Great Expectations: A Position Description for Parents as Caregivers: Part II

Susan Sullivan-Bolyai; Kathleen A. Knafl; Lois Sadler; Catherine L. Gilliss

Pediatr Nurs. 2004;30(1)

Abstract and Introduction

Parents caring for a child with a chronic condition must attend to a myriad of day-to-day management responsibilities and activities. Part I of this two-part series (in the previous issue of Pediatric Nursing) reviewed both the adult and pediatric family caregiving literature within the context of four major categories of responsibilities: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision-making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health.. Part II presents a multifaceted list of parent caregiving management responsibilities and associated activities, and discusses nursing implications. The list was developed to facilitate "caregiving" dialogue between health care providers and families of children with chronic conditions. It is hoped that through such partnerships creative ways of educating, preparing, and supporting caregivers will be generated.

Parents of a child newly diagnosed with a chronic condition soon learn they must become skilled in a variety of caregiving areas. Part I of this series (see the previous issue of Pediatric Nursing) presented a review of the literature from both adult and pediatric family caregiving perspectives; there are many commonalities between the two. The article also described 4 major areas in which parents must become proficient: (a) managing the illness, which includes hands-on care, monitoring and interpreting signs and symptoms, as well as problem-solving and decision- making processes; (b) identifying, accessing, and coordinating resources, which involves assessing and negotiating community resources including health care providers; (c) maintaining the family unit, including balancing illness and family demands while at the same time attempting to meet the health and developmental needs of each family member; and (d) maintaining self, including physical, emotional, and spiritual health. These four categories create a great deal of work for the parents in the course of a normal week, and can result in tremendous stress, worry, and fatigue. Health care providers are not always sensitive to the burden of care that these families face on a daily basis.

The review of literature on caregiving was used to generate a list of management responsibilities and activities common among parents caring for a child with a chronic condition (see Table 1 ). The list is not all-inclusive, but reviews the scope of responsibilities that may be placed on family caregivers. As stated in Part I, many families who have a child with a chronic condition juggle all of the various individual and family activities quite well over time. However, juggling all of the responsibilities is very challenging, and without adequate support, some families may experience symptoms of burnout over time (Dokken & Sydnor-Greenberg, 1998; Zarit, Gaugler, & Jarrott, 1999).

The list of parental responsibilities presented here was developed to help sensitize health care providers to the complexity of care families must both provide and incorporate into their daily lives. It is hoped that the list will encourage dialogue among chronic care team members and veteran parents of children with chronic conditions to develop creative strategies that may assist parents to incorporate the myriad of health-related skills into their day-to-day regimens with some ease. The list may be useful in several other ways: it may provide some guidance for discharge planning, and it may be used by families and providers to assess strengths, capabilities, and educational and support needs at various points over the course of caring for a child with a chronic illness.

1 2 3

Next Section

Cite this: Great Expectations: A Position Description for Parents as Caregivers: Part II - Medscape - Jan 01, 2004.

Abstract and Introduction
Discharge Planning
Ongoing Care Management

Table 1. Parent/Caregiver Responsibilities and Activities Associated with the Day-to-Day Management of Raising a Child who has a Chronic Condition
Learning about the condition and care Develops working knowledge of disease process Develops working knowledge of treatment plan Monitoring condition & behavior Identifies subtle changes in condition and behavior Observes verbal and nonverbal indicators Uses instruments to monitor condition when appropriate Uses appropriate level of vigilance Makes accurate observations Keeps written record when appropriate Notices patterns of responses Interpreting Recognizes deviations from normal Recognizes something is "different" or wrong Recognizes seriousness of a problem Seeks explanation for unexplained signs & symptoms Asks questions to assist in developing explanation Makes correct attributions Uses a reference point in making sense of observations Considers multiple explanations for an observation Providing hands-on care Maintains adherence to treatment plan Performs personal care safely bathing feeding dressing ADLs Performs condition-related treatments safely administers medications administers treatments tube care/management stoma care/management dressings equipment care/management Provides emotional/developmental support spends time with child plays with child provides developmentally appropriate activities offers developmentally appropriate guidance, including "coaching" anticipates needs of child within a developmental context supports spiritual development Making decisions Takes into account multiple care demands Weighs competing demands Weighs the importance of conflicting priorities Attends to multiple care issues at once Thinks ahead about possible consequences of a given action Developing care routines Uses effective reminders to time actions Uses timing to coordinate care needed Develops routines to manage complex tasks Takes child's characteristics into consideration when developing routine Involves child in care as developmentally appropriate Uses a system for remembering when actions are due Has ability to take action on multiple issues at once Making treatment adjustments/problem-solving Identifies and defines problem(s) that need alternative solution(s) Decides what part of care or task needs to be altered/changed Considers possible solutions Tries multiple strategies until a solution to problem found Reacts appropriately to symptom changes Modifies routines to accommodate illness situation Modifies environment to accommodate illness situation Adjusts care to optimize comfort and symptom management, including amount of food PRN medications rest exercise Calls for expert information when appropriate Knows which health care team member to call when necessary Uses mistakes as an opportunity for learning Considers what led to mistakes, and alters what appears to be source of problem Searches for an alternative when one illness care strategy no longer works Uses creativity in problem-solving Deals with emergency situations appropriately Evaluates outcomes Guiding or coaching child in self-care: striving for interdependence versus control Teaching others how to care for child (e.g. teachers, sitters, family members) Identifying, accessing, and coordinating resources Assessing needs and strengths Takes initiative in seeking resources Seeks resources wisely: casts a wide net Seeks authoritative advice when appropriate Uses advice judiciously Weeds out erroneous, inaccurate, or inadequate advice (including internet) Persists in obtaining resources until finding what is really needed Determines which providers are most accessible, helpful, and knowledgeable Makes own needs known Considers the following resources in quest to meet child's and family units needs primary care specialized care home care services babysitting respite daycare school services social opportunities sports special camp experiences Negotiating health-related issues (ability to advocate for child & family) Expresses opinions with health care and school professionals Evaluates care received in the health care system Seeks assistance from health care team in a timely manner Works in partnership with the health care team Works in partnership with home care services Works in partnership with the school system Advocates for child and self when necessary Negotiating emergency plan Develops an emergency plan in partnership with the health care team to address: medical emergencies and complications malfunctioning of medical equipment power & electricity outages support person(s) illnesses schools/daycare closures Providing coordination of care "Concierge" or monitor for individual and family unit's physical, developmental, emotional, social, and spiritual needs Works in partnership with the health care team to develop a plan of home care Works in partnership with insurance plan on case management if appropriate Identifies family, friends, and neighbors who can offer assistance Accesses community-based resources equipment company home health agency pharmacy therapies Maintains flexibility built into coordination plan Develops back-up plans Develops re-hospitalization plan as needed Integrates primary care into care plan Identifies support groups Develops respite care plan Explores alternative-care options as appropriate Maintaining family unit Balances illness and family demands Continues to participate in family traditions, rituals, and routines Monitors family member health status Identifies family strengths Addresses individual family member & family unit developmental needs (such as child and sibling "chauffeur," helping with homework, or in some cases coordination and provision of home schooling, coordination of social and recreational sports and activities, planning family activities and vacations) Defines, and redefines, meaning of illness related to developmental milestones for the child, other family members, self, and the family unit Organizes family activities to include the child with a chronic condition Integrates "couple" time into schedule (if 2 parent family) Maintains the household (or coordinates efforts if performed by others) Household maintenance and repair Meal preparation Cleaning Laundry Errands Grocery shopping Bill paying Gardening Manages economic issues Insurance companies Equipment & medication costs Special programs such as private tutoring, pt, ot, speech programs Maintaining self Meets personal physical and mental health care needs Regular check-ups Sleep Exercise Balanced diet Weekly time out Recognition and expression of grief, other emotions Spiritual needs Expresses sense of capability in caregiving role Identifies ways of relieving day-to-day stress Addresses personal and career goals Nurtures significant-other relationship & other close friendships

Table 1. Parent/Caregiver Responsibilities and Activities Associated with the Day-to-Day Management of Raising a Child who has a Chronic Condition
Learning about the condition and care Develops working knowledge of disease process Develops working knowledge of treatment plan Monitoring condition & behavior Identifies subtle changes in condition and behavior Observes verbal and nonverbal indicators Uses instruments to monitor condition when appropriate Uses appropriate level of vigilance Makes accurate observations Keeps written record when appropriate Notices patterns of responses Interpreting Recognizes deviations from normal Recognizes something is "different" or wrong Recognizes seriousness of a problem Seeks explanation for unexplained signs & symptoms Asks questions to assist in developing explanation Makes correct attributions Uses a reference point in making sense of observations Considers multiple explanations for an observation Providing hands-on care Maintains adherence to treatment plan Performs personal care safely bathing feeding dressing ADLs Performs condition-related treatments safely administers medications administers treatments tube care/management stoma care/management dressings equipment care/management Provides emotional/developmental support spends time with child plays with child provides developmentally appropriate activities offers developmentally appropriate guidance, including "coaching" anticipates needs of child within a developmental context supports spiritual development Making decisions Takes into account multiple care demands Weighs competing demands Weighs the importance of conflicting priorities Attends to multiple care issues at once Thinks ahead about possible consequences of a given action Developing care routines Uses effective reminders to time actions Uses timing to coordinate care needed Develops routines to manage complex tasks Takes child's characteristics into consideration when developing routine Involves child in care as developmentally appropriate Uses a system for remembering when actions are due Has ability to take action on multiple issues at once Making treatment adjustments/problem-solving Identifies and defines problem(s) that need alternative solution(s) Decides what part of care or task needs to be altered/changed Considers possible solutions Tries multiple strategies until a solution to problem found Reacts appropriately to symptom changes Modifies routines to accommodate illness situation Modifies environment to accommodate illness situation Adjusts care to optimize comfort and symptom management, including amount of food PRN medications rest exercise Calls for expert information when appropriate Knows which health care team member to call when necessary Uses mistakes as an opportunity for learning Considers what led to mistakes, and alters what appears to be source of problem Searches for an alternative when one illness care strategy no longer works Uses creativity in problem-solving Deals with emergency situations appropriately Evaluates outcomes Guiding or coaching child in self-care: striving for interdependence versus control Teaching others how to care for child (e.g. teachers, sitters, family members) Identifying, accessing, and coordinating resources Assessing needs and strengths Takes initiative in seeking resources Seeks resources wisely: casts a wide net Seeks authoritative advice when appropriate Uses advice judiciously Weeds out erroneous, inaccurate, or inadequate advice (including internet) Persists in obtaining resources until finding what is really needed Determines which providers are most accessible, helpful, and knowledgeable Makes own needs known Considers the following resources in quest to meet child's and family units needs primary care specialized care home care services babysitting respite daycare school services social opportunities sports special camp experiences Negotiating health-related issues (ability to advocate for child & family) Expresses opinions with health care and school professionals Evaluates care received in the health care system Seeks assistance from health care team in a timely manner Works in partnership with the health care team Works in partnership with home care services Works in partnership with the school system Advocates for child and self when necessary Negotiating emergency plan Develops an emergency plan in partnership with the health care team to address: medical emergencies and complications malfunctioning of medical equipment power & electricity outages support person(s) illnesses schools/daycare closures Providing coordination of care "Concierge" or monitor for individual and family unit's physical, developmental, emotional, social, and spiritual needs Works in partnership with the health care team to develop a plan of home care Works in partnership with insurance plan on case management if appropriate Identifies family, friends, and neighbors who can offer assistance Accesses community-based resources equipment company home health agency pharmacy therapies Maintains flexibility built into coordination plan Develops back-up plans Develops re-hospitalization plan as needed Integrates primary care into care plan Identifies support groups Develops respite care plan Explores alternative-care options as appropriate Maintaining family unit Balances illness and family demands Continues to participate in family traditions, rituals, and routines Monitors family member health status Identifies family strengths Addresses individual family member & family unit developmental needs (such as child and sibling "chauffeur," helping with homework, or in some cases coordination and provision of home schooling, coordination of social and recreational sports and activities, planning family activities and vacations) Defines, and redefines, meaning of illness related to developmental milestones for the child, other family members, self, and the family unit Organizes family activities to include the child with a chronic condition Integrates "couple" time into schedule (if 2 parent family) Maintains the household (or coordinates efforts if performed by others) Household maintenance and repair Meal preparation Cleaning Laundry Errands Grocery shopping Bill paying Gardening Manages economic issues Insurance companies Equipment & medication costs Special programs such as private tutoring, pt, ot, speech programs Maintaining self Meets personal physical and mental health care needs Regular check-ups Sleep Exercise Balanced diet Weekly time out Recognition and expression of grief, other emotions Spiritual needs Expresses sense of capability in caregiving role Identifies ways of relieving day-to-day stress Addresses personal and career goals Nurtures significant-other relationship & other close friendships

Comments

Commenting is limited to medical professionals. To comment please Log-in.

Comments on Medscape are moderated and should be professional in tone and on topic. You must declare any conflicts of interest related to your comments and responses. Please see our Commenting Guide for further information. We reserve the right to remove posts at our sole discretion.

processing....

Great Expectations: A Position Description for Parents as Caregivers: Part II

Abstract and Introduction

Tables

Tables

Authors and Disclosures

Authors and Disclosures

Comments

Email This

Feedback