Journal of Gerontological Nursing

Feature Article 

Ask the Right Questions: What Do Non-Caregiving Adult Children Need From Health Care Providers?

Munira Wells, PhD, RN; Connie Kartoz, PhD, RN, MS, FNP-BC

Abstract

Extended healthy life spans are a relatively recent phenomenon that increase the amount of time families spend with older adults in non-caregiving roles. As the emphasis of health care moves to population health and health prevention, nurses caring for older adults must be knowledgeable about this family life stage. To learn more about the lived experience of non-caregiving adult children, 16 non-caregiving adult children were interviewed. The purpose of the current article is to share what needs non-caregiving adult children have from the health care system as they obtain care for themselves and accompany their parent for health care visits. Content analysis of transcribed interviews revealed three main themes: Lack of Holistic Care, Lack of Effective Communication, and Fragmented Care and Need for Better Care Management. Participants suggested interventions that are patient- and family-centered and culturally safe. Nurses can use findings from the current study to research interventions using family-centered care strategies to improve health outcomes for older adults. [Journal of Gerontological Nursing, 44(5), 26–31.]

Abstract

Extended healthy life spans are a relatively recent phenomenon that increase the amount of time families spend with older adults in non-caregiving roles. As the emphasis of health care moves to population health and health prevention, nurses caring for older adults must be knowledgeable about this family life stage. To learn more about the lived experience of non-caregiving adult children, 16 non-caregiving adult children were interviewed. The purpose of the current article is to share what needs non-caregiving adult children have from the health care system as they obtain care for themselves and accompany their parent for health care visits. Content analysis of transcribed interviews revealed three main themes: Lack of Holistic Care, Lack of Effective Communication, and Fragmented Care and Need for Better Care Management. Participants suggested interventions that are patient- and family-centered and culturally safe. Nurses can use findings from the current study to research interventions using family-centered care strategies to improve health outcomes for older adults. [Journal of Gerontological Nursing, 44(5), 26–31.]

Global data suggest individuals are living longer, more active lives than ever before (United Nations Department of Economic and Social Affairs, 2015). As life spans continue to expand, families can expect 14 years of healthy life after a parent turns 65 (Colby & Ortman, 2014). Due to the emphasis on increasing nursing's role in primary care (Smolowitz et al., 2015), nurses will need to understand this lengthening family life stage and the perceived needs of family members during the early aging process to support healthy outcomes for older adults. Whereas much is known about families in the caregiving stage of family development, little is known about the qualitative experience of non-caregiving families.

Social gerontology and family life course literature provide insights into families in this healthy but later stage of life. There is a robust set of literature, mostly quantitative, focusing on the Intergenerational Solidarity (IGS) framework, which provides understandings of how parents and their adult children exchange emotional and functional supports over time. Fingerman, Sechrist, and Birditt (2013) suggest that the quality of the relationship affects the number of supports exchanged, which in turn influences the quality of life; thus, a “good” relationship with more supports ultimately improves the quality of life for parent and child. Family life course literature indicates that family members work through a variety of tasks as parents age but remain healthy. The older adult and adult child begin to focus on the next generation, solidify their own life philosophy, and nurture existing relationships (McGoldrick, Preto, & Carter, 2016). Other studies note that adult children feel anxiety about meeting potential caregiving needs as they simultaneously attempt to separate from and accept their parents for who they are as aging adults (Birditt, Fingerman, Lefkowitz, & Kamp Dush, 2008; Blenkner, 1965; Murray, Lowe, & Horne, 1995). Some of this literature is dated and represents a time prior to extended healthy life spans. Furthermore, Fingerman et al. (2013) note that there is limited qualitative exploration of the non-caregiving experience of adult children with healthy parents 65 and older.

Given the Hartford recommendations on providing patient-centered care that considers the family system (American Association of Colleges of Nursing & The Hartford Institute for Geriatric Nursing, 2010), it is important for nurses to understand expanded life spans using a family-centric approach. The current article presents findings from a larger qualitative study about the experiences of noncaregiving adult children of healthy aging parents (Kartoz & Wells, 2017). The intent of the current article is to report findings from the part of the research project in which the authors focused on understanding adult children's needs from health care providers (HCPs) in relation to their health and their parents' health.

Method

A qualitative descriptive approach was used to explore the experience of adult children with aging parents, specifically with regard to HCPs and systems.

Participants and Procedures

Recruitment of participants began after obtaining Institutional Review Board (IRB) approval from the researchers' academic settings. Participants were recruited using flyers posted in local libraries and through word of mouth. Snowball and purposive sampling were used until data saturation was reached (N = 16). Participants were included in the study if they had at least one living parent older than 65 and self-identified as non-caregivers.

Sixteen participants, mainly White (62%) women (75%) ages 39 to 60 were interviewed. Most participants were married (81%), resided on the eastern coast of the United States, and had at least one child or stepchild. Most participants had parents older than 70 who lived at least 1 hour away from them. Two participants had parents who resided overseas. All participants had at least one parent who was healthy and independent. In the few cases where one parent had cognitive or physical limitations, the other parent was the primary caregiver.

Participants were interviewed in a place of their choosing, which was generally their home, work place, or the library. Informed consent was obtained before the first interview. Participation was voluntary with no penalty for withdrawing at any point during the data collection process. All interviews were recorded and lasted from 45 to 75 minutes. The same researcher conducted both interviews for a given participant. Confidentiality and anonymity were ensured by de-identifying data and limiting access of recorded and transcribed data to the two investigators and one IRB-approved transcriptionist.

Interviews began with the broad question, “What is it like to have a parent over the age of 65?” The current article draws on information elicited from one open-ended query: “What can HCPs do to help you in this life stage?”

Data Analysis

Researchers independently read and performed line-by-line analysis and coding of each interview, then met for a joint review. Independent codes were refined until a joint understanding of the data emerged. Data analysis was an iterative process, involving constant comparison and identification of similarities and differences in the data. Data related to HCPs and future concerns about parents' health, and health care needs were identified to gain insight into the role that HCPs play in caring for aging families.

Results

Adult children's experiences with and perceptions of HCPs in the care of older adults who were healthy, functional, and cognitively intact were varied, but common themes included Lack of Holistic Care, Lack of Effective Communication, and Fragmented Care and Need for Better Care Management. HCPs included physicians and nurses, often advance practice nurses or nurse practitioners (NPs).

Lack of Holistic Care

Participants were frustrated that HCPs failed to consider the whole person. Participants' aging parents' strengths and individual needs were not acknowledged. HCPs made decisions based on patients' age rather than assessing specific needs of patients. One participant expressed frustration that her mother was not listened to, stating, “Her issues have been more around people listening to what she knows about the body that she's been in for 84 years.” When a HCP adopted a holistic approach, it was noted and appreciated. One participant said, “I think nurse practitioners are wonderful. Whenever I come across them, they're much different. The training or what, or why, they are much more helpful to the patient as a person, not just the illness or the disease.” Statements such as these validate the role of NPs and emphasize the importance of an approach that recognizes patients as individuals.

Inaccurate Monitoring of Changes in Parent. Participants worried that HCPs focused on acute problems, and overlooked the larger picture. For example, participants stated, “They don't exactly ask the right questions,” or “There's definitely more information that needs to be [gathered about] activity level, health, mental health issues.” Some participants believed that gradual changes in their aging parents were not monitored carefully enough and that subtle signs of decline were missed: “They haven't really been tracking her cognition…I just wasn't satisfied with how that was happening.” Participants stated that they want “someone who…is keeping tabs on decline/changes.” Inability to carefully track functionality led to erroneous assumptions or inaccurate assessments about a patient:

My mom has a slight speech impediment, always had, and so when she had that accident and was in a lot of pain, I went to the doctor. “She's in pain—is there anything else you could give her?” He said, “Well, she's already slurring her words.” I said, “That's how she speaks.”

Inadequate Assessment of Family Dynamics. Participants thought it important that HCPs assess the family structure and identify the presence of an estrangement between family members. This assessment would help determine the presence of support as well as whether estrangement was a source of stress for the older adult. Participants stated, “There's got to be an understanding of the family members,” and “Just having a good relationship with your kids is not the same thing as sharing [e.g., information, resources, support].”

Inability to Consider Cultural Differences. Understanding an aging patient's cultural and spiritual beliefs and practices, and being aware of how these beliefs and practices may affect even simple activities, is important. One participant relayed the experience of a parent visiting the United States from another country. While in the United States, the participant's father was hospitalized following a stroke and asked to recite sayings to test his cognition.

They tell you, recite something that you know very well by instinct, like ABCs, or, you know, like Happy Birthday. So they tried to get him to say that. My dad is not really a happy birthday singer. He doesn't recite ABCs on a normal basis. But then like when my cousin…came over, he said, “Can you say the Kalma?” Because that is something that you just know. And he said it and it came so easily to him. So it's just the cultural context is important.

Thus, the participant's father, whose first language was not English, struggled to recall simple phrases and words. However, when asked to remember culturally appropriate information, he was able to do so without deficit. Consideration of cultural differences is particularly important in light of changing demographics and frequency of global travel.

Lack of Effective Communication

Communication shortcomings were a source of significant dissatisfaction for participants. Parents, whether accidentally or by design, were not always forthcoming with information, and participants were often unable to access medical information from HCPs bound by Health Insurance Portability and Accountability Act (HIPAA) regulations.

Although participants understood the need for patient privacy, adult children believed it was more important that the family knew what was going on with the parents. A participant observed that, “I thought about, you know, if you're getting up in a certain age should you have somebody else at least as a back-up…but then are you invading privacy?” Statements such as “if she goes to the doctor we all need to really make sure that we can find out what meds did they put you on” and “with the health care community the way it is, [you can't] contact a nurse or social worker. As a daughter, I have no right to any information” exemplify the conundrum faced by adult children who want HCPs to respect their parents' ability to self-govern, even as they struggle to accept their own bystander status in these scenarios.

Furthermore, when communication occurs, it does not always meet the needs of adult children. One participant stated, “I don't want to be BSed, so to speak. Don't ask me to smell the roses. Just tell me. Speak the language that I understand because I don't understand these large [terms]. Just tell me. Communicate with me.” Participants want HCPs to actively listen to and hear their parents and themselves, once again underscoring family involvement in care.

Fragmented Care and Need for Better Care Management

Participants noted that health care systems were complex and provided fragmented care. One participant said, “There are a lot of different players and it's complicated, and it's very broken down…it's not easy.”

Lack of Expert Guidance. Adult children lacked knowledge of resources available to them and expressed the need for support from someone well versed in geriatric issues. “At some point you just need someone who knows what to do and knows the legal issues and knows the finances,” said one participant. Another participant wondered:

[Perhaps] it would sort of ease the path if there was somebody who was clearly trained in those systemic issues so they could tell you that this is what you have to be doing and this is how you are doing it, and so forth.

Another participant stated, “I think especially elderly folks need a representative, like someone who can navigate them through the process.”

Participants perceived that services geared toward healthy and independent adults are more difficult and expensive to obtain than those for chronically ill parents. Their frustration is expressed by the statement, “I feel like if there's anything society would need especially with the aging epidemic, it's that we need to figure out how to provide better care management support in the home that's accessible to people.”

Need for a Family-Centered Care Model. Although adult children experience stress, they often fail to articulate it, especially to HCPs. As one participant stated, “I don't know if I would talk to my health care provider…I don't know if I would say, ‘Oh, you know, I'm worried about my parents getting older.’” The aging process is an assumed part of life and participants are unable to express their anxiety, lack of knowledge, and feeling of anticipatory loss to their HCPs. Although HCPs are aware of the detrimental effects of stress, an assessment of familial stressors, such as worry about poten tial loss of parent or relationship conflict, may not always be performed. One participant stated, “But [my doctor] won't ask me, though, ‘Hey, I know your parents are getting up there and how's that? How are you?’”

One participant remarked on the benefit of having the same primary care provider as his parents. Sharing the primary care provider allowed the participant to “tell the physician things that my mom/dad may not have mentioned” and provided a degree of continuous monitoring of subtle changes that family members may notice, such as reluctance to drive at night, that older adults may not discuss with their HCPs voluntarily. Participants urge HCPs to gather detailed and nuanced information from older patients, especially related to activity and mental health. One participant noted:

This nurse practitioner is a good example. My dad was impressed with the fact that when he went she asked him like, “Okay, so do you have a living will? Are you estranged from your children? Do you see them?” And I think, Oh, yeah! I like her, too. I think it is important for health care professionals to [ask these questions], because not all parents and children are on a good level.

As stressors accumulate, it is critical that adult children are conscious of their own healthful behaviors. Although some participants were mindful of their behaviors, making statements such as, “I'm real conscientious about taking care of myself,” others admitted they were not so prudent: “I'm taking care of my wife and my daughter and I'm letting myself go.” HCPs must emphasize, “if you don't take care of yourself, you're not going to be able to take care of somebody else.”

Preplanning. Participants understand the need for preparation but are not sure where to begin. As one participant stated:

I think we should have those pre-when-this-stage-of-life, the before-medical-disaster-hits, or declining-health seminar…How do you get to people to really prepare for ‘it's not going to be like this forever.’ At some point you're going to deteriorate health-wise, whatever that looks like. How do you prepare for that?

Participants look to HCPs to encourage conversations involving parents and their adult children that address future planning while aging parents are cognitively intact and able to make decisions.

A summary of these findings is presented in Table 1.

Summary of Findings

Table 1:

Summary of Findings

Discussion

Difficulty in communicating with HCPs is a significant issue for adult children. Nogueras, Postma, and Van Son (2016) found that communication difficulties between adult children and HCPs delayed the diagnosis of dementia for aging parents, suggesting that lack of communication can negatively affect care of older adults. Caregiving adult children in Taiwan reported difficulty communicating with HCPs (Lien & Huang, 2017), indicating that such difficulties are not restricted to U.S. settings.

Participants sought communication to obtain information about their parent, but also expressed a desire for a family-centered philosophy that would allow HCPs to connect with the adult child, subsequently increasing cultural and familial understanding and guiding future planning for aging parents. Parse (2017) reminds nurses that this relationship is indeed “co-created.” She reiterates the participants' needs for clear information that is respectful of family cultural perspective. Nurses who provide clear information and instructions may be able to boost perceived control in adult children, which has been found to improve quality of life for caregiving adult children (Bastawrous, Gignac, Kapral, & Cameron, 2015).

Knowing the family well can allow for assessment of quality of relationships between adult children and parents. Relationship quality has been linked to well-being and quality of life in caregiving and IGS literature (Bastawrous et al., 2015; Fingerman, 2016). Knowing the family and addressing relationship quality while patients are still healthy may help nurses with the preplanning requested by participants. Higher quality of family relationships predicts completion of advanced planning materials, such as a living will (Carr, Moorman, & Boerner, 2013). Creating an end-of-life plan is an indicator of quality measure for Medicare, but data suggest that only 25% of older adults have such a plan in place (Harrison, Adrion, Ritchie, Sudore, & Smith, 2016). Participants in the current study recognized the need for pre-planning for eventual decline, but found that the need was not addressed in their experience. Participants' experiences guide HCPs toward strategies for successful family-centered care for aging families (Table 2).

Suggested Interventions for Nurses Caring for Adults and/or their Aging Parents

Table 2:

Suggested Interventions for Nurses Caring for Adults and/or their Aging Parents

Strengths and Limitations

The current research qualitatively displays experiences adult children have with the health care system, not often found in the current literature, which is mostly quantitative. A limitation of the study is that a majority of participants were women from the Middle Atlantic States; therefore, a more socio-economically and regionally diverse sample is recommended for future research on this topic.

Implications for Nursing

The recent National Academies of Sciences, Engineering, and Medicine (2016) report on family caregivers makes an urgent plea for careful assessment of the family system when caring for older adults. The findings of the current study provide a foundation to explore the non-caregiving stage and increase nurses' awareness of adult children's needs prior to the caregiving stage.

Use of clear and comprehensible language during communication is critical. Assessment of the multigenerational family could increase understanding of the quality of relationships prior to health crises and can assist in creative planning. Families who have poor quality of family relationships should be referred for counseling. Although HIPAA regulations are in-violate, nurses can consider discussing with healthy older adults the inclusion of adult children in the communication loop. Excellent resources on holistic family assessment are available through the International Family Nursing Association (access https://internationalfamilynursing.org).

Gerontological nurses must work toward implementing policies and practices that would increase advanced care planning for older adults. Nurses in acute care settings are familiar with family inclusion policies. Such policies could be implemented in the primary care and outpatient settings.

Finally, nurse researchers must begin to increase study of this noncaregiving life stage. As Bastawrous et al. (2015) stated, “We have limited understanding of how the parent-child relationship changes or evolves across the caregiving trajectory” (p. 463). Studies regarding the impact of including children of older adults in planning for the caregiving stage, counseling for conflicted relationships, or self-care instructions for non-caregiving adult children are needed. Evidence-based projects that explore best practices for enhancing family communication within the family and with the health care system are recommended.

Conclusion

The findings of the current research study highlight the importance of family-centered nursing and health care. Although participants experienced and appreciated some holistic care, they provide a clarion call for deep improvements in a system that can be particularly difficult to negotiate. Nurses should advocate for clear policies that break down current barriers to inclusionary family care, such as HIPAA, while still ensuring that patients' privacy is maintained. Further research is needed to understand whether family-centered care and clear anticipatory guidance for aging families can improve quality of life for families and reduce health care costs. The family members in the current study offer insights on how to move forward; HCPs should listen.

References

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Summary of Findings

ThemeSubthemes
Lack of holistic care

Inaccurate monitoring of changes in parent

Inadequate assessment of family dynamics

Inability to consider cultural differences

Lack of effective communication
Fragmented care and need for better care management

Lack of expert guidance

Need for a family-centered care model

Preplanning

Suggested Interventions for Nurses Caring for Adults and/or their Aging Parents

Individual Provider InterventionsOrganizational Systemic Interventions

Careful monitoring and detailed documentation of abilities and deficits

Assessment of patient's cultural, religious, and familial context

Proactive communication

Encouragement of self-care in adult children

Family-centered care

Care navigator

Anticipatory guidance

Authors

Dr. Wells is Assistant Professor, Seton Hall University College of Nursing, South Orange, and Dr. Kartoz is Assistant Professor, The College of New Jersey, Ewing, New Jersey.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Munira Wells, PhD, RN, Assistant Professor, Seton Hall University, College of Nursing, 400 South Orange Avenue, South Orange, NJ 07079; e-mail: Munira.wells@shu.edu

Received: July 01, 2017
Accepted: January 02, 2018
Posted Online: February 14, 2018

10.3928/00989134-20180209-01

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