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Family Member Distress: A New Screening Tool for Nursing Assessment AQIO Le 26 novembre, 2014 Anita Mehta, Ph.D. Marc Hamel, Ph.D. Programme psychosocial en oncologie Centre universitaire de santé McGill (CUSM) Montréal, Canada Reconnaissances • Le Fonds de développement de la recherche en sciences infirmières (Nursing Research Development Fund), soutenu grâce à la générosité de la Fondation Newton et grâce à des fonds de contrepartie versés par les fondation de l'Hôpital général de Montréal, de l'Hôpital Royal Victoria et de l'Hôpital de Montréal pour enfants (Centre universitaire de santé McGill) Histoire • Clinical and research data indicate that cancer affects the whole family • Despite this fact, little data is available on the distress experience by family members • The research that is available suggests that family members of cancer patients often experience distress levels comparable or higher than those of the patients Histoire • Research shows that patients ’ physical, cognitive, emotional, and social distress contributes to the primary caregiver’s own increase in distress • Empirical studies have shown that family caregivers are at risk for major stress, anxiety, and depression regardless of gender, age, and ethnicity, potentially leading to negative physical and financial repercussions • Family members who are responsible for the care of the patient also must manage sources of distress such as their own anticipatory grief, anxiety, depression, and fears “ “Excuse me…Is this for me to fill out, or my wife?” Why a new tool? • We must be able to screen and identify the main sources of concerns related to the family members’ distress and experience • There are no existing tools that specifically identifies the sources of distress experienced by family members of cancer patients • A proper and timely screening of distress represents a critical intervention that helps identify those family caregivers at risk for psychosocial complications Purpose of the Study • To develop a screening tool specifically designed to identify the sources of distress in family members 1) Development of a Family Problem Checklist (FPC) 2) Test its psychometric properties (i.e. validity) Methods: Phase 1 Tool Development: Item Generating • A three step process was followed for scale development (item selection) of the Family Problem Checklist-FPC 1.Literature Review 2.Focus Groups (healthcare professionals) 3.Focus Groups (family members) Family Problem Checklist: Sources of Distress Relationships (social-family interactions) •Trust with the physician •Intimacy with patient •Challenging relationship with the patient Practical •Finances • Negotiating the system •Transportation •Lack of support from family-friends •Legal •Work-Studies •Household duties Physical health •Attention span/memory •Fatigue/sleep •Frailty/weakness •Concentration •Appetite Spiritual •Loss of hope •Questioning my beliefs –faith •Making sense of this (meaning) •Loss of faith •Loss of meaning and purpose •Patient care •Home care •Coordination of care •Managing patient symptoms •Changing health status •Care demands •Making medical decisions for patient •Giving medication Communication •Communicating with patient •Communicating with other family members •Communicating with medical team •Unsure how to talk about certain things (e.g. death) Family Problem Checklist: Sources of Distress Emotional • Anger • Fear • Sadness • Stress • Nervous • Isolation/alone • Hope • Frustration • Guilt • Lack of confidence in ability to care for patient • Shock • Helplessness • Anxiety • Worry • Feeling Overwhelmed • Difficulty accepting diagnosisprognosis Self-Care •No time for self Information •Unsure how and where to access care •Can’t process information •Can’t manage/organize information •Lack of information related to the disease •Lack of information related to treatments •Lack of information related to prognosis Other •Dealing with patient’s distress •Coping Methods: Focus Group-Healthcare Professionals • An electronic invitation sent to MUHC health care professionals working in oncology • Key players in oncology including: physicians, nurses, psychiatrists, nutritionists, social workers, pastoral care workers, and psychologists • moderated by research assistant and audio recorded Methods: Focus Group-Healthcare Professionals The goals of these focus groups: 1) Review the preliminary items generated from the literature review 2) Solicit their suggestions of additional items 3) Obtain an overall impression of the FPC with respect to wording Methods: Focus Groups- Family Members • Solicited feedback on the FPC items derived from the literature review and earlier focus groups made up of the health care professionals • Family members were recruited from the McGill University Health Centre (MUHC) Psychosocial Oncology (PSO) program. • Approached by the PSO ’ s administrative assistant who presented the study brochure • Facilitated by research assistant and audiotaped Feedback on the checklist: Family Members • “It’s much better than the other one” (Canadian Problem Checklist) • “…but overall its really more geared towards [me]… I can answer it on behalf of myself…it’s much clearer” • “…it says ‘hey, family, you know, we support the family’ “ • You’ve got to nail it down to the individual itself. And you know, realising full well that the person that’s suffering from the disease is into their own thing. But the person on the side is also suffering with a lot these problems.” Sources of Distress: Family Members • “Time management, more than anything else.” • “Physical exhaustion…I have to start taking care of me….But the mental aspect too, you know. My wife is suffering from cancer. What do I do? I mean the negative thoughts, you have to sort of dispense with them very quickly.” • “…that’s clear signs of depression. We all, I mean I get it, there’s no question. I’m fighting it, I’m fighting it everyday. • “[all this]pre-mourning stuff…” Sources of Distress: Family Members • “So that I’m not leaving him alone, because I felt guilty leaving…so I’m still taking care of myself [at home] and that guilt of going away is diminished. You know, because I schedule things at a time when he is resting. Or you know, and I’m home so if some crisis should occur, I’m right there. …. • “…because of energy, I mean just washing the dishes. I don’t have the desire. It’s just too much time is spent with him that I never… and it’s always sad.” Family Problem Checklist: Please check all of the following items that have been a concern or problem for you in the past week, including today Practical Finances Legal Issues Transportation/Parking Household duties Taking care of others Work/Studies Managing my own time Information About the disease About the treatment About prognosis About supportive resources Communication Acting as a spokesperson Difficulty talking about certain topics Emotional Sadness Anger/frustration Anxiety/worry Guilt Feeling overwhelmed Helplessness Shock Resentment Social Feeling alone Lack of support Expectations from others Relational Change in social roles Relationship with patient Relationship with health care team Family dynamics Spiritual Faith Meaning and purpose Hope Death/Dying Self-Care* Sleep Appetite Concentration/Memory Fatigue/Weakness Intimacy/Sexuality My own physical health problems My own mental health problems Finding time for myself Coping Patient Care Managing patient symptoms Managing patient medications Organising patient appointments Caring for the patient at home Self-confidence as a caregiver Phase 2: Testing and Validation • The revised FPC undergoing psychometric testing • A sample of 106 family were recruited in a second phase of this study to conduct several psychometric tests for the FPC 1) Demographic Data 2) Frequencies of relevancy of item 3) Factor Analysis 4) Qualitative questions Demographic Data 106 FAMILY MEMBERS Mean age 49.71 Gender: • Male: 35.6% • Female: 64.4% Relationship: Spouse 44.3% • Child 32.1% • Parent 5.7% • Other 17.9% Education: • University: 46.7% • College 27.4% Ethnicity: • Italian: 19.4% • French Canadian 14.3% • Canadian 12.2% 0-10% 11-20% 21-30% 31-40% • • LEGAL ISSUES •HOUSEHOLD DUTIES • FINANCES TRANSPORTATION PARKING • RESENMENT •WORK/STUDIES • • • FEELING ALONE • ACTING AS A SPOKESPERSON • • LACK OF SUPPORT • DIFFICULTY TALKING ABOUT CERTAIN TOPICS • CHANGE IN SOCIAL ROLES SADNESS TAKING CARE OF OTHERS • ANXIETY • MANAGING MY OWN TIME • RELATIONSHIP WITH PATIENT • ANGER FRUSTRATION • CARING FOR THE PATIENT AT HOME • MEANING AND PURPOSE • HELPLESSNESS • FEELING OVERWHELMED • APPETITE • SHOCK • FAMILY DYNAMICS • INTIMACY/SEXUALITY • EXPECTATIONS FROM OTHERS • HOPE • MY OWN PHYSICAL HEALTH PROBLEMS • RELATIONSHIP WITH HEALTH CARE TEAM • DEATH/DYING • • FAITH CONCENTRATION/MEMORY • SLEEP • FATIGUE MY OWN MENTAL HEALTH PROBLEMS • COPING • FINDING TIME FOR MYSELF • MANAGING PATIENT’S SYMPTOMS • MANAGING PATIENT’S MEDICATIONS • SELF-CONFIDENCE AS A CAREGIVER • ORGANISING PATIENT’S APPOINTMENTS • INFORMATION • ABOUT RESSOURCES • •GUILT 41-50% INFORMATION ABOUT DISEASE • INFORMATION ABOUT TREATMENT • INFORMATION ABOUT PROGNOSIS Factor 1 Information about the disease Information about the treatment Information about the prognosis Information about supportive resources Difficulty talking about certain topics Factor 4 Managing patient symptoms Managing patient medications Transportation/parking Caring for the patient at home (F3) Self-confidence as a caregiver (F3) Factor 5 Expectations from others Relationship with patient Relationship with health care team (F1; F9) Family dynamics My own mental health problems Factor 2 Anxiety/Worry (F1) Sadness Anger/frustration Guilty Feeling overwhelmed Shock (F1; F10) Helplessness Resentment Feeling alone (F9) Lack of support (F5) Change in social roles (F4) Intimacy/sexuality (F10) Factor 6 Sleep (f4) Appetite Concentration/memory Fatigue/weakness Factor 3 Household duties/Chores Taking care of others Work/studies Managing my own time (F8) My own physical health problems (F5) Factor 7 Faith Meaning and purpose Hope Coping (F5) Factor 9 Legal Issues Factor 8 Death/dying Finding time for myself (F2) Factor 10 Finances Acting as a spokesperson (F1) Phase 2: Testing and Validation Qualitative questions 1. Can you describe how long it took you to complete the Family Members Problem Checklist? 2. Can you describe any concerns or stressors that were not identified on the checklist you completed 3. Can you describe if the checklist was easy to read? For example, were there some words that were difficult to understand? 4. Is there anything you feel should be changed? Results: Phase 2 2. Can you describe any concerns or stressors that were not identified on the checklist? • “None. Not at all” • “No checklist very complete” • “Change with relationships in the family” • “Fertility concerns, we are both quite young” • “Expectations we have of ourselves” • “Lack of understanding of the implications of taking care of a sick relative by people close to the caregiver.” • “Concurrent stressors” • “Family member roles” Results: Phase 2 3. Can you describe if the checklist was easy to read? For example, were there some words that were difficult to understand? • “Very easy, it’s well done” • “It was easy to read” • “Perfectly clear” • “Some ambiguity.” (did not state where, however) • “Thoughtful but easy” Results: Phase 2 4. Is there anything you feel should be changed? • “the checklist covers most concerns one family member might have” • “I don’t see anything about where the patient is in their treatment. For example, I was much more stressed at the beginning.” • “Maybe making available on electronic form like a tablet” • “Yes, must include questions about role” • “French version of distress graphic” Comparison of Checklists: What did we learn? • There are some concerns or sources of distress that are applicable to both the patient and the family caregiver • There are specific concerns that are unique to family caregivers that are not identified on the current family problem checklist • Family members reported that they felt their distress was validated, and that there was support available to them Future Directions • Further research and fine tuning of the checklist (ex. removal of redundant items) • Further validation of the checklist • Translation into French • Endorsement and support to have it used at other sites Conclusion • Family members reported that the Checklist was easy to complete • Family members reported they felt the Family Member Problem Checklist is relevant to their personal experiences • Further testing needs to be done to determine if the new tool is a valid one to accurately screen family members for their sources of distress