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Interrelation Between Adult Persons With Diabetes and Their Family : A Systematic Review of the Literature
Tuula-Maria Rintala, Pia Jaatinen, Eija Paavilainen and Pivi stedt-Kurki Journal of Family Nursing 2013 19: 3 originally published online 3 January 2013 DOI: 10.1177/1074840712471899 The online version of this article can be found at: http://jfn.sagepub.com/content/19/1/3

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899Journal of Family NursingRintala et al. The Author(s) 2013 Reprints and permission: http://www. sagepub.com/journalsPermissions.nav

JFN19110.1177/1074840712471

Articles

Interrelation Between Adult Persons With Diabetes and Their Family: A Systematic Review of the Literature
Tuula-Maria Rintala, MSc1, Pia Jaatinen, MD, PhD 2, Eija Paavilainen, PhD, RN3, and Pivi stedt-Kurki, PhD, RN3

Journal of Family Nursing 19(1) 328 The Author(s) 2013 Reprints and permission: http://www. sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840712471899 http://jfn.sagepub.com

Abstract Diabetes mellitus is a common chronic disease all over the world. Selfmanagement plays a crucial role in diabetes management. The purpose of this systematic review was to summarize what is known about the interactions between adult persons with diabetes, their family, and diabetes self-management. MEDLINE, CINAHL, PSYCHINFO, LINDA, and MEDIC databases were searched for the years 2000 to 2011 and for English language articles, and the reference lists of the studies included were reviewed to capture additional studies. The findings indicate that family members have influence on the self-management of adult persons with diabetes. The support from family members plays a crucial role in maintaining lifestyle changes and optimizing diabetes management. Diabetes and its treatment also affect the life of family members in several ways, causing, for example, different types of psychological distress. More attention should be paid to family factors in diabetes management among adult persons.
1 2

University of Tampere, Tampere University of Applied Sciences, Tampere, Finland University of Tampere, Medical School, Tampere, Finland 3 School of Health Sciences, Nursing Science, University of Tampere, Tampere, Finland Corresponding Author: Tuula-Maria Rintala, University of Tampere, Tampere University of Applied Sciences, Kuntokatu 4, Tampere, Finland Email: tuula-maria.rintala@uta.fi

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Journal of Family Nursing 19(1)

Keywords diabetes, diabetes self-management, adult person, family, family relationships, literature review Diabetes mellitus is a common chronic disease all over the world. A primary goal of the treatment of diabetes is good metabolic control and the prevention of diabetes-related complications. Self-management plays a crucial role in diabetes management, as persons with diabetes usually provide more than 90% of the daily care (Anderson, 2003; Funnell & Anderson, 2004; Hill-Briggs & Gemmell, 2007). The relationship between self-management and metabolic control of diabetes has been elaborated in the literature (Chlebowy & Garvin, 2006; Minet, Moller, Vach, Wagner, & Henriksen, 2009; Song, 2010). Diabetes self-management is a very complex task, requiring life-long commitment, and modification of ones personal life style. Self-management behaviors are affected by many variables, such as self-efficacy, outcome expectancies, motivation, social support, and education (Egede & Osborn, 2010; Fortmann, Gallo, & Philis-Tsimikas, 2011; Gherman et al., 2011; King et al., 2010). To successfully manage diabetes the person with diabetes must be able to set goals and make various decisions every day, regarding nutrition, physical activity, medication, blood glucose monitoring, and stress management (Aljasem, Peyrot, Wissow, & Rubin, 2001; Funnell & Anderson, 2004; Hill-Briggs & Gemmell, 2007; Vahid, Alehe, & Faranak, 2008). Self-management behaviors (e.g., physical activity, blood glucose testing, healthy eating, and medical treatment) take place in everyday life and in various social settings. The family and significant others play an important role in the management of diabetes. The persons family can provide support and practical help for self-management (Albright, Parchman, & Burke, 2001; Chlebowy, Hood, & LaJoie, 2010; Paddison, 2010; Weiler & Crist, 2009). Previous studies have found that support from the partner significantly correlates with treatment adherence and metabolic control (Tang, Brown, Funnell, & Anderson, 2008; Toljamo & Hentinen, 2001; van Dam et al., 2005). Family interactions (tension, stress) may also hinder engagement in self-management behaviors (De Ridder, Schreurs, & Kuijer, 2005; Paddison, 2010). Persons with diabetes may experience family members without diabetes as overprotective or unsupportive (De Ridder et al., 2005). While family interactions significantly affect diabetes self-management and disease perception, diabetes and its treatment also affect the daily life of family members (Awadalla, Ohaeri, Al-Awadi, & Tawfiq, 2006; Baanders & Heijmans, 2007). The perception of diabetes may differ between persons

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with diabetes and their family members. Family members have been found to perceive diabetes as a more serious illness, having a greater impact on daily life than those with diabetes (Keogh et al., 2007). Many studies concerning the family members of persons with diabetes have been conducted on pediatric or adolescent persons with diabetes and their family. The importance of the relationship between parents and the child with diabetes has been clearly documented (Anderson, 2003; Armour, Norris, Jack, Zhang, & Fisher, 2005; Leonard, Jang, Savik, & Plumbo, 2005). Less attention has been paid to adult persons with diabetes and their family members, spouses, and other significant persons.

Purpose
The purpose of this systematic review is to assess and summarize studies conducted with adult persons with diabetes and their families. The study questions are as follows: (a) What is known about the interactions between diabetes self-management and family during the adult years? (b) How do the family members of adult persons with diabetes experience their everyday living with diabetes?

Method
MEDLINE, CINAHL, PSYCHINFO, LINDA, and MEDIC databases were searched using combination and variation of terms diabetes and family or spouse or significant other and daily activities or everyday living or self-management or self-care. The limits were set to English language and publications between 2000 and 2011. The search was done in collaboration with information specialists (McGowan & Samson, 2005). Additional hand searching of the reference lists of potentially relevant articles was conducted. Abstracts from each result were reviewed independently by two investigators. The searches of the five databases identified 268 articles. The number of the articles identified and excluded at each stage of the search and selection process is presented in Figure 1. Articles were excluded on the basis of the abstract if the topic was not persons with diabetes or if no adult persons with diabetes were included. There were 53 articles that were excluded on the basis of the full text, because they reported ongoing studies (no results yet) or no results on the family aspect were presented, or because no full text was available. As a result, 35 articles were included in the final review. The data abstraction was performed by one investigator independently and the abstractions were independently reviewed by another investigator (Needleman,

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Journal of Family Nursing 19(1)

268 articles identified on searches in MEDLINE, CINAHL, PSYCHINFO, MEDIC and LINDA. Searches limited to English language and publications between 2000 and 2011

186 articles excluded_based on title and abstract no persons with diabetes no adult persons medical study

82 potentially relevant articles

6 articles from reference lists

53 articles excluded based on full text full text not available no results no family aspect

35 articles included in the systematic review

Figure 1. Outline of the literature search

2002). Studies with all types of methodologies and research approaches were considered. Due to mixed methodologies and research approaches the articles (and studies as well) were analyzed by using mainly qualitative methods and results are discussed in a narrative form (Magarey, 2000).

Study Characteristics
Altogether 29 studies were reported in the selected 35 articles. From these 29 studies, four studies were reported in more than one article. More than half (16) of the studies were quantitative and 10 were qualitative studies; in three

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studies methodological triangulation was used on data gathering (interviews and questionnaires were used). Only one study was a randomized controlled trial (Kang et al., 2010). The studies are summarized in Table 1. Missing data have been left blank in the table, if they were not clearly stated in the studies. The sample size of the studies ranged from 10 to 568 and included a total of 3,600 participants (2,587 persons with diabetes, 1,013 family members) across the 29 studies reviewed. Almost half (14) of the studies included only person with diabetes and two of the studies only family members. The rest of the studies (13) were conducted on both persons with diabetes and their family members. Family members were mainly spouses or partners; in three studies also mothers, daughters, or sons were included. The proportion of men and women was equal. Most of the participants with diabetes had type 2 diabetes. The mean duration of diabetes in the individual studies varied between 4 and 22 years. The glycemic management of diabetes varied from diet therapy to multiple insulin injections therapy. Oral agents were the most commonly used glycemic treatment. In half of the studies, participants represented many different ethnicities and cultures, for example, African Americans, Asian Americans, Korean Americans, Latinos, and Japanese.

Results Interaction Between Diabetes Self-Management and Family

An examination of the studies included in this review found that the family influences diabetes self-management in many different ways. Family members helped and supported the diabetic family member with daily selfmanagement practices, especially food-related issues (Choi, 2009; Denham, Manoogian, & Schuster, 2007; Stephens, Rook, Franks, Khan, & Iida, 2010; Watanabe et al., 2010; Wen, Shepherd, & Parchman, 2004) and exercise (Beverly & Wray, 2010; Wen et al., 2004; Williams & Bond, 2002). Rosland et al. (2008), however, found that the association between family support and self-management was stronger for glucose monitoring than for other selfmanagement tasks. In their study, Kang et al. (2010) found that family support did not significantly affect self-care behaviors. The aim of this study was to compare family partnership intervention (FPIC) with the conventional care. One of the instruments used was the Diabetes Family Behavior Checklist, to assess the frequency of supportive and unsupportive family behaviors to the diabetes self-care regimen. In the FPIC group, the persons with diabetes perceived more positive support from their family members. In that group, the effects were most visible on adherence to foot care and glucose monitoring

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Method/study design Type of diabetes/sample characteristics Type 2/30 couples 1. 7 couples; both had DM 2. Mean duration of DM 10 years 3. Oral medication Type 2/30 couples 1. 7 couples; both had DM 2. Mean duration of DM 10 years 3. Oral medication Main results Focus group interviews Focus group interviews Focus group interviews Type 2/30 couples 1. 7 couples; both had DM 2. Mean duration of DM 10 years 3. Oral medication Questionnaires Three core themes related to daily life and beliefs about diabetes: 1. Vulnerability (worries, risks) 2. Burden 3. Balance Five core themes related to diet adherence: 1. Control over food (portion sizes, nagging) 2. Dietary competence (knowledge, understanding) 3. Commitment to support (encouragement) 4. Spousal communication (talking about diabetes) 5. Coping with diabetes Three core themes related to exercise adherence: 1. Collective support (encouragement, togetherness) 2. Collective motivation 3. Collective responsibility (participating together) Emotion management predicted change in disease management. Questionnaires and interviews Type 2/161 PWD 1. 97 male, 64 female 2. Mean duration of DM 4, 3 years 3. Oral medication mainly Type 2/159 PWD 1. 63 male, 96 female 2. Mean duration of DM 7, 7 years 3. Oral medication Family variables (togetherness, coherence, unresolved conflict) were statistically significantly related to disease management variables.

Table 1. Summary of the Articles Reviewed (Authors, the Aim of the Study, Method, Sample Characteristics, Main Results)

Author

Aim of the study/study question

Beverly et al. (2007)

To understand beliefs about diabetes

Beverly et al. (2008)

How spousal relationship translates into healthy eating

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Beverly and Wray (2010)

How spousal relationship translates into exercise adherence

Chesla et al. (2003)

To describe changes in disease management over one year

Chesla et al. (2004)

To examine how family factors influence health and health practices in persons with type 2 diabetes

(continued)

Table 1. (continued)
Method/study design Type of diabetes/sample characteristics Type 2/13 PWD (9 male, 4 female) 1. 7 spouses (4 husbands, 3 wives) 2. Mean duration of DM 6,5 years 3. Oral medication Main results Group interviews

Author

Aim of the study/study question

Chesla and Chun (2005)

To describe family responses to type 2 diabetes

Chesla et al. (2009)

To describe cultural and family challenges to illness management

Interviews

Accommodation of the PWD comprised maintaining ease of social relation with family despite diabetes symptoms and care requirements, and protecting quality of life and pleasure in eating. Accommodation of the family members included developing shared diabetes care practices and indirect coaching. Challenges to diabetes management in a family are: 1. Challenged family harmony 2. Challenged food beliefs and practices and 3. Challenged established family role responsibilities

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Choi (2009)

To examine the influence of family diet support on glycemic outcomes Interviews

Questionnaires

Type 2/informants: 20 couples 1. 40 % male 2. Mean duration of DM 8,4 years 3. Oral medication 85% respondents: 13 PWD (54 % male) 6 spouses 1. Mean duration of DM 6,2 years 2. Oral medication Type 2/143 PWD 1. 69 male, 74 female 2. Mean duration of DM 6,8 years Type 2/13 PWD 13 family members (spouses, mother, daughter, son) 1. 3 male, 10 female 2. Mean duration of DM 9,3 years

Denham et al. (2007)

To understand how family support influences dietary patterns

Family support on healthy eating has a beneficial effect on glucose control 1. Higher level of diet family support was significantly associated with lower A1C Family members provide assistance to PWD. Cultural food preferences and family traditions influence behavioral changes.

(continued)

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Method/study design Type of diabetes/sample characteristics Type 2/187 PWD 115 male, 72 female Main results Questionnaires Questionnaires Type 2/188 PWD 188 partners Different domains of family life were related to disease management, results varied by ethnic group. Sex, family world view and family emotion management affected the self-care practices among European-American PWD; Sex and family structure among Hispanic PWD. Partners experience levels of psychological distress as high or higher than PWD. Questionnaires Type 2/158 PWD 1. 93 male, 65 female 2. Mean duration of DM 7 years 3. Oral medication Observations and written field notes Questionnaires Type 2/5 PWD 1. Five family members The ways in which the patients perceived how the couple manages the emotional aspects of their relationship had direct linkages to disease management. Significant correlation was found between conflict resolution and the morale component of disease management. Among the women with improved glycemic control the home and family routines had changed after nutrition education. Overprotection by the partner showed a negative association with improvement in diabetes self-management. Type 1 and type 2/67 PWD 1. 32 male, 35 female 2. Mean duration of DM 18 years (type 1) and 11 years (type 2) 3. Insulin-treated

Table 1. (continued)

Author

Aim of the study/study question

Fisher et al. (2000)

To determine the relationship between characteristics of families and self-care practices

Fisher et al. (2002)

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Fisher et al. (2004)

To assess the levels of depressive affect and anxiety among partners of persons with type 2 diabetes To examine the linkages between patientappraised couple emotion management and disease management

Gerstle and Varenne (2003)

Hagedoorn et al. (2005)

To investigate the influence of family adaptation on glycemic control after nutrition education To examine the role of overprotection by the partner in DM selfmanagement

(continued)

Table 1. (continued)
Method/study design Type of diabetes/sample characteristics Type 2/21 PWD 1. 5 male, 16 female 2. Mean duration of DM 9,2 years 3. Oral medication 71 %, insulin 38 % 4. 6 family members/peers Main results Interviews

Author

Aim of the study/study question

Jones et al. (2008)

To examine the impact of family and friends on the management of DM

Jorgensen et al. (2003)

To compare the assessments of the rate of severe hypoglycemia between the PWD and their family members Questionnaires

Questionnaires

Family and peers greatly influence diabetes management Family members are helpful in diabetes management. Family members create moments of problems, i.e., barriers to self-care. Cohabitants recall significantly more episodes of severe hypoglycemia than the PWD. Family members experience diabetes as a severe illness.

Kang et al. (2010)

To compare family partnership intervention care with conventional care Interviews Type 2/13 PWD 1. 6 male, 7 female 2. Mean duration of DM 8 years

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Type 1/284 PWD 1. 46 % female 2. Mean duration of DM 22 years 3. Insulin 4. 284 cohabitants 5. 73 % spouses, 24 % unmarried partners Type 2/56 PWD 1. 30 male, 26 female 2. Mean duration of DM 4 years 3. Oral medication 66 %

Lohri-Posey (2006)

To determine the life experiences of adults living with type 2 diabetes

Family support did not significantly affect the self-care behaviors of PWD. There were significant differences in the attitudes towards diabetes between the groups. Four themes from experiences of living with diabetes: 1. Achieving a balance between diet and family needs 2. Adapting to fluctuations in energy level 3. Balancing family relationships 4. Dealing with the uncertainty of future health

(continued)

11

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Method/study design Type of diabetes/sample characteristics Main results Questionnaires Interviews Type 2/164 PWD 1. 71 % female 2. Mean duration of DM 8,5 years 3. Oral medication 63%, insulin + oral medication 28% 87 PWD 87 spouses Questionnaires The association between family support and self-management was stronger for glucose monitoring than for other self-management tasks. Family members create barriers to self-care. There were many illness experiences associated with DM. PWD and partners have different beliefs about diabetes. Illness experiences were often a growthenhancing and maturing process. Partners have made useful lifestyle changes. PWD demonstrated higher scores for personal control than their partners. PWD-partner dyads generally shared similar representations of type 2 diabetes. Both spousal warning and encouragement were associated with adherence to healthy eating by the PWD. Four themes of the lived experiences: 1. Living in concern about others health 2. Striving to be involved 3. Experiencing confidence 4. Handling the illness Questionnaires Type 2/67 PWD 67 partners 1. 97 male, 67 female 2. Mean duration DM 8,8 years 3. Oral medication 80%, insulin 28% Type 2/109 PWD 109 partners 1. Mean duration of DM 11 years 15 significant others 1. 11 partners 2. Three mothers 3. one sister Interviews

Table 1. (continued)

Author

Aim of the study/study question

Rosland et al. (2008)

To test how and when family and friend support affect DM selfmanagement behaviors

Sabone (2008)

What does living with diabetes mean?

Searle et al. (2007)

To assess the illness representations of PWD and their partners

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Stephens et al. (2010)

Stdberg et al. (2007)

To investigate social control strategies used by spouses of persons with type 2 diabetes To elucidate the lived experience of being a significant other to a PWD

(continued)

Table 1. (continued)
Method/study design Type of diabetes/sample characteristics Type 1 and 2/78 insulin-treated PWD 1. 33 male, 45 female 2. Mean duration of DM 17 years Main results Better marital satisfaction was related to higher levels of diabetes-related satisfaction Questionnaires

Author

Aim of the study/study question

Trief et al. (2001)

Trief et al. (2002)

Questionnaires

Type 1 and 2/78 insulin-treated PWD 1. 33 male, 45 female 2. Mean duration of DM 17 years Type 1 and 2/78 insulin-treated PWD 1. 33 male, 45 female 2. Mean duration of DM 17 years

Quality of marriage prospectively predicted diabetes-related quality of life

Trief et al. (2004)

Questionnaires, repeated over time Semi-structured interviews Questionnaires

Dietary self-care and adherence to exercise correlated with marital quality.

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Trief et al. (2003) Trief et al. (2006) Questionnaires

Support was regarded as helpful behavior. Nagging was described as nonhelpful behavior. Higher marital stress correlated with poorer blood glucose control. Family nutritional support is useful in improving metabolic outcome.

Watanabe et al. (2010)

To explore the relationship between marital relationship domains and psychosocial adaption to diabetes To prospectively assess the correlation between marital relationship and health-related quality of life To assess the correlation between marital quality and adherence to the diabetes care regimen. How do couples living with diabetes define support To explore the relationship between marital quality and diabetes outcomes To investigate the role of family support

Wearden et al. (2000)

To estimate the association between criticism and glucose control

Interviews and questionnaires

Type 1 and 2/40 PWD 1. 32 spouses Type 2/134 PWD 1. 77 male, 57 female 2. Mean duration of DM 9 years Type 2/112 PWD 1. 68 male, 44 female 2. Mean duration of DM 11,5 years 3. Oral medication 48%, insulin 47% Type 1/60 PWD 60 partners 1. 30 male, 30 female 2. Mean duration of DM 20 years

High levels of partners expressed emotions were associated with worse self-management scores.

(continued)

13

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Method/study design Type of diabetes/sample characteristics Type 1/60 partners Main results Partners with high expressed emotion levels attributed more negative diabetes events. Living with a family and higher level of family support were associated with better diet and exercise self-care. Family members perceived diabetes as a more serious disease, having a greater impact on daily life, compared with the PWD. Family members reported lower levels of well-being and satisfaction with support than the PWD. Social support was associated with exercise self-care. Interviews and questionnaires Questionnaires Type 2/138 PWD 46 male, 92 female Mean duration of DM 13,4 years Type 2/9 PWD 1. 10 family members 2. Mean duration of DM 8,5 years Type 2/152 PWD 1. 74 family members Focus group interviews Questionnaires Questionnaires Types 1 and 2/94 PWD 1. 41 male, 53 female 2. Oral medication 56%, insulin 25%

Table 1. (continued)

Author

Aim of the study/study question

Wearden et al. (2006)

Wen et al. (2004)

White et al. (2007)

White et al. (2009)

To test an attributional model of expressed emotions To examine the relationship between diabetes-specific family support and selfcare behaviors To explore the beliefs, attitudes and perceptions of adults with type 2 diabetes and their family To examine the relationship between psychological and social factors and diabetes outcomes

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Williams & Bond (2002)

To examine diabetes related self-efficacy, outcome expectancies, social support and diabetes self-care

PWD = person(s) with diabetes; DM = diabetes mellitus, diabetes.

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and weakest on adherence to medication and food choices. However, there was no statistically significant difference between the groups in the self-care behaviors measured (Kang et al., 2010). Many family relational variables were associated with self-management practices. Coherence and togetherness were reported to have a positive influence on diabetes self-management (Chesla et al., 2004), while family traditions (Denham et al., 2007) challenged attempts to eat a healthy diet. Certain family world views such as having pessimistic beliefs of life and defective emotion management (i.e., unresolved conflicts) in a family were linked with an overall sense of unease in living with diabetes as well as poor quality of disease management (Chesla et al., 2003; Fisher, Chesla et al., 2000; Wearden, Tarrier, & Davies, 2000; Wearden, Ward, Barrowclough, Tarrier, & Davies, 2006). Ethnicity and cultural variables also influenced how living with diabetes and self-management was experienced (Chesla et al., 2003, 2009; Denham et al., 2007; Fisher, Chesla et al., 2000). These variables differed between cultures. Chesla et al. (2009) found that living with diabetes and self-management challenged family roles and responsibilities in Chinese American families. In their study of families living in the Appalachian region of the United States, Denham et al. (2007) found that cultural food preferences and family traditions influenced behavior changes. Fisher, Chesla et al. (2000) found that family structure was associated with healthy eating and exercise among Hispanic American persons with diabetes. The relationship between spouses (Fisher et al., 2004; Trief, PloutzSnyder, Britton, & Weinstock, 2004) and the quality of marriage also correlated with adaptation to diabetes. Those with better marital satisfaction reported higher diabetes-related satisfaction and felt that diabetes had less of a negative impact on their lives (Trief, Himes, Orendorff, & Weinstock, 2001; Trief, Wade, Dee Ritton, & Weinstock, 2002). The marital relationship may be more important than family support in general. A negative marital relationship may affect the ability of the person with diabetes to maintain good glycemic control and self-care. According to Trief et al. (2006), high marital stress correlated with poor blood glucose control. Relational behaviors like nagging, arguing (Beverly, Miller, & Wray, 2008; Trief et al., 2003), critical comments (Sabone, 2008), and overprotection (Hagedoorn et al., 2006) were experienced as nonsupportive. Food-related issues were the most extensively studied self-management areas among persons with type 2 diabetes. Many variables in the family influence diet adherence. Denham et al. (2007) found that family traditions and cultural issues influenced changes in eating behavior, for example, the role of food in family traditions or the use of unhealthy food such as butter. Eating

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together played an important social role in families and a balance needed to be found between the sociocultural needs of the family and the requirements of healthy eating (Chesla & Chun, 2005; Lohri-Posey, 2006). Persons with diabetes reported that spouses controlled their portion sizes (Beverly et al., 2008; Trief et al., 2003) and did not want to follow healthy meal planning and food choices as much as the patients did (Lohri-Posey, 2006). This kind of spousal interaction created major roadblocks for the persons with diabetes striving for salutary eating habits (Denham et al., 2007). Both persons with diabetes and their families experienced food-related issues as the most challenging part of self-care behavior (Choi, 2009; Gerstle, Varenne, & Contento, 2001; Trief et al., 2003). Persons with diabetes and their family members reported a need for more knowledge and understanding of healthy eating, and better spousal communication (Beverly et al., 2008). Physical exercise was an important part of diabetes self-management as well. In their study Wen et al. (2004) found that persons with diabetes attained better exercise self-care if they had support from their family. Similar results were found by Williams and Bond (2002), regarding persons with both type 1 and type 2 diabetes. Beverly and Wray (2010) found that collective beliefs of spousal support influenced the maintenance of an exercise program. Shared high motivation to exercise seemed to increase the physical activity of persons with type 2 diabetes. Family members also created moments of problems (Jones et al., 2008). Some were overprotective, which has a negative effect on self-management (Hagedoorn et al., 2006). Persons with diabetes described that their family members are a source of stress (Lohri-Posey, 2006) and they created barriers to self-care (Rosland et al., 2008). Persons with diabetes reported negative experiences with self-care caused by spousal grief (Beverly, Penrod, & Wray, 2007). Chesla et al. (2009), however, found that diabetes caused different kinds of challenges for family dynamics and practices. For example, established family role responsibilities and family harmony were challenged by diabetes and its treatment.

Family Members Experiences of Living With Diabetes

The diabetes of one family member also influences other members of the family in several ways (Chesla et al., 2009; White, Smith, & ODowd, 2007; White, Smith, Hevey, & ODowd, 2009). Family members experienced fears and distress (Beverly et al., 2007; White et al., 2007) and there were often concerns that were not voiced (White et al., 2009). Risks connected with diabetes (Beverly et al., 2007) and uncertainty of future health (Lohri-Posey,

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2006) caused anxiety within the family. The fear of long-term complications and the fear of severe hypoglycemia were common (Jorgensen, PedersenBjergaard, Rasmussen, & Borch-Johnsen, 2003). Family members often felt that diabetes was a burdensome illness that one could not control. The burden of living with diabetes was sometimes a source of conflict within the marriage (Wen et al., 2004). Persons with diabetes and their partners often report discordant beliefs about diabetes (Sabone, 2008; Searle, Norman, Thompson, & Vedhara, 2007). The family members usually experienced diabetes as a more severe illness (Jorgensen et al., 2003; Stodberg, Sunvisson, & Ahlstrom, 2007; White et al., 2007, 2009) and they experienced more psychological distress than persons with diabetes (Fisher, Chesla, Skaff, Mullan, & Kanter, 2002). Partners described living with diabetes as dealing with an uncertain future (LohriPosey, 2006) and living in concern about others health and in constant awareness of the condition of the person with diabetes (Stodberg et al., 2007). They felt loss of spontaneity and sometimes frustration caused by the diabetes care regimen. However, many family members reported they were living a normal life and had found a balance, accepting diabetes as a natural part of life. Family members wanted to be involved in the management of diabetes and wanted to provide encouragement and support (Stodberg et al., 2007). Some family members found they made useful lifestyle changes (Sabone, 2008) and had healthier lifestyles in the family than before diabetes (Stodberg et al., 2007). They also talked more about health than before (Beverly et al., 2008) and saw positive aspects of living a healthy life (Stodberg et al., 2007).

Discussion
The findings of this systematic review reveal that family members have a considerable influence on the self-management of adult persons with diabetes. The support from partners/spouses plays a crucial role in making and maintaining lifestyle changes and optimizing diabetes management. The most studied and most challenging self-care behavior seems to be healthy eating, and family support is necessary for successful dietary management. Both persons with diabetes and their family may have to make changes in their choices of food, eating patterns, and dietary schedules. Spouses, in particular, affect the dietary behavior of each other in several ways. The impact of the family on diabetes self-management can be also negative. Overprotective behavior of family members is often experienced as unsupportive, according to earlier studies among adolescents (Anderson, 2003). Recent studies suggest results among adult persons with diabetes.

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Journal of Family Nursing 19(1)

Living with diabetes affects not only the person with diabetes, but the whole family and their views of life. Family members experience fears and different kinds of worries about risks connected with diabetes. Their fear of severe hypoglycemia is often greater than among the persons with diabetes. Family members, in general, experience diabetes as a more severe illness than persons with diabetes. However, diabetes is regarded as a natural element of everyday life in many families. Some family members even emphasize the positive aspects of living with diabetes (Stodberg et al., 2007). These findings show that there are remarkable differences between and within families, and there are no one-size-fits-all solutions for supporting families with a member with diabetes. Although some illness experiences may be universal across cultures, ethnicity and culture influence how diabetes and its self-treatment are experienced in a family (Manoogian, Harter, & Denham, 2010; Rees, Karter, & Young, 2010; Weiler & Crist, 2009). In this review, the participants represented many different ethnicities and cultures, but only a few studies (Fisher, Gudmundsdottir et al., 2000, 2002) have looked into the differences between different cultures. Family role responsibilities differ from one ethnicity or culture to another. Some cultures are more family oriented than others, and the attitudes toward the family vary in different cultures, which is likely to influence the results. Cultural sensitivity is essential in both the research and the practice of diabetes management in a family context.

Limitations
There are several limitations of this literature review. Due to the short period of time (2000-2011) over which the studies were published and other limitations set to the search procedure (e.g., only studies published in English), the number of studies included in this review was relatively small. During the 1990s and the 2000s the treatment of diabetes has become more diversified and complex related to advances in treatment protocols, for example, insulin treatments, self-monitoring of blood glucose, and self-titration of insulin doses (Nardacci, Bode, & Hirsch, 2010). Patient education has also become more patient centered, in keeping with the philosophy of empowerment (Anderson & Funnell, 2005; Funnell & Anderson, 2004; Salman, 2005). Only five studies included persons with type 1 diabetes; three of them included persons with both type 1 and type 2 diabetes. In those studies comparisons were not made between different types of diabetes. Most of the study participants were persons with type 2 diabetes and their family members.

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Given that over 80% of the persons with diabetes today have type 2 diabetes, this group is worth studying. However, the glycemic self-management of type 1 diabetes is usually more complex than the self-care of type 2 diabetes, due to the more demanding blood glucose monitoring and insulin treatment regimens, and the more detailed calculation of carbohydrates. Further research concerning adult persons with type 1 diabetes and their family is clearly needed. The current treatment recommendations, however, suggest initiation of insulin therapy sooner rather than later for type 2 diabetes (Gavin, PeragalloDittko, & Rodgers, 2010). The role and the challenges of the family in optimizing insulin therapy among adult persons with diabetes would be interesting questions to study in the future. In the studies reviewed, only one third of the participants were family members. There is a need for further studies from the family members point of view. How do family members of adult persons with diabetes describe their role in the everyday self-care practices? What kind of education do they need? Do they feel welcomed to be included in the diabetes education? What about the children of the persons with diabetes? How do they experience the demands of diabetes management in their family? What is the nature of the relational dilemmas and challenges of families experiencing diabetes when the interactions between members of the family unit are examined? What are the relational variables that assist families in living well along this disease? At a larger systems level, what are the relational dilemmas and challenges between families experiencing diabetes and the health care professionals and systems who care for them? And what familyhealth care professional relational variables invite collaboration and understanding? These questions need to be addressed in future studies concerning adult persons with diabetes and their family. Findings of the review of McBroom and Enriquez (2009) indicated that family-centered interventions significantly improve A1C among children with diabetes. Similarly, Cameron et al. (2008) found that family factors are important determinants of metabolic outcomes among adolescents with diabetes. As for adult persons with diabetes, only a few studies (Choi, 2009; Trief et al., 2006) have looked into the effects of the family relations on the outcomes of diabetes treatment. Outcomes are related to several complex factors (Norris, Lau, Smith, Schmid, & Engelgau, 2002) and it is a challenge to study the influence of family on the outcomes. Interventions are needed that focus on the supportive and affective aspects of family life that can improve metabolic control. Controlled studies with various family interventions would be most welcome (see Chesla, 2010), to find the most effective ways of supporting self-management among adult persons with diabetes.

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Conclusion
This systematic review provides compelling evidence that diabetes is clearly a family affair. More attention should be paid to family factors in diabetes management when an adult is diagnosed with diabetes. Persons with diabetes do not often live in isolation; self-management of diabetes usually takes place in a family and/or relational context. Many behavioral changes need to be made by persons with diabetes and they do not make decisions on these changes in a vacuum. The influence of the family is crucial. Family members are also affected emotionally and behaviorally by diabetes. When planning and implementing education programs for adult persons with diabetes, nurses should encourage the spouses/family members to participate in the education together with their partner/family member with diabetes. To enable the family to attend the education, organizing the education during evenings or weekends, and making innovative approaches like online chat rooms with consulting professionals may prove useful. Opportunities can be offered to share thoughts and feelings concerning diabetes and self-treatment to help cope with the challenges of living with diabetes. The persons with diabetes and the family members should be provided with opportunities to discuss all kinds of feelings, both with health care professionals and with other persons with diabetes and their families. More research is needed about the family experience of diabetes and more knowledge about best practices for family-centered interventions is desperately required. Acknowledgment
We kindly appreciate the help from the information specialists Mrs Paula Nissil and Mrs Maritta Tuhkio from the Tampere University Library.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this research was provided by the University of Tampere and the Finnish Diabetes Association.

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Bios
Tuula-Maria Rintala, MSc, is a doctoral student at the School of Health Sciences, University of Tampere, Tampere, Finland, and is also a lecturer at Tampere University of Applied Sciences. She has conducted research about diabetes education, insulin injection practices, and the treatment satisfaction of the persons with diabetes. She has offered workshops at the Development Programme for the Prevention and Care of Diabetes. Her recent publication (written in Finnish)

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concerned the Image-Training-Pilot (Development and Implementation of a European Guideline and Training Standards for Diabetes prevention) in Finland. Pia Jaatinen, MD, PhD, is a senior consultant in the Endocrinology Unit of Tampere University Hospital, and a senior lecturer in internal medicine at the Medical School, University of Tampere, Tampere, Finland. Her research and clinical interests include several aspects of clinical endocrinology as well as medical education. Recent publications include, Hormonal Deficiencies During and After Puumala Hantavirus Infection in European Journal of Clinical Microbiology & Infectious Diseases (2010, with S. Mkel, M. Miettinen, J. Salmi, I. Ala-Houhala, H. Huhtala, . . . J. Mustonen), Increased Cancer Incidence in AcromegalyA Nationwide Survey in Clinical Endocrinology (2010, with R. Kauppinen-Mkelin, T. Sane, M. J. Vlimki, H. Markkanen, L. Niskanen, T. Ebeling, . . . E. Pukkala), and Increased Long-Term Cardiovascular Morbidity Among Patients Treated With Radioactive Iodine for Hyperthyroidism in Clinical Endocrinology (2008, with S. Metso, A. Auvinen, J. Salmi, & H. Huhtala). Eija Paavilainen, PhD, RN, is a professor (Nursing Science) at the School of Health Sciences in University of Tampere, Finland. She has also held a research position in the Hospital District of Southern Osthrobothnia (Etel-Pohjanmaan sairaanhoitopiiri) since 2002. Her primary focus is on family research with an emphasis on families with children, families as clients in health care, and families in challenging life situations. Her major research projects concern family violence, child maltreatment and family risks, and support for families with children, especially from an intervention and outcome research perspective. Recent publications include, Womens Experiences of Their Violent Behavior in an Intimate Partner Relationship in Qualitative Health Research (2010), National Clinical Nursing Guideline for Identifying and Intervening in Child maltreatment Within the Family in Finland in Child Abuse Review (2012, with A. Flinck), Experiences of Emergency Care by the Women Exposed to Acute Physical Intimate Partner Violence From the Finnish Perspective in International Emergency Nursing (2011, with T. Leppkoski & P. stedt-Kurki). Pivi stedt-Kurki, PhD, RN, is a professor and chair of the discipline of Nursing Science in the School of Health Sciences, University of Tampere, Finland. She has provided sustained leadership in Family Nursing Science in Finland and was honored with a Distinguished Contribution to Family Nursing Award at the 9th International Family Nursing Conference in Reykjavik, Iceland, in 2009. Her research focuses on family health and well-being and family nursing interventions across the life span. Recent publications include, chapter Family Nursing Interventions in Finland:

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Benefits for families in Family Nursing in Action (2011, with M. Kaunonen), Further Testing of a Family Nursing Instrument (FAFHES) in International Journal of Nursing Studies (2009, with M.-T. Tarkka, M.-R. Rikala, K. Lehti, & E. Paavilainen), and Nursing Intervention Studies on Patients and Family Members: A Systematic Literature Review in Scandinavian Journal of Caring Sciences (2009, with E. Mattila, K. Leino, & E. Paavilainen).

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