Listening to, learning from & supporting the informal caregiver an innovative project in nurse education

‘Mantelluisteren’ ‘listening to family caregivers’ If I ask you to listen to me and you start giving me advice, you are not doing what I ask of you. If I ask you to listen to me and you start telling me, why I should not feel what I feel, you are not taking my feelings seriously. If I ask you to listen to me and you think that you have to do something to solve my problems, you are abandoning me, however strange that may seem. So, please, just listen to me and try to understand me. And if you want to talk, wait a moment, I promise you that I for my part will listen to you (freely quote from Leo Buscaglia)

Defining ‘mantelzorg’? ‘Mantelzorg’ difficult to translate extra care for a dependent recipient, given by one or more members of their immediate environment, arising out of a social relationship, outside the context of organized volunteering or professional caregiving. informal care provided by family members, friends and neighbors Patient Informal care Professional care and supportservices

Informal care in Flanders, Belgium Because of a variety of reasons home care is (and will be in the future) an important health care field. The wellbeing of a community dwelling patient is often depending on the (physical, mental and social) condition of the family caregiver. Seeking ways to support family caregivers is therefore an important subject to study. Frequency of care to sick, disabled or elderly relatives, acquaintances or neighbors in the last 12 months (in%) SVR-report, 2010 Vanderleyden L. & Moons D.

‘Mantelluisteren’ ‘Listening to’ informal caregivers Project in nurse education (first year students) Psychosocial support Home visits to family caregivers The family caregiver as coach in the learning process of the nurse student Partners:

Projectgoals Experiencing and learning about homecare: practical experience in a guest family Experiencing and learning about psychosocial care: learning from experts by experience Psychosocial support of family caregivers: recognition, appreciation and giving encouragements Students learning process

Organization Course week: theoretical Visit 1: the recipient of care Visit 2: the informal care Visit 3: the professional care Visit 4: the interpersonel relationship Endgathering (social event & evaluation)

Theoretical course week Home care Communication theory & skills Presence approach Contextual relief He suffers from dementia She has it

Visit 1: the patient Meeting Nursing assesment of the patient –Functional lifepatterns Specific deseases

Visit 2: the informal care Definition Motives for caring: naturally, prefer to stay home, no alternative and relationship Emotional and relational experiences of the caregiver: assertiveness, changed role patterns, grief and balance between stressors and coping skills Family and immediate surroundings

Visit 3: the professional care Professional support in homecare –Assistance –Financial support –Services 2 NANDA nursing diagnoses –Overpressure of the family caregiver –Risk of overpressure of the family caregiver

Visit 4: the interpersonel relationship Lifestories Rounding up Evaluation Invitation endgathering

Endgathering

Evaluation of the project Informal caregivers 55/65 General experience: 55 good to very good (majority is participating again) Confirmed in experience and expertise: 51 Direct support from the students: 35 Organization of the project: 52 good to very good Students 59/65 Content + Unique, practical, experience-based - Course week very theoretical Process + Responsibility students - Busy period Evaluation + involvement family caregiver - Different evaluations

Abstract: Because of a variety of reasons home care is (and will be in the future) an important health care field. Benefits of seeking to prolong the patients staying in their own environment are well documented, as is the high burden on all parties involved. The wellbeing of a community dwelling patient is often depending on the (physical, mental and social) condition of the family caregiver. As known from numerous studies, most of these caregivers suffer a high burden because of a thorough turnover in family role patterns. Seeking ways to support family caregivers is therefore an important subject to study. Notwithstanding the burden on the family caregivers, they have established important expertise in caring for patients mostly unrecognized by other people even health care professionals. In 2007, the University College West-Flanders nurse education program initiated a project in which nursing students were performing home visits to family caregivers. Throughout these visits the students experienced and learned in practice about supporting family caregivers by using: recognition, appreciation and giving encouragement. These home visits were besides targeted support also active learning moments in which the family caregivers took up a role as coach and therefore were confirmed in their experience and expertise.