Analysis of action planning, achievement and life purpose statements in an intervention to support caregivers of persons with heart failure

Abstract

Background

Caregivers of persons living with heart failure (HF) experience uncertainty related to heart failure trajectory and caregiving demands. Caregiver Support is a nurse-led intervention consisting of a well-being assessment, development of a life purpose statement, and action planning related to self-care and support for caregivers.

Objectives

The goal of this study was to describe the caregivers’ action plans, action plan achievement and life purpose statements.

Methods

We used inductive content analysis to code life purpose statements and action plans by 2 coders. Descriptive statistics were used to describe the average number of action plans set per caregiver, the average number of themes coded per action plan and life purpose statement, and the status of goal achievement (i.e., by thematic domain, subdomains). Goal achievement was defined categorically: Achieved, not achieved, and not assessed. The achievement rate was calculated as the proportion of achieved action plans out of the total number of assessed action plans.

Results

The sample (n=22) was predominantly women, spousal caregivers, and an average age of 62±14.2 years. Thirty-six percent of caregivers were Black and 41% reported financial strain. Action plans comprised five categories: personal health and well-being, social support, home environment, instrumental support and other. The most common topics of life purpose statements were faith and self-care/actualization. Of 85 action plans, 69 were assessed and 66.7% were achieved.

Conclusions

These findings highlight the diversity of values and needs of caregivers and provides insights for additional person-centered support.

Introduction

Heart failure (HF) is a serious illness with high risk of mortality and negative impact on a person’s daily function or quality of life.¹ Among the over 3 million Medicare recipients with HF, 60% will die within 5 years and many will require support from a caregiver as they approach end of life.² Although data is sparce to indicate availability of family caregivers in HF, the presence of a family caregiver has a positive effect on HF self-care and outcomes.³ Yet, caregivers receive little training or support for their vital role and report moderate to high levels of caregiving strain, which can influence their physical and mental health.^4,5 Caregivers must manage high levels of patient health care utilization, treatment complexity and must quickly respond to unexpected stress due to the intermittent exacerbations notable in the HF trajectory.⁵ Despite the critical role they play, caregivers’ needs, preferences and experiences are rarely considered or evaluated in routine HF care. The willingness and ability of the caregiver to deliver the care needed, often in the preferred context of care (e.g., home), enables patients to achieve their goals of care.⁴ However, little is known about how caregivers of HF patients prioritize their own needs, seek support, or integrate caregiving in their overall values or purpose in life.

The demands of caregiving can affect caregivers’ abilities to self-manage the challenges of caregiving and their own physical and mental health.⁶ Self-management can be described as health-promoting activities over the life course that prevent and reduce the impact of health-related problems.⁷ Caregiver self-management is centered on the challenges of balancing caregiving with the caregiver’s own health and well-being. Action planning is a self-management skill and form of personal commitment, which has become an important behavior change tool in self-management literature.⁸ Action plans are similar to goals but the focus is typically on an individual behavior (rather than an outcome) and they are very short term (1–2 weeks). Action plans are also 1) important to the individual, 2) publicly stated or shared with others, and 3) based on free choice – the individual chooses and determines the plans. For instance, an individual might have an overall goal of improving their self-care and one action plan would be to set aside 15 minutes 3 days in the next week to focus on a specific self-care activity such as yoga. The Chronic Disease Self-Management Program is based on this form of action planning and has been highly successful in improving health behavior, self-efficacy and health status in multiple trials.^9–12 For caregivers, action planning may drive behavior change by encouraging the caregiver to set their own priorities, based on their own free choice. Dementia caregivers have benefited from action planning¹³ and although this approach has not been used to address caregiver needs in the HF population, it may be appropriate given the uncertainty and complexity of caregiving for a person with a serious, life-limiting illness.

Another self-management strategy is to identify motivating factors that drive behaviors or help prioritize selection of action plans. Life purpose, a dimension of well-being, is described as having a “direction” in life and seeing meaning in the past and present.^14,15 Identifying a life purpose has been shown to improve physical and mental health, including lower mortality and cardiovascular disease¹⁶, stroke¹⁷, myocardial infarction¹⁸, better preventive health behaviors¹⁵, and lower allostatic load¹⁹. Life purpose can be used as a central motivation in interventions addressing well-being.^20–22 Identifying life purpose, the connection between finding meaning from life’s experiences and challenges, promotes resilience; this promotion of resilience in combination with engaging in behavior change strategies, such as action planning, may be useful in reducing caregiver burden.

Caregivers of persons with HF may benefit from action planning to 1) address caregiving needs and improve their physical and mental health and, 2) articulate their life purpose and values. Additionally, to date, no caregiving studies have described development of life purpose statements. The purpose of this study was to describe action plans, action plan achievement and life purpose statements of HF caregivers in the Caregiver Support pilot randomized waitlist control trial. We hypothesize that the action plans and life purpose statements will be thematically diverse and emphasize the wholeness of our caregivers as individuals, moving beyond their role in caring. The action plans and life purpose statements of caregivers can be used to develop resources for future caregiving interventions and programs.

Methods

Caregiver Support

The Caregiver Support intervention focused on caregivers’ goals and unmet needs and provided support to address caregiver burden and improve quality of life. The full Caregiver Support study protocol has been described previously.²³ The intervention included up to five individualized, nurse-led sessions, delivered via web conference technology over 10 weeks. Sessions focused on 1) holistic assessment of caregiving needs; 2) discussion of caregiving in the context of the caregiver’s life purpose to provide rationale for action planning; 3) co-development of short-term action plans to address caregiver’s self-care needs; 4) exploration of social, community, and palliative care resources to support personal and caregiving needs; and 5) creation of a sustainable action plan for addressing any future needs. We tested proof of concept, feasibility, and acceptability of our innovative approach in a randomized, waitlist control pilot trial (N=24).²¹ For the purposes of this analysis, we will focus on the life purpose activity, which typically occurred across Visits #2 and 3, and the action planning activities, which occurred at the closure of every visit.

The intervention was informed by the Self-Management Theory and the Society-to-Cells Resilience Framework which posits that physiological, individual, family, and societal level factors influence resilience, the process of positive adaptation when facing stressors.^24,25 This model also asserts that there are periods of particular resilience, such as caregiving, when new skills and values are formed. Considering multiple socio-ecologic domains is likely to lead to more lasting effects on individual resilience compared to intervening on one domain. Therefore our intervention was based on a holistic assessment of the caregivers needs, social support and resources to inform action planning and life purpose exploration.

Study Design

The immediate intervention group received the intervention during weeks 0–16, and the waitlist group from weeks 16–32 of study enrollment, respectively. Study procedures including informed consent were reviewed and approved by the Johns Hopkins School of Medicine Institutional Review Board (IRB00203584). Participants were recruited during the COVID-19 pandemic (August 2020 and September 2021).

Recruitment and Randomization

We recruited participants through provider referral from a heart failure clinic at a major academic medical center and co-recruited with a study investigating the needs of recently hospitalized HF patients. Caregiver information listed in the electronic health record was often included in the provider referral; in these cases, the study recruiter would call the caregiver directly. However, if this information was not available, patients served as the point of contact and were asked if they had a caregiver. Caregivers also had the opportunity to express interest via recruitment flyers that were distributed by the patient’s provider and located on bulletin boards in the clinic. Inclusion criteria for caregivers included 1) being 18 years of age or older, 2) being English-speaking, 3) either living with the patient or visiting the patient at 3 days per week to provide care or support, 4) providing support to the patient for at least 1 instrumental activitiy of daily living, and 5) caring for a patient who had been hospitalized in the last 6 months from date of consent.

After obtaining informed consent and completing baseline data collection, we randomized participants using REDCap²⁶ randomization and communicated the assignment to participants by letter.²¹ Here, we briefly describe the activities from which data are derived.

Action Planning

At the end of each session, caregivers created an action plan for themselves, focused on a single behavior, experience, or need with the nurse interventionist. The action plan was meant to be accomplished over the two weeks between sessions. The prompt for action planning was, “What is a small goal you can set for the next 2 weeks to care for yourself or lighten the load of caregiving?”. Of note, the prompt refers to ‘goals’ and not action plan, however given the tailored nature of the intervention, interventionists were encouraged to modify the prompt with language that resonated for each caregiver. The interventionist contacted the caregiver by phone between sessions to assess action plan achievement and provided additional encouragement as needed. Action plans set at the previous session were discussed at the beginning of the following session, whereby caregivers and the interventionist celebrated achievement (even partial achievement) or examined barriers and brainstormed solutions to achieve the caregiver’s action plan in cases of non-achievement.

Life Purpose Activity

During the intervention, caregivers completed the life purpose activity, which was developed based on the Ryff theory of well-being and the domain of purpose in life.^20,27 We refined the activity using data from a mixed-methods study and by conducting human-centered design activities with key stakeholders.^23,28,29 The life purpose activity involves discussion of four topics with prompts: Caring for Yourself, Experience as a Caregiver, Purpose, and Emotions, and is conducted like a virtual card game. The nurse interventionist prompted the caregiver to select a topic and respond to the prompts. The interventionist used a worksheet to record information shared by the caregiver and then synthesized key stories, feelings, themes, and observations after the session. In the following session, the interventionist shared their synthesis and offered a chance for the caregiver to add in any additional thoughts, feelings, or reflections. From this shared compilation, the interventionist and caregiver co-created a list of the caregiver’s values. They were encouraged to use their top values to craft a life purpose statement, which was then used to inform subsequent action plans. We provided prompts/templates for caregivers to use to get started (see box).

Box:

I dream to _____values, behaviors, actions________________

My purpose is _____values, behaviors, actions________________

Data Collection and Analysis

We recruited 30 participants for the pilot trial. After consent, 6 participants did not complete baseline surveys and 2 participants completed baseline surveys but did not start the intervention, leaving 22 participants for this analysis. Data to describe the sample include demographics and caregiver physical and mental health rating measured using the Short Form Health Survey (SF-36). Physical and mental health components are derived from 8 sub-scales. Scores range from 0–100 with higher scores indicating a more favorable health state.³⁰ Although this was a waitlist control trial, we do not differentiate immediate intervention versus control group, as this analysis describes the experiences of all participants during the intervention.

Coding of the life purpose statements and action plans occurred in three phases using nurse interventionist documentation of participant statements which often included quotes from participants. Nurses were trained to capture participant’s language as closely as possible. To start, one coder (SC) reviewed all actions plans and life purpose statements and suggested codes using an inductive content analysis approach, using Microsoft Excel to organize the data.³¹ Next, a second coder (CAC) reviewed the suggested codes and refined them based on the data and published literature on caregiver goal setting.³² The final phase involved reconciliation of suggested codes by the coders and principal investigator (MAS). Final codes were then applied to all action plans and life purpose statements. To ensure trustworthiness, we kept an audit trail through note-taking and memoing, held frequent team meetings and conducted constant comparison of our coded categories and sub-categories with the original text to ensure reliability and credibility.³³ Descriptive statistics were used to describe the average number of action plans set per caregiver, the average number of themes coded per action plan and life purpose statement, and the status of goal achievement (i.e., by thematic domain, subdomains). Goal achievement was defined categorically: Achieved, not achieved, and not assessed. Achievement was determined by subjective reports from caregivers. Caregivers self-reported if they did or did not achieve their plan during sessions and phone check-ins. Action plans created during the final session were not evaluated for achievement by interventionists as it was their final contact with the participant; however, in this session, caregivers were encouraged to share their achievement with someone in their social network. The achievement rate was calculated as the proportion of achieved action plans out of the total number of assessed action plans.

Results

Caregivers in the sample (N=22) were predominately female (n=20, 91%), White (n=14, 64%), spouses of the care recipient (n=14, 64%), and most had more than a high school education (n=21, 95%) (Table 1). Average age of caregivers was 62±14.2 years. Most caregivers (68%) reported an annual household income of greater than $49,000 but about 42% reported financial strain (difficulty making ends meet). Caregivers reported moderate levels of physical (69.4±26.7) and mental health (70.9±20.4).

Table 1:

Participant characteristics at study baseline.

Characteristics	Total (n=22) n (%)
Gender
Men	2 (9)
Women	20 (91)
Race
Black (African American or African)	8 (36)
White	14 (64)
Age in years, mean SD	62 ± 14.2
Caregiver relationship to care recipient
Spouse	14 (64)
Parent	3 (14)
Child	4 (18)
Other	1 (5)
Employment
Working now	10 (45)
Retired	7 (32)
Unemployed, disabled, other	6 (23)
Education Level
≤ 12th grade	1 (5)
Some college, no degree	6 (27)
Bachelor’s degree	8 (36)
Graduate degree	7 (32)
Marital Status
Married, domestic partners	20 (90)
Never married	1 (5)
Divorced	1 (5)
Annual Household Income
Less than $35,999	3 (15)
$36,000-$48,999	1 (5)
$49,000 or more	15 (75)
Did not report	1 (5)
Financial Strain - how do your finances usually work out at the end of the month?
Some money leftover	13 (59)
Financially strained (just enough or not enough to make ends meet)	9 (41)
Health of Caregiver, mean SD*
Physical Health Component	69.4±26.7
Mental Health Component	70.9±20.4

^*36-Item Short Form Health Survey (SF-36)

Physical and mental health components are derived from 8 sub-scales. Scores range from 0–100 with higher scores indicating a more favorable health state.

All caregivers who started the intervention completed all intervention components. Thirteen caregivers completed the intervention in four sessions (i.e., 4 action plans) and 9 caregivers completed in 5 sessions (i.e., 5 action plans). Some caregivers completed the intervention in 4 sessions due to their participation preference and the pace in which they finished the program; yet, the program was intended to be completed within 5 visits. At the final session, an action plan was set during the closure activity and caregivers brainstormed an “accountability partner” from within their social network to help keep them accountable to their future goals and action plans. These actions plans were defined as “not assessed.”

Action Plans and Achievement

Caregivers set an average of 3.86 action plans throughout the intervention. Action plans (n=85) were coded into five domains: personal health and well-being, home environment, instrumental support, social support, and other; corresponding sub-categories are shown in Table 2. Action plans could be coded with multiple categories; on average, there were 1.21 thematic categories per action plan. If an action plan had more than one thematic category, the primary thematic category is reported. A summary of action plans by domain is described below.

Table 2:

Action plan exemplars (n=112 total) by action plan domain and sub-category

Domain	Sub Category	Action Plan Example 1
Personal Health and Well-Being (n=54)	Physical activity	“Go for a 1 hour walk 2x before next session.”
	Self-care	“Get massage and nails done.”
	Preventive health/medical care for caregivers	“Get back into physical therapy for new, acute hip pain.”
	Recreational activities/Travel	“Start reading a book while traveling to New York in the next few weeks.”
	Caregiver wellness	“Work on prioritizing/improving sleep.”
	Productivity/business/c areer	“Acquire LLC license to move personal cleaning business/transport company forward.”
Social Support (n=14)	Social activities	“Go out for ice cream with a friend who she has not seen since the pandemic started.”
	Connecting with other family members/friends	“Write a letter to a friend she’s been putting off for a year.”
	Engaging social support in caregiving	“To ask daughter to bring a meal at least 1x before our final session.”
Home Environment (n=6)	Household maintenance and upkeep	“Invite a woman over to help her sort through her closet and get rid of some old clothes that don’t fit.”
Instrumental Support (n=8)	Care coordination with social network	“To ask sister to be responsible for the evening check-in with the patient.”
	Prepare for your care -- ACP conversations	“To use prepare for your care and complete an advanced directive for self and encourage daughter to complete. Bring document into doctor’s office to scan in.”
	Legal, medical, insurance affairs in order	“Get a home health aide.”
	Accessing local resources (e.g., Meals on Wheels)	“Plan to follow-up via email with link to Mom’s Meals (and any other renal friendly meal services).”
	Specialty palliative care referral	“Reach out to provider to ask for palliative care consult. Schedule consult once provider places the order.”
Other (n=3)	N/A	“Walk through the Life purpose Activity with her husband to help him develop his own purpose statement.”

Personal Health and Well-being

The majority of action plans (n= 54) set by caregivers were in the personal health and well-being goal domain. Some of the most common sub-categories of action plans in the personal health and well-being goal domain were self-care such as stress management techniques, physical activity including going for walks, and recreational activities/travel like going on a personal vacation.

Social Support

Fourteen action plans were in the social support goal domain. Sub-categories of action plans in the social support domain included social activities, connecting with other family members/friends, and engaging social support in caregiving such as involving social networks in assisting with instrumental activities of daily living such as picking up medicine from the pharmacy or attending appointments with the person living with HF.

Home Environment

Six action plans were related to the home environment. Sub-categories of action plans in the home environment domain were household maintenance and upkeep.

Instrumental Support

Eight action plans were thematically coded within the instrumental support domain. Within the instrumental support domain, sub-categories of action plans were care coordination with social network, ‘Prepare for your Care’ conversations³⁴, accessing local resources, and specialty care referral.

Other

Three action plans were coded as Other as they did not fit into any other domain, nor were there enough occurrences of these action plans to justify an additional domain. Examples include:

“to schedule health check-ups for my daughter and husband before our next meeting”

and

“walk through the Life purpose Activity with my husband to help him develop his own purpose statement”

Achieved Versus Unachieved Action Plans

Interventionists documented each week whether action plans were or were not achieved until the final session when caregivers were tasked with following up with their new accountability person (the action plan was not assessed). In total, 46 action plans were achieved, 23 action plans were not achieved, and 16 action plans were not assessed. On average, caregivers achieved 66.7% of their assessed action plans (range: 33.3%−100%). All caregivers achieved at least one action plan (range: 1–3). Table 3 and Figure 1 show the achievement rates within each action plan domain. Action plans coded to the social support domain had the highest rate of achievement (n=14, 81.8%). Within the personal health and well-being domain, which saw the majority of action plans, preventive health/medical care for caregivers (n=5, 100%) and caregiver wellness (n=5, 100%) action plans were the most likely to be achieved. Physical activity (n=14, 50%) and recreational activities/travel (n=10, 40%) action plans were the least likely to be achieved as described in Figure 2. In examining unachieved action plans, we noted that some caregivers demonstrated a positive trajectory of completion with more action plans completed towards the end of the intervention. In three cases, the action plan set at Visit 1 was not achieved and then was refined at the second visit to be more moderate and achievable. For all three cases, the action plan was achieved by the third visit.

Table 3:

Action Plan Thematic Categories and Sub-categories by Achievement

Action Plan Thematic Category	Assesed (N)	% Achieved	% Not Achieved	Not Assessed (N)
Instrumental Support	8	75	25	4
Social Support	14	81.8	18.2	3
Personal health & well-being	54	60.9	39.1	8
Home environment	6	60	40	1
Other	3	66.7	33.3	0
Action Plan Thematic Subcategory	Assesed (N)	% Achieved	% Not Achieved	Not Assessed (N)
Physical activity	14	50	50	1
Self-care	10	60	40	3
Preventive health/medical care for caregivers	5	100	0	1
Recreational activities/travel	10	40	60	3
Caregiver wellness	5	100	0	0
Productivity/business/career	1	50	50	0

Figure 1:

Action plan thematic codes by category

Figure 2:

Action plan thematic subcodes within the “personal” action plan domain

Life Purpose Statements

Life purpose statements (n=22) tended to be future-oriented, expansive, and positive. Statements were organized into four categories with overall distribution as follows: faith/spirituality (n=17), self-care/actualization (n=11), family/social connection (n=8), and health (n=6) (Table 4).

Table 4:

Exemplars life purpose statements by thematic category

Purpose Statement Category	Exemplar Life Purpose Statement
Family/Social Connection	“I hope that I am able to live a full life surrounded by people that I love and that we are able to form a warm, genuine connection while spending quality time doing the things we enjoy.”
Self-Care/Self-Actualization	“I dream to be at peace and content, to be taken care of, to not worry about the future by choosing to not worry and focusing on what I have. I will do this by practicing self-care (taking day off, short getaways, exercise classes). and starting a gratitude practice.”
Faith/Spirituality	“My purpose is to live out my faith through listening and believing in God’s word, loving my family, and sharing His word through song.”
Health	“My purpose is to live well by continuing to be healthy, maintain my relationships with significant people in my life, and to have new experiences that I enjoy (traveling, experiences with grandchildren etc).”

Discussion

The results of our study suggest that action planning in the context of the Caregiver Support intervention allowed for the achievement of action plans related to unmet needs of HF caregivers. The majority of action plans fit in the personal health and well-being category, with action plans for preventive health/medical care for caregivers most likely to be achieved. Additionally, engaging social support in caregiving and caregiver personal health action plans had high achievement rates. However, while caregivers wanted to focus on physical activity, achieving these action plans was the most difficult. Life purpose statements highlighted values such as family and faith. Previously literature has primarily focused on goals and action plans of older adults or included caregiver goals and action plans as extensions of caring for an older adult.^8,32,35,36 Our study is focused solely on caregivers and emphasizes their personhood holistically, moving beyond solely their relationship in caring for another person.

The recent scientific statement, “Family Caregiving for Individuals With Heart Failure” identified four key areas of unmet needs for caregivers of persons with HF approaching end of life including: knowledge support, support with care tasks, support navigating health systems, and support with personal/family issues.⁵ Although not all of our caregivers were caring for persons approaching the end of life, most of the action plans in our study involved goals related to support with personal/family issues, but all four areas of need identified in the scientific statement reflected in action plans (figure 3). Our findings also align with those from previous studies in which allowing the participant to prioritize their own goals and strategies increased their confidence to use coping skills with other problems.^37,38 Studies incorporating a similar approach have resulted in increased positive coping strategies, improved quality of life, self-efficacy related to falls, depression and decreased disability.^37,39–41 Similar to other studies, action planning helped caregivers identify their priorities, allowed for collaborative problem solving and helped caregivers monitor progress towards action plan achievement. Achievement of action plans was facilitated by accountability, follow-up, and flexibility with changing caregiving demands, similar to other nurse-led interventions in HF that promote self-efficacy.⁴¹ Emergencies and urgent tasks related to their person with HF often disrupted caregivers’ routines and intervention sessions, therefore action plans that were reliant on establishing a new routine/habit (i.e., exercise) were more difficult to achieve. In response, caregivers were encouraged to revisit action plans and to set realistic action plans with their new situation. Flexibility to support caregivers when and how they need it is a focus of national advocacy.^6,42

Figure 3:

Mapping Action plan sub-domains to unmet needs of heart failure caregivers¹

Note: Adapted from Kitko et al (2020), “Family Caregiving for Individuals With Heart Failure” figure 2

The life purpose activity provided an opportunity to articulate and synthesize values, make meaning from past difficulties and think about the future. Initially, we expected to see more overlap of life purpose and action plans. However, while faith was central to many purpose statements, it was less reflected in action plans. Recent literature reviews have found virtually no emphasis on spiritual needs in studies of persons with HF or HF caregivers.^43,44 This reveals an important topic to explore in future studies. In addition, a potential improvement to our intervention could be to ask caregivers if their spiritual wellbeing is important to them and set action plans related to their priorities. This may require additional training with chaplains or faith leaders on the topic of spiritual wellness. Although it may seem to lack synergy, the thematic differences between action plans and life purpose highlights the importance of promoting caregiver-driven activities. We know of only 1 study of older adults with a focus on life purpose in the intervention,²⁰ but they did not report life purpose statements. We have not identified studies of caregivers in which life purpose statements were summarized, although in the cancer population meaning-centered psychotherapy for caregivers has been a successful strategy for improving caregiving outcomes and does include a session focused on life purpose.⁴⁵

The Caregiver Support intervention is strongly tied to palliative care approaches that emphasize values, purpose and goals as central to shared decision making, with emphasis on maintaining well-being.^7,28–30 Because the experience of caregiving is so related to context, including the relationship dynamics, home environment and social support available to both the patient and caregiver, it is essential that multi-component interventions are flexible to address these many contextual factors. By encouraging caregivers to set their own goals for self-care and to address caregiving needs, we prioritized the caregivers’ expertise about their own context. This promotes health equity and person-centeredness by tailoring to the needs of each person, yet the intervention is still standardized and replicable. However, we acknowledge that our current healthcare and reimbursement system is not well-designed to meet the needs of caregivers; heart failure providers are unlikely to adapt specialty patient visits for meeting caregiving needs and similarly caregivers are unlikely to obtain services like this program through their own primary care physicians. Still, models exist in cancer^45–47 and dementia^45–49 that could be considered and new billing codes create opportunities for provision of care to caregivers⁴², but would need further adaptation and testing in the HF caregiving population.

Implications/Next steps

It is possible that interventions like ours that use action planning may engage caregivers to use their existing resources and seek out new ones to meet their unmet needs which could ultimately lead to improved caregiver well-being and quality of life. However, it is still unclear if action planning that is specifically in service of (directly related to) a caregiver’s purpose in life is particularly impactful. Future studies should examine the relationship between the action planning, achievement and key caregiver reported outcomes of health and quality of life in future analyses. We anticipate examining achievement of action plans (e.g., exercise or physical activity) in a future efficacy trial of the Caregiver Support intervention.

Limitations

This analysis has important limitations to consider. Action plan achievement was measured by participant self-report as opposed to a more standardized measurement tool. There is also potential for social desirability bias because the nurse interventionists collected data on the achievement of action plans. In addition, we did not rate action plans as ‘partially achieved’, which may have added some nuance to our understanding of action plans rated as not achieved. Our sample was small as this data was collected during a pilot study aimed at feasibility and acceptability of intervention components and therefore has limited generalizability. In particular, given that only two male caregivers participated, it is likely that we there are gender differences in the way caregivers set action plans and described life purpose statements. A larger efficacy trial will be needed to test the intervention and multiple recruitment strategies should be considered to enhance the diversity of the sample. Finally, the timing of the study coincided with the COVID-19 pandemic. Although no action plans or life purpose statements explicitly made mention of the influence of the pandemic, it is likely that the physical and social distancing had a particular impact on caregivers, but we were unable to account for this historical bias.

Conclusions

As part of the pilot Caregiver Support pilot trial, we analyzed action plans, achievement, and life purpose statements set by caregivers of persons with HF. The thematic content of action plans and life purpose statements was diverse and represented a holistic view of the caregivers as individuals; while there was some overlap in thematic cateogries, we saw themes specific to each activitiy, suggesting that our intervention allowed caregivers to think broadly and bring their entire selves to the process. By analyzing this participant-centered and -driven data, we highlight the diversity of caregiving needs and values, particularly caregivers of person with HF. This diversity in values and needs supports the individualized, caregiver-centered approach of Caregiver Support. We recommend further inquiry into thematic content of action planning and life purpose, especially in other caregiver populations.

Highlights.

• Caregivers created action plans and life purpose statements in the Caregiver Support intervention.

• Action plans and life purpose statements highlighted diverse needs and values.

• Person-centered support could be beneficial for caregivers in the future.