versa; participants' voices not adequately represented; no statement of receiving ethical approval; conclusion does not follow clearly from data.
Appendix VIII: Details of included studies (sorted by developmental grouping)
Appendix IX: List of study findings for developmental requisites (n=16)
Appendix X: List of study findings for health deviation requisites (n=42)
Appendix XI: List of study findings for health deviation requisites (n=42)
Appendix XII: Relationship of findings, categories and synthesized findings for universal requisites
Appendix XIII: Relationship of findings, categories and synthesized findings for developmental requisites
Appendix XIV: Relationship of findings, categories and synthesized findings for health deviation requisites