Care partner: A concept analysis

Available online at www.sciencedirect.com

Nurs Outlook xxx (2016) 1e11

www.nursingoutlook.org

Care partner: A concept analysis Paul N. Bennett, PhD, RN, BN, MHSM, GC(App Stats)a,b,*, Wei Wang, PhD, MStats, MBBSb, Mel Moore c, Cate Nagle, RN, RM, PhDb a Medical Clinical Affairs, Satellite Healthcare, San Jose, CA School of Nursing and Midwifery, Deakin University, Geelong, Victoria, Australia c Deakin University & Western Health Centre for Nursing Research, Sunshine, Victoria, Australia b

article info

abstract

Article history: Received 8 August 2016 Revised 11 October 2016 Accepted 13 November 2016

Background: The use of the term care partner has increased, particularly in the chronic disease literature; however, the concept has not been well defined. Purpose: The purpose of this concept analysis was to define and assist nurses to better understand the concept of care partner. Methods: The method by Walker and Avant was used for this literature-based concept analysis. Discussion: Care partnering includes providing assistance to an individual with a health condition to meet their self-care deficits, the commitment to a care partner relationship, and the recognition that people with self-care deficits are care partners contributing to their own care. Conclusion: Emphasizing the care partner dyad in nursing may contribute to improved patient care outcomes both in the acute and chronic settings. It is recommended that nurses view the person with the condition as a contributor and partner in their own care in the context of a larger care partnership.

Keywords: Care partner Carer Caregiver Nursing Chronic disease Acute care Concept analysis

Cite this article: Bennett, P. N., Wang, W., Moore, M., & Nagle, C. (2016, -). Care partner: A concept analysis. Nursing Outlook, -(-), 1-11. http://dx.doi.org/10.1016/j.outlook.2016.11.005.

Introduction People living with acute and chronic conditions frequently require support and assistance with maintaining health and performing activities of daily living. The people providing assistance are frequently spouses, siblings, children, other relatives, or friends (Logsdon et al., 2010). The assistance provided ranges greatly reflecting varying degrees of independence (Sifton, 2004). This assistance results in a dyadic partnership of the person with the condition and the person, or persons, assisting them to achieve their short- and long-term health care goals. Nonprofessional people providing assistance have been commonly referred to as carers, informal carers,

or caregivers. Although these terms are often relevant and readily understandable, they do not reflect the true nature of the care dyad (Eilers, 2013). The care dyad is the care partnership between the person living with the condition and the people assisting them (Silverstein & Sherman, 2010). The term care partner has been increasingly used to reflect this care partnership concept. Nursing care is provided to an individual when they do not have the capacity to provide their own care, which manifests a self-care deficit (Orem, 1980). Frequently, this care involves people significant to the nursing care recipient, most typically children, spouses, parents, siblings, or friends. The nurse’s expertise in involving this group can significantly influence a care recipient’s health outcome (Walker & Dewar, 2001).

* Corresponding author: Paul N. Bennett, Medical Clinical Affairs, Satellite Healthcare, 300 Santana Row Suite 300, San Jose, CA 95128. E-mail address: [email protected] (P.N. Bennett). 0029-6554/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.outlook.2016.11.005

2

Nurs Outlook xxx (2016) 1e11

Furthermore, the nurse’s understanding of the care recipient and their care partner relationship may enhance or conversely may be a barrier to improved health outcomes. In addition, the care partner may have health needs of their own that may need addressing that influence the care provided (Lyonette & Yardley, 2003). Therefore, the concept of the care partnership may have implications for nurses and nursing care. The purpose of this concept analysis is to provide a starting point for agreement and disagreement over the use of the term care partner where a recipient of nursing care has a self-care deficit. Guided by Orem’s self-care deficit theory (Orem, 1980), the concept of care partner can form a niche emanating from self-care deficit theory (Paley, 1996). It is within this theoretical approach that we have used the concept analysis method by Walker and Avant (1995) to guide this analysis of the concept of care partner.

were duplicate publications (514); they were conference abstracts only (109); the term care partner was only used in the author’s address (88); the term care partner was a health care organization (55); syntax related (21); the term care partner referred to professional health care staff (17); the full-text publication was not written in English (15); information and communication technology used as care partner (10); they were unpublished theses (5); the full text was unavailable (5); they were used in pediatric context (3); they were not health related (2); and the term care partner was used for a medical device (1). This left a total of 103 full-text titles that were analyzed for this concept analysis (Figure 1).

Findings Definition

Methods A search of relevant health and medical databases was performed. The databases were EMBASE, MEDLINE, PubMed, and CINAHL. Databases from January 1990 to October 2015 were searched. The search terms “care partner” and “care partners” were used as key words and controlled vocabulary. A total of 948 publications were identified. Further analysis of every publication resulted in 845 exclusions because they

The Oxford dictionary provides definitions for both individual terms “care” and “partner.” Care is defined as “the provision of what is necessary for the health, welfare, maintenance, and protection of someone or something,” whereas partner is defined as “a person who takes part in an undertaking with another or others” (Oxford Dictionary, 2016). The combination of these two definitions results in a care partner being a person who undertakes, with another, the provision of health, welfare, maintenance, and protection of someone.

Step 1 Search Terms: care partner, care partners Databases: Medline (OVID), PubMed, CINAHL, EMBASE Inclusion Dates: January 1990 to October 2015 Inclusion Criteria: publica ons using the term care partner or care partners Result: 948 publica ons iden fied

Step 2 Total of 845 excluded: duplicates (514), conference abstract only (109), care partner in author address (88), care partner as healthcare organisa on (55), syntax i.e. care, partner (21), staff as care partner (17), non-English full text (15), informa on and communica on technology as care partner (10), unpublished thesis (5), full text unavailable (5), paediatric use (3), not health related (2), medical device as care partner (1).

Step 3 Final result: 103 full text ar cles were accepted for analysis.

Figure 1 e Literature review methods and results.

3

Nurs Outlook xxx (2016) 1e11

The term has been predominantly a Western concept, or more specifically, a North American concept with 93% of articles emanating from the United States and Canada (Figure 3). Although this finding may reflect the English language and full-text criteria requirement for inclusion in this study’s analysis, it may also be associated with the West’s increased emphasis on the care partnership concept. The diseases, illnesses, or conditions associated with the term care partner were predominantly in the chronic or long-term condition context (Table 1). Articles addressing neurodegenerative disease were most likely to use the care partnership term. In particular, dementia, mild cognitive impairment, stroke, Alzheimer’s disease, Parkinson’s disease, and multiple sclerosis commonly used the care partner concept. Other chronic diseases such as HIV, kidney disease, and respiratory disease embraced the care partner concept. Other uses were in transplantation, both short- and long term, aged care, acute hospital care, cancer, end of life, and eye care. In most of these contexts, the term was used for the full transition of care from tertiary to home care.

Specifically, in health care, the term care partner has been defined as “an unpaid, nonprofessional care assistant, usually a family member who assumes primary responsibility for assisting a chronically impaired individual, with the management of their health” (Zook, 1992). The term most frequently refers to “individuals who are stakeholders in the care of the patient” (Gessesse & Damji, 2013) who are most commonly “partners, friends, neighbors, and others who provide or manage the care of a person with a serious illness or disability” (Levine, Halper, Peist, & Gould, 2010). In most definitions, the care partner is a nonprofessional, unpaid, and usually a family member or close friend.

Uses of Concept in the Literature The use of the term care partner has seen a significant increase since 2010 (Figure 2). Infrequent examples of the use of the term were evident during the 1980s and 1990s with the term gaining increasing popularity in the health service literature. Although confounded by an overall increase in academic publishing, this increase may reflect health professionals’ increased recognition of the importance of the care partner and care partnership in the provision of health care. The care partner concept has most frequently referred to a significant other (spouse, other relative, or close friend) as the care partner. In addition, some studies have referred to the person with the condition as a care partner in their own care (Christensen, Reininger, Richter, McKeown, & Jones, 1999; Sifton, 2004). This use reflects the contribution of the person with the condition in the collaboration with the person without the condition as being members of a care partnership.

Defining Attributes Walker and Avant (2011) suggested that defining attributes are characteristics that are associated with the concept and differentiate the concept from related concepts. Defining characteristics of care partner include characteristics common to those of caregiver and carer; however, there are specific characteristics that distinguish care partner from caregiver and carer. These characteristics will be presented later and displayed in Figure 4.

20 18

18

16 14

14

14

12 11 10 8

8

8

6 5 4

4 3

2

2

2

2

3

2

2

1 0

0

0

0

0

2 1 0

0

1990 1991 1992 1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015

0

1

Year Figure 2 e Number of care partner publications from 1990 to 2015.

4

Nurs Outlook xxx (2016) 1e11

USA

Canada

UK

Netherlands

Sweden

Australia

Ethiopia

Figure 3 e Country origin of care partner publications.

Characteristics Common to Care Partner, Caregiver, and Carer The defining characteristic of the care partner concept is the existence of a person with a health condition requiring some assistance with health care needs. Care contexts range from acute medical needs to long-term and end-of-life care (Table 1). This care can include providing assistance with fundamental activities of daily living, such as bathing, dressing, finances, and shopping to providing intensive and constant health care and supervision. More specifically, this may include health care information facilitation, medical appointment coordination, hospital care assistance, monitoring vital signs, home care assistance, coordination of community and government assistance, coordination of family member involvement, administration of medications, and transport. These elements of the care partner

concept are shared with the concepts of caregivers and carers. The second characteristic that is common to care partner, carer, and caregiver is the nature of the relationship of the person living with the condition and their care partner. The care partner is predominantly a family member, frequently the spouse or cohabitating partner. Furthermore, in the literature, the spouse is almost always the wife. Other relatives who act as care partners are siblings, children, grandchildren, nieces, nephews, in-laws, aunts, and uncles. Other care partners were defined as having a close relationship with the person living with the health condition or cohabitating their residence (Wise, Schatell, Klicko, Burdan, & Showers, 2010). Several examples include ex-spouses as care partners. All care partners were not their major health care professionals (HCPs), had relationships with HCPs, and were committed to providing health care.

Table 1 e Care Partner Conditions Neurodegenerative Dementia Cognitive impairment Stroke Alzheimer’s disease Parkinson’s disease Multiple sclerosis Brain injury Motor neurone disease

No.* 26 14 8 7 6 5 1 1

Other Chronic Illness HIV Renal Respiratory Chronic illness Cardiac Angioedema Diabetes Rehabilitation

No.*

Other

No.*

4 4 3 1 1 1 1 1

Transplant Acute care Cancer Aged care Delirium End-of-life care Eye care

6 4 3 3 1 1 1

* No. refers to the number of peer-reviewed articles accepted in the review relating to each condition.

5

Nurs Outlook xxx (2016) 1e11

ANTECEDENTS:

Two or more people one person with health care needs

Acute or Chronic CondiƟon frequently long term chronic condi on

RelaƟonship commitment trust expecta ons

CARE PARTNER DEFINING ATTRIBUTES:

Care Provider ADL support

High Level Care

CONSEQUENCES:

RelaƟonship Spouse Family Co-habita on Former spouse

Person with healthcare needs contributes to own care

Interdependence Greater input by individual with health condi on Sharing of knowledge, skills and ideas Best interests of both partners are upheld Reducing partner burden Greater focus on non-health care goals Caring for both health care partners by health professionals

Figure 4 e Care partner concept components. ADL, activities of daily living.

Characteristics that Distinguish Care Partner from Caregiver and Carer The defining characteristics of the care partner concept are the shared care dyad and the person with the health care condition as both care partners. These two characteristics set apart the care partner concept from the carer or the caregiver. First, the shared care dyad emphasized the involvement of the person providing care and the person with the condition. The health care provided is shared, and the relationship is not simply the person with the condition being a passive receiver of care (Eilers, 2013). These care partner dyads allow a

negotiated care plan where the care partner and the person with the condition share health care responsibilities (Sebern & Woda, 2012). The health condition is then viewed as a family or partnership experience because of the involvement of both the care partner and the person with the condition (Forbes et al., 2012; McGovern, 2015). This shared care model may change over time, most commonly where the care partner takes on more and more responsibility, found particularly in the context of people living with dementia (Roberto, Blieszner, McCann, & McPherson, 2011), Parkinson’s disease (Young-Mason, 2015), in aged care (Zook, 1992), and in end-of-life care (Ball,

6

Nurs Outlook xxx (2016) 1e11

Kemp, Hollingsworth, & Perkins, 2014). The partnership is an important distinction between care partner and carer/caregiver because the working partnership can achieve greater success and improved partnership outcomes (Young-Mason, 2015). This shared care model differs significantly from the carer or the caregiver model where the care is implicitly provided by the person without the condition. Related to the aforementioned dyad is the recognition that the person with the condition is a care partner. Therefore, the person assisting and the person living with the condition are both partners in care. This identifies the person with the condition as being a proactive partner in their own health care (Kahana & Kahana, 2003). In the context of a person living with dementia, the emphasis on this person as a partner in their own care highlights their own inherent strength and capacity to contribute to their own care and personhood (Chan & O’Connor, 2014; Logsdon, McCurry, & Teri, 2007). In the context of a person living with kidney disease and undertaking home dialysis, the idea that both the person receiving dialysis and the person assisting are both care partners can reduce partner burden and improve health outcomes for both the person with kidney disease and their partner (Wise et al., 2010). Therefore, a vital determining attribute of the concept of care partner is the recognition that the person with the condition is considered a care partner in their own care.

Model, Borderline, and Contrary Cases To contribute to the care partner concept analysis model, borderline and contrary examples can be used (Walker & Avant, 2011). Presenting these examples can provide a greater depth of understanding, given the multiple defining characteristics of the care partner concept.

Model Case A model example, or case, is one that includes all defining characteristics of the concept (Balaam, 2015). In the analysis of the care partner, these five characteristics are the existence of a person with a health condition requiring some assistance with health care needs; a relationship with the person living with the condition; the conditions were chronic or long term; health care is shared; and the person living with the condition is recognized as a care partner. A model example has been provided by Zarit, Femia, Watson, Rice-Oeschger, and Kakos (2004) who evaluated a dementia memory club intervention where care partner dyads met with other care partners. All five care partner characteristics were evident in this study; in particular, the notion of the person with dementia, although they were facing an inevitable health decline, was able to contribute to their own care in a shared care partnership dyad with the care partner without dementia. The major implication from this study was that both care partners (the person living

with dementia and the person living without dementia) found the experience of meeting with peers who were in similar circumstances very positive (Zarit et al., 2004). The recognition of the person with dementia as a care partner was considered pivotal to this outcome.

Borderline Case A borderline case is where the use of the concept has some but not all concept characteristics (Walker & Avant, 2011). Pasymowski, Roberto, and Blieszner (2013) provided a borderline case through their investigation of the experience of husbands who were care partners for their wives. In this case, the wives, who were living with mild cognitive impairment, were not characterized as care partners, although they negotiated some responsibilities in their care dyad. Through the interviews with the husbands, it was determined that care partnering was work consisting of increased assistance with activities of daily living and health care as the memory loss worsened. Relationship, shared care dyad, and long-term health care characteristics were present in this case; however, the lack of recognition of the person with mild cognitive impairment being a care partner results in the borderline categorization.

Contrary Case Meiland et al. (2014) provided a contrary case where the concept of care partner is used contrary to the defined aforementioned characteristics. In their study investigating end users’ participation in the design of assistive technology for people with cognitive difficulties, care partners were expert project members who were participants in the study. These care partners were frequently consulted in the development of the assistive technology. In this study, the term informal carers was used to identify those people who were involved in the care of people with cognitive impairment. The people with cognitive impairment who participated in the study were not identified as care partners.

Related Concepts The two most frequent related concepts that appear in the literature are caregiver and carer. These are often used interchangeably and are well-known concepts that most people in the health care profession could identify and define. Caregiver is commonly defined as a person who has a close relationship providing assistance with the coordination of care, symptom management, disability, mobility, medications, and dressings (Lim & Zebrack, 2004). A carer is frequently seen as providing the majority if not all the care for a person who is unable to contribute at all to their own care and activities of daily living (Goodman, 1986). Both the terms carer and caregiver imply a one-way care process from the carer to the recipient of care, which leads to the implication that the person receiving the care has little or no contribution to make.

Nurs Outlook xxx (2016) 1e11

Other related concepts are informal caregiver (Judge, Yarry, & Orsulic-Jeras, 2010), informal care partner (Goldstein et al., 2015), care friend (Christensen et al., 1999), unpaid carer, informal care provider (Levine et al., 2010), lay care partner (Eilers, 2013), and nonprofessional caregiver (Nusair et al., 2008). These concepts delineate the nonprofessional care partner from the HCP. There is nothing inherently incorrect about these concepts as the people representing the concepts are usually nonprofessional and unpaid, and there is no formal contractual agreement between the provider and recipient of care. However, the implication here may be that the informal care partner may have less of a commitment or have less influence over the health outcomes of the care recipient. This is contrary to the frequent reality where the informal care partner has a lifelong and all-encompassing commitment to the person, the care recipient. The care partner literature also contains the terms family carer (Legault & Ducharme, 2009) and family care partner (Genoe et al., 2012). Although most caregivers and care partners are spouses, siblings, and children, the use of these terms does not include the many nonrelated care partners who are friends, cohabitors, or neighbors. Taking this further, the care partner providing care can actually be determined by whoever the person with the condition says it is (McGovern, 2015; Sterner-Allison, 1999). The use of the term health significant other (Banningh et al., 2013; Kahana & Kahana, 2003) overcomes this somewhat; however, the term does not denote the caring component. The related concept of care dyad or care partner dyad describes the partnership between two care partners (Lu & Haase, 2011; Schmitter-Edgecombe & Dyck, 2014) and is consistent with the use of the care partner term. When more than two care partners are involved, the concepts of care tryad (Silverstein & Sherman, 2010), patient care partner team (Phelan, Kramer, Grieco, & Glassman, 1996), or care convoys (Ball et al., 2014) have been used. However, the use of these terms can also include the HCP that is contrary to the usual use of the care partner concept.

Antecedents Antecedents are factors that are required for the concept to occur and exist (Xyrichis & Ream, 2008). Antecedents for the concept of care partner are both practical and behavioral factors. Practical requirements require one care partner to have care needs. This usually is in the form of a long-term chronic condition, most frequently a neurodegenerative condition. In saying this, the care partner concept can be equally applied to acute care situations (Cornell, 1995; Huijbregts, McEwen, & Taylor, 2009). The care partnership also requires a relationship, although not always a relative, between the two care partners. This relationship requires commitment between the two care partners, which can increase as the health condition deteriorates, particularly in

7

conditions, such as dementia (Forbes et al., 2013) and chronic kidney disease (Bennett, Schatell, & Shah, 2015). In essence, an informal contract is present between the two care partners, where trust, expectations, and interdependence are features (Zook, 1992).

Consequences The use of the care partner concept may be pivotal to future health care provision. This is because the concept of the care partner changes the emphasis within the health care partnership, recognizing the role of the person with the health condition. This in turn places emphasis on the caring for both care partners, increased mutual involvement in care partner education, and the responsibilities of HCPs in the care partner dyad. The ultimate consequences can potentially lead to increased safety and improved health outcomes.

Care Partner Relationships The care partner concept challenges the notion that there is one carer or caregiver providing the care to another partner who is a passive recipient of care. In reality, this type of relationship rarely happens, even in the most severe conditions. It is more an interdependent partnership where both care partners, the person with and without the health condition, undergo a shared experience to work effectively (Eilers, 2013; Young-Mason, 2015). The care partner partnership may even lead to the development of formal care partnerships as evidenced in both the dementia (Judge et al., 2010) and renal contexts (Wise et al., 2010). In positive care partner relationships, a deobjectification of the notion of care receiver and caregiver can result in a highly functional health care team (Hellstro¨m, Eriksson, & Sandberg, 2015). Care partners can continue advocating for each other ensuring that the best interests of both partners are upheld (Eilers, 2013; Zook, 1992). Sharing of knowledge and ideas between care partners contributes to the partnership success even when one care partner is providing most of the health care (Lindell et al., 2010). Traditionally, the major provider of care in this relationship was the female; however, traditional gender roles need to be redressed to achieve a genuine care partnership (Hellstro¨m et al., 2015). The health care partner relationship can be complex as partner roles can change over time with the deterioration of health conditions. In the example of a partnership where one partner is living with a deteriorating neurodegenerative disease such as Alzheimer’s or Parkinson’s disease, the care partner roles change over time, which may create relationship tensions (Sifton, 2004). Consideration by both partners toward information sharing, partner independence, and health care needs requiring extra professional assistance may result in safer care for both partners.

The Role of the Care Partner with the Condition A further consequence of the care partner concept is the recognition of the contribution of the person with

8

Nurs Outlook xxx (2016) 1e11

the health condition to their own care. This person is one who has most likely led a full and active life, and who remembers a great deal of their past experiences (Mills & Brush, 2014). Even in severe dementia, involving the person with dementia can facilitate the strengths and inherent capacities of the person with dementia (Chan & O’Connor, 2014). Furthermore, in the acute health care context, the focus on the person with the condition as care partner can increase self-care (Roach & Woods, 1993), and in the context of cancer can decrease the focus on the disease and increase the focus on the positive activity the person with cancer is providing (Kahana & Kahana, 2003).

Caring for Both Care Partners In the care partnership, it may be forgotten that both partners require care. The care partner considered to be healthier and providing most of the care can often have health care needs. Unfortunately, the use of the terms carer and caregiver imply that the partner providing the care is fully able to provide care without reference to their own needs. Therefore, a further consequence of the care partner concept promotes the requirement to care for both care partners rather than the person with and without the condition separately (Camic, Williams, & Meeten, 2013). Many care partners are older, whereas younger partners may be dealing with other responsibilities such as paid work and family responsibilities (Kontos, Miller, Colantonio, & Cott, 2014). Therefore, it is important to focus on both care partners’ needs together in the care partner dyad.

Care Partner Knowledge and Skills A further positive consequence of the care partner concept is the emphasis on including both care partners in health care education. This is important at both early stages of the condition where there are minimal deficits to the end stages of the condition (Logsdon et al., 2010). Mutual education can increase the likelihood of improved preparation for memory loss in dementia (Gaugler et al., 2011), timely identification of wearing off symptoms in Parkinson’s disease (Matthews, Stamford, Saha, & Martin, 2015), early detection of dialysis complications (Culleton & Asola, 2011), and improved care of people who have suffered one or more strokes (Huijbregts et al., 2009).

Nursing Care Consequences Highlighting the care partner concept can influence the way nurses provide care that can affect patient safety and health outcomes. Whether in acute, chronic, hospital, or community contexts, or during the transition through these contexts, the acknowledgment of the care partner health care dyad is vital. Limited acknowledgment of the care partner dyad can manifest in not recognizing either the person with the condition or the care partner without the condition as a necessary contributor to their health care needs. This is less than ideal even in people with conditions who have commonly been excluded by health

professionals in treatment care plans (Forbes et al., 2012). Including both partners in care planning has seen improvements in dementia care (Legault & Ducharme, 2009), multiple sclerosis symptom management (Halper & Ross, 2010), angioedema therapy (Tuong, Olivieri, & Craig, 2014), medication adherence (Smith, Rapkin, Morrison, & Kammerman, 1997; Winkeljohn, 2010), cognitive behavioral therapy (Banningh et al., 2013), and stroke discharge planning (Zalewski & Dvorak, 2011). Examples of improved assessment by including care partners has been seen in frailty assessment (Goldstein et al., 2015), liver transplant assessment (Flattau et al., 2011), and home hemodialysis assessment (Wise et al., 2010). These improvements have notably been in partnerships affected by long-term health conditions requiring longterm commitment by care partners. In addition to long-term chronic health care, the care partner dyad has been increasingly evident in the acute and hospital health sector. The Cooperative Care model, developed by Roach and Woods (1993) involved one or more care partners principally involved in the delivery of hospital care resulting in increased partner self-care and no decrease in traditional patient outcomes. Similar acute care partner models have seen decreased lengths of stay and health care costs (Cornell, 1995), improved morbidity and mortality rates in bone marrow transplant care (Foster et al., 2005), improved care of people suffering acute delirium (Hill, Yevchak, Gilmore-Bykovskyi, & Kolanowski, 2014), and improved medication process (Phelan et al., 1996). Furthermore, discharge plans and care transitions improve with the care partner model (Cornell, 1995; Zook, 1992). Clearly, there can be positive consequences relevant to nursing of using the care partner concept in both acute and chronic health care contexts.

Empirical Referents Empirical referents provide specific measurable examples to verify the presence and subsistence of the concept (Walker & Avant, 1995). This verifies the existence of the concept in real life. We have not discovered an available empirical instrument to evaluate the presence or effect of care partner or care partner relationships. Although improvements in patient-related outcomes through care partner model interventions have been shown, no care partner model has been developed. An instrument measuring the related concept of partner intimacy has been developed (Schaefer & Olson, 1981) with a revised version psychometrically evaluated in people with cancer (Walker, Hampton, & Robinson, 2014). Although this instrument has been used in the assessment of care partners, it only measures intimacy-related concepts and not all aspects of care partner quality and/or effect. In summary, there are no common empirical measures for evaluating the impact or existence of the care partnership between the partner with the health condition and the partner without the health condition.

Nurs Outlook xxx (2016) 1e11

Discussion This is the first report of a concept analysis to better understand the complex nature of the care partner concept within a self-care deficit theory. The analysis reflects the increased emphasis on the use of the care partner concept in health care and nursing in particular. Similar to caring in nursing, the care partner’s role in health care is often an under-recognized hidden element of health care. Nurses have attempted to increase the recognition of care expertise by encouraging formal documented use of caring terms, such as centering, listening, and authentic prescience (Ray & Turkel, 2014). Nurses have an opportunity to extend their emancipatory experience to assist greater recognition of the formal care partner role. The care partner dyad emphasizes the input of the person with the condition in the real-world context where care partners are instrumental in the continuum of health care. McGovern (2015) refers to this notion as we-ness. This we-ness encompasses the characteristics of care partner dyads where health care challenges are team challenges, and care partners mutually benefit from the team. The implications for nursing start with the need to acknowledge the care partner dyad in health care activities where there are self-care deficits. By acknowledging the care partner dyad, nurses can better understand the care capacity and therefore the needs of the care partner team. Acknowledgment that not all people living with health care conditions have an appropriate care partner is necessary. These people frequently have many hurdles to overcome, given the lack of support available to them (Kertesz et al., 2009). This lack of support may be overcome somewhat with the use of web technologies and social media (Kinnane & Milne, 2010). The acknowledgment of the role of care partners places even more responsibility on nurses and other HCPs to recognize the presence or the absence of one or more care partners to best plan for future health care needs. The concept of care partner may be an underrecognized component of the movement toward patient-centered care. The use of the term patientcentered care did not frequently emerge in this analysis; however, the relationship between care partner and patient-centered care is likely to be an important aspect of the care partner concept in the future.

Conclusions Emphasizing the care partner dyad based on self-care deficit theory may have a positive effect on how nurses and health care teams may contribute to improved patient care outcomes both in the acute and chronic settings. It is recommended that nurses and

9

other HCPs view the person with the condition as a contributor and partner in their own care in the context of a larger care partnership. Those care partners without the condition are recommended to be included as important members of the health care team. Further research using Orem’s self-care deficit theory could enlighten us further, in particular, the operationalization of the care partner concept in the current complex health care environment.

Acknowledgments The authors acknowledge the assistance of Evelyn Hutcheon, Western Health Librarian, who gave great assistance in the original literature searches. Author contributions: All authors have agreed on the final version and meet at least one of the following criteria (recommended by the International Committee of Medical Journal Editors [http://www.icmje.org/ ethical_1author.html]): substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data; drafting the article or revising it critically for important intellectual content. Funding statement: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

references

Balaam, M. C. (2015). A concept analysis of befriending. Journal of Advanced Nursing, 71(1), 24e34. Ball, M. M., Kemp, C. L., Hollingsworth, C., & Perkins, M. M. (2014). “This is our last stop”: Negotiating end-of-life transitions in assisted living. Journal of Aging Studies, 30, 1e13. Banningh, L. W. J. W., Vernooij-Dassen, M. J., Vullings, M., Prins, J. B., Rikkert, M. G. O., & Kessels, R. P. (2013). Learning to live with a loved one with mild cognitive impairment effectiveness of a waiting list controlled trial of a group intervention on significant others’ sense of competence and well-being. American Journal of Alzheimer’s Disease and Other Dementias, 28(3), 228e238. Bennett, P. N., Schatell, D., & Shah, K. D. (2015). Psychosocial aspects in home hemodialysis: A review. Hemodialysis International, 19(S1), S128eS134. Camic, P. M., Williams, C. M., & Meeten, F. (2013). Does a ‘singing together group’ improve the quality of life of people with a dementia and their carers? A pilot evaluation study. Dementia, 12(2), 157e176. Chan, S. M., & O’Connor, D. L. (2014). Personhood: Including the Chinese person with dementia in research, policy, and practice. Journal of Ethnic and Cultural Diversity in Social Work, 23(3-4), 190e206. Christensen, L. A., Reininger, B. M., Richter, D. L., McKeown, R. E., & Jones, A. (1999). Aspects of motivation of a volunteer AIDS care team program. AIDS Education and Prevention, 11(5), 427. Cornell, M. M. (1995). The cooperative care concept: A care partner’s perspective. Nursing Management, 26(9), 58.

10

Nurs Outlook xxx (2016) 1e11

Culleton, B. F., & Asola, M. R. (2011). The impact of short daily and nocturnal hemodialysis on quality of life, cardiovascular risk and survival. Journal of Nephrology, 24(4), 405. Eilers, D. (2013). What’s in a worddCaregiver or care partner? Nephrology Nursing Journal, 40(1), 61. Flattau, A., Olaywi, M., Gaglio, P. J., Marcus, P., Meissner, P., Dorfman, L., ., Reinus, J. F. (2011). Social barriers to listing for adult liver transplantation: Their prevalence and association with program characteristics. Liver Transplantation, 17(10), 1167e1175. Forbes, D., Blake, C., Thiessen, E., Finkelstein, S., Gibson, M., Morgan, D. G., ., Culum, I. (2013). Dementia care knowledge sharing within a first nations community. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 32(04), 360e374. Forbes, D. A., Finkelstein, S., Blake, C. M., Gibson, M., Morgan, D. G., Markle-Reid, M., ., Thiessen, E. (2012). Knowledge exchange throughout the dementia care journey by Canadian rural community-based health care practitioners, persons with dementia, and their care partners: An interpretive descriptive study. Rural & Remote Health, 12(4), 2201. Foster, L. W., McLellan, L. J., Rybicki, L. A., Sassano, D. A., Hsu, A., & Bolwell, B. J. (2005). Survival of patients who have undergone allogeneic bone marrow transplantation: The relative importance of in-hospital lay care-partner support. Journal of Psychosocial Oncology, 22(2), 1e20. Gaugler, J. E., Gallagher-Winkler, K., Kehrberg, K., Lunde, A. M., Marsolek, C. M., Ringham, K., ., Barclay, M. (2011). The memory club: Providing support to persons with early-stage dementia and their care partners. American Journal of Alzheimer’s Disease and Other Dementias, 26(3), 218e226. Genoe, M. R., Keller, H. H., Martin, L. S., Dupuis, S. L., Reimer, H., Cassolato, C., & Edward, G. (2012). Adjusting to mealtime change within the context of dementia. Canadian Journal on Aging/La Revue Canadienne du Vieillissement, 31(02), 173e194. Gessesse, G. W., & Damji, K. F. (2013). Advanced glaucoma: Management pearls. Middle East African Journal of Ophthalmology, 20(2), 131. Goldstein, J., Hubbard, R. E., Moorhouse, P., Andrew, M. K., Mitnitski, A., & Rockwood, K. (2015). The validation of a care partner-derived frailty index based upon comprehensive geriatric assessment (CP-FI-CGA) in emergency medical services and geriatric ambulatory care. Age and Ageing, 44(2), 327e330. Goodman, C. (1986). Research on the informal carer: A selected literature review. Journal of Advanced Nursing, 11(6), 705e712. Halper, J., & Ross, A. P. (2010). Challenges in the treatment of mobility loss and walking impairment in multiple sclerosis. International Journal of MS Care, 12(1), 13e16. Hellstro¨m, I., Eriksson, H., & Sandberg, J. (2015). Chores and sense of self: Gendered understandings of voices of older married women with dementia. International Journal of Older People Nursing, 10(2), 127e135. Hill, N. L., Yevchak, A., Gilmore-Bykovskyi, A., & Kolanowski, A. M. (2014). The model of care partner engagement: Use in delirium management. Geriatric Nursing, 35(4), 272e278. Huijbregts, M. P., McEwen, S., & Taylor, D. (2009). Exploring the feasibility and efficacy of a telehealth stroke self-management programme: A pilot study. Physiotherapy Canada, 61(4), 210e220. Judge, K. S., Yarry, S. J., & Orsulic-Jeras, S. (2010). Acceptability and feasibility results of a strength-based skills training program for dementia caregiving dyads. The Gerontologist, 50(3), 408e417. Kahana, E., & Kahana, B. (2003). Patient proactivity enhancing doctorepatientefamily communication in cancer prevention and care among the aged. Patient Education and Counselling, 50(1), 67e73.

Kertesz, S. G., Posner, M. A., O’Connell, J. J., Swain, S., Mullins, A. N., Shwartz, M., & Ash, A. S. (2009). Post-hospital medical respite care and hospital readmission of homeless persons. Journal of Prevention & Intervention in the Community, 37(2), 129e142. Kinnane, N. A., & Milne, D. J. (2010). The role of the Internet in supporting and informing carers of people with cancer: A literature review. Supportive Care in Cancer, 18(9), 1123e1136. Kontos, P., Miller, K. L., Colantonio, A., & Cott, C. (2014). Grief, anger, and relationality: The impact of a research-based theater intervention on emotion work practices in brain injury rehabilitation. Evaluation Review, 38(1), 29e67. Legault, A., & Ducharme, F. (2009). Advocating for a parent with dementia in a long-term care facility: The process experienced by daughters. Journal of Family Nursing, 15(2), 198e219. Levine, C., Halper, D., Peist, A., & Gould, D. A. (2010). Bridging troubled waters: Family caregivers, transitions, and long-term care. Health Affairs, 29(1), 116e124. Lim, J. W., & Zebrack, B. (2004). Caring for family members with chronic physical illness: A critical review of caregiver literature. Health and Quality of Life Outcomes, 2(1), 1. Lindell, K. O., Olshansky, E., Song, M. K., Zullo, T. G., Gibson, K. F., Kaminski, N., & Hoffman, L. A. (2010). Impact of a diseasemanagement program on symptom burden and healthrelated quality of life in patients with idiopathic pulmonary fibrosis and their care partners. Heart & Lung: The Journal of Acute and Critical Care, 39(4), 304e313. Logsdon, R. G., McCurry, S. M., & Teri, L. (2007). Time-limited support groups for individuals with early stage dementia and their care partners: Preliminary outcomes from a controlled clinical trial. Clinical Gerontologist, 30(2), 5e19. Logsdon, R. G., Pike, K. C., McCurry, S. M., Hunter, P., Maher, J., Snyder, L., & Teri, L. (2010). Early-stage memory loss support groups: Outcomes from a randomized controlled clinical trial. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 65(6), 691e697. Lu, Y. Y. F., & Haase, J. E. (2011). Content validity and acceptability of the daily enhancement of meaningful activity program intervention for mild cognitive impairment patient-spouse dyads. The Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses, 43(6), 317. Lyonette, C., & Yardley, L. (2003). The influence on carer wellbeing of motivations to care for older people and the relationship with the care recipient. Ageing and Society, 23(4), 487e506. Matthews, H., Stamford, J., Saha, R., & Martin, A. (2015). Exploring issues around wearing-off and quality of life: The OFF-PARK survey of people with Parkinson’s disease and their care partners. Journal of Parkinson’s Disease, 5(3), 533e539. McGovern, J. (2015). Living better with dementia: Strengths-based social work practice and dementia care. Social Work in Health Care, 54(5), 408e421. Meiland, F. J. M., Hattink, B. J. J., Overmars-Marx, T., de Boer, M. E., Jedlitschka, A., Ebben, P. W. G., ., Dro¨es, R. M. (2014). Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project. International Psychogeriatrics, 26(5), 769e779. Mills, K., & Brush, J. (2014). Coaching care partners who support loved ones with MCI. SIG 15: Perspectives on Gerontology, 19(2), 50e56. Nusair, A., Jourdan, D., Medcalf, S., Marion, N., Iwen, P. C., Fey, P. D., ., Rupp, M. E. (2008). Infection control experience in a cooperative care center for transplant patients. Infection Control & Hospital Epidemiology, 29(5), 424e429. Orem, D. (1980). Nursing concepts of practice. New York, NY: McGraw Hill. Oxford Dictionary (2016). Oxford, UK: Oxford University Press, Retrieved from www.oxforddictionaries.com/definition/ english

Nurs Outlook xxx (2016) 1e11

Paley, J. (1996). How not to clarify concepts in nursing. Journal of Advanced Nursing, 24(3), 572e576. Pasymowski, S., Roberto, K. A., & Blieszner, R. (2013). Adjustment to mild cognitive impairment: Perspectives of male care partners and their spouses. Journal of Couple & Relationship Therapy, 12(3), 213e234. Phelan, G., Kramer, E. J., Grieco, A. J., & Glassman, K. S. (1996). Self-administration of medication by patients and family members during hospitalization. Patient Education and Counselling, 27(1), 103e112. Ray, M. A., & Turkel, M. C. (2014). Caring as emancipatory nursing praxis: The theory of relational caring complexity. Advances in Nursing Science, 37(2), 132e146. Roach, K. G., & Woods, H. B. (1993). Implementing cooperative care on an acute care medical unit. Clinical Nurse Specialist, 7(1), 26e29. Roberto, K. A., Blieszner, R., McCann, B. R., & McPherson, M. C. (2011). Family triad perceptions of mild cognitive impairment. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 66(6), 756e768. Schaefer, M. T., & Olson, D. H. (1981). Assessing intimacy: The PAIR inventory. Journal of Marital and Family Therapy, 7(1), 47e60. Schmitter-Edgecombe, M., & Dyck, D. G. (2014). Cognitive rehabilitation multi-family group intervention for individuals with mild cognitive impairment and their care-partners. Journal of the International Neuropsychological Society, 20(9), 897e908. Sebern, M. D., & Woda, A. (2012). Shared care dyadic intervention outcome patterns for heart failure care partners. Western Journal of Nursing Research, 34(3), 289e316. Sifton, C. B. (2004). Finding a balance: On care partners and teetertotters. Alzheimer’s Care Today, 5(4), 261e262. Silverstein, N. M., & Sherman, R. (2010). Taking control of Alzheimer’s disease: A training evaluation. Gerontology & Geriatrics Education, 31(3), 274e288. Smith, M. Y., Rapkin, B. D., Morrison, A., & Kammerman, S. (1997). Zidovudine adherence in persons with AIDS. Journal of General Internal Medicine, 12(4), 216e223.

11

Sterner-Allison, J. L. (1999). Management of adolescent and adult inpatients with cystic fibrosis. American Journal of HealthSystem Pharmacy, 56(2), 158e160. Tuong, L. A. C., Olivieri, K., & Craig, T. J. (2014). Barriers to selfadministered therapy for hereditary angioedema. Allergy and Asthma Proceedings, 35(3), 250e254. Walker, L. O., & Avant, K. C. (2011). Strategies for theory construction in nursing (5th ed). Boston, MA: Prentice Hall. Walker, L. O., & Avant, K. C. (1995). Concept development. In L. O. Walker, & K. C. Avant (Eds.), Strategies for theory construction in nursing (3rd ed). Norwalk, CT: Appleton & Lange. Walker, E., & Dewar, B. J. (2001). How do we facilitate carers’ involvement in decision making? Journal of Advanced Nursing, 34(3), 329e337. Walker, L. M., Hampton, A., & Robinson, J. W. (2014). Assessment of relational intimacy: Factor analysis of the personal assessment of intimacy in relationships questionnaire. PsychoOncology, 23(3), 346e349. Winkeljohn, D. (2010). Adherence to oral cancer therapies: Nursing interventions. Clinical Journal of Oncology Nursing, 14(4), 461. Wise, M., Schatell, D., Klicko, K., Burdan, A., & Showers, M. (2010). Successful daily home hemodialysis patient-care partner dyads: Benefits outweigh burdens. Hemodialysis International, 14(3), 278e288. Xyrichis, A., & Ream, E. (2008). Teamwork: A concept analysis. Journal of Advanced Nursing, 61(2), 232e241. Young-Mason, J. (2015). The fine art of caring: People with Parkinson disease and their care partners. Clinical Nurse Specialist, 29(2), 121e122. Zalewski, K. R., & Dvorak, L. (2011). Barriers to physical activity between adults with stroke and their care partners. Topics in Stroke Rehabilitation, 18(Suppl. 1), 666e675. Zarit, S. H., Femia, E. E., Watson, J., Rice-Oeschger, L., & Kakos, B. (2004). Memory club: A group intervention for people with early-stage dementia and their care partners. The Gerontologist, 44(2), 262e269. Zook, E. (1992). A consideration of the role of care partners in long term care for the frail elderly. Pride Institute Journal of Long Term Home Health Care, 11(4), 27e34.