Domains of Caregiving in Parkinson’s Disease: A Framework Developed Through Perspective Mapping

Abstract

Background:

Carers of Persons with Parkinson’s disease (PwP) have significant palliative care needs that are not adequately addressed in current models of care. To provide holistic and targeted support to carers it is important to understand their perceptions of the multiple dimensions of caregiving (defined as domains) and associated core components within each domain (defined as key concepts).

Purpose:

To (a) elicit carers’ perceptions and experiences of caregiving domains and associated key concepts within each domain, and (b) develop a framework of Parkinsons Disease (PD) caregiving incorporating the domains and their associated key concepts.

Methods:

We conducted a qualitative descriptive study using perspective mapping, a novel hybrid mind-mapping method to develop a framework on the domains of PD caregiving. Semi-structured virtual interviews were conducted with former carers of PwP to elicit their experiences and perceptions of caregiving. Interviews were audio-recorded, de-identified, and transcribed. A codebook was developed and data were coded and analyzed to develop the framework of PD caregiving domains.

Results:

Fifteen carers participated in the study. A framework of PD caregiving was developed that comprised nine domains and 52 key concepts. The domains included decision-making, caregiving preparedness, care coordination, disease management, preserving self, emotional, spiritual, social/cultural, and physical.

Conclusions:

A carer-elicited framework of PD caregiving is important to provide holistic support to PD carers. Both carers and clinicians may benefit from this framework that may help with identifying caregiving domains that require targeted support. Future research is needed to further refine the framework and build carer-centered intervention development.

Introduction

Persons with Parkinson’s disease (PwP) experience multiple motor and non-motor symptoms including gait imbalances, tremor, pain, dementia, fluctuating cognition, neuropsychiatric behaviors, and sleep disruptions. These symptoms can result in emotional, physical, existential suffering, and high caregiving distress. From the time of receiving the diagnosis and throughout the illness trajectory PwP and their carers have a range of palliative care needs including managing symptoms, emotional, spiritual, and psychosocial needs, and financial hardships.^1,2 Informal unpaid family carers who are often older adult spouses are at high risk for chronic illness,^3,4 anxiety, and depression.^5,6 Beyond knowledge of disease symptoms and medications, carers of PwP desire emotional,⁷ social, and spiritual support and the lack of attention to their needs leads to demoralization, suffering, and reduced quality of life.

While palliative care specialists are integral to the care of those with intense and complex needs, all clinicians can use a palliative approach to address the needs of PwP and carers from the time of diagnosis and throughout the trajectory of the illness.^8,9 The operational definition of palliative care for PD includes not just the management of non-motor symptoms and support for PwP’s emotional and spiritual needs, but also the recognition of and support for carers’ needs.¹⁰ There is evidence that integrated outpatient palliative care improves PwP and carer outcomes.¹¹

Despite these efforts, in clinical settings caregiving has often been conceptualized as inherently stressful and burdensome and operationalized as an adverse effect of caregiving on social, emotional, financial, and physical functioning.^12,13 Carer burden, often assessed using standardized instruments such as the Zarit Burden Inventory¹⁴ is important to clinicians who are charged with the responsibility of managing PD symptoms and caring for the PwP. However, carers do not view caring for their family member as burdensome¹⁵ and positive and negative experiences often co-occur during stressful times.¹⁶

Although the importance of carers in supporting patients is undisputed¹⁷ there aren’t any PD related standards or caregiving frameworks for clinicians to utilize to support carers. Yet it is known that carers desire practical guidance, strategies for managing disease symptoms, where and how to access resources, emotional and spiritual support, and to understand the road ahead including bereavement support when the time comes.¹⁷ Within palliative care, there are models to guide care for patients and families,¹⁸ and a conceptual model with key variables to guide interventions for family carers of those receiving palliative care that goes beyond stress and burden and encompass preparedness, social support, and the positive dimensions of the caregiving.¹⁹ However, despite a growing body of literature on PD carer experiences and perceptions,^15,20,21 there is a lack of framework of caregiving in PD and a lack of knowledge of carers’ perceptions of the domains of caregiving.

A participant-informed framework of PD caregiving will enable carers and clinicians to identify core caregiving needs that can guide conversations around carers’ changing needs and priorities over time. Thus, the aims of this study were to (a) elicit carers’ perceptions and experiences of caregiving domains and associated key concepts within each domain, and (b) develop a framework of Parkinson’s Disease (PD) caregiving incorporating the domains and their associated key concepts. Of note, in this study the term “domain” refers to a dimension of caregiving and the term “key concept” refers to a core component of the domain.

Methods

Study Design

We conducted a qualitative descriptive online interview study using perspective mapping.²² Perspective mapping (PM) is an interview technique in which study participants and researchers co-create a branching visual diagram of the participant’s experiences related to a phenomenon of interest using mind mapping software. The approach has been used in prior studies to identify meaningful disease-related symptoms.^23-25 PM is suitable for the development of frameworks grounded in the lived experiences of the population of interest. Consistent with the method of PM, in this study we refer to the dimensions of caregiving as domains and the core components of the domains as key concepts.²²

Participant Selection

We used purposeful sampling to recruit study participants as it allows for the selection of “information rich cases” who can provide in-depth information on the phenomenon of interest,²⁶ which for this study was to learn about caregiving in PD. Thus, study participants were former carers of PwP where the PwP had died between 1-2 years prior to study enrollment. We intentionally chose former carers as they had lived experiences in caregiving and could (a) provide informed perspectives on all the domains of caregiving over the course of the illness, and (b) had the time to engage in this study without the immediate pressures of caregiving. Eligible participants were English-speaking adults and included former carers recruited from (1) Parkinson’s Disease and Lewy Body Dementia support groups, (2) referrals from clinicians at a neuropalliative care clinic, and (3) a pool of carers known to the research team from prior studies who had expressed an interest in participating in future studies. The research coordinator contacted potential participants by telephone and explained the study procedures and goals to all study participants prior to enrollment.

Data Collection & Analyses

In preparation for the interview, a preliminary perspective map of caregiving domains and key concepts within each domain was derived from the literature^18,19 and from the UC-Davis Domains of Caregiver Preparedness.²⁷ Authors SS and JRM created an initial mind-map comprising 7 domains and 41 key concepts (Table 1) using X-mind mapping software.²⁸ Within the mind map each domain was represented by a single node, that could be expanded to display related key concepts. Perspective mapping allows for notes of the participant’s experiences related to each key concept to be made in real time with the evolving map being visible to both the interviewer and the participant.²⁵ A sample map of the notes related to a single domain is shown in Figure 1.

Table 1.

Initial Domains and Key Concepts Used in the Pilot Test

Domain	Key concepts
Practical	Communicating with PwP Care coordination Transportation Transporting Telemedicine support Activities of daily living- personal care, household activities, etc. Finance management Insurance
Disease management	Medication management Knowledge about illness Access to medical professionals in a timely manner Management of adverse or serious medical problems Management of co-morbidities
Psychological	Emotional support for depression Emotional support for apathy Medical management of mood related symptoms Managing dignity
Spiritual	Finding meaning for self Supporting meaning making for PwP Support for existential concerns Spiritual values (own and family) Religious values and support Spiritual support
Social	Cultural values with illness and care Managing social engagements Privacy Intimacy Legal help Guardianship concerns Managing family relations
Physical	Lifting Supporting Toileting Bathing Feeding Wound care
Loss/grief	Own losses Own grief PwP’s losses Support for own losses and grief Support for PwP’s grief and losses

Figure 1.

Sample mind-map and interview notes

Pilot Test of the Perspective Map

Authors SS and AC pilot tested the initial map with a former carer known to the research team to assess (a) the alignment of the domains and associated key concepts with caregiving experiences, and (b) the feasibility of using a virtual mind-map to guide the interview and facilitate effective data collection. After the interview, the participant’s feedback was sought and necessary modifications were made. For example, the domain “Loss/Grief” was renamed as “Emotional” based on participant feedback that they experienced love and gratitude in addition to loss and grief. The revised mind map was utilized for data collection.

Data Collection

Authors SS and AC conducted online semi-structured interviews between December 2024 and May 2025 via computer video conferencing. Interviews averaged 60 min in duration (range 45-90 min) and notes were taken in real-time. All interviews were audio-recorded, de-identified, and transcribed.

The interview guide comprised prompts that were used primarily to elicit responses and facilitate discussions (Table 2). Participants were informed that the organization of domains on the map was random and did not indicate an order of importance. They were accordingly invited to share their thoughts and experiences (positive or negative) in any order of personal preference. Notes were taken during the interview and at the end participants were also asked to provide feedback on the domains and key concepts and feedback on the domains and key concepts. Suggested modifications to terms were iteratively incorporated and presented to each successive participant until all modifications were acceptable to five consecutive participants. Interviews were conducted until there was evidence of data saturation.

Table 2.

Semi-Structured Interview Guide With Sample Questions

Overview [This guide uses vocabulary that is easy to comprehend. Therefore, instead of the term “domain” we use the term “area of caregiving,” and instead of “key concepts” we use the terms tasks/activities/aspects.] What you see here is a map of multiple areas of caregiving that you may have experienced when you were caring for your family member. Please take your time to look at this map. Each area of caregiving has related tasks/activities/aspects associated with it. Which area of caregiving would you like to start with? [Interviewer clicks on the domain and opens the selected domain and related tasks/activities/aspects of caregiving ] Please talk to us about why this is important to you and share any experiences positive or negative associated with it. [Interviewer repeats this question after each domain has been discussed and follows the participant’s lead on each subsequent domain]

Participant feedback on caregiving domains and key concepts Are there any areas of caregiving that are not captured in this map? Are there any activities or tasks of caregiving related to any area that are not captured in this map? Are there any areas of caregiving that need to be phrased differently and why? Are there any areas of caregiving that in your experience are duplicated or need to be removed?

Data Analyses

Researchers first reviewed transcripts, maps, and in-vivo notes gathered during the interview to inform the development of the codebook. Next, authors SS and AC coded five transcripts independently resolving any discrepancies through consensus. After that the remaining transcripts were coded and participant quotations and suggestions for modifications if any were extracted and organized on a spreadsheet. The research team reviewed the spreadsheet to identify patterns of responses and suggestions for modifications of wording of terms. For example, the key concept “Timely access to care” under the domain of Care Coordination was reworded as “Getting timely appointments” because the patterns of responses indicated participants’ responses related to obtaining timely appointments rather than accessing care.

Results

A total of 19 potential participants were approached of whom 15 were enrolled. Four declined participation due to competing priorities or did not respond when contacted. Study participants were predominantly white (94.1%), female (86.67%) and spouses (80%) with an average age of 69.5 years (range 52-81 years) (Table 3).

Table 3.

Demographic Characteristics (n = 15)

	Mean (range)
Age (years)	69.5 (52-81)
	% (n)
Gender identity
Male	13.33 (2)
Female	86.67 (13)
Relationship to PWP
Spouse	80 (12)
Adult child	20 (3)
Ethnicity
Hispanic/Latino (no)	100 (15)
Race
White/Caucasian	93.33 (14)
Black/African American	6.67 (1)
Marital status
Married	6.67 (1)
Widowed	80 (12)
Divorced	13.33 (2)
Shared the same household as your loved one with Parkinson’s disease
Yes	73.33 (11)
No	20 (3)
Sometimes	6.67 (1)

Study participants felt the framework of caregiving helped them reflect on their experiences and the enormity of the role that they had willingly undertaken. One participant said the having such a map that “could break it down visually like this” would have been very helpful to her when she was caring for her husband. Another participant felt it was “appalling” that most carers “do not have access” to the map so they could see “areas you need to be thinking about.”

The final map of PD caregiving included 9 domains (Decision Making, Caregiving Preparedness, Care Coordination, Disease Management, Preserving Self, Emotional, Spiritual, Social and Cultural, and Physical) and 52 associated key concepts (Figure 2). Although the domains are depicted as distinct areas of caregiving, they are not intended to be discrete from each other as caregiving is woven into every aspect of daily life. A description of the domains and their associated key concepts is provided in Table 4 and a summary of study participants’ perceptions and experiences in relation to the domains and key concepts is provided below.

Figure 2.

Map of PD caregiving domains and key concepts

Table 4.

Final PD Caregiving Framework of Domains and Key Concepts

Domain	Key concepts
Decision making	Treatment decisions: Collaboration between carers, family members, and healthcare professionals to determine the most appropriate plan of care for the PwP. Financial and legal decisions included actions such as safety and care decisions included Financial and legal decisions: Arranging trusts, wills, advanced directives, powers of attorney, and guardianships etc. Safety and care decisions: Decisions around the need for physical supports such as walkers or need for transition to a nursing home setting.
Caregiving preparedness	Discussions on caregiving role and expectations: Early conversations between carer and PwP on each person’s role and their expectations of the other with regard to caregiving and receiving care. Advocating for self and PwP: Experiences with needing to advocate for needs with clinicians or government or non-profit agencies Future planning (legal/financial/medical care): Gaining timely knowledge of processes, paperwork, agencies, local resources etc. Accessing support services: Having access to rehabilitation services or home health aides etc. Managing family discussions & conflicts: The ease or difficulty with coordinating and discussing the PwP’s health and treatment plans. Finding reliable disease & disease management information: Knowledge of sources of reliable information (eg, clinicians, national and local PD/LBD organizations, support groups, peer navigators etc.) Coping with neuropsychiatric behaviors: Strategies to cope with and respond to PwP’s neuropsychiatric behaviors. Medical insurance: Having a roadmap of the illness trajectory and knowledge of how to navigate medical insurance current and future.
Care coordination	Getting timely appointments: Navigating challenges with scheduling medical appointments to prevent delays in care. Communication with doctors/medical staff: Interactions between carers and health care providers, affected by the clarify of the communication and the extent to which the information is understood and addressed. Transportation to and from medical appointments: Managing reliable transportation for the PwP, including logistical, physical, financial challenges associated with travel. Managing communication between doctors/specialists: Facilitating communication between multiple health care providers to ensure continuity of care. Coordinating family support: Distributing caregiving responsibilities among multiple family members. Coordinating support from home health aides/nurses: Facilitating in-home services to address PwP’s care needs.
Disease management	Symptom knowledge and recognition: Carer’s ability identify, understand, and monitor symptoms related to disease and changes from baseline. Medication and side effects management: Administering medications as prescribed, monitoring effectiveness, managing side effects, and communicating medication-related concerns to the provider. Special diets and swallowing management: Implementing dietary modifications to promote health and manage dysphagia. Symptom management: Strategies used by carers to manage disease-related symptoms Comorbidity management: Managing other health conditions in addition to the primary disease.
Preserving self	Maintaining own identity: The ability of the carer to retain a sense of self outside of the carer role. Prioritizing own needs: Carer’s efforts to tend to their own physical, emotional, and social needs while serving in the carer role. Preserving own health: Actions taken by the carer to maintain their physical and psychological well-being. Physical respite from caregiving: A temporary break from the physical demands of caregiving. Emotional respite: Relief from the emotional demands of caregiving. Guilt management and being kind to self: Coping with feelings of guilt by practicing self-compassion. Recognizing and managing caregiving trauma: Seeking strategies to mitigate caregiving-related trauma.
Emotional	Providing companionship to patient: The carer’s efforts to offer presence and social interaction to the PwP to decrease isolation and promote connection. Coping with loss and loneliness: Dealing with social isolation and changes in the PwP or the relationship. Maintaining patient’s dignity: Carer’s attempts to preserve the PwP’s dignity by providing privacy, autonomy, and personal grooming. Feeling and expressing love: Sharing affection and having emotional closeness with the PwP. Feeling heard and understood by others: The extent to which the carer feels that their experiences are acknowledged and understood by others, including family, friends, and health care providers. Feeling and expressing gratitude: Recognizing and appreciating the positive aspects of caregiving. Grief and emotional fatigue: Feelings of emotional exhaustion associated with caregiving, encapsulating both anticipatory grief and cumulative losses. Making room for humor: Using humor as a strategy for coping with the caregiving experience.
Spiritual	Finding meaning in caregiving: Deriving a sense of purpose or personal meaning from the caregiving experience. Having spiritual supports: Engaging with sources of spiritual support including clergy and faith communities. Values, and meaningful practices/rituals: Participating in meaningful spiritual or personally valuable practices such as prayer, meditation, or religious services. Finding answers to “why?” or existential questions: Carer’s attempt to make sense of illness and suffering through reflection. Finding ways to sustain joy: The carer’s ability to create moments of happiness despite the challenges of caregiving.
Social and cultural	Family, cultural, personal beliefs and values about caregiving: The influence of family, cultural background, and personal values on the carer’s attitudes toward the caregiving role. Maintaining social relationships: Preserving connects with family, friends, and community while balancing caregiving responsibilities. Social isolation and loss of prior connections: Carer’s experience of becoming disconnected from previous relationships or activities. Having meaningful leisure and social activities: Engaging in personally meaningful activities that promote the carer’s well-being and quality of life.
Physical	Bathing, cleaning, toileting needs: Providing assistance with personal hygiene and elimination needs. Physically lifting or transferring: Moving and transferring PwP safely to prevent injury to the carer and PwP. Feeding: Assisting with eating and drinking to support adequate nutrition and hydration. Managing safety: Providing for the PwP’s safety, including fall and elopement prevention and minimizing environmental hazards. Operating medical equipment (e.g. pumps, monitors, urinary catheters etc.): Managing the medical devices required for the PwP’s care. Wound care: Providing treatment for wounds and monitoring for wound complications.

Decision-Making

The Decision-Making domain emphasizes the carer’s readiness and ability to engage in making decisions across three key concepts of treatment decisions, financial and legal decisions, and safety and care decisions (e.g. nursing homes). One participants found decision making to be challenging because she “..had to be the rational one… I wasn’t allowed to have emotions because I had to make sure that I was providing education to my sister and my father, and making sure they understood.” Other participants who found this domain to be easy were able to joint decisions with their family members.

Caregiving Preparedness

Initially termed as “Access to Resources,” this domain was changed to “Caregiver Preparedness” based on participant feedback that caregiving entailed more than accessing resources. A study participant felt she had been unprepared despite reading and talking to the doctors and wished she had had the framework as it gave her specific areas to consider. She Participants reported varied experiences across the key concepts.

Care Coordination

During the pilot test this domain had been termed as “Practical.” The pilot test participant felt that the term “practical” was too broad and did not accurately represent their experiences and hence, it was changed to care coordination. To manage some non-motor symptoms, PwP are often referred to specialists such as gastroenterologists or cardiologists. Coordinating care and communication with multiple health care professionals or services can be challenging for carers. One participant reflected on his experiences with communicating PD related care with the primary care physician who “was not …an expert in her disease. So, it was literally me saying, ‘So we need a prescription for home care, and this is why,’ and getting the medical records…”

Disease Management

Managing multiple and sometimes complex PD symptoms such as dysphagia, hallucinations, or falls and symptoms related to the PwP’s comorbidities can be challenging. For a study participant, the key concept of managing medications and side effects was especially challenging, as she, “mostly learned about medication side effects on our own by looking stuff up,…’cause they’d have, you know, a million things on the side of every bottle.”

Preserving Self

With high caregiving demands, carers often experience a loss of their own identity and neglect their own needs. Initially termed as “Self-Care” this domain name was changed based on participant feedback to “Preserving Self” as it conveyed the importance of retaining their personal identity and participating in meaningful activities. This was exemplified by a participant who said, “…the other thing [about] preserving self was singing [in a choir]…gave [me back] a little bit of [my] own identity.”

Emotional

The map used during pilot testing comprised two domains, “Psychological” and “Loss-Grief.” Based on feedback that carers have positive and negative emotions and experiences, this domain was named as “Emotional” and comprised key concepts related to a range of emotions, activities, and experiences. As one participant said, “I would do a lot of crying, but not in front of him. …I think…for a long time it for my emotions to calm down and just to dig in and do the best we could.”

Spiritual

The Spiritual domain encapsulates the carer’s and PwP’s spiritual needs and includes making sense of the challenges. Some carers often struggle to find meaning in the suffering of the PwP and others find comfort in meaningful activities. A study participant reflected on this domain and said, “…we would watch Mass together and we would pray together, … then the beliefs and rituals, like, meditations…I would…light a candle, …take a few minutes for myself just to be present and breathe, you know? I could feel myself being restored”.

Social and Cultural

The Social domain was renamed as Social and Cultural to account for participants’ personal beliefs and values about caregiving. Caregiving often limited carers ability to interact with others as one participant recollected, “as time went on…I just didn’t go out much.” Other carers accepted these restrictions because, “…we had those cultural values. …you get married, you stay for better or worse” even if that meant no social interactions with others.

Physical

The Physical domain includes tasks to physically care for the PwP’s such as lifting, turning the PwP in bed to minimize bed sores, affected their own health. These tasks can impact carers’ health as one participant explained, “…it got difficult getting him in the car. I only weighed 90 pounds…and…I had to… [pull] him out a chair, and I have horrible osteoporosis and pain in my back.”

Discussion

In this study, we developed a framework of the domains of PD caregiving derived from the perceptions of former PD carers on their lived caregiving experiences. The nine domains of PD caregiving and 52 key concepts in the framework illuminate the complex nature of caring for a PwP. There have been calls to recognize caregiving as a global public health issue,²⁹and as a moral experience to address what really matter to carers and persons with serious illness that transcend financial costs.³⁰ Our framework that is based on carer insights, may facilitate clinical discussions around targeted areas of need over the long trajectory of the illness as well as the development of interventions and programs that address what matters most to carers.

Theories and models of caregiving in other illnesses have highlighted some caregiving concepts specific to different illness and stages of illness. An updated model of cancer family caregiving experience derived from concepts in the cancer caregiving literature highlighted concepts such access to treatment and support, illness related factors, and behavioral problems³¹ that we found in our study as well. In a study of caregiving at end-of-life utilizing ground theory methods, a model of caregiving included four phases.³² Broad concepts in caregiving in dementia include sociocultural factors³³ and components of self-management.³⁴

Several studies have examined carer burden in PD^12,13,35 and caregiving has been shown to be linked to poorer carer health through increased carer burden.³⁶ However, in our study we examined both positive and negative aspects of caregiving. Using caregiving concepts identified in prior work^18,19,27 as the foundation for our work our framework of domains of caregiving in PD focuses on contextual factors unique to PD caregiving and is based on the input of carers with lived experiences in caregiving. By deconstructing the concept of caregiving into multiple domains and related key concepts our framework provides a foundation for developing comprehensive, person-centered interventions that are aligned with what carers value most.

Clinical Implications

The domains of PD caregiving can provide clinicians with a checklist to assess and address the unique needs of carers of PwP and facilitate conversations between clinicians and carers on targeted areas of need. For example, in current models of care the emotional aspects of caregiving may be assessed through standardized depression or anxiety scales and addressed through medication or referrals to mental health counselors. Given that carers can experience emotional distress without necessarily being clinically depressed, this framework provides opportunities to go beyond referrals to mental health specialists and or pharmacological treatment. Clinicians and carers may be able to explore both positive and negative emotions so as to identify a targeted area for additional support.

The framework may guide assessment and care planning and shift the singular focus on carer burden and disease management tasks. It may help clinicians to better align care with family values and preferences, particularly within the neuropalliative care setting. Given the long trajectory of PD, this framework can be used to assess, monitor, and address the changing palliative needs of carers over time.

Strengths & Limitations

A major strength of the framework of PD caregiving is that it breaks down caregiving into concrete (though interrelated) domains and key concepts and was developed by eliciting PD carers’ perceptions of both positive and negative aspects of multiple domains and related key concepts of caregiving.

However, several limitations exist. First, the sample, though intentional, comprised former carers of PwP as opposed to current carers, which may introduce recall bias. Second, as the focus of the study was to develop a framework of PD caregiving that could lead to better support throughout the disease trajectory, we did not focus on caregiving at end of life. Third, all participants in this study were English-speaking and predominantly white, potentially excluding important cultural influences relevant to caregiving. Lastly, data collection was completed via computer video conferencing and may have excluded individuals who did not have access to computers or the internet.

Future Directions

Future research could expand on this framework by validating the domains of PD caregiving in more diverse populations of current carers. This framework can be utilized to elicit the perspectives of different types of current carers (spouses, adult children, extended family members) on the domains of caregiving that matter most to them and enable the development and testing of targeted person-centered interventions and/or programs.

Conclusions

This study provides a framework that captures the complex and multifaceted nature of PD caregiving that can facilitate targeted support to address PD carers’ unmet needs. It provides a foundation for developing targeted interventions, improving clinical practice, and informing future research aimed at supporting the well-being of PD carers.

Data Availability Statement

Individual participant data will not be shared. Although data were de-identified, it may be possible to identify respondents based on demographics and interview responses. Aggregated data are provided in the manuscript and can be shared upon request with qualified investigators whose proposed data use is approved by the study team.