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The influence of spirituality on family management of Parkinson's disease.

Abstract: This study examined the role of spirituality in defining and managing Parkinson's disease (PD) for people with PD and their families. A content-analysis approach was used to interpret and analyze individual and family interviews from 27 families. Participants primarily were Caucasian dyads representing different geographic areas and socioeconomic statuses. Findings revealed that the ways persons with PD and their families managed the chronic illness were influenced by belief and faith, purpose and meaning, prayer, the support of family and friends, and hope. Healthcare providers need to understand the role of spirituality in influencing ways that persons with PD and their families define and manage the disease and to support people in their efforts.

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Parkinson's disease (PD) is a chronic neurological disorder that primarily affects older adults. According to Waters (2002), approximately 1 million people in the United States have PD. Because of increasing life expectancy among Americans, the number is projected to increase to 1.3 million people by 2040 (Lilienfield & Perl, 1993). PD is a movement disorder that causes tremor, rigidity, bradykinesia (a slowing down or loss of spontaneous and voluntary movement), and postural instability. Besides physical consequences, this chronic illness entails cognitive and psychological deficits. For example, approximately 40% of people with PD also experience dementia. This condition results in debilitation for patients and uncertainties for their families (Habermann, 2000).

Families are faced with managing problems related to activities of daily living (ADLs), communication, and possible death. Interventions are focused on managing Parkinson's-related signs and symptoms and are ineffective in altering disease progression. Therefore, patients and their families must find ways to manage PD. This article discusses findings on spirituality as an influence on the ways in which people with PD and their families manage PD.

Background

Family Management Styles

Knafl and Deatrick (1990) initially proposed the concept of family management style (FMS) to describe a variety of ways in which families respond to chronic childhood illness. The concept has been validated and further developed in a longitudinal study of family responses (Knafl, Breitmayer, Gallo, & Zoeller, 1996). Recently, FMS has been used as a conceptual approach to studying caregiving and care-receiving dyads (Theis, Knafl, Watkins, Biordi, & Coeling, 2000).

FMS comprises three major components: individual family members' definition of their situation, the management behaviors they use with respect to the illness, and the perceived consequences or outcomes. Perceived influences or family members' perceptions of factors influencing the definition and management of the illness are part of the framework (Knafl & Deatrick, 2003).

The concept of spirituality emerged as a major theme during data interpretation in a larger study that explored family management styles for this population. The specific aims of the larger study were the following:

* To identify family management styles in families with an adult member who has Parkinson's disease; specifically, to identify whether FMS, a construct initially identified in families with a chronically ill child (Knafl & Deatrick, 2003), has utility for describing families coping with PD

* To explore whether FMS remained stable over a period of a year

* To explore whether there is a relationship between FMS and overall satisfaction with family functioning, key caregiver-care receiver characteristics (gender, family role), caregiver-care receiver quality of life, caregiver depression, and caregiver burden.

This article focuses on analysis and findings as they relate to the theme of spirituality and the ways in which spirituality influences illness management.

Description of Spirituality

In Granstrom's (1985) study of oncology patients, crisis, illness, or suffering can become a "spiritual encounter, as well as physical and emotional experiences," because individuals perceive a loss of control in their lives, forcing them on a journey to seek "meaning and purpose" (p. 42). Ross (1994) found that illness, suffering, and crisis affected the physical, psychological, and sociological states of being for an individual with PD or a family member, leading to an awareness of spirituality in an effort to find meaning, purpose, and fulfillment. In this holistic interpretation, spirituality gives actual meaning to other states of being, and, in essence, gives both the person with PD and family members the courage to face the illness or mortality.

The phenomenon of spirituality has been described in the literature from several different perspectives. Isaia, Parker, and Murrow (1999) characterized spirituality as being "at the core of one's existence," and found that it "affects, connects, and transcends all aspects of being" (p. 15). Therefore, the "capacity for self-transcendence occurs through a sense of relatedness experienced intrapersonally (as a connectedness within oneself), interpersonally (in the context of others and the natural environment), and transpersonally (referring to a sense of relatedness to the unseen, God, or power greater than the self and ordinary resources)" (Reed, 1992, p. 350).

Studies of Spirituality

Since the early 1980s, interest in the concept of spirituality has increased in many disciplines, particularly nursing. Research endeavors have focused on examining spirituality for terminally and chronically ill patients as well as their caregivers (Daaleman, Cobb, & Frey, 2001; Forbes, 1994; Kaye & Robinson, 1994; Landis, 1996; McNulty, Livneh, & Wilson, 2004; Miller, 1985; Narayanasamy, 2002).

Many studies have revealed spirituality as a coping mechanism to deal with chronic illness. For instance, Miller (1985) conducted a correlational study comparing a convenience sample of 64 chronically ill adults who had a diagnosis of rheumatoid arthritis with a random sample of 64 healthy adults. The study examined the relationship between loneliness and spiritual well-being for these two groups. Although both groups reported a negative correlation between loneliness and spiritual well-being, the chronically ill group reported higher spiritual well-being scores than the healthy group. Miller (1985) concluded that chronic illness stimulated spirituality, which served as a coping strategy. Landis (1996) related the concept of spiritual well-being to uncertainty and psychosocial adjustment among 94 participants with type 1 and type 2 diabetes mellitus. When these individuals identified spiritual well-being as an internal coping resource, psychosocial adjustment was increased and uncertainty was decreased.

A similar study was conducted by McNulty and colleagues (2004), in which 50 participants diagnosed with multiple sclerosis (MS) were examined for a relationship among perceived uncertainty, spiritual well-being, and psychosocial adjustment through the use of the Mishel Uncertainty in Illness Scale, Spiritual Well-Being Scale, and Psychosocial Adjustment to Illness Scale-Self Report. Uncertainty and spiritual well-being were related independently to psychosocial adjustment. Spiritual well-being was found to mediate the impact of uncertainty on psychosocial adjustment, but spiritual well-being was not found to have an interactive effect between uncertainty and psychosocial adjustment. Therefore, psychosocial adjustment was influenced by spiritual well-being, which alleviated the impact of uncertainty on adaptation for the MS population.

The linkage between spirituality and well-being was further substantiated and clarified in another study conducted by Daaleman and colleagues (2001). In this exploratory study, 17 women with type 2 diabetes mellitus and 18 women with no self-identified illness were interviewed in focus groups. The purpose of the study was to gain an understanding of spirituality and its impact on their state of well-being in preparation for developing an instrument to measure spirituality. From these interviews, several themes emerged and were developed into a theory of health-related spirituality. Any form of functional change in the status of the patient resulted in a period of information gathering and processing that was mediated by the person's core beliefs and by personal interpretation and understanding of the life experience. An individual who found meaning had a sense of order and purpose. This sense of order helped the person maintain a structure for life and served as a source of positive intentions. In an additional effort to understand the spiritual coping mechanisms used by the chronically ill patient, Narayanasamy (2002) conducted a descriptive phenomenological study with 15 chronically ill participants who varied in age, gender, religion, and medical diagnosis. These participants were asked to describe their experiences with the chronic illness and their ability to cope since receiving the medical diagnosis. The findings revealed several themes: reaching out to God in the belief that help will be forthcoming; an inner awareness or sense of a presence; a feeling of being connected to God through prayer (regarded as a private and personal resource); the search for the meaning of life and the illness; a strategy of privacy (avoidance of proclaiming religious beliefs and faith); and connectedness with others (support of family and friends). These themes reflect coping mechanisms that helped the participant handle the consequences and challenges their chronic illness presented.

All of these authors found that psychosocial adjustment promoted spiritual well-being. Individuals with chronic illness were more aware of their spirituality and drew upon it as a source of internal coping to deal with the challenges of living with a disease or illness.

Studies of Spirituality in Caregivers of Persons with Chronic Illness

In a descriptive pilot study with 17 caregiver wives of men with dementia and 23 noncaregiving wives of healthy men, Kaye and Robinson (1994) measured the spiritual perspective (spiritual views and interaction) of these two groups using the Spiritual Perspective Scale (SPS). This 10-item instrument measured "participants' perspective of the extent to which certain spiritual views were held and spiritually related interactions were used" (p. 219). The scores found spirituality to aid in coping for both groups; however, caregiver wives had higher scores. A higher percentage of caregivers discussed spiritual matters with friends and family, read spiritual material, and prayed.

Forbes (1994) investigated perceptions of spirituality for both the care recipient and caregiver as "the relationship in the perception of spirituality between the care recipient and caregiver and the influence this may have on their emotional well-being and ability to cope with a chronic illness" (p. 297). Two forms of measurement were used: the Spiritual Well-Being (SWB) scale and the Spiritual Assessment Questionnaire. The SWB scale, a 20-item, 6-point Likert scale, measured the participant's "relationship with God on the Religious Well-Being subscale and satisfaction with life on the Existential Well-Being subscale" (p. 300). The Spiritual Assessment Questionnaire was an interview guide consisting of 10 open-ended questions and used "to survey the attitudes of the care recipients and caregivers about the components of God, spirituality, illness, and prayer" (p. 300). Results revealed a correlation between the caregiver's SWB and the caregiver's perception of the care recipient's SWB. According to this author, a "spiritual bonding" occurred to bring about psychological adjustment, mental health, and increased self-esteem for both the care recipient and caregiver.

The findings of these qualitative and quantitative studies have led to a perception of spirituality as a coping strategy to handle daily living with a chronic illness. As a result, a state of spiritual well-being emerges that promotes an overall sense of well-being (physical, mental, and emotional) for both the individual with the illness and the caregiver.

To date, the spirituality literature has focused either on the individual with the illness or on the caregiver. Only one research article (Forbes, 1994) incorporated the perceptions of both individuals. Spirituality has not been examined in the population with PD, which is a chronic illness progressing into a debilitating state for an individual and a long-term commitment of caring by at least one family member. Spirituality needs to be explored from a family perspective within this population to examine the influence it has on managing PD.

Purpose

As part of a larger study, this content analysis study was guided by this question: Does spirituality assist people with PD and their families in defining and managing the day-to-day experiences of the disease?

Method

Design

Content analysis was the qualitative approach used to guide this study. Intensive interviews collected from the larger study were analyzed for emerging themes and patterns of spirituality. This descriptive, qualitative approach to data analysis assisted in better understanding the role of spirituality in defining and managing the day-to-day experiences of people with PD and their families.

Sample

A maximum-variation sampling technique (Patton, 2002) was used in the larger study, and efforts were made to recruit a diverse sample with regard to age, gender, and duration of illness. Participants were recruited from PD support groups in the southeastern United States and from a movement disorder clinic. These recruitment efforts provided a total of 27 families, consisting of 24 couple dyads, 2 couples with an adult daughter, and 1 mother-son dyad. Following approval by the agencies and institutional review board, consent was obtained from each participant.

Participants (N = 56) primarily were Caucasian, and they resided in both rural and urban locations. They had incomes ranging from less than $20,000 to more than $60,000. The persons with PD and their primary caregivers were similar in age, ranging from 41 to 87 years (M = 71) and 44 to 88 years (M = 72), respectively. Couples had been married an average of 43 years.

The majority (70%) had PD for 6-9 years and had either stage 3 or stage 4 severity. Stage 3 means bilateral disease with balance impairments; stage 4 means moderate to severe disease without being bedbound, as measured on the Hoehn and Yahr (1967) Scale.

Data Collection and Analysis

Data were collected from 2001 to 2003 through separate interviews with each family member followed by one joint interview with each family. Data were collected from 83 interviews. The procedure described by Polit and Hungler (1991) was used to analyze data gathered from both individual and family semistructured interviews. These steps in the procedure were the identification of a theme (a phrase, sentence, or paragraph that personified or made an assertion about the topic) and the development of a category system (to classify units of content). Both individual and family interviews were read several times to identify themes and establish categories. Exemplars were then extracted from the text to illustrate the system of classification.

Procedures to Ensure Rigor

Several techniques are used in qualitative research to ensure that the themes identified and categories established by the investigator are consistent with and accurately represent the thoughts of the participants. In this study, one individual with clinical and research expertise about people with PD and their families examined the findings and interpretations for trustworthiness. Greater rigor was also achieved by subsequent joint interviews of the person with PD and the caregiver that served to clarify areas in previous separate interviews. For validation, findings from the study have been shared with support groups from which participants were originally recruited.

Findings

Five distinct categories emerged from the analysis: depending on belief and faith to manage the situation, providing purpose and meaning in living with PD, establishing a connection with God by praying, establishing a connection with other individuals, and feeling a sense of gratitude and hope.

Depending on Belief and Faith

People with PD and family members spoke about how their belief and faith in God assisted them in dealing with the consequences of this chronic illness. These devout relationships allowed them to handle the many challenges and difficulties of the disease. The following examples taken from the interviews represent this category.
 I reassure my husband that whatever the Lord
 has in store for us, we are going to be able to handle
 it. Live day by day because we do not know
 what tomorrow holds--whatever bad it brings,
 He [Lord] will carry us through. My faith in God
 says things will be all right. (Family Member)

 The Lord will give me the health and strength
 I need to do the things that need to be done to
 help him [husband with PD]. (Another Family
 Member)

 My future is not bright. I make the best of every
 day, every day I look to God. (Person with PD)

 I used to worry about the Parkinson's, but I just
 put it in somebody else's hands. (Person with PD)


For these people, "God" or "the Lord" provided for their needs and allowed them to handle the physical and emotional difficulties and challenges accompanying the disease. A person with PD acknowledged that the strength he received from his faith created an opportunity to interact with others, which had a positive effect on others.
 We are able to encourage other people who are
 having problems such as this or similar problems
 ... by our faith. (Person with PD)


A reciprocal, interactive relationship occurred among God, persons with PD, family members, and others. Faith in God among people with PD and family members gave them strength to encourage individuals facing the same challenges.

Providing Purpose and Meaning

Some of the people with PD and their families said that God had a reason or purpose for the occurrence of the disease. By believing that the disease had purpose and meaning, people with PD and their families were better able to accept the consequences of the illness. Examples of people in this category included the following.
 When God allows things to happen, there is a purpose
 for everything. Like this Parkinson's. [Person
 with PD] might have an effect on somebody that
 is suffering also.... We realize that God will supply
 our needs, we know that nothing happens that he
 isn't well aware of. (Family Member)

 He has a purpose for me, and I will accept whatever
 He has. He doesn't say that you have to like
 it, but ... we have total acceptance that God knows
 what He is doing. (Person with PD)


Through their belief that whatever God gave them had a reason, participants were able to accept their disease and find meaning in having it.

Establishing a Connection with God by Praying

Many of the people with PD and their family members used prayer as a way to communicate their desires and seek guidance in the management of the disease. Some participants asked God for direction and assistance in making decisions that centered on the disease. Some of them asked God to restore or maintain their health or state of well-being.
 Here are some examples.

 I believe my prayers were answered and I was
 assisted in making decisions to move and get
 things in order. (Person with PD)

 I pray everyday to get back to where I used to
 be ... able to do things on my own without somebody,
 you know, having to be with me. (Person
 with PD)

 I pray daily God would just let me live. That is
 what I told my daughter, I said if God would
 just let me live longer than your Daddy then I'm
 ready to go. (Family Member)


People with PD used prayer to assist them in making decisions about personal matters such as finances and possessions. They used prayer to give them the initiative to participate in activities of daily living. Family members used prayer to ask for continued health and strength to handle the physical and emotional consequences of PD. They also used prayer to ask for a longer life to ensure that their relatives with PD would have someone to care for them.

Establishing a Connection with Other Individuals

Only family members of people with PD indicated they found support from friends in their church, while people with PD found support in their family members. Some people with PD were unable to attend church or social activities. Family members referred to people with whom they attended church as their only friends, because social activities were limited to church attendance. These friends provided support beyond social activities. Some of these friends assist by helping in caring for the person with PD, praying with family members, and cooking food, as shown by the following examples:
 Our Sunday school class is the only friends that
 we have.... They [church family] provide prayers
 or whatever is needed.... Good Baptist couples
 cook and bring food by. (Family Member)


Family members got support from friends in the church, particularly individuals in their Sunday school class. During church attendance, family members visited and socialized with these individuals. People with PD noted a difference in their friends' priorities. Their friends were concerned with different issues and participated in extracurricular activities.
 PD has changed the way I see my friends.... Their
 values are different from mine because I now
 have this illness to deal with. (Person with PD)


Feeling a Sense of Gratitude and Hope

Both people with PD and their family members were thankful, viewed their current state of health as a blessing, and voiced hope for the future. They chose to focus on their assets rather than on their deficits. Often, people with PD hoped that the disease would not cause them to deteriorate and that family members would be able to care for them.
 I am blessed, I am blessed ... that I am still able to
 attend church services and Sunday school. (Person
 with PD)

 I thank the good Lord every day that I still have
 the strength to take care of him. (Family Member)


People with PD and their family members were thankful and felt blessed for their ability to handle various activities. As a result of their spiritual beliefs and rituals, people with PD and their families echoed a sense of hope that the disease would stabilize or improve.

Discussion

Many of the people with PD and their family members felt that spirituality was a means of defining and managing Parkinson's disease through a divine or higher power and church, as well as through spiritual behaviors such as praying, being hopeful and thankful, and having support from family and friends in the effort to find meaning and purpose in life. Spirituality was a way to cope with the disease for the people with PD and their families. Their hopes focused either on maintaining the patient's state of health and well being or restoring their health by eradicating the disease. For many of these people and their families, physical and emotional support came from sources of divine power and church friends, which made them feel thankful, hopeful, and blessed. These findings are consistent with those of other studies of chronic illness that identified spirituality as an important factor in maintaining and restoring health for patients, as well as a coping mechanism for both patients and caregivers (Daaleman, et al., 2001; Forbes, 1994; Kaye & Robinson, 1994; Landis, 1996; McNulty, et al., 2004; Miller, 1985; Narayanasamy, 2002).

The findings from this study, along with previously published literature, support the conclusion that spirituality is a significant influence on the ways in which families define and manage illness. The specific findings from this study suggest that spirituality influences the day-to-day management of the illness and also influences families' sense of their ability to manage the future consequences and potential outcomes of the illness.

As the chronic illness unfolds, people with PD and their families continue to search for meaning and purpose in their lives. Several themes emerged from this study.

First, healthcare providers need to be aware of the spiritual beliefs, rituals, values, and perceptions of people with PD and their families. Healthcare providers' acknowledgment of spiritual beliefs and faith in people with PD and their families provides a means of handling the challenges and difficulties of the illness.

Second, healthcare providers must support people with PD and their families to search for the meaning and purpose of the disease. The consequences of the disease may be better accepted by people with PD and their families who realize the disease can have meaningful effects on their lives.

Third, healthcare providers must support people with PD and their families who use the spiritual ritual of prayer to participate in this form of communication. Their prayers provide guidance in decision making and management of the disease and express their desires.

Fourth, healthcare providers should encourage people with PD and their families to be involved with friends through church or other social activities. Interactions and relationships with friends and family provide an opportunity for people with PD and their families to receive both tangible and nontangible support.

Fifth, healthcare providers should help people with PD and their families to be thankful and hopeful, to give them a sense of encouragement. It is imperative for healthcare providers to be sensitive to the needs and well-being of people with PD and their families by gaining a deeper understanding of their spirituality, thus assisting them in managing the consequences of the disease.

This study had certain limitations because it was part of a larger study. Participants In the larger study were recruited with regard to age, gender, and duration of illness, but not spiritual beliefs. If spiritual beliefs had been used as a selection criterion for the larger study, participants might have been more diverse with regard to religion and spirituality. This research was conducted in the Bible Belt section of the United States, where there may be limitations to obtaining a group that is spiritually diverse. In the larger study, data collection focused on disease management styles. Because the concept of spirituality did not emerge until later data analysis, interview questions were limited in exploring the concept of spirituality. Therefore, recommendations for future studies include recruiting a group of participants that is more diverse in religion and spirituality. The findings of such a study could be compared with those of this study. Also, other populations of care recipients and caregivers should be examined to gain an understanding of the role of spirituality in different chronic illnesses.

Summary

The purpose of the larger study has been to assist people with PD and their families in defining and managing the day-to-day experiences of this disease. The trajectory of Parkinson's disease often involves a spiritual experience for both the person with PD and family members. This spiritual experience reveals a form of coping that is evoked by one's own beliefs and faith in a divine presence and is enhanced through relationships with supportive friends and family. Therefore, healthcare providers need to understand the role of spirituality in influencing how persons with this illness and their families define and manage the disease. They need to offer spiritual support to these individuals by acknowledging their beliefs, faith, and rituals.

Acknowledgments

Preparation of this article was supported by a Neuroscience Nursing Foundation grant awarded to the second author. The authors also thank Dr. Joan Grant for her comments on an earlier version of the article.

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Questions or comments about this article may be directed to Vicki Bingham at vbingham@deltastate.edu. She is a doctoral student in nursing at the University of Alabama at Birmingham, AL.

Barbara Habermann, PhD RN, is an associate professor in the School of Nursing, University of Alabama at Birmingham and a scientist at the Center for Aging.
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Author:Bingham, Vicki; Habermann, Barbara
Publication:Journal of Neuroscience Nursing
Date:Dec 1, 2006
Words:4791
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