Nursing care in adaptation to the role of informal caregivers of people with Parkinson’s disease

Abstract

Introduction

Parkinson’s disease (PD) is catastrophic, chronic, and neurodegenerative. In advanced stage requires a permanent informal caregiver. The adaptation of the caregiver to their role is unknown, a fundamental aspect to guarantee the quality of care.

Objective

Prepare a healthcare proposal with standardized language to promote the adaptation of informal caregivers of Parkinson’s patients to their social role.

Methods

Two-phase study: Literature review and preparation of a Care Proposal. Search in Proquest, Scielo, Scient Direct, Pubmed, and Google Scholar databases, in English, Spanish and Portuguese languages, for the last five years. Descriptors: Parkinson’s disease, Chronic disease, caregivers, adaptation, nursing process. The proposal articulates the Calixta Roy adaptation Model with the Nursing Process using NANDA-NOC-NIC taxonomy.

Results

Few publications on coping and adaptation of caregivers and on the Nursing Process to caregivers using standardized language. Committed adaptation modes: Role function and Self-concept. Relevant nursing diagnoses: Tiredness of the caregiver role, Interruption of family processes, Impairment of social interaction, Ineffective relationship, Compromised family coping, Willingness to improve self-concept, Risk of low situational self-esteem, and Body image disorder. Two NOC outcomes and three NIC interventions were linked for each diagnosis.

Conclusions

The articulation of the Calixta Roy Adaptation Model with the standardized language NANDA-NOC-NIC is an innovative contribution to the disciplinary and professional development of Neurological and Community Nursing. The proposal makes it possible to monitor the levels of adaptation of the informal caregiver and intervene in a timely manner.

Resumen

Introducción

La enfermedad de Parkinson (EP) es catastrófica, crónica y neurodegenerativa. En etapa avanzada requiere un cuidador informal permanente. Se desconoce la adaptación del cuidador a su rol, aspecto fundamental para garantizar la calidad asistencial.

Objetivo

Elaborar una propuesta de cuidado con lenguaje estandarizado para fomentar la adaptación de cuidadores informales de pacientes con Parkinson a su rol social.

Métodos

Estudio en dos fases: revisión de la literatura y elaboración de una propuesta de cuidados. Búsqueda en las bases de datos Proquest, Scielo, Scient Direct, Pubmed y Google Scholar, en idiomas inglés, español y portugués, últimos cinco años. Descriptores: Enfermedad de Parkinson, Enfermedad crónica, cuidadores, adaptación, proceso de enfermería. La propuesta articula el Modelo de adaptación de Calixta Roy con el Proceso de Enfermería utilizando taxonomía NANDA-NOC-NIC.

Resultados

Escasas publicaciones sobre afrontamiento y adaptación de cuidadores y sobre Proceso de Enfermería a cuidadores utilizando lenguaje estandarizado. Modos de adaptación comprometidos: Función de rol y Autoconcepto. Diagnósticos de enfermería relevantes: Cansancio del rol de cuidador, Interrupción de procesos familiares, Deterioro de la interacción social, Relación ineficaz, Afrontamiento familiar comprometido, Voluntad de mejorar el autoconcepto, Riesgo de baja autoestima situacional y Trastorno de la imagen corporal. Se vincularon dos resultados NOC y tres intervenciones NIC para cada diagnóstico.

Conclusiones

La articulación del Modelo de Adaptación de Calixta Roy con el lenguaje estandarizado NANDA-NOC-NIC es aporte innovador al desarrollo disciplinar y profesional de la Enfermería Neurológica y Comunitaria. La propuesta permite monitorear los niveles de adaptación del cuidador informal e intervenir de manera oportuna.

Introduction

Neurological disorders are the chief cause of disability in the world. After Alzheimer’s disease, Parkinson’s disease (PD) is the second most common neurodegenerative disorder, and it is the fastest growing.¹ According to the North American Parkinson’s Foundation, 10 million individuals worldwide live with PD.¹ The aetiology of this disease has been found to include compromised genetic, environmental^2,3 and lifestyle factors.^2,3 Incidence of the disease increases with age, and it is estimated that 4% of individuals are diagnosed before the age of 50 years⁴; it is also related to sex, as “men are 1.5 times more likely to have PD than women”.² Nevertheless, although it is more common in men, in women it leads to greater dependency and poorer quality of life.⁵

PD progresses slowly and, although in itself it is not a cause of death, it may give rise to a major fall in life quality and expectancy. It mainly affects the motor system and does so in different ways, with tremor, increased muscle rigidity and weakness, slow voluntary movements and difficulty in pronunciation when speaking. The degenerative process may consist of unilateral or bilateral involvement, difficulty in balancing and increasing speech difficulties. After 5–8 years individuals develop severe non-motor symptoms which do not respond to medication and gravely affect quality of life.^2,5

The PD epidemiological monitoring system has progressed over recent years.¹ Figures differ widely depending on geographical factors, and cases are concentrated in large cities. In Colombia a recent study gave a figure of 205.9 cases per 100,000 inhabitants, with constant increase over the age of 40 years and an increase in frequency of 83.65% between the ages of 50 and 80 years. Associated comorbidities included hypertension, diabetes and psychiatric diseases.⁶

Due to the nature of the disease, individuals with PD have to be cared for in their home by family members, friends, neighbours, support or other networks. Moyano defines a caregiver as “the person who assists or cares for another who is affected by any type of disability, handicap or incapacity which hinders or prevents their normal activities in life or their social relationships”.⁷ Conde-Sala defines an informal caregiver as “someone who helps in a non-professional capacity, either partially or completely, someone in their circle who is dependent for their everyday activities. This regular help may be given permanently or not”.⁸ Just as each individual faces up to PD in a different and unique manner, requiring specific forms of care depending on the stage of the disease,² so informal caregivers also require professional help if they are to adapt to their role.^9,10

Nursing care to allow individuals to adapt to their environment is the basis of Callista Roy’s adaptation model.¹¹ This nursing theorist believes that the adaptive system of an individual interacts continuously and permanently with internal and external environmental stimuli; they use “regulator” and “cognator” coping processes in 4 adaptive modes: physical-physiological, self-concept, role function and interdependence for stimuli processing. The results are expressed in behaviour.¹¹ Nursing care is necessary when unusual stressful stimuli or weakening coping mechanisms make an individual’s defences ineffective; the final purpose of care is to promote patient adaptation, bringing them to a new level of well-being.¹²

According to Roy the nursing process involves 6 phases¹²: 1. Stimuli evaluation; 2. Behavioural evaluation; 3. Nursing diagnosis; 4. Setting goals; 5. Intervention, and 6. Evaluation. In this work Roy’s theory is combined with standard nursing language, with the aim of identifying prevalent diagnoses (the North American Nursing Diagnosis Association (NANDA)),¹³ expected results (the Nursing Outcome Classification (NOC))¹⁴ and nursing interventions (the Nursing Intervention Classification (NIC)),¹⁵ to achieve the adaptation of those who care for individuals with PD to their environment.

The nursing process must aim to adapt caregivers to their work, as they are a fundamental element in the quality of life of individuals with PD. They are impacted the most by the progress of the disease,¹⁰ and they too require care. A complete individual nursing assessment will supply valuable information to create care plans and put them into practice, taking the domains of human response into account. The need to broaden the knowledge base and propose actions to achieve caregiver adaptation to an individual with PD in family and community settings.

Objectives

Overall objective

To prepare a proposal for care using standardized language that aids the adaptation of informal caregivers of patients with Parkinson’s disease to their social role.

Specific objectives

• 1

  To review the literature which covers nursing care to adapt caregivers to their social role.

• 2

  To include Callista Roy’s adaptation model in the nursing process, using standardized language.

Methods

This is a two-phase descriptive study: 1. Review of the literature, and 2. The preparation of a care proposal.

Phase 1: This consisted of a search of the ProQuest, Scielo, Scient Direct, Pubmed and Google Scholar databases, as they are the ones used the most, in the English, Spanish and Portuguese language and covering the past 5 years. The health descriptors mentions in the DeCS platform were used, such as: “Parkinson’s disease”, “chronic illness”, “caregivers”, “adaptation” and “standardized nursing language”; the Boolean operator was AND, with the aim of guaranteeing that at least 2 criteria were present. A reference matrix was designed for data gathering, with the following information: year of publication, paper title, authors, reference (link), study objective, methodology, population studied, results and types of document. Scale validations were excluded, such as the Zarit test and those which cover acute neurological component alterations. Fig. 1 shows the flow diagram that was used in the review of the literature.

Figure 1.

Flow diagram of the search for papers.

Source: the authors.

Phase 2: The proposal connects the Callista Roy adaptation model with the nursing process using NANDA-NOC-NIC taxonomy.

The procedure included:

• 1

  Evaluation of focal, contextual and residual stimuli (associated factors).

• 2

  Evaluation of responses or caregiver behaviours (defining characteristics), which may be adaptive or ineffective.

• 3

  Nursing diagnoses [NANDA]: these were based on findings in the literature on the evaluation of PD patient caregiver stimuli and responses.

• 4

  Goal setting: degrees of adaptation were established based on the “regulator” and “cognate” coping mechanisms used by caregivers of individuals with PD: compromised, integrated or compensatory, and the expected results: [NOC].

• 5

  Intervention: nursing interventions [NIC] were planned according to diagnoses and the desired results.

• 6

  Evaluation: achievement indicators were defined for each desired result. The NOC indicators are shown in Tables 1 and 2.

  Table 1.

  Expected outcomes [NOC] in nursing care of caregivers of patients with Parkinson’s disease/form of adaptation: role function.

  Nursing diagnosis	Expected outcomes	Indicators
  [00061] Tired of caregiver’s role	[2203]Alteration of the lifestyle of the main caregiver	[220302] Carrying out the role
  		[220312] Relationship with friends
  		[220306] Social interactions
  		[220305] Relationships with other family members
  	[2508] Well-being of the main caregiver	[250801] Satisfaction with physical health
  		[250802] Satisfaction with emotional health
  		[250804] Satisfaction with carrying out habitual roles
  		[250811] The family shares care responsibilities
  [00060] Interruption of family processes	[2604] Normalization of the family	[260405] Adapts family routines to meet the needs of the affected member
  		[260407] Satisfies the psychosocial needs of family members
  		[260408] Satisfies the developmental needs of family members
  		[260415] Uses community support groups
  	[2600] Coping with family problems	[260005] Controlling family problems
  		[260003] Coping with family problems
  		[260009] Uses strategies to reduce family-centred stress
  		[260011] Sets family priorities
  [00052] Deterioration of social interaction	[1501] Carries out role	[150101] Carries out role expectations
  		[150103] Carries out family role behaviours
  		[150104] Carries out social role behaviours
  		[150112] Expresses comfort with role expectations
  	[1203] Severity of solitude	[120304] Feeling of hopelessness
  		[120307] Feeling of social isolation
  		[120310] Feeling that time drags
  		[120315] Mood swings
  [00223] Ineffective relationship	[2204] Relationship between main caregiver and the patient	[220401] Effective communication
  		[220402] Patience
  		[220410] Mutual respect
  		[220412] Sense of responsibility
  	[2205] Performance of chief caregiver: direct care	[220502] Helps care recipient in everyday life activities
  		[220513] Carries out necessary tasks confidently
  		[220521] Requests training for care activities
  		[220527] Meets care receiver’s psychosocial needs

  Source: prepared by the authors based on analysis of the results.
  Table 2.

  Expected outcomes [NOC] in nursing care of Parkinson’s disease patient caregivers /form of adaptation: self-concept.

  Nursing diagnosis	Expected outcomes	Indicators
  00074 Compromised family coping	[2506] Emotional health of main caregiver	[250604] Fear
  		[250607] Depression
  		[250609] Ambivalence about the situation
  		[250613] Perceived burdens
  	[2210] Stressful factors for family caregiver	[220801] Stressful factors mentioned by the caregiver
  		[220805] Role conflict
  		[220807] Perceived lack of social support
  		[220816] Loss of personal time
  00167 Preparedness to improve self-concept	[2012] State of comfort: sociocultural	[201201] Family social support
  		[201204] Relationships with friends
  		[201207] Social interactions with others
  		[201214] Desire to ask others for help
  	[1309] Personal resilience	[130901] Verbally expresses a positive attitude
  		[130903] Expresses emotions
  		[130905] Communicates in a suitable way for their age
  		[130907] Displays positive self-esteem
  00153 Risk of low situational self-esteem	[1205] Self-esteem	[120501] Verbal expressions of self-acceptance
  		[120505] Description of the ego
  		[120507] Open communication
  		[120519] Feelings about themselves
  	[1902] Risk control	[190201] Recognises personal risk factors
  		[190206] Commits to risk control strategies
  		[190208] Modifies lifestyle to reduce risk
  		[190214] Uses personal support systems to reduce risk
  00118 Body image disorder	[1200] Body image	[120002] Coherence between real body, ideal body and body image
  		[120005] Satisfaction with personal appearance
  		[120017] Attitude to the use of strategies to improve appearance
  	[1202] Personal identity	[120201] Verbally affirms personal identity
  		[120202] Displays coherent verbal and non-verbal behaviour about oneself
  		[120204] Self-differentiation from surroundings
  		[120207] Carries out social roles

  Source: prepared by the authors based on analysis of the results.
• 7

  For each nursing diagnosis 2 desirable NOC results were defined, and 4 achievement indicators were identified for each NOC. These indicators will be measured using the Likert scale scores defined for each one in the NOC manual.¹⁴ The aim of the interventions is to maintain the initial score and ideally increase it.

This study was considered to be free of bioethical risk. It was assessed by the Institutional Research Ethics Committee of the Fundación Universitaria del Área Andina de Colombia and approved with the code CVI2020-GIER-P20.

Results

The review of the literature found that few publications cover the relationship between PD and caregiver adaptation, so that references to caregivers of individuals with chronic neurological diseases were also included. The contents of the 20 papers selected for the study were analysed, and the relevant findings are described below:

The majority of informal caregivers for individuals with neurological disorders or sequelae of neurological diseases are female, and they are often family members and older adults.^16,17 The categories with the highest levels of saturation indicate the “Role Function” and “Self-concept” forms of adaptation.

Caregivers change their role when they start caring; the adaptation process involved in achieving their goals gives rise to conflicts in their social relationships and reveals problems in their self-care, and this is reflected in all aspects of their life; the intense, frequent and long-lasting overload affects the health and overall well-being of caregivers.^17,18 The following stimuli and behaviours in connection with the caregiver’s role stand out: concern about family members, difficulty in completing tasks,^8,18–20 changes in leisure activities,^8,18,21 alteration in the solution of family conflicts,^8,18,19 discomfort in social situations, insufficient support for undertaking everyday activities and overload which affects care quality.¹⁹ Some of the symptoms mentioned as well as anticipatory fears, anxiety, insomnia, somatic problems and chronic psychological stress are expressions of caregiver exhaustion.^19–22

Coming to see oneself as a caregiver is a process of adapting to a new situation in life, and it arises within the intersubjective dimension between a caregiver and the subject of care. This means that the “caregiver-person with PD” couple experience new negative and positive emotions, sharing ties, goals and values in an implicit relationship of mutual trust.^20,21 Some studies of the quality of life^17,22 and overload in those who care for individuals with a chronic disease^19–21 state that so much effort and time are required for caring that negative emotions arise even in close relationships. These find expression in exhaustion, frustration and intrafamily problems, together with a fall in self-esteem and self-care; positive emotions also arise, of love, hope, motivation and wishing to learn how to care for oneself and the other²³; these characteristics show the commitment in the form of adapting one’s self-concept.

Fig. 2 shows Callista Roy’s mechanism of adaptation and the standardized NANDA-NOC-NIC nursing language in how the caregivers of individuals with PD adapt. The upper part shows caregiver behaviour as an adaptive system of involvement with the person they care for. Focal, contextual and residual stimuli trigger coping processes that generate adaptive or infective responses, and these are reflected in forms of compromised adaptation. The next part shows the structure of the nursing process: based on evaluation of the caregiver as an adaptive system, the forms of compromised adaptation and relevant nursing diagnoses are identified, which determine the expected results as well as nursing interventions. The latter modify the indicators of the expected results, and these in turn become stimuli for the commencement of new adaptation processes in those who care for individuals with PD.

Figure 2.

Integration of Callista Roy’s adaptation model and NANDA-NOC-NIC standardized language for caregiver adaptation to individuals with Parkinson’s disease.

Source: the authors.

Tables 1 and 2 show the proposed nursing care for caregivers of individuals with PD. Two forms of compromised adaptation were identified as priorities for caregiver well-being: role function and self-concept.

Table 1 describes the nursing diagnoses [NANDA], expected outcomes [NOC] and indicators deriving from the commitment to the form of functional role adaptation; this focusses attention on the execution of caregiver activities associated with the roles that they play in the family and society. The following factors were identified as relevant: [00061] Tiredness of caregiver’s role; [00060] Interruption of family processes; [00052] Deterioration of social interaction and [00223] Ineffective relationship.

Table 2 describes the nursing diagnoses [NANDA], expected outcomes [NOC] and indicators deriving from the commitment found to the form of adaptation: self-concept; this involves the feelings of the caregiver regarding their body and person. The resulting diagnoses were: [00074] compromised family coping; [00167] Preparedness to improve self-concept; [00153] Risk of low situational self-esteem and [00118] Body image disorder. Tables 3 and 4 show 3 nursing interventions [NIC] that were selected as relevant and the specific actions taken for each nursing diagnosis formulated in the role function and self-concept adaptation modes.

Table 3.

Nursing interventions with Parkinson’s disease patient caregivers /form of adaptation: role function.

Nursing diagnosis	NIC INTERVENTIONS	Activities
[00061] Tired of the caregiver’s role	[7040] Support for the main caregiver	• Determine caregiver’s level of knowledge
	[7260] Taking turn to care	• Determine degree to which caregiver accepts their role
	[7140] Family support	• Admit the difficulties of the main caregiver’s role
		• Make preparations for the replacement caregiver
[00060] Interruption of family processes	[7130] Maintenance of family processes	• Determine alteration in family processes
	[5370] Strengthen roles	• Observe family structure and roles
	[7110] Encourage family involvement	• Facilitate conversation about adapting family roles
		• Encourage or establish contact with family members
		• Help family members to use support mechanisms
[00052] Deterioration of social interaction	[5370] Strengthen roles	• Encourage the patient to identify a realistic description of the change of role
	[7110] Encourage family involvement	• Facilitate conversation about adapting to family roles to compensate for the changes in the role of the sick family member
		• Facilitate conversation between the patient and their loved one about expectations for reciprocal roles
		• Facilitate reference group interactions as part of the learning about the new roles
[00223] Ineffective relationship	[5230] Improve coping	• Help the patient to identify appropriate short and long-term goals
	[7100] Stimulate family unity	• Help the patient to evaluate the available resources for achieving the goals
	[5430] Support group	• Determine family feelings about the situation
		• Identify the family’s typical coping mechanisms
		• Help the family to keep positive relationships
		• Determine the level and suitability of the current patient support system

Source: prepared by the authors based on analysis of the results.

Table 4.

Nursing interventions with Parkinson’s disease patient caregivers /form of adaptation: self-concept.

Nursing diagnosis	NIC INTERVENTIONS	Activities
[00074] Compromised family coping	[7140] Family support	• Determine the psychological burden for the family with the prognosis
	[7100] Stimulation of family unity	• Accept family values without expressing judgement
	[5430] Support group	• Respond to the questions asked by family members
		• Listen to family members
		• Determine family comprehension of the complaint
[00167] Preparedness to improve self-concept	[4920] Active listening	• Show interest in the patient
	[5100] Strengthen socialization	• Ask questions or make statements which encourage the expression of thoughts, feelings and worries
	[7460] Protect patient rights
		• Encourage greater involvement in established relationships
		• Encourage relationships with people who have shared interests and goals
[00153] Risk of low situational self-esteem	[5420] Spiritual support	• Use therapeutic communication to create trust and empathy in care
	[8340] Strengthen resilience	• Favour life review through reminiscences
	[4390] Therapy with surroundings	• Encourage participation in interactions with family members, friends and other people
		• Be open to the individual’s expressions of worry
		• Control environmental factors to maximize adaptive behaviour and minimize poorly adapted behaviour
[00118] Body image disorder	[5230] Improve coping	• Help the patient to resolve problems constructively
	[5250] Support decision-making	• Evaluate the impact of the patient’s situation in life on roles and relationships
	[4410] Establish shared goals	• Use a serene and calming approach
		• Help the patient and those close to them to develop realistic expectations in how they perform their roles
		• Identify the goals of care with the patient
		• Help the patient to set realistic time limits

Source: prepared by the authors based on analysis of the results.

Discussion and conclusions

No documents were found in this review on nursing care for caregivers of individuals with PD, and no papers were found that connected Callista Roy’s form of adaptation with standardized nursing language. It can therefore be suggested that this paper is one of the first publications to link basic theory and method, so that it is an innovative contribution to the professional development of the disciplines of community and neurological nursing.

A care proposal was prepared for the caregivers of individuals with PD. It took into account the adaptation of caregivers to their role as one of the basic components of quality of their life, as well as the well-being of the individual with PD and their family. It was found to be useful in modifying the degree to which caregivers adapt to the stimuli deriving from their role. Previous characterisation and nursing care studies of caregivers of patients with a chronic disease,^{8–10,19,24,28} severe dependency,^8,24 neurodegenerative disorders^17,21,22 or PD^{11,18,20,25,26} found that the predominant characteristics in these caregivers are those which define diagnoses that in this works were linked to form of role and self-concept adaptation.

The literature states that the interaction of stimuli which affect caregivers, and which arise from the cared-for person as well as the environment, generates a specific biopsychosocial profile and triggers a range of coping mechanisms that may or may not be effective. In this situation the function of a nursing professional has to focus on encouraging social interaction and social and family support, to reduce the risk of caregiver exhaustion.¹⁴ Achieving care goals involves an integrated approach to informal care, to mitigate the impact of work overload on quality of life^17,18 by implementing structured care programmes for caregivers.

As Padovani et al.²⁶ and others^5,8,18 propose, it is necessary to offer personalized care to maintain caregiver’s quality of life, reducing the risk of diseases due to overwork and permitting more efficient care of patients with PD. Care planning should include the education of informal caregivers¹⁹ and, according to Roy’s theory, this means that the nurse has to possess the knowledge, skills and expertise which will permit the caregiver to adapt to their circumstances.¹³ It is important to teach professionals in training about the care for caregivers.

The majority of studies of caregivers for individuals with neurodegenerative disorders prioritize “role function” and “self-concept” adaptation modes, and they underline the importance of psychosocial aspects of the caregiver. As the individuals being cared for have a high degree of physical and emotional dependency, nursing knowledge on adapting caregivers in physical-physiological modes and interdependence has to be increased. Lines of research aimed at promoting caregiver health have to be created, as well as implementing and assessing strategies for accompanying and monitoring the relationship between caregivers and individuals with PD by the healthcare system and non-governmental organisations.

According to Roy’s theory, informal caregivers should be considered to be an involved adaptive system in permanent contact with the person they care for; the suggestion for nursing is therefore to monitor this relationship to prevent and identify the 2 most common risks deriving from caregiver exhaustion: metal health problems and patient mistreatment.⁷ Currently, and given the increase in chronic diseases that give rise to a high level of dependency on the caregiver, the tendency is to promote self-care and learning how to live with the disease. A scale was recently validated which enables the holistic monitoring of PD patients’ capacity for acceptance, coping, independence, integration and adaptation.²⁷

Financing

The Fundación Universitaria del Área Andina Seccional Pereira.

Authors

Mónica Margarita Barón Castro: the proposal, data gathering and analysis, reporting results, the general preparation of the manuscript, editing and relevant changes until the approval of the definitive version of the manuscript.

Paulo César González Sepúlveda: data analysis, the general preparation of the manuscript, editing and relevant changes until the approval of the definitive version of the manuscript.

María Nelcy Muñoz Astudillo: the proposal, data analysis, the general preparation of the manuscript, editing and relevant changes until the approval of the definitive version of the manuscript.

Natalia González Cruz and Mónica Andrea Bernal González: participation in the search and analysis of the contents of papers and in the preparation of the paper until its definitive version.

Conflict of interests

The authors have no conflict of interests to declare.

Acknowledgements

We would like to thank the Fundación Universitaria del Área Andina for financial support of project execution, and the caregivers of individuals with Parkinson’s disease for their valuable input.