Journal of Psychosocial Nursing and Mental Health Services

Original Article 

Caregivers of People With Disabilities: A Program to Enhance Wellness Self-Care

Margaret Swarbrick, PhD, FAOTA; Susan Gould Fogerite, PhD, MT (ASCP), CYT; Amy B. Spagnolo, PhD; Patricia B. Nemec, PsyD, CRC, CPRP

Abstract

Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted. [Journal of Psychosocial Nursing and Mental Health Services, xx(xx), xx–xx.]

Abstract

Caregivers are a source of support for family members with disabilities. However, caregivers are at risk for caregiver burden, which can erode self-care skills and lead to poor physical and mental health outcomes. Caregiver Wellness Self-Care, developed to address that risk, is a 5-week group program in which participants learn about strategies that cultivate their inner resources, while connecting with others for support. Wellness, self-care, mindfulness, and yoga-based information and practices are taught in the sessions and included in participant handouts. Self-reflection and planning activities with facilitated discussions further support awareness and personal transformation. Designed by and for people providing care to an adult family member with a mental health disorder and a developmental/intellectual disability, the program was piloted three times. The current article describes the development of the program through caregiver involvement, participant and facilitator feedback, and implications for future efforts to build caregiver wellness self-care skills. Implications for nurses are highlighted. [Journal of Psychosocial Nursing and Mental Health Services, xx(xx), xx–xx.]

Caregivers are people who support and help individuals who are unable to fully take care of their own needs due to physical, emotional, or cognitive deficits that impact function and social participation. Providing care to a family member living with a lifelong disability can be a rewarding and rich experience (Gérain & Zech, 2019; Semiatin & O'Connor, 2012). However, it can also provide challenges that, over time, lead to the experience of burden. Caregiver burden is often viewed as a multi-dimensional response to social, physical, emotional, and financial stressors associated with caregiver's experiences, combined with a perceived lack of ability to deal with those stressors (Galiatsatos et al., 2017; Gater et al., 2014). Family caregivers often experience a range of emotions related to the ongoing experience of being expected to provide long-term support for a family member with a lifelong disability. As caregivers are often expected to offer this support for extended periods of time, this can place the caregiver at risk for mental and physical health problems, as well as negative effects on quality of health and life (Millington & Merini, 2015). There is growing recognition and a developing body of knowledge that describes how caring for people with complex conditions, such as mental illnesses and/or developmental issues, causes increased risk of stress and burden (Dawson et al., 2016; National Alliance on Caregiving, 2016).

Caregivers of people with mental illnesses experience greater health issues compared to the general population. In one study, approximately 40% of respondents who were caregivers of persons with mental illnesses noted that it was difficult to make time to attend to their own health concerns; one half reported that their own physical health had worsened since they became a caregiver (National Alliance on Caregiving, 2016). Research on caregivers of persons with developmental/intellectual disabilities also demonstrates an increased risk for health problems, including high blood pressure, arthritis, obesity, and limitations in activities of daily living (Yamaki et al., 2009).

In addition to worsening physical health, caregivers may experience depression and anxiety (Lefley, 2009; Millington & Merini, 2015). For caregivers of people with mental illnesses or developmental/intellectual disabilities, there may also be burdens related to seeing their family members struggle and experience difficulty achieving traditional goals of education, employment, and family life (Lefley, 2009). Many caregivers of persons with intellectual disabilities are likely to never receive support services (Chou et al., 2009), placing the burden for support solely on the family caregiver.

Caregiver Self-Care: Mindfulness and Yoga

Self-care is a set of planned and deliberate activities that are done daily or weekly to get and stay physically and emotionally healthy and manage stress (Swarbrick et al., 2017). Maintaining caregiver health and self-care activities is reported as a major challenge for caregivers, and is extremely important to the individual being supported, as well as to their family and society (Gérain & Zech, 2019; Samia et al., 2012). This is particularly true when professional support is not readily available or financially feasible (Napoles et al., 2010). Greater personal mastery, self-efficacy, and use of coping skills, major domains of resilience, are associated with better health outcomes in dementia caregivers (Harmell et al., 2011). A recent model of caregiver burnout posits key mediating roles for caregiver coping skills, assessment of their situation, and relationship to the care recipient (Gérain & Zech, 2019). Programs that include psychosocial support and strengthen coping skills are attractive approaches to enhance caregiver well-being (Samia et al., 2012; Tebb et al., 2013). A significant amount of research supports the importance of wellness self-care, including sleep, eating well, and physical activity, as means for managing stress (Davis et al., 2000; Pope et al., 2017; Riegel et al., 2019).

Mindfulness (Kabat-Zinn, 2016), breathing practices (Zaccaro at al., 2018), and yoga practices have been shown to improve caregiver health, wellness, and quality of life (Baptiste, 2007; Casucci & Baluchi, 2019; Cohen et al., 2017; Gould Fogerite et al., 2018). For example, mindfulness-based stress reduction (MBSR) programs have been implemented to support family and professional caregivers (Hou et al., 2014; Shapiro et al., 2007), including family caregivers of children with chronic conditions (Minor, 2006). In a study by Hou et al. (2014), caregivers of family members with chronic conditions were randomized to a MBSR group and a control group who received a specially designed health education booklet. The MBSR group had decreased depression and state anxiety, and increased self-efficacy (controlling negative thoughts) and mindfulness, compared to the control group post-intervention and/or at 3-month follow up. There is evidence for mindfulness and self-compassion mediating some of the positive effects of mindfulness-based programs, which is relevant for self-care programs for caregivers.

Yoga-based programs may include breathing, relaxation, and meditation practices, as well as philosophy and mindfully practiced postures and stretches (Whitehead & Gould Fogerite, 2017). Improvements in multiple aspects of physical health have been seen in many yoga clinical trials and programs (Cheung et al., 2016; Cohen et al., 2017; Innes & Selfe, 2016; Kuehn, 2017; Li et al., 2019; Wieland et al., 2017). Yoga and meditation have positive effects on mental health and are safe and effective mono or adjunctive therapies for anxiety and depressive disorders (Louie, 2014; Saeed et al., 2019; Trent et al., 2018).

The Caregiver Wellness Self-Care Program Development

Focus Group Meetings

Stakeholder input from family supporters and advocates was gathered through an initial kick off meeting, a series of six focus group sessions, as well as phone interviews by the first author (M.S.). This input was solicited from caregivers of adults with co-occurring developmental/intellectual disabilities and mental illnesses, and from organizations serving this population, to better understand stakeholder self-care needs and interest in a program to support self-care. Through the focus groups, stakeholders provided compelling and heartfelt statements that were used to design and implement a family caregiver wellness support model focused on education and support for families of adults living with co-occurring developmental/intellectual disabilities and mental illnesses (DD/MI) (Figure 1). Participant comments validated the concern that family members and caregivers of people living with cooccurring DD/MI are especially vulnerable, as they face complex, high-burden care situations, resulting in high levels of caregiver stress and strain. Many endorsed that emotional stress often affects their physical health, and many reported finding it difficult to take care of their own wellness needs. Caregivers in the focus groups consistently reported they did not have time to take care of their own health. They also noted concern that if they do not take care of themselves, they will not be able to help others effectively.

Concept development and operationalization for curriculum development.

Figure 1.

Concept development and operationalization for curriculum development.

Program Design

Based on stakeholder input, caregiver literature, and the team's experience, a multi-session, interactive wellness self-care education and practice program was designed that included mindful practice of breathing techniques, relaxation, meditation, stretches, and postures, presented specifically to meet the needs of family and supporters of individuals living with DD/MI (Table 1). The curriculum included a facilitator guide and participant handouts. During the 5-week group program, participants learned about strategies that cultivated their inner resources, while connecting with others for support. The session topics were:

  • Session 1 – Introduction to Wellness Self-Care, Mindfulness, and Yoga;
  • Session 2 – Physical Activity, Mindfulness, and Yoga;
  • Session 3 – Sleep and Rest, Mindfulness, and Yoga;
  • Session 4 – Eating Well, Mindfulness, and Yoga; and
  • Session 5 – Managing Stress and Crisis: Self-Care, Mindfulness, and Yoga.
Curriculum Description

Table 1:

Curriculum Description

Caregiver Wellness Self-Care Program Pilot Sessions

Project staff delivered three pilot sessions and a follow-up summit. The pilot was offered through a university-based community behavioral health care organization. We recruited through National Alliance on Mental Illness NJ and advocacy groups who serve families of adults with intellectual and mental disorders. We convened two pilot sessions in the fall (one group during the day and the other in the evening, to facilitate caregiver attendance), and one pilot session in the spring. A total of 34 caregivers completed the three pilot offerings—12 in the first pilot (fall, daytime), 10 in the second pilot (fall, evening), and 10 in the spring pilot. For all three pilots, five sessions were held over 5 weeks. The first session was 4 hours in length; the remaining four sessions were each 2 hours long. Feasibility of this pilot was demonstrated by the ability of the facilitators to successfully provide the program, as well as the high level of attendance by participants. Only one person in the fall and two people in the spring did not complete the program. This failure to complete the program was despite the demands on them as caregivers and multiple instances of challenging travel conditions due to severely inclement weather in the spring session. An open-ended question evaluation form was distributed and collected at the last class session.

Participant Feedback

Overall, participants were satisfied, indicating the wellness topics covered were helpful, that the self-care topics were relevant, and that they planned to use the information and skills learned. Many reported that the first session (introduction to self-care), was helpful, as was the focus on managing stress. One participant commented, “We spent more time on the overview of the course, which made a strong impression and allowed us to share with one another,” likely referring to the first class being 4 hours instead of 2 hours. A number of participants commented that the session on sleep and rest was valuable because, “good sleep can help me do everything” and “I have not taken care of my sleep and rest; but I am aware of its importance.”

One participant noted, “All of the five topics were helpful to me, because I feel that all of them work together! If you exercise and you don't eat well, or manage your stress, then you may not sleep well, which, in turn, will affect you all around.” Another participant stated, “All of the five topics were extremely helpful. The first session brought into our consciousness the importance of wellness self-care and it set an expectation for all the other sessions.”

Participants also expressed appreciation for the instruction and practice on yoga and mindfulness, with the majority of participants indicating that they planned to continue the practice of yoga and mindfulness after the conclusion of the program. Participants were generally in agreement that the most helpful part of yoga practice was breathing, although they also mentioned stretching and “the short sessions” (one comment each). Breathing was also mentioned by a few participants as the most helpful mindfulness strategy, along with awareness strategies.

Other helpful aspects of mindfulness were described as “clearing everything” (one comment) or “dismiss things” (one comment). Being nonjudgmental was mentioned by two participants, and one participant mentioned “be gentle and kind to ourselves.” Slowing down, stopping, and taking mindful pauses during the day were each mentioned by one participant. One participant mentioned “be grateful.” One also mentioned that mindfulness was helpful for sleep.

The observations made by participants as the program progressed, and at the final sessions, indicated that they were practicing what they learned and it was making a positive difference. One caregiver said she realized she had lost her awareness of smell and, as a result of practicing mindfulness, she was now noticing smells again. Another said she felt like she met herself again—that she knew she had the ability to slow down and be in her body and the present moment, as she had practiced yoga when she was younger, but had lost it until this class. Another said she was doing yoga daily and it was helping her neck and shoulders, which had been sore and stiff. Several caregivers mentioned that their ability to stay calm, be patient, and not be so reactive was helping not only them but also the family member they cared for. One participant said tearfully that they found they were being kinder, and their family member was responding well. Another participant said that increased patience was enhancing closeness with the family member.

All participants expressed deep gratitude for the program. Multiple people indicated they were now putting caring for themselves as a daily priority, and several mentioned appreciating the love and caring that had obviously gone into the design of the classes and the way classes were provided. A few shared that attending the sessions was a high priority for them because it was so helpful.

Participants described liking how the yoga practice could be broken into “manageable parts.” Many also indicated they used the 10-minute mindfulness session and that they appreciated that mindfulness can be incorporated into their daily routines. Many liked the focus on breathing and “practice-in-the-moment.” They described how they valued the option to do just about anything more mindfully, such as eating, walking, folding laundry, or washing dishes.

Some participants indicated they would have liked more sessions. However, during stakeholder focus groups, most people stated that even five sessions was a major commitment and they would not be able to attend. During the pilot, we found the same—although a few people wanted more, most participants believed it was a big commitment to make all five sessions. Pilot participants indicated they would like follow-up activities, whether electronic, virtual, or in-person.

Facilitator Feedback

Facilitators agreed that the pilot program went smoothly overall. The combination of the wellness self-care education, mindfulness, and yoga, all of which included facilitated discussion, seemed to work well together. However, there was more material written into the original curriculum than facilitators were able to cover in the time allotted, which resulted in the self-care education component not being given adequate attention. Facilitators agreed that streamlining information and practice would help to introduce, practice, and process information more effectively.

Follow-Up Summit

A Wellness Summit, attended by 70 participants, was convened in April 2018, to present relevant research supporting the wellness areas, yoga, and mindfulness for caregiver health and wellness, and share some practices from the program. Select pilot participants were invited to speak on a panel, where they shared some of the benefits they derived from participation, including changes in personal behavior, attitudes, and well-being. Although no notes or transcripts were compiled during the event, there was significant interest in having additional programs. In response, a series of self-care programs have been created based on this model, including a self-care program for family caregivers and professionals serving people with Alzheimer's disease or other age-related memory loss. This program is being piloted through online delivery due to pandemic-related restrictions on live events.

Limitations

This project was a pilot training to determine the feasibility and acceptability of such a self-care program. The feedback gathered is limited to anecdotal responses from participants. No formal outcome measures were used, so no data are available as indicators of caregiver improvement over the short or long term. No data are available on the impact of the program on individuals who receive care from program participants.

Discussion and Implications

Participant feedback on the pilot program suggested that the combination of wellness and self-care education, with mindfulness and yoga practices to facilitate greater calmness and less reactivity, contributed to their positive reception of this program. Positive changes were reported in emotional states, behaviors, and family relations. Participants took to heart the information that self-care was important and initiated practices in their daily lives. Inclusion of a participant manual with all the didactic information, along with the practices, supported the ability to integrate content and may be an important component for other such programs. The opportunity for participants to share their challenges, progress, and triumphs added greatly to the bonding of the groups and a sense of shared experience and support.

Caregiver strain has intensified during the coronavirus (COVID-19) pandemic (Cohut, 2020; Greenberg et al., 2020), creating additional need for self-care and support. Nursing homes have been described as “ground zero” for the pandemic (Barnett & Grabowski, 2020) and, as of December 2020, reports indicate that nursing home and long-term care facility residents account for between 38% and 70% of COVID-19 deaths in the United States, depending on state reporting; however, nursing home and long-term care facility residents represent only 5% of the population (Koh et al., 2020). The magnitude of loss, the personal risk, and concurrent life changes and concerns outside of work have contributed to the already high burden experienced by the geriatric workforce, nurses practicing in virtually all specialties, and family caregivers. Self-care strategies are essential tools in such difficult times.

Future offerings of this program could involve nurses as facilitators or as participants. Nationally and internationally, the nursing workforce is majority female and rapidly approaching the age of retirement. According to a 2018 survey conducted by the National Council of State Boards of Nursing and The Forum of State Nursing Workforce Centers, 50.9% of the RN workforce was aged ≥50 years (American Association of Colleges of Nursing [AACN], 2019). Given these demographics, many are likely to be caring for a family member with physical or mental health challenges, now or in the future (Samia et al., 2012). The Health Resources and Services Administration projected that more than 1 million RNs will reach retirement age within the next 10 to 15 years (AACN, 2019). Although a large portion of the workforce is nearing retirement age, many nurses will continue working and therefore may benefit from learning, practicing, and implementing wellness self-care strategies to prevent caregiver burnout. Previous research has indicated that the demands of complex health care environments have resulted in higher demands and expectations for nurses (Bonamer & Aquino-Russell, 2019). The consequences of these increased demands can be physical and emotional stress and compassion fatigue (Todaro-Franceschi, 2013). Health education and engaging in stress reduction practices, such as yoga (Alexander et al., 2015) and mindfulness (van der Riet et al., 2018), are effective for enhancing self-care and wellness among nurses. A randomized workplace mindfulness and yoga intervention reduced stress biomarker and burnout scores in intensive care unit nurses (Duchemin et al., 2015). Previous research has also identified a gap between knowledge of health promotion behaviors and the application of those behaviors in nurses' personal lives (Ross et al., 2017), suggesting that knowledge-based education events may need to be part of a larger effort that includes modeling by nurse leaders, organizational support for self-care, and advocacy for system change.

Nurses are in an ideal position to facilitate self-care sessions for family caregivers. Their role gives them the knowledge, skills, and credibility to communicate the importance of self-care and to support family caregivers in using self-care strategies in their own lives. The availability of a curriculum may increase the likelihood that programs such as the Caregiver Wellness Self-Care will be implemented.

Conclusion

Caregivers can benefit from support and wellness self-care education. The simple mindfulness and yoga practices that can be easily incorporated into a busy caregiver routine may have a profound effect on overall health and well-being for caregivers and family members.

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Curriculum Description

Session (Duration)Learning ObjectivesLearner ActivityExpected Outcome
1. Overview (4 hours)

Define wellness self-care

Identify self-care strengths

Describe the practice of mindfulness

Define yoga, and practice yogic breathing, poses, and relaxation

Written practice listing self-care strengths, desired changes, and possible steps to take

Mindful eating exercise

Sitting meditation exercise

Yoga diaphragmatic breathingexercise

Relaxation exercise

Planning for personal wellnessself-care

Participants will incorporate some of these and other self- care activities into their schedules between sessions
2. Physical Activity (2 hours)

Describe benefits of regular physical activity

Identify enjoyable physical activities that strengthen self-care

Identify how to plan more physical activity

Written practice listing physical activity strengths

Mindful movement exercise

Yoga breathing exercise

Planning for personal wellnessself-care

Participants will identify and address barriers to incorporating self- care activities into their schedules between sessions
3. Sleep (2 hours)

Acknowledge personal strengths in self-care

Select relevant self-care techniques

Develop daily and weekly self-care habits and routines

Written practice listing self-care strengths

Mindful pause exercise

Body scan exercise

Yoga breathing exercise #1

Yoga breathing exercise #2

Yoga pose practice

Relaxation exercise

Planning for personal wellnessself-care

Participants will track their self-care activities between sessions
4. Eating Well (2 hours)

Identify what they eat that fuels their body, mind, and spirit

Describe how and when to eat in ways that promote enjoyment and health

Written practice listing self-care strengths

Mindfulness exercise

Yoga breathing exercise

Yoga pose practice

Relaxation and meditation exercise

Planning for personal wellnessself-care

Participants will track their self-care activities between sessions
5. Stress (2 hours)

Describe how to use coping skills to prevent or manage stress and crisis

Identify ways to continue wellness self-care skills, mindfulness, and yoga

Stress discussion

Mindfulness exercise

Yoga breathing exercise #1

Yoga breathing exercise #2

Relaxation and meditation exercise

Participants summarize learning and plan next steps for themselves
Authors

Dr. Swarbrick is Director of Practice Innovation and Wellness, and Dr. Nemec is Business Associate, Rutgers University Behavioral Health Care, Piscataway, New Jersey; Dr. Gould Fogerite is Associate Professor, Department of Clinical Laboratory and Medical Images Sciences, and Dr. Spagnolo is Associate Professor, Department of Psychiatric Rehabilitation and Counseling Professions, Rutgers School of Health Professions, Newark, New Jersey. Dr. Swarbrick is also Wellness Institute Director, Collaborative Support Programs of New Jersey, Freehold, New Jersey.

The authors have disclosed no potential conflicts of interest, financial or otherwise. The Caregiver Wellness curriculum was developed under a contract awarded to the New Jersey Department of Mental Health and Addiction Services through a contract funded by the Center for Mental Health Services/Substance Abuse and Mental Health Services Administration of the Department of Health and Human Services through the National Association of State Mental Health Program Directors.

Address correspondence to Margaret Swarbrick, PhD, FAOTA, Wellness Institute Director, Collaborative Support Programs of New Jersey, 8 Spring Street, Freehold, NJ 07728; email: swarbrma@rutgers.edu.

Received: June 22, 2020
Accepted: September 16, 2020
Posted Online: January 13, 2021

10.3928/02793695-20210107-04

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