Journal of Womens Health, Issues and Care ISSN: 2325-9795

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Research Article, J Womens Health Issues Care Vol: 5 Issue: 6

Problems Reported by Adult Daughters in Caring for Parents with Stroke

Victoria Steiner1*, Lisa S. Sommer2, Cheryl Gies3, Katelyn Hefflinger4, Carrie Skrzyniecki4 and Linda L. Pierce4
1College of Health and Human Services, University of Toledo, 3000 Arlington Avenue, Toledo, Ohio, USA
2ProMedica Physicians Cardiology, 2940 N. McCord Road; Toledo, Ohio, USA
3College of Nursing, University of Toledo, 7906 Clover Creek Road, Maumee, Ohio, USA
4College of Nursing, University of Toledo, 3000 Arlington Avenue, Toledo, Ohio, USA
Corresponding author : Victoria Steiner
Associate Professor, University of Toledo, College of Health and Human Services, 3000 Arlington Avenue, Toledo, Ohio, USA
Tel: 419 383 5647
Fax:
419 383 5880
E-mail: [email protected]
Received: August 08, 2016 Accepted: November 08, 2016 Published: November 13, 2016
Citation: Steiner V, Sommer LS, Gies C, Hefflinger K, Skrzyniecki C, Pierce L (2016) Problems Reported by Adult Daughters in Caring for Parents with Stroke. J Womens Health, Issues Care 5:6. doi: 10.4172/2325-9795.1000252

Abstract

Seventy-three caregivers of stroke survivors were interviewed about challenges/problems they experienced in the first year of caring. For this secondary data analysis, only the problems of the adult daughters (n=13) were examined for two time periods (months 0-6 and 7-12) using Colaizzi’s method of content analysis and drawn to Friedemann’s framework of systemic organization. Three themes emerged: 1) witnessing a parent’s condition (in Friedemann’s terms system maintenance; consistent throughout the year), 2) balancing the challenges of the caregiver role (system maintenance/ individuation; more evident in months 7-12), and 3) feeling physically, emotionally, and mentally drained (system maintenance; more visible in months 0-6). Findings offer healthcare providers a clearer picture of the problems daughters report and may lead to targeted interventions and ultimately improved overall health.

Keywords: Adult daughters; Caregiving; Stroke; Problems; Qualitative research

Keywords

Adult daughters; Caregiving; Stroke; Problems; Qualitative research

Introduction

Stroke is an acute medical condition affecting the neurological system and is the fifth leading cause of death in the United States. Every year about 795,000 Americans suffer from a new or recurrent stroke [1]. Stroke is sudden and often traumatic, and its results affect both the person suffering a stroke and family members providing care [2]. More than half of family caregivers (60%) are female [3]. Eighty-five percent of informal caregiving is for a relative and nearly half (49%) of caregivers provide care to their own parent or a spouse’s parent. There are emotional, physical, and psychological ramifications of taking care of a person with a long-term disability [4]. This new caregiver role tends to be overwhelming. Family caregivers may experience feelings of burden, resulting in increased stress, depression and physical health problems [2].

Review of Selected Literature

Several studies examining caregivers of stroke survivors’ emotional strain have found symptoms of depression, anxiety, sleeping issues, emotional disturbances, and decreased quality of life [5-7]. The rapid transition to the caregiver role when a family member suffers a sudden stroke presents many challenges for these new caregivers. A majority of female caregivers taking care of a parent following a stroke are also trying to balance time with their spouses and children at home. King et al. [8] in a qualitative study of stroke caregivers, found specific challenges or problems related to interpersonal disruptions, sustaining self and family, and stroke survivor functioning. In similar studies over the past decade, caregivers expressed concern about the safety of their loved one and difficulty managing co-morbid conditions [8-10].
The prevalence of female caregivers has been established, yet there are few studies that focus specifically on adult daughters of stroke survivors and their problems in caring. Increased time spent on caregiving tasks and lack of reaching out for help was more prevalent in caregivers who were adult daughters compared to adult sons in a study based on a long-term care survey by Kwak et al. [11]. In a qualitative study specifically with female caregivers taking care of stroke survivors over a year, narrative data revealed that adult daughters (n=18) struggled with “losing a life that once was, coping with daily burdens, creating a new normal, and interacting with healthcare providers” [12]. Bastawrous et al. [13] identified themes for adult daughters (n=23) over a six-month period related to relationship challenges including concern over parent well-being, changing relationships, and effects on daughters’ physical and emotional health. Bastawrous et al. [14] also found that adult daughters (n=23) suffer from caregiving-related role overload that affects valued relationships including children and spouses, as well as the daughters’ participation in valued activities such as hobbies and work.
Prior studies have revealed problems or challenges that adult daughters experienced in caregiving for a parent, even though that was not the focus of the study. The purpose of this qualitative secondary data analysis was to examine the problems reported by adult daughters in the first year of caring for a parent who experienced a stroke. Additionally, this analysis determined how the challenges changed from the first six months to the second six months of the year as the daughters adapted to their new role as a caregiver.

Method

Design
Participants in this study were a subgroup of informal caregivers in Ohio and Michigan from a primary study (n=73) describing the experience of caring for one year for a family member with stroke. Findings from the primary study have been previously reported elsewhere [15]. This secondary analysis of data focused only on the adult daughters’ (n=13) challenges or problems reported in caring for their parents.
Sample
These daughters were able to read, write, and understand English; they had a telephone connection for participation in bimonthly interviews. Other inclusion criteria were that the care recipient had a new diagnosis of stroke and was discharged to home following rehabilitation treatment. The university Institutional Review Board approved the primary study and the approval was extended to this secondary data analysis.
Data collection
Baseline demographic data were obtained for the participants in the primary study. Data on challenges or problems in caring were collected in a semi-structured interview format that elicited experiences of caring for persons with stroke. Participants were queried every two weeks for a one-year period over the telephone by trained interviewers. Two open-ended questions were asked: 1) What was the biggest challenge? 2) What were other problems? These data were immediately entered into web-based forms.
Data analysis
After data collection for the primary study was complete, the narrative data were cleaned, organized, and then entered as text files into a software management program titled QSR N 5 [15]. For this secondary data analysis, problems reported by the adult daughters caring for a parent with stroke were reviewed in the original transcript. Using content analysis processes established by Colaizzi [16], one investigator independently read all verbatim transcripts of the data to establish a baseline impression of the whole dialogue. She then reread the transcripts and extracted significant statements relating to the problems reported by the adult daughter participants. The statements and explanations of the participants were coded by this investigator and compared between the first half of the year and the second half of the year (months 0-6 and months 7-12). Then, the investigators collaborated and discussed differences until a final agreement was obtained. Friedemann’s [17,18] theoretical framework of systemic organization was applied to the themes that emerged. All investigators were involved for content clarification, refinement, and concurrence, which enhanced this secondary data analysis. Only then were the results integrated into an exhaustive description of the phenomenon of problems reported by adult daughters caring for a parent with stroke.
Conceptual framework
Friedemann [17,18] perceives the world in systems (environment, individuals, and family) that are constantly striving towards congruence which can be evidenced as health. When energy flow is blocked, incongruence which can be evidenced as burden or problems, is experienced and is unavoidable between interacting systems. Therefore, congruence is ideal, but it is not reality [17,18]. There are four process dimensions: system maintenance, coherence, individuation, and system change which include behaviors to help strive for congruence [17]. System maintenance consists of behaviors that are grounded in tradition, refer to the structure and process of the family, and pertain to organizing and operating the family business [17].In contrast, system change refers to major alterations of system operations that result in shifts within the traditional family value system, requiring the cooperation and agreement of all family members [17]. Coherence refers to emotional bonding and caring relationships among family members [17]. Individuation refers to the family’s promotion of individual learning and changing attitudes, taking in and incorporating information, and sharing opinions and beliefs [17]. The process dimensions of this framework were utilized to illustrate the inner core or meaning stemming from the problems reported by adult daughters caring for a parent with stroke.

Results

Sample
The adult daughters (n=13) were primarily 51-60 years old (46%) and of white, non-Hispanic origin (62%). The majority had received more than a high school education (69%), were currently working full-time while caregiving (54%), and reported their health as “Good” (38%) or “Very Good” ( 31%). These adult daughters were caring primarily for their mothers (69%). The majority of the care recipients were 71-90 years old (69%), of white, non-Hispanic origin (62%), and had a left-sided stroke (53%). In Table 1, a complete profile of the demographic information for the caregiver participants and the care recipients is presented.
Table 1: Demographics of adult daughter caregiver participants and care recipients.
Themes
With 482 data entries reviewed, these data were saturated and expand the knowledge of the problems experienced by adult daughters in the first year of caring at home for parents with stroke. Three major themes emerged.
Witnessing a parent’s condition: Daughters revealed their worry and feelings of insecurity as they stood on the sideline and watched their mothers and fathers condition change or deteriorate. Specifically, physical and mental health changes secondary to the stroke, co-morbid conditions, and behavior and attitude changes, such as lacking motivation, were frequently expressed as problematic. Adult daughters often told of worries about their parents’ disposition, decline in health, and whether or not their parents would improve. Witnessing the condition of their parents caused frustration and feelings of being lost and unable to help struggling or difficult parents. One daughter caregiver shared, “Her physical health is declining; she does not seem to be getting better but worse…” and another said, “I am seeing a progressive deterioration of my mother’s cognitive capabilities especially with disorientation….”
Balancing the challenges of the caregiver role: The challenge of managing all the issues that accompanied the new role and lifestyle of a caregiver was a problem expressed by adult daughters. A majority of the total problems reported dealt with daughters struggling to adjust to their new caregiver role and time constraint issues. This included adapting to the new normal, balancing their own life (and health needs) and time for self, coping with a changed parent-child relationship, feeling abandoned by family members, and making decisions regarding their parents’ care. This was expressed by one daughter who revealed, “Every day is a challenge to see that my mom gets the proper care and medications on time, she is not a challenge but all the tasks of daily living and routine can be.” Another daughter described,”...never ending process resulting in… adaptation for both my mom and me.” Physical tasks of caregiving, household chores, and trying to make certain parents were safe were also key aspects of this theme.
Feeling emotionally, physically, and mentally drained: Emotional, physical, and mental exhaustion secondary to the everyday tasks of caregiving was an obvious problem among the daughters. Taking care of their parent and their own families not only left these women feeling drained emotionally and physically, but at times, hopeless. One daughter noted, “I am having difficulty with having enough energy to keep up.” Feeling exhausted and mentally drained because of a lack of sleep, dealing with the burdens and stresses of caregiving responsibilities as well as everyday chores, and disappointment related to a lack of parental improvement, led to many daughters’ feelings of inadequacy and a lack of motivation to continue with caregiving.
Problems over time: An average of 21 problems per caregiver was reported during the first six months of caring (months 0-6) and an average of 16 problems per caregiver was reported during the second six months (months 7-12). The findings revealed that as time passed, the theme of witnessing a parent’s condition remained consistently apparent throughout the 12 months. The theme of balancing the challenges of the caregiver role was noticeable throughout the year of caring, but more evident in the second six months of caring compared to the first six months of caring. The theme, feeling emotionally, physically and mentally drained, was also seen throughout the year, but more visible during the first six months of caring. Figure 1 illustrates the prevalence of the problem themes over time.
Figure 1: Illustration of the problem themes over time.

Discussion

Stress and burden of caregivers of stroke survivors has been well documented in the literature for over ten years [5,7-10,12]. The limited amount of literature available specific to adult daughters is consistent with the problem themes found in the current qualitative analysis of secondary data, although differences are discovered when examining the themes over time. Additionally, Friedemann’s [17,18] framework and the process dimensions can be drawn to these themes with the assumption that adult daughters strive to achieve balance or find health (congruence in Friedemann’s terms) in their own lives.
Witnessing a parent’s condition
Witnessing a parent’s condition relates to the process dimension of system maintenance. When adult daughters witness their parent in a vulnerable state, their sense of security and safety is threatened; therefore, they conduct behaviors in an attempt to maintain their systems as they once were [17]. Similar to this theme, other studies have found that caregivers often report problems in relation to their parents’ condition post-stroke and the realization of their parents’ uncertain future [12]. Although Bastawrous et al. [13] focused specifically on the parent-daughter relationship and not problems in caring the daughters were experiencing, commonalities with the current study exist in that the daughters in the Bastawrous study also experienced frustration over their inability to meet their parents’ general needs.
Balancing the challenges of the caregiver role
The daughters were dealing with challenges of their new role by trying to preserve their prior lifestyle and relationships (the process dimension of system maintenance). In addition, frustrations of the caregiver role stemmed from the adult daughter attempting to learn about caring for her parent (the process dimension of individuation) and this often caused anger and disappointment. Similar to this theme, Saban and Hogan [12] discussed problems reported by female caregivers associated with balancing the challenges of the caregiver role such as missing personal time, losing a life that once was, feeling abandoned by other family members, coping with a changed relationship with the stroke survivor, coping with daily burdens, and needing support from others. Bastawrous et al. [13] identified that their adult daughters felt the “parent” and “child” roles had reversed and they no longer received the same support from their parent, causing the daughters to experience a sense of loss, which is also consistent with this theme. In Bastawrous et al. (2015) [14] study on caregiver role overload; they found that adult daughters placed their parent’s care before children and spouses.
Feeling emotionally, physically, and mentally drained
Caring for a parent with stroke impacted the adult daughters emotionally, physically, and mentally and left them struggling to maintain basic needs, such as eating, sleeping, and exercising (the process dimension of system maintenance). This theme was consistent with other studies that found that daughters were affected both by the physically demanding aspects of being a caregiver for their parent as well as lack of sleep related to caregiving tasks and anxiety [12,13]. Emotionally the daughters were overwhelmed by all the demands of caregiving and had to give up leisure activities to care for their parent and desired emotional support that they felt they were not receiving [12-14].
Themes over time
Contrary to this study’s finding that witnessing a parent’s condition was consistently apparent throughout the first year of caring, King et al. [8] found that physical, cognitive, and emotional losses or changes related to stroke caregiving in general were more common after four months post-discharge from rehabilitation treatment. King et al. [8] also found that issues relating to caregiver role demands and sustaining self were consistent over time, however, the current study found that balancing the challenges of the caregiver role was more evident after the daughters had been providing care for a while (i.e. months 7–12). The study by Bastawrous et al. [13] showed that emotional well-being improved over time which is consistent with the current findings related to the theme of feeling emotionally, physically, and mentally drained being less evident in the second half of the year.
Strengths, limitations and future research
The credibility of this qualitative study is enhanced by the fact that interviewers for the primary study were knowledgeable of the relevant literature, attended presentations by the investigators and the theorist, Friedemann, and were proficient in the interview process. The biweekly interviews provided a vast amount of data from the caregivers, which enhances reliability. Two former investigators from the primary study with years of expertise in qualitative research were involved in the data collection process, which adds to the overall trustworthiness of this secondary analysis of qualitative data.
A limitation of this study is that the semi-structured telephone interview process for data collection does not enable the participants to share feelings that were not addressed in the questions, nor does it allow for interviewers to clarify answers from the participants. Although the data consisted of a large number of narrative entries, transferability of these findings to other populations of caregivers is limited due to the lack of diversity in the current sample (i.e. adult daughters were predominantly White, college-educated caregivers from Ohio and Michigan). This study could be replicated with a more heterogeneous sample, including caregivers from a variety of ethnic backgrounds or from other settings, states and/or countries, to enhance transferability. Finally, although this was a one-year study, the presence of the process dimension of system change could not be determined as it requires an extensive time period to achieve. A longer study that also identifies how problems were solved could strengthen this research.
Implications for practice
Nurses and other providers are well positioned to assist caregivers of persons with stroke in various healthcare settings and should understand the unique problems of adult daughters caring for a parent and how these problems change over time. Nurses in the acute care or rehabilitation setting can provide proactive support and guidance to daughters prior to discharge of the stroke survivor from these settings. Advanced practice nurses who serve as primary healthcare providers should assess patients’ caregiver status during routine office visits, since many adult daughters regard caring for a parent as simply something one does for an ill family member and do not consider themselves “caregivers.” The Caregiver Self-Assessment Questionnaire is an 18-item measure developed by the American Medical Association to help caregivers identify their own behavior and health risks [19]. With their healthcare provider’s assistance, this questionnaire can help daughters as they make decisions that may benefit both themselves and the parent for whom they provide care. In turn, the questionnaire facilitates the healthcare providers as they work to identify and provide preventive services to an at-risk, hidden population such as caregivers and specifically daughters. It may also improve communication and enhance the healthcare provider-caregiver health partnership. Adult daughters may need to be reminded that their own health and their families are important and cannot be ignored if they want to be an effective caregiver.
Specifically, nurses can help adult daughters cope with their parents’ changing condition by planning targeted mini education and support sessions about common post-stroke symptoms, behaviors, and attitudes. This intervention could help prepare these daughters for the future as they learn to tackle potential caregiving issues. Nurses can facilitate daughter’s desire to accept their parent’s condition prior to focusing on individual caregiver challenges. Information and support should also focus on the physical, emotional and mental challenges a daughter will face in the first six months in an effort to reduce caregiver burden and exhaustion, as well as ways to balance their new caregiver role which may be a greater problem in the later months. Nurses have the educational resources and experience to prepare daughters as they struggle to meet the challenges of their new caregiver role. Resources include respite programs that allow daughters to have some “time off” and activities that allow them to take time for self-care. Adult daughters can be encouraged to reach out to family and friends, as well as paid services, for support and assistance (coherence in Friedemann’s terms). Face-to-face or online caregiver support groups can serve as a supplemental shoulder to lean on and can help these daughters navigate through the recovery process, identifying solutions for difficult financial and psychosocial issues that often occur following a stroke. Knowing what to expect and having a plan can reduce frustration and stress for the adult daughter as well as increase the well-being of the parent with stroke.

Summary

The findings of this secondary data analysis identify specific, theory-based themes of problems experienced by adult daughters during the first year of caring for parents with stroke. These problems could lead to poor health or incongruence in their lives. The information gleaned from this study offers nurses and other healthcare providers a clearer picture of adult daughters’ problems and support needs. Integrating these findings in a timely manner to support adult daughters caring for a parent with stroke, could lead to more targeted/individualized interventions, reduced burden, and ultimately improved overall health or congruence.

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