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This article was downloaded by: [Colorado State University] On: 25 September 2013, At: 05:52 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK International Journal of Psychology Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/pijp20 Family routines and rituals in the context of chronic conditions: A review Carla Crespo a , Susana Santos a , Maria Cristina Canavarro a , Magdalena Kielpikowski b , Jan Pryor b & Terezinha Féres-Carneiro c a Faculty of Psychology and Educational Sciences, University of Coimbra , Coimbra , Portugal b Roy McKenzie Centre for the Study of Families, Victoria University of Wellington , Wellington , New Zealand c Department of Psychology , Pontifical Catholic University of Rio de Janeiro , Rio de Janeiro , Brazil Published online: 15 Jul 2013. To cite this article: Carla Crespo , Susana Santos , Maria Cristina Canavarro , Magdalena Kielpikowski , Jan Pryor & Terezinha Féres-Carneiro (2013) Family routines and rituals in the context of chronic conditions: A review, International Journal of Psychology, 48:5, 729-746, DOI: 10.1080/00207594.2013.806811 To link to this article: http://dx.doi.org/10.1080/00207594.2013.806811 PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http://www.tandfonline.com/page/terms-and-conditions

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This article was downloaded by: [Colorado State University]On: 25 September 2013, At: 05:52Publisher: RoutledgeInforma Ltd Registered in England and Wales Registered Number: 1072954 Registered office: MortimerHouse, 37-41 Mortimer Street, London W1T 3JH, UK

International Journal of PsychologyPublication details, including instructions for authors and subscription information:http://www.tandfonline.com/loi/pijp20

Family routines and rituals in the context ofchronic conditions: A reviewCarla Crespo a , Susana Santos a , Maria Cristina Canavarro a , MagdalenaKielpikowski b , Jan Pryor b & Terezinha Féres-Carneiro ca Faculty of Psychology and Educational Sciences, University of Coimbra , Coimbra ,Portugalb Roy McKenzie Centre for the Study of Families, Victoria University of Wellington ,Wellington , New Zealandc Department of Psychology , Pontifical Catholic University of Rio de Janeiro , Riode Janeiro , BrazilPublished online: 15 Jul 2013.

To cite this article: Carla Crespo , Susana Santos , Maria Cristina Canavarro , Magdalena Kielpikowski , Jan Pryor& Terezinha Féres-Carneiro (2013) Family routines and rituals in the context of chronic conditions: A review,International Journal of Psychology, 48:5, 729-746, DOI: 10.1080/00207594.2013.806811

To link to this article: http://dx.doi.org/10.1080/00207594.2013.806811

PLEASE SCROLL DOWN FOR ARTICLE

Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”)contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensorsmake no representations or warranties whatsoever as to the accuracy, completeness, or suitabilityfor any purpose of the Content. Any opinions and views expressed in this publication are the opinionsand views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy ofthe Content should not be relied upon and should be independently verified with primary sources ofinformation. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands,costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly orindirectly in connection with, in relation to or arising out of the use of the Content.

This article may be used for research, teaching, and private study purposes. Any substantial orsystematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distributionin any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found athttp://www.tandfonline.com/page/terms-and-conditions

Family routines and rituals in the context of chronicconditions: A review

Carla Crespo1, Susana Santos1, Maria Cristina Canavarro1, Magdalena Kielpikowski2,Jan Pryor2, and Terezinha Feres-Carneiro3

1Faculty of Psychology and Educational Sciences, University of Coimbra, Coimbra, Portugal2Roy McKenzie Centre for the Study of Families, Victoria University of Wellington, Wellington,

New Zealand3Department of Psychology, Pontifical Catholic University of Rio de Janeiro, Rio de Janeiro, Brazil

T his paper is a systematic review of 39 empirical studies on family routines and rituals in the context of a chronic

condition of a family member. The search strategy encompassed a wide spectrum of chronic conditions affecting

family members from childhood/adolescence to adulthood. Twenty quantitative, 13 qualitative, 3 mixed-methods, and 3

intervention studies published between 1995 and 2012 were reviewed. A conceptual framework of routines and rituals as

key elements of family health was adopted, resulting in three main findings. First, a chronic condition in a family

member impacted the frequency and nature of family’s routines and rituals. Second, these whole-family interactions held

important functions for individuals and families, constituting strategic resources in the condition’s management and

opportunities for emotional support exchanges, and providing the family with a sense of normalcy amid the challenges

posed by chronic conditions. Third, family routines and rituals were linked to positive health and adaptation outcomes

for both patients and family members. Implications for future research include the need for the distinction between

routines and rituals against a conceptual background, use of validated assessment methods, and empirical examination of

predictors of changes in routines and rituals throughout the course of the condition and of the mechanisms linking these

family events to positive outcomes. Conclusions support the inclusion of routines and rituals in a family-centered care

approach to the understanding and treatment of chronic conditions.

Keywords: Routines; Rituals; Family; Chronic condition; Health.

C et article est un releve systematique de 39 etudes empiriques sur les routines et les rituels familiaux dans le

contexte de la maladie chronique d’un membre de la famille. La strategie de recherche englobait un large eventail

de problemes de sante chroniques affectant les membres de la famille de l’enfance / adolescence a l’age adulte. Vingt

methodes quantitatives, 13 methodes qualitatives, 3 methodes mixtes et 3 etudes d’interventions publiees entre 1995 et

2012 ont ete recensees. Un cadre conceptuel de routines et de rituels en tant qu’elements cles de la sante familiale a ete

adopte, ce qui a donne lieu a trois grandes conclusions. Premierement, une maladie chronique d’un membre de la famille

a une influence sur la frequence et la nature des routines et des rituels de la famille. Deuxiemement, ces interactions de

l’ensemble de la famille avaient des fonctions importantes pour les individus et les familles, constituant des ressources

strategiques dans la gestion du probleme de sante et les possibilites d’echanges de soutien affectif et en procurant a la

famille un sentiment de normalite dans le cadre des defis poses par les maladies chroniques. Troisiemement, les rituels et

les routines de la famille etaient lies a des resultats positifs pour la sante et l’adaptation a la fois pour les patients et les

membres de la famille. Les implications pour les recherches futures comprennent la necessite de distinguer les routines et

les rituels dans un cadre conceptuel, l’utilisation des methodes d’evaluation valides, l’examen empirique des facteurs

predictifs des changements dans les routines et les rituels tout au cours du probleme de sante et des mecanismes reliant

ces evenements familiaux a des consequences positives. Les conclusions confirment l’inclusion des routines et des rituels

dans une approche de soins axes sur la famille pour la comprehension et le traitement des maladies chroniques.

q 2013 International Union of Psychological Science

The authors would like to thank Sofia Gameiro, PhD for her insightful comments during the preparation of this review.

Correspondence should be addressed to Carla Crespo, Faculdade de Psicologia e de Ciencias da Educac�ao, Rua do Colegio Novo, Apartado

6153, 3001-802, Coimbra, Portugal. (E-mail: [email protected]).

International Journal of Psychology, 2013

Vol. 48, No. 5, 729–746, http://dx.doi.org/10.1080/00207594.2013.806811

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E ste artıculo es una revision sistematica de 39 estudios empıricos sobre rutinas y rituales familiares en el contexto de

una enfermedad cronica de un familiar. La estrategia de busqueda abarco un amplio espectro de enfermedades

cronicas que afectan a los miembros de una familia desde la infancia/adolescencia a la edad adulta. Se revisaron 20

estudios cuantitativos, 13 cualitativos, 3 de metodos mixtos y 3 estudios de intervencion publicados entre 1995 y 2012.

Se adopto un marco conceptual de las rutinas y rituales como elementos clave para la salud de la familia, resultando en

tres hallazgos principales. En primer lugar, la enfermedad cronica de un miembro de la familia afecta la frecuencia y

naturaleza de las rutinas y rituales de la familia. En segundo lugar, estas interacciones familiares mantienen funciones

importantes para los individuos y las familias, constituyendo recursos estrategicos en el manejo de la condicion y las

oportunidades de intercambio de apoyo emocional, y proporcionando a la familia un sentido de normalidad en medio de

los desafıos planteados por las enfermedades cronicas. En tercer lugar, las rutinas y rituales familiares estan vinculados a

la salud positiva y los resultados de adaptacion para los pacientes y los miembros de la familia. Las implicaciones para

futuras investigaciones incluyen la necesidad de distincion entre las rutinas y rituales en un contexto conceptual, el uso

de metodos de evaluacion validos, la examinacion empırica de los predictores de cambio en las rutinas y los rituales a

traves del curso de la enfermedad y de los mecanismos que vinculan estos eventos familiares con resultados positivos.

Las conclusiones apoyan la inclusion de las rutinas y rituales en una aproximacion de atencion centrada en la familia para

la comprension y el tratamiento de las enfermedades cronicas.

Family routines and rituals belong among the

universals of family life. Regardless of idiosyncrasies

embedded in the wider cultural and social ecology,

contemporary families across different cultures

similarly gather for meals, create routines around

household management and child-rearing, and mark

life-cycle transitions such as birth, marriage, and

death. Naturally occurring family routines and mean-

ingful rituals have been considered to hold important

functions for families, such as providing a predictable

structure to guide individual and group behavior and

promoting a sense of security and belonging (Fiese,

2006; Mead, 1973). Importantly, literature has also

suggested that family routines and rituals may play an

especially relevant role in fostering stability in times of

stress and transition (Wolin & Bennett, 1984). The

birth of a child with a chronic condition, or the onset of

such a condition in a previously healthy family

member, constitutes an important transition for the

family that is associated with increased stress and

burden not only for the patient, but for the family as a

whole.While the diagnostic phase of the disease can be

particularly taxing, the long-term duration of the

condition implies new demands and challenges calling

for a continuous adaptation. According to Rolland

(1987, 2003), families’ management of chronic

conditions is an ongoing process with specific

landmarks and transitions intertwined with the

individual and family developmental stages. Globally,

the incidence of chronic conditions is rising (World

Health Organization [WHO], 2002). Moreover, the

increasing number of children and adults surviving

with chronic conditions indicates that a growing

number of families worldwide will face a life in the

context of a specific illness. In the past two decades

there has been a shift in the approach tomanagement of

chronic conditions towards acknowledging the central

role played by families and advocating family-

centered care. This shift has prompted researchers

and clinicians to consider the impact that a chronic

condition can have on the family and also to identify

the natural resources available to families, such as

routines and rituals, to promote adaptation of families

and individuals.

The present review describes and discusses

empirical research addressing family routines and

rituals in families experiencing a chronic condition of

one of their members. A wide-ranging review strategy

was deliberately adopted in order to connect data from

different traditions and fields of research so that a

comprehensive picture of the extant literature could

be obtained. This review assembles 39 diverse studies

that employed quantitative, qualitative and interven-

tion-type methodologies. We have included studies

with families with either child or adult patients and

have adopted a broad conceptualization of chronic

condition endorsed by the WHO and encompassing

health problems requiring healthcare management

across time, including persistent noncommunicable

and communicable conditions, long–term mental

illness, and ongoing physical/structural impairment

(e.g. WHO, 2002).

CONCEPTUAL FRAMEWORK

In recent years, there has been a paradigm shift in the

understanding and treatment of chronic conditions

(Bullinger, Schmidt, Petersen, & Ravens-Sieberer,

2006; Kazak, Simms, & Rourke, 2002; Rolland,

2003). A change in the criteria used to evaluate medical

outcome prompted a progressive consideration of

patient-centered outcomes such as wellbeing and

quality of life, in addition to typical endpoints, such as

symptom control and other clinical indicators. The

focus has also shifted from a narrow examination of the

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individual patient to an inclusion of the patient’s

caregivers and the overall family context.Thiswidening

of focus was supported by the recognition that a chronic

condition affects not only the patient but also the family

as a system, and, complementarily, that a lot is to be

gained from involving the family in treatment. A

positive and supportive family environment can reduce

patients’ stress, and the involvement of multiple family

members in the condition’s management can contribute

to better adherence to medical regimens (Denham,

2003; Fiese, 2006; Rolland, 2003).

Next, we focus specifically on family routines and

rituals. First, we review the conceptual distinction

between routines and rituals; second, we discuss how

they have been conceptualized in the literature on

family and health. Family routines and rituals are

events that include specific and predictable family

interactions involving two or more of its members

(Fiese, 2006). Although routines and rituals are both

important family organizers, they are not the same.

The seminal review by Fiese and colleagues (2002)

marked the need for a conceptual distinction between

these two constructs, proposing that they can be

contrasted along the dimensions of communication,

commitment, and continuity. Family routines involve

instrumental communication between family mem-

bers about specific tasks, are circumscribed by a

specific time frame, and are repeated regularly.

However, family members do not ascribe a special

meaning to these interactions. In contrast, communi-

cation during family rituals involves meaning that is

shared by the members of the family, who are

affectively committed to these events. Family rituals

convey representations and beliefs about the family’s

identity and thus can be passed on to the next

generations. While family routines are easily

observable and decoded by outsiders, the symbolic

meaning guiding behavioral interactions during ritual

events can only be fully interpreted by the insiders—

the family members with a shared history.

In the daily lives of families, certain activities can

be the setting for both routines and rituals. For

instance, one of the most frequently examined family

settings in the literature is mealtimes. Family

mealtimes usually follow a predictable script that

may involve a pre-established schedule and assigned

roles around specific tasks such as preparing food,

clearing the table and cleaning up the kitchen; these

instrumental interactions can be considered part of

mealtime routines. In addition, family members may

attach a special meaning to sharing a meal with each

other, a time when they may tell each other about how

their day went, share stories and jokes and prepare

traditional or particular foods to acknowledge special

dates. These interactions contain a symbolic meaning

and can be considered part of mealtime rituals.

Literature has suggested that one of the first

indicators of families experiencing a major stressor,

such as the onset of an illness, is the disruption of their

usual routines and rituals (Reiss, 1982; Steinglass,

1998). Such periods call for a reorganization of daily

living to accommodate the new demands associated

with the condition, signifying what Rolland (1987)

called the “process of socialization to illness.”

Changes are pervasive along different layers of

family life: mealtime schedules and, depending on the

illness, food consumption habits may be altered.

Children’s daycare arrangements may be reorganized

to fit their or their parents’ healthcare appointments,

and usual weekend family activities may be

interrupted or abandoned if incompatible with the

newly diagnosed condition. Besides the practical need

for specific changes to take place, family members’

heightened distress in a condition’s initial stage can

also explain the emotional withdrawal from

certain activities associated with past pleasurable

experiences: They may not be willing to attend

family gatherings or the weekly family outing or

holidays.

While recognizing that family routines and rituals

can be affected by the onset of a health condition,

scholars in the family field have pointed out that these

elements of family life can be vital resources at times

of illness (Roberts, 2003a, 2003b). This idea gained

increased attention when family routines and rituals

were identified as key elements in family health

(Denham, 2003; Fiese, 2006, 2007). Denham (2003)

considered family health a group-level phenomenon

and described how family health routines—i.e.,

dynamic patterned behaviors relevant to individual

and family health—were part of the household

production of health. Drawing on Denham’s (2003)

work, Fiese (2007) further developed the concept of

family health, defining it as “the ways in which the

household, as a whole, engages in daily activities to

promote the well-being of its members and is

emotionally invested in the maintenance of health

over time” (p. 41S).

A growing body of empirical evidence adds support

to the conceptualization of family health, by showing

that predictability and order in the household are

associated with positive health outcomes for children,

adolescents, and adults (Fiese, 2006). The processes by

which these links occur are yet to be fully examined

and understood, with Fiese (2006) advancing three

possible explanatory mechanisms. The first mechan-

ism is the modification of health behavior through the

implementation of regular routines to conform to the

medical regimen of a specific condition. Examples are:

measuring sugar levels at specific times of the day and

altering food consumption (e.g. with diabetes), and

avoiding allergen stimuli and infection risks through

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regular housecleaning (e.g. with asthma and cancer).

The adaptation of old and creation of new routinesmay

promote adherence to treatment protocol, conse-

quently resulting in symptom reduction and better

overall health.

The second mechanism is family involvement and

monitoring of behavior. When the family as a whole is

involved in specific routines, family members are

more likely to engage in health-promoting behaviors.

For instance, a family meal may be a time when

family members check if the patient took the daily

medication, inquire about medical appointments and

ensure that healthy nutrition is being maintained.

Finally, the third mechanism described by Fiese

(2006) consists of involvement and affective connec-

tions present in family rituals. For some families,

reorganizing everyday life to manage a chronic

condition can be burdensome and costly. As time

unfolds, if family time is absorbed by condition-related

activities and talk, the family’s identity may be

affected in that it becomes restricted by the condition

(e.g. the diabetic or asthmatic family). In such

situations, one of the ways of “putting the disease in

its place” (Steinglass, 1998) is via the enactment of

family rituals. By engaging in these meaningful and

positive interactions, family members can experience

relief (Fiese, 2006), maintain a sense of continuity and

stability, and therefore prevent an exclusive focus on

the condition (Roberts, 2003). In sum, literature

suggests that family routines and rituals can (a) be

affected by the reorganization needed at the onset of a

chronic condition and by the burden associated

through its development over a long period of time,

and (b) constitute important resources for individual

and family adaptation to chronic conditions. Empirical

research on the topic of routines and rituals in the

health context is scarce. It is also diverse given the

multiplicity of conditions assessed and also of the

scientific disciplines which serve as contexts for this

research. The present review attempts to gather

findings from this heterogeneous body of empirical

research and thus to advance crossfertilization between

the fields of family routines and rituals and chronic

health conditions.

METHOD

Data sources and literature search

A systematic search of PubMed and PsycINFO

databases was carried out for literature from 1946 to

31 July 2012, using combinations of the following

terms: (family routines OR family rituals) AND

(“illness” OR “health” OR “disease”). MeSH (medical

subject headings) terms were used in PubMed. No

limitation regarding the type of publication, date, or

language was created during the searches. Following

the electronic search, reference lists of selected articles

were manually examined in order to identify other

potentially relevant studies for the review.

Selection of studies

EndNote (Thomson Reuters, USA) was used to merge

the results of the searches and to remove duplicated

records. The first two authors screened the titles,

abstracts, and, when needed, the full text of the studies

identified by both electronic and manual search

strategies. The following broad criteria for inclusion

were applied: (1) empirical studies using either

qualitative or quantitative methodology, or both; (2)

assessment of family rituals and/or family routines as

a variable (quantitative studies) or theme/category

(qualitative studies); (3) studies whose participants

were individuals with a chronic condition and/or their

family members. A total of 1081 nonduplicated

studies were identified initially through electronic

searches, of which 1046 were excluded; Figure 1

depicts information about the decision process and

reasons for exclusion. Four new studies were added to

the initial 35: two were identified via the examination

of selected papers’ references, one was selected

through other literature sources’ references, and one

was an article currently in press authored by the first

three authors of the present review (Santos, Crespo,

Silva, & Canavarro, 2012).

RESULTS

Descriptive characteristics

The database and manual search yielded 39 records

that met the inclusion criteria for the present review.

The studies were carried out between 1995 and 2012

(five between 1995 and 1999, five between 2000 and

2004, and 29 between 2005 and 2012) and originated

from seven countries: 25 were conducted in the USA,

seven in Australia, two in Canada and in the United

Kingdom, and one each in Portugal, the Netherlands,

and Lesotho.1 Figure 2 depicts the characteristics of

the selected studies in terms of context, methodology,

and design and whether they focused on family

routines, rituals, or both. The majority of studies

employed a quantitative methodology (n ¼ 20) and

focused on family routines only (n ¼ 24). The settings

for family routines and rituals differed widely across

1For simplicity, data reported throughout the review were obtained among American samples unless otherwise mentioned.

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studies and included both generic family routines and

rituals. The most often examined were bedtime and

mealtime, and disease-related routines and rituals.

Regarding assessment, among the quantitative

studies, the most frequently used instrument to assess

routines and rituals was the Family Ritual Ques-

tionnaire (Fiese & Kline, 1993) (n ¼ 7), followed by

the Family Routine Inventory (Jensen, James, Boyce,

& Hartnett, 1983) (n ¼ 4), the Child Routines

Questionnaire (Sytsma, Kelley, & Wymer, 2001)

(n ¼ 2), and the Family Time and Routine Index

(McCubbin, Thompson, & McCubbin) (n ¼ 1). Two

instruments were used to assess disease-related

routines, namely the Asthma Routine Questionnaire

(Fiese, Wamboldt, & Anbar, 2005) (n ¼ 3) and the

Pediatric Diabetes Routine Questionnaire (Pierce &

Jordan, 2012) (n ¼ 1). Five studies used items or

indexes generated for the study. Among mixed-

methods and qualitative studies, routines and rituals

were assessed via interviews with patients and family

•••••

Potentially relevant studies identified from electronic databases (N = 1141)PubMed (n = 724) PsycINFO (n = 417)

Studies excluded that did not meet broad criteria (n = 74)Reasons:•

••••••

•••

Family routines/Family rituals not included as a study variable orcategory/theme (n = 37)Insufficient or unspecified data on family routines/rituals (n = 12)Unclear or inconsistent data on family routines/rituals (n = 5)Assessment of other type of routines/rituals (n = 8)Instrument development (n = 2)Full text not accessible (n = 10)

First screening (title and abstract): Potentially relevant studies identified after duplicatesremoved (n = 1081)

Studies excluded that did not meet broad criteria (n = 972)Reasons:

Book chapters (n = 48)Books (n = 6)Book reviews (n = 7)Dissertations (n = 71)Case studies (n = 20)Editorial comments (n = 4)Erratum/Reprinted (n = 2)Reviews (n = 92)Theoretical/non-empirical articles (n = 177)Family routines/Family rituals assessment or chronic condition context notincluded (n = 545)

Second screening (full-text retrieval): Potentially relevant studies (n= 109)

Studies added from bibliography (n = 2)

Studies added from other source (n = 1)

Studies selected for systematic review (n = 39)

Unpublished studies (n = 1)

IDE

NT

IFIC

AT

ION

SCR

EE

NIN

GE

LIG

IBIL

ITY

INC

LU

DE

D

Figure 1. Flow chart of the study-selection process.

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Figure

2.Synthesisofthemaincharacteristicsofthestudiesreviewed.

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members. In the single randomized control trial

intervention study, family routines and rituals were

assessed with the Family Time and Routine Index

(McCubbin et al., 1996).

Of the 39 studies, the majority (n ¼ 32) were

carried out in the context of a pediatric chronic

condition, whereas seven referred to adult chronic

conditions. In pediatric chronic conditions, studies’

samples were heterogeneous in respect of participants

and of who reported on family routines and/or rituals.

Parents/primary caregivers (mainly mothers) were the

only family members who reported on family routines

and/or rituals in the majority of studies (n ¼ 25), with

three studies including both parents’/caregivers’ and

children’s reports. Among the four remaining studies,

one comprised several family members, not including

the child; one comprised several family members

including the child; one study examined children’s

reports only; and one examined one sibling’s reports

only.

The age of children affected by a chronic condition

ranged from 1.5 to 26 years, with only three studies

including participants over 18 years. In two of the 32

studies on pediatric chronic conditions, children’s age

range was not reported. With regard to adult chronic

conditions (n ¼ 7), patients and spouses reported on

routines and/or rituals in three studies; the remaining

studies’ reports were provided by the patient and a

family support member (n ¼ 1), patients, friends,

medical doctors, and family members (n ¼ 1), family

caregivers only (n ¼ 1), and adolescent children

(n ¼ 1). Patients’ age in these studies ranged from 21

to 86 (in two of the seven studies adult patients’ age

range was not provided). Among the quantitative

studies, 11 examined associations between family

routines and rituals and participants’ age, and four

between the former and gender. For quantitative

studies in pediatric chronic conditions, six did not find

an association between age and routines/rituals, three

found a negative significant link, and one found that

mothers of younger children reported more difficul-

ties in bedtime and mealtime routines (Eiser, Zoritch,

Hiller, Havermans, & Billig, 1995). One of the four

studies with adult patients found that shared meals

were more frequent in older couples (Franks et al.,

2012). None of these studies found a significant

association between family routines and rituals and

participants’ gender.

The impact of a chronic condition on familyroutines and rituals

We identified three ways used in the studies selected

for this review to assess the impact of chronic

conditions on family routines and rituals. The first two

ways, endorsed mainly in quantitative research, were:

(a) comparing the degree of change in family routines

and in the meaning of rituals experienced by families

with a chronically ill member to the situation of

healthy families, and (b) examining whether routines

and rituals changed according to the conditions’

severity and time since diagnosis. The third way,

undertaken mostly in interview-based qualitative

research, was to examine patients’ and family

members’ perceptions of family routines and rituals

along the dimensions of continuity and change.

Among the four studies including comparisons with

healthy families, two found no differences with regard

to routines’ and rituals’ meaning. In Australia,

Wright, Tancredi, Yundt, and Larin (2006) found

that although caregivers of children with physical

disabilities reported more sleep problems than

caregivers of typically developing children, the most

frequently cited strategy used by caregivers in both

groups was the establishment and maintenance of a

consistent bedtime routine. In addition there were no

differences between these groups in the amount of

time needed for the bedtime routine to take place.

Markson and Fiese (2000) reported no differences in

the meaning of family rituals between parents of

children with asthma and parents in a healthy

group. However, two other studies found differences

in one of the several dimensions of routines assessed.

An Australian study comparing reports of mothers of

children with autism spectrum disorder (ASD) and

mothers of typically developing children along

several family settings found that the only significant

difference was that the former reported lower levels of

routines and ritual meaning linked to family vacations

than the latter (Rodger & Umaibalan, 2011). Finally,

Australian parents of pediatric liver transplant

recipients, compared to parents of nontransplant

children, made significantly more adjustments to

family routines related to childcare to accommodate

their children, with no differences found for the other

eight dimensions of routines in family life (Denny

et al., 2012).

Among quantitative studies, only three addressed

the associations between time since diagnosis and

families’ endorsement of routines. Two studies did not

find an association between time since the diagnosis of

diabetes type I in children with generic routines

(Greening, Stoppelbein, Konishi, Jordan, & Moll,

2007) and disease-related routines after controlling for

participants’ age (Pierce & Jordan, 2012). In contrast,

Denny and colleagues (2102) reported that families

with more years post-transplant made more adjust-

ments in routines to accommodate the child’s needs

than families where the transplant had taken place

more recently. Of the six studies assessing links

between family routines and the severity of the

condition, while three reported no association between

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these variables, the other three showed a significant

relationship. On one hand, two studies found no

significant associations between asthma severity and

asthma-related routines (Peterson-Sweeney, Halter-

man, Conn, & Yoos, 2010) or rituals in Portugal

(Santos et al., 2012); also, in the context of cystic

fibrosis, a study in the UK did not find an association

between routines and child’s health status. On the other

hand, two studies found a positive link between the

burden of asthma routines and asthma severity (Fiese

et al., 2005; Fiese, Winter, Anbar, Howell, & Poltrock,

2008). Findings from a longitudinal study conducted

with adolescents affected by maternal HIV/AIDS

showed a significant association between mothers’

physical wellness and family routines; as mothers’

bodily pain decreased and physical functioning and

vitality increased, family routines increased over time

(Murphy, Marelich, Herbeck, & Payne, 2009).

Eleven qualitative studies, one mixed-methods

study, and one report describing an educational

intervention provided information about family

members’ perceptions of how routines and rituals

were influenced by living with a chronic condition.

Reports of parents of children with ASD were

examined in five studies, indicating that, in these

families, there were restrictions to routines’ and

rituals’ frequency and there were difficulties associ-

ated with these events. Changes in weekly routines to

accommodate spontaneous or new activities outside

the home were difficult to implement, and weekend–

weekday variations were taxing (Larson, 2006;

Schaaf, Toth-Cohen, Johnson, Outten, & Benevides,

2011). Families participated less than desired in

activities such as shopping, eating out, taking a day

trip or going on vacations, with mothers perceiving

the costs associated with participation in these events

as greater than the benefits (Gray, 1997; Larson,

2006). In Marquenie, Rodger, Mangohig, and

Cronin’s Australian (2011) study, mothers described

disruptions associated with dinnertime and bedtime

routines, stressing the particular challenge associated

with dinnertime. Children with ASD did not easily

accommodate to the family’s meal routine and were

often exempt from rules and acceptable behaviors

expected from the rest of the family. According to

these authors, mothers’ descriptions portrayed a sense

of chaos during dinnertime; the need to address their

children’s challenging behaviors impeded mothers’

focus on dinnertime, an event that lacked predict-

ability and structure. Family rituals were also affected

given the unpredictability of the child’s participation

in occasions such as birthday parties and holiday and

family celebrations. Families reduced the number of

family events attended or restructured them to

accommodate the child’s needs, which could result

in distancing from extended family. According to

mothers, withdrawing from family events was an

uneasy compromise between the child’s needs and

family togetherness (DeGrace, 2004). Overall, reports

of parents of children with ASD showed that family

routines and rituals were devoid of spontaneity

(DeGrace, 2004; Gray, 1997; Larson, 2006). The

constant need to introduce changes to accommodate a

child’s needs contributed to a sense that families had

limited options to organize such events and that

family life revolved around autism (DeGrace, 2004;

Marquenie et al., 2011; Schaaf et al., 2011).

Research with families of diabetic patients demon-

strated the impact of diabetes on preparing and

conducting family meals. Studies reported changes in

routines linked to mealtime, such as scheduling daily

activities to balance meals/snacks and insulin intake in

children (Faulkner, 1996), and patients and other

familymembers adopting new roles, such as acting like

“dietitians” (Gerstle, Varenne, & Contento, 2001). A

study with adult participants from the Appalachian

region in the US with type 2 diabetes (Denham,

Manoogian, & Schuster, 2007) and family support

members found that healthy dietary requirements for

this condition often conflicted with cultural eating

patterns associated with food. Intergenerational

traditions interfered with the needed changes in family

mealtimes, with patients and their spouses reporting

difficulties in changing deeply rooted rituals, which in

some cases were linked to family identity as depicted

by a family support member—“It’s a family that likes

to eat” (Denham et al., 2007, p. 41). Families tried to

balance the need for a healthy diet with honoring

family heritage by allowing certain traditions regard-

ing food to be kept during family celebrations in

contrast to more restricted everyday dietary patterns.

In the context of pediatric cancer, the UK study by

Sloper (2000) found that six months postdiagnosis

siblings of children with cancer reported a loss of their

own and family routines, which at 18 months dropped

to 40% of the prediagnosis status. In the context of

adult cancer, patients and spouses, reflecting on initial

adjustment to life with cancer, described disruption to

their caregiving routines (stronger for children not

attending school full-time), and changes in family

rituals such as holidays and birthday celebrations

(Buchbinder, Longhofer, & McCue, 2009).

Apart from examining the loss and disruption of

routines and rituals in the face of a family member’s

diagnosis with diabetes or cancer, the last three

studies mentioned (Buchbinder et al., 2009; Denham

et al., 2007; Sloper, 2000) also provided insight into

the occurrence of positive changes. Some families

welcomed the healthy changes in dietary routines

following the family member’s diagnosis of diabetes

(Denham et al., 2007). One fifth of siblings of UK

children with cancer reported an increase in family

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activities 18 months after the diagnosis (Sloper,

2000). Additionally, Buchbinder and colleagues

(2009) found that families developed new routines

and rituals around the experience of cancer, such as

cancer caregiving routines (e.g. children swabbing the

parent’s skin with alcohol in preparation for an

injection) and rituals (kissing a parents’ scar), sharing

knowledge and information about the progress of the

condition (e.g. discussions during family morning

routines), coping rituals such as evening prayers, and

family celebrations for marking treatment milestones.

In the UK, parents of children with cancer (Kars,

Duijnstee, Pool, van Delden, & Grypdonck, 2008)

also reported that new comforting rituals were

introduced so that the child could handle new

burdensome interventions and experiences. Ott

(2005) described a developmentally based edu-

cational plan created for families of children with

chronic viral hepatitis aiming at reducing the pain and

difficulties associated with the interferon injections

assigned in the treatment protocol. This plan, created

for each family with the help of a nurse practitioner,

involved the development of coping rituals during the

procedures (e.g., parents having a “pretend” shot first)

and family celebrations afterwards (e.g., always going

out to lunch after appointments), both of which were

praised by the children and their parents. Finally,

changes in rituals around food in a sample of

caregivers of HIV and AIDS patients in Lesotho were

described by Makoae (2011), who found that the role

of food in family caregiving and the importance of

eating to slow the disease progression and support

medical efficacy led to the development of ritualized

behavior around food in the exchanges between

patients and caregivers.

Perceived functions of family routines andrituals

Qualitative studies included in this review enabled the

examination of family members’ perceptions of

functions that routines and rituals played for them

and for their families. Based on eight qualitative and

three mixed-methods studies, three main functions

were identified. Family routines and rituals consti-

tuted strategic resources, provided a sense of family

normalcy, and promoted emotional support.

Strategic resources

Families used routines and rituals intentionally to

address specific needs in the context of chronic

condition management. Some studies focused on how

typical routines and rituals (e.g., during mealtimes,

bedtimes) were used as strategies, while others

focused on how new routines and rituals were

developed to meet the condition’s challenges. In two

studies with pediatric samples, one in the context of

physical disabilities (Wright et al., 2006) and the other

of ASD (Larson, 2006), parents reported that

implementing a bedtime routine was a strategy to

improve children’s sleep by providing a sense of

comfort and predictability. Mothers of children with

ASD considered bedtime routine helpful in managing

their children’s anxiety (Larson, 2006; Marquenie

et al., 2011). In Marquenie and colleagues’ (2011)

study, mothers reported that bedtime also allowed for

the development of meaningful rituals; storytelling or

lying down with their children during bedtime routine

was pleasurable, as the child was calm and might have

shown affect and appreciation. Another study of

pediatric ASD explored the impact of children’s

sensory-related behaviors and showed that family’s

planning of routines revolved around increasing

predictability and decreasing unexpected sensory

stimuli, which could augment the child’s distress

(Schaaf et al., 2011). Morning and bedtime routines

were kept consistent and weekends were structured,

so that the child would know what to expect.

With regard to childhood asthma, a study with

African-American families (Yinusa-Nyahkoon,

Cohn, Cortes, & Bokhour, 2010) identified four

routines parents used: giving young children respon-

sibility for medication use, monitoring the availability

of the school nurse, managing air quality within their

inner-city homes, and frequently cleaning the home.

These routines were considered adaptive in the

context of ecological barriers and social forces these

families faced in their daily lives. For diabetic

patients, mealtime routines were especially important

to address the condition’s dietary requirements. In

Denham and colleagues’ study (2007), one of the

ways that patients and family support members

managed the condition was to conform to dietary

patterns by engaging in regular and healthy meals.

Following nutrition education, women with diabetes

and family members also implemented a series of

changes aimed at managing the condition (Gerstle

et al., 2001). These included food tasks, such as

buying healthier meal ingredients and planning

holiday meals with sugarless desserts; patient care

tasks, such as family members accompanying women

to their appointments; management tasks, such as

scheduling doctor’s appointments, meals, and medi-

cation intake; and medical advice tasks, which

referred to family members’ encouragement of

treatment adherence and patients’ self-care. Finally,

in Buchbinder and colleagues’ study (2009), new

routines were created in order to share information

and knowledge about cancer between adult patients

and spouses and their children. Examples were

families including regular morning discussion about

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the father’s disease progress and moments where the

mother would read about the condition and children

would gather around and ask questions regarding

cancer.

Sense of family normalcy

The carrying out of family rituals and routines was

also perceived as a means of ensuring a sense of

normalcy in the family. Family members appraised

their family based on ideas about what a family is like

(“we’re just like other families”) and also on

comparisons with the family before the onset or

progress of a chronic condition (“we do things like we

used to”). Gray (1997) found that the third most cited

factor given as evidence of family normality by

parents of children with ASD in Australia was family

ritual and routine activities. According to the author,

most families in the study operated under high levels

of stress and regular rituals, such as eating together,

were considered critical in maintaining parents’

perceptions of their family as normal. In another

study of pediatric ASD, Schaaf and colleagues (2011)

found that parents reported efforts to maintain family

activities similar to those of other families, with one

participant stating that “We do stuff because we just

don’t want his disability to impact our family” (p. 12).

DeGrace found that families with children with ASD

felt a sense of having been robbed because, due to the

challenges of the condition, they had difficulty doing

things families often do together. A similar result was

reported by Mellin, Neumark-Sztainer, Patterson, and

Sockalosky (2004), as families of adolescent girls

with type 1 diabetes, who reported less frequent and

structured meal patterns, considered this a loss for

their family lives. Maintaining rituals around provid-

ing food to ill family members was also regarded as

part of the caregiver’s efforts to maintain normality in

a sample of caregivers of family members with HIV

and AIDS in Lesotho (Makoae, 2011).

In families where an adult member has been

diagnosed with cancer, patients and spouses indicated

that one way to maintain a sense of normalcy amid the

disruption in family life was through stabilizing

routines and by adapting old and creating new rituals

(Buchbinder et al., 2009). In order to maintain a sense

of normalcy in the household, parents attempted to be

present during key daily events such as bedtime or

dinnertime. Families in the study reported that the

support of family and friends was essential to being

able to maintain established routines and deal with the

physical and emotional challenges of cancer. Changes

in pre-established routines and rituals were also

implemented in order to maintain a sense of

continuity while adapting to new circumstances. In

addition, parents pursued specific new normalization

strategies by involving children in cancer manage-

ment tasks such as wheeling a parent in the hospital,

taking temperature, or replacing bandages.

Emotional support

Family routines and rituals were considered vital

opportunities for family members to provide

emotional support to each other, contributing to an

overall positive environment and a perception of the

family as a secure and supportive context. Despite

challenges associated with implementing routines and

developing meaningful rituals, mothers of children

with ASD suggested that the regularity of routines

was relevant and provided their children, with and

without ASD, with a sense of security (Larson, 2006).

Routines and rituals were considered ways of

expressing “being there” for their children by parents

of children with acute lymphoblastic leukemia in the

UK (Kars et al., 2008). Parents reported the

importance of continuity in routines and rituals so

that their children perceived daily living as familiar;

and of change, by creating new comforting rituals to

help face the new adverse experiences related to the

condition, such as complex and painful treatment

procedures. New rituals as a way of coping with

cancer in the family were also developed in families

of adult cancer patients, such as evening prayers, and

the acquisition of a canvas punching bag with “I hate

breast cancer” written on it for children to use as a

way of expressing their feelings (Buchbinder et al.,

2009). Another function of the newly developed

rituals found by this study was to regulate time and

mark transitions in the cancer journeys. Families

opted to acknowledge cancer milestones with specific

family celebrations, one example being a husband

bringing home half a cake when his wife was halfway

through chemotherapy, with the family planning to

celebrate with a whole cake when treatment was

complete (Buchbinder et al., 2009).

Specific support to patients can be provided

through caregiving tasks. Some of these tasks were

attributed to children who spontaneously developed

meaningful rituals around parents’ cancer manage-

ment (Buchbinder et al., 2009). Participation in these

tasks was seen as beneficial to the children (e.g., by

helping to mitigate fears around medical technology)

and to the parents. The symbolic meaning of such

interactions, such as kissing a parent’s scar,

contributed to building a connection between parent

and child around the shared experience of cancer. For

family members of patients with HIV and AIDS in

Lesotho, ritualized behavior around feeding patients

was at the core of the identity of the caregivers, who

experienced positive emotions when patients enjoyed

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food and stress when they were reluctant or unable to

eat (Makoae, 2011).

Associations with health and adaptationoutcomes

Twenty-one studies (19 quantitative, one mixed-

methods, and one intervention study) examined the

links between families’ endorsement of routines and

rituals and a range of outcomes for patients and family

members, which we describe next.

Adherence to treatment and clinicaloutcomes

One area that has received empirical attention is

how routines and rituals associate with adherence and,

directly and indirectly, to chronic conditions’ clinical

outcomes. Two studies found that family routines

related to asthma were linked to better adherence to

children’s prescribed asthma medication regime as

measured by electronic monitoring (Fiese et al., 2005)

and parents’ reports (Fiese et al., 2005; Peterson-

Sweeney et al., 2010). Another study by Peterson-

Sweeney (2009) showed that a higher degree of

routines in the household was linked to asthmatic

children’s better adequacy of medication regimen,

assessed by nurse rankings based on parental

information. While one study found a relationship

between family routines and asthma-trigger exposure

in families of asthmatic children (Peterson-Sweeney

et al., 2010), another reported no significant links

between these variables (Peterson-Sweeney, 2009).

In Canada, Schreier and Chen (2010) found that youth

with more family routines in their home environment

showed decreases in IL-3, an asthma inflammatory

marker, over an 18-month time period, regardless of

asthma severity. Results showed that after controlling

for daily use of medication, family routines no longer

predicted IL-production. The authors suggested that

the presence of routines could explain why some

youth used their prescribed medication more reg-

ularly, which in turn would affect clinical asthma

outcomes. Different findings were shown in a

qualitative study with children infected with HIV

and their guardians, who identified family daily

routines as one of the barriers to adherence to

antiretroviral medication (Roberts, 2005). Examples

were falling asleep before taking medication at night,

and sleeping through/not having enough time to take

morning doses. Also, deviations from usual schedule,

for instance when the family went on vacations, were

identified as problematic for keeping a regular

medication intake.

In families of children with type 1 diabetes,

mealtime rituals were linked to hemoglobin A1c

levels, a measure of average glycaemia over the past 2

to 3 months (Ievers-Landis, Burant, & Hazen, 2011).

However another study found no correlations between

routines in the child’s life and the same measure

(Greening et al., 2007). Two studies found a

significant positive relationship between generic

routines (Greening et al., 2007; Pierce & Jordan,

2012), diabetes-related routines, ritual meaning

(Pierce & Jordan, 2012), and adherence to treatment

for diabetes type I reported by parents. Moreover, a

study with adult patients showed that when patients

shared meals with their spouses, they also reported

better diet adherence and glycemic control assessed

via hemoglobin A1c (Franks et al., 2012). Results of a

study combining interview data and assessment of

glycemic control (hemoglobin A1c) showed that

following a nutrition education programme among

women with improved glycemic control, the home

and family routines had changed to adjust to the

condition’s diet and treatment requirements. Finally, a

study using a national representative sample in the US

(Anderson & Whitaker, 2010) found that children

exposed to three routines of regularly eating the

evening meal as a family, obtaining adequate

nighttime sleep and having limited screen-viewing

time had a ,40% lower prevalence of obesity (body

mass index [BMI] $ 95th percentile).

Quality of life and psychologicaladjustment

Studies addressing links between quality of life and

psychological adjustment considered both the suf-

ferers of chronic conditions and the members of their

families. We describe them next.

Patients. The burden of routines related to asthma

was correlated with lower quality of life (Fiese et al.,

2005; Fiese et al., 2008) and anxiety (Fiese et al.,

2008) of asthmatic children. In addition, mothers’

endorsement of ritual meaning and fathers’ endorse-

ment of routines were related to lower levels of

anxiety (Markson & Fiese, 2000). Two studies

identified pathways through which routines and

rituals were linked to children’s adaptation outcomes.

Fiese and colleagues (2008) found that routine burden

was associated with lower quality of life through

mother–child rejection/criticism assessed via a

dyadic interaction task. In Portugal, family ritual

meaning reported by children and adolescents was

associated with better quality of life and lower levels

of emotional and behavioral problems through

perceptions of stronger family cohesion and lower

levels of family conflict (Santos et al., 2012).

Additionally, when families reported having made

fewer adjustments to family routines following a

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child’s liver transplant, children’s quality of life was

higher (Denny et al., 2012). Finally, in the context of

adult chronic conditions, sharing meals with partners

was negatively related to patients’ levels of stress

related to diabetes (Franks et al., 2012).

Family members. The level of routines in the home

as assessed by nurse rankings was linked to better

quality of life in parents and to low levels of asthma-

related burden (Peterson-Sweeney, 2009). While

Peterson-Sweeney and colleagues (2010) did not

find a significant association between specific family

routines related to asthma and parents’ quality of life,

another study showed that the burden of routines

associated with asthma was linked to parents’ lower

quality of life (Fiese et al., 2005). In the context of

pediatric cancer, Manne, Miller, Meyers, and Wollner

(1996) found that although family routine endorse-

ment was related to lower levels of depressive

symptoms, this link did not hold in regression

analyses where other predictors, such as assistance

from spouses, were found to be significant. For

siblings of children with disability in Australia, one of

the factors accounting for the variance in adjustment

difficulties was family time and routines, with higher

levels of the variable being associated with lower

levels of adjustment difficulties (Giallo & Gavidia-

Payne, 2006). For middle adolescents affected by

maternal HIV/AIDS in families endorsing more

family routines, several negative outcomes were

found over a 30month period, namely lower rates of

aggressive behavior, anxiety/worry, depressive symp-

toms, conduct disorder behaviors, and binge drinking

(Murphy et al., 2009).

Other health outcomes

Research included in this review also addressed

other health outcomes, such as disordered eating, sleep

issues, and health-related whole-family variables.

Mellin and colleagues (2004) found that families

with adolescent girls with type 1 diabetes, who

presented disordered eating behaviors, were more

likely to have a high level of meal structure, including

more frequent family meals. A telephone-based diary

study with 47 families of children with asthma allowed

examining whether over a period of one year

fluctuations in family dinnertime and bedtime routines

(among other variables) distinguished nights when

childrenwoke up from nights when they did not (Fiese,

Winter, Sliwinski, & Anbar, 2007). The findings

indicated that while disruptions in dinnertime routines

were not associated with nighttime waking for

children, disruptions in bedtime routines showed a

significant association. Parents reporting a deviation

from the bedtime routine’s schedule within a 24 h

period were 66% more likely to report their children

waking up during the night. An intervention study

aimed at reducing sleep problems in children with

ASD and fragile X syndrome included parental

establishment of a bedtime routine previously

discussed with a therapist. Three out of 10 children

showed positive changes in sleep after the introduction

of a bedtime routine (see Weiskop, Richdale, &

Matthews, 2005 for detailed results); for the majority

of the participants positive changes took place only

when extinction techniques (removing reinforcement

to reduce a behavior) were implemented. The study did

not report if there were interaction effects between

bedtime routines and extinction techniques.) With

regard to variables at the family level, Bush and

Pargament’s (1997) patients with chronic pain and

their spouses were asked about their perceptions of

positive effects of chronic pain on family life (e.g.,

“The chronic pain experience has positive effects on

our family”) and patients reported about positive

effects on themselves. Results showed that spouses’

scores on ritual meaningwere positively linked to their

perceptions of positive family outcomes with regard to

chronic pain. Additionally, dyadic effects were found:

When spouses reported clear duties and routines,

patients perceived more positive outcomes for

themselves and their families with regard to chronic

pain. Finally, Pierce and Jordan (2012) found that for

youth with type 1 diabetes both the routines related to

diabetes and the generic ritual meaning and routines

were associated positively with family supportive

diabetes-specific behaviors and negatively with non-

supportive diabetes-specific behaviors.

DISCUSSION

The literature on family routines and rituals in the

context of chronic conditions revealed that these

family universals undergo changes according to the

characteristics and course of a specific condition, that

they perform important functions for families, and

that they are associated with health and adaptation

outcomes for patients and family members.

Research examining the impact of a chronic

condition on family routines and rituals entailed

comparisons between families (healthy families vs.

families with a member with a chronic condition;

families at different points of the spectrum of a

condition’s severity) and within families (comparing

the present moment to the prediagnosis stage).

Findings for comparisons among families were mainly

provided by a small number of quantitative studies.

Themost common result was the absence of significant

differences. However, when differences did occur,

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they were circumscribed by specific settings of family

life and showed that families living with a chronic

condition, especially when the condition’s severity

was higher, engaged less in family routines and rituals

than healthy families. Although preliminary, these

results indicate that some, but not all, familiesmight be

at risk for lower levels of investment in routines and

rituals, and consequently for lower benefits identified

for families engaging in these events.

A more complex picture emerged from qualitative

studies addressing within-family changes through the

course of the condition. In accordance with literature

(Reiss, 1982; Steinglass, 1998), the postdiagnosis

phase, especially in life-threatening conditions such

as cancer, was a time where some routines and rituals

were interrupted, and others had to be altered to meet

life’s new reality. As the families went through an

adaptation period, the organization of their routines

and rituals in the fabric of family daily life reached a

new stability in the chronic “long haul” stage

(Rolland, 2003). However, achieving a new stability

in this stage was particularly difficult in the context of

certain conditions that, due to their idiosyncratic

characteristics, interfered more closely with family

life. Two examples were pediatric ASD and diabetes.

The unpredictability associated with ASD interfered

with the frequency and regularity of family and

household routines and the enjoyment and meaning of

family rituals. Although families of children with

ASD relied on regular routines and rituals to organize

family life, they could not be certain that these events

would go smoothly, and adopted a “day by day”

approach, which was considerably taxing for every-

one involved, including the ASD child. A breach of

expectations occurred when typically enjoyable and

emotionally rich occasions, such as outings and

gatherings with extended family, had to be restricted

and often revolved around the child’s needs.

Literature on family rituals has shown that these

events are formed by both closed and open parts; e.g.,

invariant parts that embody familiar and known

components of rituals and provide a structure to fluid

and open parts, which allow room for change and

foster rituals’ flexibility across time (Roberts, 2003a).

In the case of families of ASD children, a desired

balance between these parts was difficult to achieve;

the introduction of new elements was usually

disrupting for the child, impairing the desired

spontaneity for other family members associated

with family events. In the case of diabetes, necessary

changes in mealtimes were difficult to implement,

especially if they interfered with intergenerational

traditions conveying special meanings associated with

food. The closed parts of family rituals (e.g. eating a

special dish)—those that cannot be changed in order

to assure the meaning is retained during these

events—collided with the condition’s regimen,

creating a recurrent tension for patients and their

families.

Reaching beyond the traditional exclusive focus on

disruption and chaos in the family following a chronic

condition diagnosis, studies included in this review

also shed light on the positive impact of the condition

on families’ routine and rituals. Findings support the

key role of routines and rituals in family health; given

the interdependence among family members, when a

patient adopted new healthy behaviors (e.g., healthy

diet), the whole family could benefit from the change.

The adaptation and creation of new routines and rituals

signaled that the family was successfully coping with

the condition by responding to new demands in a

proactive and resourcefulway. The fact that families of

the chronically ill spontaneously invented new

elements or totally new routines and rituals supports

the idea that these are natural resources that families

make use of when facing not only the expected but also

the unexpected transitions across the life cycle. In sum,

evidence demonstrates that a chronic condition affects

family routines and rituals and that this impact can

include both positive and negative changes as

perceived by families. Given the heterogeneity of

research in this field, in order to understand and map

out the nature and extent of this impact, it is critical to

assess the interactions among the characteristics of the

condition, the condition’s phase and the patient’s and

the family’s developmental phases.

Three main functions of family routines and rituals

were identified via interview-based studies. Family

members perceived them as strategic resources to

manage the condition; they allowed the expression of

emotional support, and provided a sense of normalcy

countering the condition’s idiosyncrasy. The first two

of these functions correspond to the mechanisms

proposed by Fiese (2006), by which routines and

rituals contribute to health outcomes. Families are seen

as the privileged context for informal caregiving of

children and adults with a chronic condition. When

new demands are introduced, the family must

reorganize itself in order to incorporate new tasks in

daily lives, such as changing their shopping and

cooking habits to adhere to a new diet, learn to perform

new procedures (e.g., injections), keep the house clean

or restructure their schedules to adjust to medication

intake. Research showed that families strategically

used routines and rituals, both old and new, as

resources to promote and monitor health-related

behaviors (Fiese, 2006). In the case of pediatric

ASD, routines and rituals were used as resources to

deal with the child’s specific need for predictability in

the household schedules.

Routines and rituals were also identified as

opportunities for emotional support exchanges

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among family members, corroborating Fiese’s (2006)

view of the role of involvement and connection in

ritual events. Studies included either routines and

rituals or rituals alone, making it difficult to determine

whether emotional support was a specific function of

rituals or could be also attributed to routines. Given

that certain settings can include both routine and ritual

elements, it seems legitimate to expect, considering

literature on the domain (Fiese, 2006), that emotional

support was derived from the symbolic meaning that

characterizes rituals. Unfortunately, routines and

rituals in family settings can be particularly difficult

to distinguish in data from interviews not specifically

designed for this purpose. Studies revealed that

emotional support was conceptualized at the family’s

systemic level; both patients and other family

members received and provided support from and to

one another. Rituals involving caregiving, for

example, were mutually beneficial for the patient

and for the caregiver. It is possible that ritual

interactions provide a framework of meaning that

buffers the burden often associated with caregiving

tasks. The enactment of meaningful rituals was also a

way for families to find support and containment for

strong emotions (Roberts, 2003a, 2003b), which was

particularly relevant in life-threatening conditions

such as cancer. Emotional support was strengthened

by old regular rituals and also by newly developed

ones that differed widely across families and

conditions. The way family members used rituals to

cope with the condition and to meet higher demands

of emotional support from one another was unique to

each family, in keeping with the views that rituals are

creative acts (Cheal, 1988) that encapsulate family

identity (Fiese, 2006).

Finally, this review identified a new possible

mechanism linking routines and rituals and health

outcomes for families dealing with a chronic

condition, namely providing the family with a sense

of normalcy. The onset of a chronic condition before

late adulthood is an unexpected life transition for

which families and, often, extended support systems

are not prepared. Due to the condition’s challenges,

certain developmental tasks may be compromised or

delayed, such as growing autonomy for children and

adolescents and full exercising of parenthood for

adults. Families experiencing non-normative devel-

opmental contexts of chronic conditions need

reassurance that they are handling the illness normally

(Rolland, 2003) and that such handling can be

achieved by carrying out routines and rituals. On one

hand, the universality of these events allows the

family members perceptions and feelings of being like

“any other family” (including their own family before

the onset of a chronic condition); on the other hand,

the choice families have in designing their own

routines and rituals allows each family to attend to

their specific needs and unique characteristics.

The majority of quantitative studies included in this

review conceptualized routines and rituals as influential

factors affecting a range of health and adaptation

outcomes. This approach and the resulting findings

confirm the shift in the research into chronic conditions

from a pathologizing view of family dynamics

associated with negative health outcomes, such as

poor adherence, to a view of healthy family coping and

adaptation (Rolland, 2003). Specifically, research has

found consistent links between routines and rituals and

better adherence to treatment, such as medication

intake, controlling exposure to triggers, and compliance

with dietary restrictions. Moreover, when families

invested more in routines and rituals, the clinical

outcomes such as glycemic control (diabetes), inflam-

matory markers (asthma), and BMI (obesity) were

better. As hypothesized by some scholars, it is possible

that routines and rituals are linked to better clinical

outcomes via their positive effect on adherence and

overall healthy behaviors; however, further studies are

warranted for more solid conclusions. It is noteworthy

that one study provided contradictory evidence by

identifying routines and rituals (e.g., going away on

holidays) as barriers to a regular medication intake

(Roberts, 2005); however, it is possible that the findings

of this study refer to situations where there is a lack of

integration of the condition’s demands into the daily and

exceptional eventsof family life. For routines and rituals

to actually work as strategic resources it is important

that families adapt them in a purposeful way. Taken

together, research supported the idea that adherence and

disease control are awhole-family affair; for both adults

and child patients, family members were involved in or

encouraged the accomplishment of necessary tasks.

Mirroring the findings of research on normative

processes of development (e.g., Fiese et al., 2002;

Spagnola & Fiese, 2007), engaging in routines and

rituals was associated with increased quality of life,

psychological adjustment and other outcomes, such as

healthy eating and sleeping patterns in families coping

with a chronic condition. However, given that literature

has shown that patients with a chronic condition and

their families may be at special risk for adjustment

difficulties, quality of life and overall health and

wellbeing, these findings highlight the importance of

routines and rituals as valuable resources to be

especially utilized by these particular families.

Research critique: Strengths, gaps, andfuture directions

This review included a wide range of research from

different domains, using distinct conceptual back-

grounds to formulate hypotheses and interpret

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findings, as well as different methodological

approaches. This heterogeneous body of research

provided a rich picture of routines and rituals in the

context of chronic conditions, yet some gaps and

caveats need to be identified. A major concern is the

need for studies to outline operational definitions of

the constructs and a clear conceptual distinction

between routines and rituals. Given that family

settings (e.g., mealtimes, bedtimes) can include both

routine and ritual elements, it is crucial that future

research clarifies which dimension is being assessed

and provides information about how the use of a

specific methodology allows the distinction to be

made. For quantitative studies, it is important to use

validated assessment instruments with known psy-

chometric qualities, in preference to indexes gener-

ated for individual studies. For qualitative studies one

possible fruitful avenue is to include questions about

the symbolic meaning of family interactions, the main

feature that distinguishes rituals from routines.

Most of the reviewed qualitative research focused on

the impact of a chronic condition on the family and on

understanding how routines and rituals played key

functions for families. In contrast, the quantitative

studies examined mainly the outcomes in terms of

health and adaptation. Research establishing links

between processes and outcomes would be advan-

tageous for advancing our present knowledge. One way

of achieving this goal is via mixed-methods studies

designed for that specific purpose. The use of mixed

methodology is still scarce; in this review, out of 39,

only three studies used this approach.Anotherway is via

the examination of possible mediation mechanisms

linking family routines and rituals to specific outcomes.

The identification of these mechanisms can be derived

from theory (cf. Fiese, 2006) and from qualitative

research findings that could then be examined in

quantitative studies. A feedback dialogue between

theory and data derived from studies conducted with

different methodologies seems a fertile way forward.

Quantitative research has conceptualized routines and

ritualsmainly as influential factors; e.g., predictors—an

approach that is theoretically supported. However, the

majority of studies used cross-sectional designs and so

issues remain concerning the direction of causality

between routines and rituals that need to be addressed in

longitudinal research. In addition, research has seldom

examined predictors of family routines and rituals; e.g.,

we know very little about what factors explain why

some families differ in how rapidly and adequately they

are able to transform their existing routines and rituals

and create new ones to address the demands of the

condition. It is legitimate to expect that prior whole-

family dynamics such as flexibility, conflict, cohesion

(see Crespo, Kielpikowski, Jose, & Pryor, 2011) or

relationship workingmodels (Crespo, Davide, Costa, &

Fletcher, 2008; Leon & Jacobvitz, 2003) interact with

the chronic condition’s characteristics to explain

processes of change in family routines and rituals over

the course of the disease. Further research addressing

this gap will be particularly illuminating to identify

families at risk of poor functioning and adaptation

following the diagnosis of a chronic condition.

In our review, we identified only three intervention

studies. One randomized control trial showed that

family time and routines improved after a 6-week

psychoeducational intervention with Australian sib-

lings of children with a disability/chronic condition

and their parents (Giallo & Gavidia-Payne, 2008); one

Australian study provided modest evidence for the

efficacy of bedtime routines in addressing sleeping

problems (Weiskop et al., 2005), and a US study

described positive results in relation to the use of

rituals in painful medical procedures (Ott, 2005).

These studies do not allow conclusions about the

utility of routines and rituals as intervention tools.

Nonetheless, they encourage future research to

explore this avenue. A growing body of research

shows the relevance of routines and rituals in both

normative and non-normative family contexts. Thus,

there is support for creating and evaluating empiri-

cally based interventions promoting families’ adap-

tation through the use of these resources.

This review highlighted two skews in the existing

research. More studies have been conducted in the

context of pediatric chronic conditions compared to

chronic conditions in adulthood, andmore research has

been conducted on chronic physical conditions than on

mental health problems (in this review only studies on

pediatric ASDwere included). The first skewmight be

explained by contextual reasons; family influences on

children with a chronic condition have received more

empirical attention than adult patients and, in addition,

research on the role of routines and rituals has mainly

examined their benefits for children’s and adolescents’

development. Nevertheless, the theoretical compasses

offered by routines and rituals provide frameworks for

examining their importance for the health and well-

being of individuals in other developmental stages,

such as adulthood and old age, and, consequently,

future studies with adult patients are recommended.

The reasons for the second skewmight include the fact

that the topic of family routines and rituals, although

not new, has received increased attention only recently

(Fiese et al., 2002), and that traditionally, research has

focused mainly on negative family dynamics (e.g.,

conflict, enmeshment) as risk/vulnerability factors for

mental health problems.

A noncategorical approach to chronic conditions

(Stein & Jessop, 1989) affirms that there are common

challenges and demands associated with different

conditions, with findings of this review showing that

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routines and rituals play key functions and are

associated with positive outcomes in the context of all

those that were assessed. Even so, it was also possible

to identify distinct aspects that were unique to each

condition. This implies that future research should

maintain efforts to understand how routines and

rituals can be differentially affected by each condition

and what associations exist with disease-specific

outcomes. The way family routines and rituals

function in the diversity of conditions in terms of

their onset, course, expected outcomes, and degree of

incapacitation (Rolland, 1987, 2003) is yet to be

addressed. Moreover, future research can also benefit

from mapping out the specific functions and benefits

of generic routines and rituals, such as the ones

present during mealtimes and bedtimes, which exist in

every family and those of disease-related interactions,

as it is likely that both offer unique contributions to

patients and their families. Finally, regarding samples,

future research would benefit from including a more

diverse range of participants in respect of age,

parental gender, and family structure (single, step and

extended families), among other characteristics, in

order to examine the importance and benefits of

routines and rituals for different individuals and

families. Given that routines and rituals are embedded

in families’ wider ecological backgrounds, the

broadening of research to participants from different

ethnic and national origins would be of special

relevance. In addition, crosscultural research could

provide a more complex insight into differences and

similarities among families from various cultural

environments in dealing with a chronic condition.

CONCLUSION

The goal of this review was to investigate how

empirical literature has conceptualized and examined

family routines and rituals in the context of a chronic

condition. Findings support scholars’ advocacy of the

study of these family interactions. Fiese and

colleagues proposed that one of the reasons why

researching family routines and rituals was informa-

tive was that these events highlighted the intersection

between individual- and family-level factors (Fiese,

2006; Fiese et al., 2002). Studies in this review

illustrated how a chronic condition in one family

member affects the whole family, by impacting on

whole-family interactions such as family routines and

rituals. Second, studies also revealed that routines and

rituals played key functions for families and were

associated with positive outcomes in health and

psychological domains for patients and family

members, demonstrating how whole-family inter-

actions can affect family members individually.

According to Rolland (1987, 2003), when facing a

chronic condition, a basic task for families is to create

a meaning for the illness situation that preserves their

sense of competency and mastery. Studies included in

this review provided evidence for claiming that

routines and rituals are natural resources available to

families to achieve such a task. Similarly to Rolland’s

(2003) view on cohesion, routines and rituals should

not be conceptualized as intrinsically healthy or

unhealthy (Spagnola & Fiese, 2007), with the

question to be asked being “What routines and rituals

will work for this family with this condition?” When

and if families are successful in the process of

introducing necessary changes to these events

embedded in their family lives, the regularity of

routines and the meaning of rituals provide a sense

of mastery over the condition via the achievement of

positive outcomes. At the same time they sustain a

family’s identity throughout time, linking the family’s

past, the present, and the expected future. Finally,

implications of this review provide further evidence

for the relevance of family-centered care in the

context of chronic conditions, an approach that

privileges sharing information with patients’ families,

supporting their decision making and respecting their

choices. For better or for worse, the patient is not

alone in dealing with a chronic condition; families can

be sources of strain as well as providers of positive

resources. Routines and rituals, as potentially

modifiable factors at the family level, emerge as key

factors to consider in the understanding and treatment

of chronic conditions, a worldwide public health

concern.

Manuscript received December 2012

Revised manuscript accepted April 2013

First published online July 2013

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