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Living with Dysphagia in the Community: Caregivers “do whatever it takes.”

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Abstract

The psychological and psychosocial impacts of dysphagia on patients are well documented, however, caregiver perspectives have received limited attention and findings have been predominantly in the head and neck cancer population. The aim of this study was to understand the experience of supporting a person with dysphagia of varying aetiologies in the community from the caregiver perspective. Using a qualitative descriptive approach grounded in phenomenology, caregivers of a person with dysphagia living at home were interviewed (n = 15). Thematic analysis revealed an overarching theme of “You do whatever it takes,” describing the caregiver experience of supporting a family member/friend with dysphagia at home. This theme was underpinned by three subthemes where caregivers described (1) being a caregiver; (2) support networks; and (3) practicalities of living with dysphagia. Caregivers voiced a range of pertinent issues experienced when caring for a family member/friend with dysphagia including how personal attributes and life experience impact the caregiver role. Demonstrated through the practical and emotional supports caregivers provided, it was apparent they are instrumental in supporting a family member/friend with dysphagia to live at home and in the community successfully. Through understanding the caregiver experience, health professionals will be in a better position to involve and support caregivers who play a vital role in those living with dysphagia in the community. Incorporating caregivers as direct recipients of dysphagia services will ensure the practical and psychosocial needs of caregivers are addressed, enabling optimal care for people with dysphagia living at home.

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Acknowledgements

The authors wish to acknowledge the wonderfully generous caregivers who so openly shared their experiences for this research. Thanks also go to research assistants, Pooja Gandhi, Judy Yushan Su, Lauren Rodgers, and Maddison Napier who transcribed the interviews.

Author information

Authors and Affiliations

  1. Menzies Health Institute Queensland, Griffith University, Gold Coast Campus, Southport, QLD, 4222, Australia

    Simone R. Howells, Petrea L. Cornwell & Pim Kuipers

  2. School of Allied Health Sciences, Griffith University, Gold Coast Campus, Southport, QLD, 4222, Australia

    Simone R. Howells & Petrea L. Cornwell

  3. Centre for Functioning and Health Research, Metro South Hospital and Health Service, PO Box 6053, Buranda, QLD, 4102, Australia

    Elizabeth C. Ward & Pim Kuipers

  4. School of Health and Rehabilitation Sciences, The University of Queesland, St Lucia Campus, St Lucia, QLD, 4072, Australia

    Elizabeth C. Ward

Authors
  1. Simone R. Howells
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  2. Petrea L. Cornwell
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  3. Elizabeth C. Ward
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  4. Pim Kuipers
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Corresponding author

Correspondence to Simone R. Howells.

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Appendix

Appendix

Interview Topic Guide

Overall objective: to understand the experiences of caregivers who are managing dysphagia at home.

This interview guide aims to address the following research questions:

  1. 1.

    How does dysphagia impact on the lives of caregivers?

  2. 2.

    What do caregivers perceive to be the barriers, enablers, and key issues to managing their dysphagia while living at home?

  3. 3.

    What has been the nature of the community-based speech pathology services clients and caregivers have received?

  4. 4.

    What do caregivers want from community-based speech pathology services?

Demographic Questions

  • Gender

  • Age

  • Employment status (in paid employment / not in paid employment)

  • Months caring for person with dysphagia

  • Nature of relationship with person with dysphagia? (e.g., married, de facto, parent/child, etc.)

  • Years of relationship

  • X’s current diet and fluid recommendations

  • What services have you and X accessed for dysphagia previously and currently? When? How many sessions?

Commence interview with introduction of self and thank the participant for agreeing to partake in study. Provide participant with a brief overview of the interview, presence of recorder, anonymity, and ask if they have any questions.

Dysphagia at Home Experience Questions

Question 1: Tell me about X’s eating and drinking and mealtimes before the [insert condition. E.g., stroke].

Prompts if needed:

  • • Favorite foods/drinks

  • • Mealtime routines

  • • Mealtimes at home vs at a friend/family home vs out/in public

Question 2: Tell me what it is like supporting someone living with swallowing difficulties and describe the impact dysphagia has on your life.

Prompts if needed:

  • • Key issues

  • • Feelings

  • • Challenges/barriers

  • • Things that have made living with dysphagia easier/enablers

  • • Experience of support services

  • • Burden of treatment/disease

  • • Social/relationship impact (with person with dysphagia as well as friends and family)

  • • Psychological/emotional impact

  • • Health/medical impact

  • • Mealtimes—at home, with friends/family, in public

Question 3: Tell me about how you have adjusted to supporting X’s dysphagia including any strategies you use or have used.

Prompts if needed:

  • • Environments (home vs family/friend house vs out/in public)

  • • Mealtimes

  • • Social supports (e.g., support groups)

  • • Modifications (e.g., to food/drink/mealtimes)

  • • Therapies

  • • Relationships (e.g., roles—how have these changed)

Question 4: What are some things that are an obstacle or problematic for you as you try and support X and his/her dysphagia at home?

Prompts if needed:

  • • Key issues

  • • Environments (home vs family/friend house vs out/in public)

  • • Relationships (e.g., roles—how have these changed; family/friends—inc perceptions)

  • • Access issues (e.g., financial, transport, education)

  • • Speech pathology services

  • • Other health provider services

Question 5: What are some things that make it easier for you as you try and support X and his/her dysphagia home?

Prompts if needed:

  • • Key issues

  • • Environments (home vs family/friend house vs out/in public)

  • • Relationships (e.g., roles—how have these changed; family/friends—inc perceptions)

  • • Access issues (e.g., financial, transport, education)

  • • Speech pathology services

  • • Other health provider services

Question 6: Tell me about the speech pathology services you have received for X’s dysphagia.

Prompts if needed:

  • • Accessing services (inc process), discharge from service (inc re-entry if needed)

  • • Frequency (once off vs regular)

  • • Nature of input (assessment, therapy, education)

  • • Satisfaction with services

  • • Aspects that were helpful (e.g., provision of samples, sharing of recipes, having the sessions at home)

  • • Aspects that were not so helpful (e.g., not being told enough information, being told not to eat something that I wanted to eat)

Question 7: If you could design the services and supports received for dysphagia, tell me what they would look like.

Prompts if needed:

  • • How to access the service

  • • Where the service happens (e.g., in home, outside of home)

  • • Scope of service (e.g., frequency, social interaction with others with dysphagia)

Question 8: What do you think would make supporting and caring for someone with dysphagia easier?

Prompts if needed:

  • • Service changes

  • • Family/personal circumstance changes (inc financial)

Would you like to add anything else?

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Howells, S.R., Cornwell, P.L., Ward, E.C. et al. Living with Dysphagia in the Community: Caregivers “do whatever it takes.”. Dysphagia 36, 108–119 (2021). https://doi.org/10.1007/s00455-020-10117-y

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