abstract: 'Background: Family caregivers may experience difficulty maintaining

  meaningful contact with a relative with advanced dementia. Nevertheless,

  some family caregivers prefer to remain involved in the care of their

  relative after admission to a nursing home. Family involvement in the

  care is important but little is known about how this works in practice

  and what exactly is needed to improve it. Objectives: To examine

  experiences of family caregivers, staff and volunteers with family

  caregiver participation in the Namaste Care Family program, a

  psychosocial intervention to increase quality of life for people with

  advanced dementia that may help family caregivers to connect with their

  relative. Further, we aimed to examine facilitators of and barriers to

  family participation. Design: Descriptive exploratory qualitative design

  using semi-structured interviews. Setting: Ten nursing homes in the

  Netherlands. Participants: Ten family caregivers, 31 staff members and 2

  volunteers who participated in the Namaste Care Family Program. Methods:

  Qualitative interview study using thematic analysis. Interviews were

  held with family caregivers, staff members, and volunteers about their

  experiences with the Namaste Care Family program. Results: In general,

  family caregivers experienced their involvement in the Namaste Care

  Family program as positive, particularly the meaningful connections with

  their relative. However, putting family involvement into practice was

  challenging. We identified three themes covering facilitators for and

  barriers to participation: (1) Preferences of family caregivers for

  activities with their relative (Activities): practical activities

  matching one''s own interests were seen as facilitating, while perceived

  lack of knowledge and reluctance to engage with other residents were

  barriers. (2) Communication between family caregivers, staff and

  volunteers (Communication): providing clear information about the

  program to family caregivers facilitated their involvement. Feeling

  insecure inhibited family involvement. (3) Personal context of family

  caregivers (Personal circumstances): feeling fulfillment and being

  appreciated facilitated involvement. Older age, having a family of their

  own, a job and complex family relations were barriers to family

  caregiver involvement. Conclusion: To optimize family involvement, it is

  important to adopt a family-centered approach and provide training and

  guidance. Making a personal, comprehensive plan with family caregivers

  and offering them guidance can help them overcome their uncertainty and

  remove barriers to being more involved with a care program aiming to

  improve the quality of life of their relative. Also recommended is

  training for staff to improve communication with family caregivers. The

  Namaste study is registered with the Netherlands Trial Register

  (NTR5692). (c) 2021 The Author(s). Published by Elsevier Ltd. This is an

  open access article under the CC BY-NC-ND license (

  http://creativecommons.org/licenses/by-nc-nd/4.0/ )'
affiliation: 'van der Steen, JT (Corresponding Author), Leiden Univ, Med Ctr, Dept
  Publ Hlth \& Primary Care, Hippocratespad 21,Gebouw 3,Postal Zone V0-P, NL-2300
  RC Leiden, Netherlands.

  Tasseron-Dries, Petra E. M.; Smaling, Hanneke J. A.; Achterberg, Wilco P.; van der
  Steen, Jenny T., Leiden Univ, Med Ctr, Dept Publ Hlth \& Primary Care, Hippocratespad
  21,Gebouw 3,Postal Zone V0-P, NL-2300 RC Leiden, Netherlands.

  Tasseron-Dries, Petra E. M., Stichting Warande Nursing Home Org, Postbus 185, NL-3700
  AD Zeist, Netherlands.

  Smaling, Hanneke J. A.; Doncker, Sarah M. M. M.; van der Steen, Jenny T., Vrije
  Univ Amsterdam, Med Ctr, Amsterdam Publ Hlth Res Inst, Dept Publ \& Occupat Hlth,
  Boelelaan 1117, NL-1081 HV Amsterdam, Netherlands.

  Doncker, Sarah M. M. M., Amsterdam UMC, Locat AMC, Dept Med Psychol, Meibergdreef
  9, NL-1105 AZ Amsterdam, Netherlands.'
article-number: '103968'
author: Tasseron-Dries, Petra E. M. and Smaling, Hanneke J. A. and Doncker, Sarah
  M. M. M. and Achterberg, Wilco P. and van der Steen, Jenny T.
author-email: 'P.E.M.Tasseron@LUMC.nl

  H.J.A.Smaling@lumc.nl

  S.Doncker@amsterdamumc.nl

  W.P.Achterberg@lumc.nl

  JTvandersteen@lumc.nl'
author_list:
- family: Tasseron-Dries
  given: Petra E. M.
- family: Smaling
  given: Hanneke J. A.
- family: Doncker
  given: Sarah M. M. M.
- family: Achterberg
  given: Wilco P.
- family: van der Steen
  given: Jenny T.
da: '2023-09-28'
doi: 10.1016/j.ijnurstu.2021.103968
earlyaccessdate: JUL 2021
eissn: 1873-491X
files: []
issn: 0020-7489
journal: INTERNATIONAL JOURNAL OF NURSING STUDIES
keywords: 'Dementia; Experiences; Family caregivers; Nursing home; Quality of life;

  Family involvement; Qualitative research'
keywords-plus: 'OLDER-PEOPLE; CAREGIVERS; RESIDENTS; RELATIVES; COMMUNICATION;

  INTERVENTION; WORKING'
language: English
month: SEP
number-of-cited-references: '41'
orcid-numbers: 'van der Steen, Jenny T./0000-0002-9063-7501

  Achterberg, Wilco/0000-0001-9227-7135

  Smaling, Hanneke/0000-0002-7836-431X'
papis_id: 388db41a26eae79a0361c1140a69d86c
ref: Tasserondries2021familyinvolvement
researcherid-numbers: 'van der Steen, Jenny T./E-5118-2016

  Smaling, Hanneke/Y-7412-2018'
times-cited: '10'
title: 'Family involvement in the Namaste care family program for dementia: A qualitative
  study on experiences of family, nursing home staff, and volunteers'
type: Article
unique-id: WOS:000685438800009
usage-count-last-180-days: '5'
usage-count-since-2013: '29'
volume: '121'
web-of-science-categories: Nursing
year: '2021'