Well Siblings of Technology-Dependent

Children: Forgotten Children?

September 13, 2012Valerie Boebel Toly, PhD, RN, CPNP,

Carol M. Musil, PhD, RN, FAAN, & John C. Carl, MD

Background & Significance• Technological and scientific advances over the past 25

years have improved the survival of children but has resulted in a dependency on technology and home care for continued survival.

• Technology assists children to resume a more “normal” life but frequently results in adverse consequences for the child and family (social-emotional, economic, and care burdens).

• Little evidence exists that examines the impact of caring for these children at home on their well siblings.

Study Purpose

• The purpose of this study was to examine the well sibling response to living in a family with a child dependent on special medical technology such as a mechanical ventilator, feeding tube, oxygen, or intravenous medication/nutrition.

Methodology: Design

• Qualitative design- content analysis• Tape recorded open-ended interviews• Interviews transcribed verbatim• Interview question was part of a larger

quantitative follow-up study (N=82) that examined family functioning over time

Methodology: Research Question

• “Tell me what it’s like for your other children living in a family with a child who has special technology needs?”

Methodology: Sample

• Convenience sample of mothers (primary female caregiver) recruited from outpatient clinics at Rainbow Babies & Children’s Hospital in Cleveland, Ohio

• Inclusion criteria: – Mothers who cared for a technology-dependent

child and had other children 18 years or younger residing in the home.

Methods: Analysis Plan

• Transcription accuracy was verified by two research team members

• Content analysis performed– Coding conducted separately by two research

team members– Major themes identified– Confirmation of findings by qualitative research

expert

SampleSample Characteristics

of Tech. Dep. Children (N=60)

n (%)

OTA (1987) Group

Group 0 5 ( 8)

Group 1 6 (10)

Group 2 7 (12)

Group 3 42 (70)

Age of Child

5 yrs 25 (42)

6 - 10 yrs 21 (35)

11 - 16 yrs 14 (23)

Sample Characteristicsof Mothers (N=60)

n (%)Race

Hispanic 4 (6.7)African Amer. 10 (16)Caucasian 45 (75)Asian 1 (1.6)

Age of Mothers21 - 30 6 (10)31 - 40 34 (57) 41 20 (33)

Family Income $40K 15 (25)$41 – $80K 29 (48) $81K 15 (25)unknown 1 ( 2)

Study Results

• 75% of mothers caring for a technology-dependent child also had other children under 18 years living in the home– 77% of families had 1-2 well siblings– 23% of families had 3-7 well siblings

• Participant’s responses averaged 2.5 minutes in length (range: 26 seconds to 15 minutes, 30 seconds)

Themes Identified

• Upside (Positive) for Well Siblings:– Demonstrated increased empathy, sensitivity,

patience with others– Displayed greater sense of maturity and

responsibility“… I’ve seen him be more mature than what he’s needed to be…and definitely more compassionate…he has a different understanding of children and death and sickness than other kids his age.”

Upside (Positive) for Well Siblings

• “I just think it makes him more sensitive and more appreciative of people.”

• “She treats other people with difficulties or physical impairments like everybody else…”

• “They’ve learned a lot…to love people that aren’t perfect…perfect health or don’t maybe look normal…with the stress and the issues comes the benefits…learning that people are different and you have to care and love everybody.”

Themes Identified

• Downside (Negative) for Well Siblings:– Resentment due to frequent disruption of plans– Isolation– Worry over ill sibling’s fragile health– Decreased parental time and attention“I have a 7-year-old who feels like she doesn’t get the attention that she needs and that (TD child) always comes first, that she’s always last…She I believe is resentful at times.”

Down side (Negative) for Well Siblings

• “I think that he gets frustrated frequently…he doesn’t get the attention that the younger with special technology needs does.”

• “They tend to be more isolated because I am tending to their brother…they don’t get near as much attention in our family as I would probably…if the situation were different.”

• “Sometimes my daughter feels like she is put on hold. …Like if I’m doing a feeding or if there’s a complication and I have to take care of that issue, she has to wait, and I don’t think that’s necessarily easy for her but she handles it well.”

Themes Identified

• Established “New Normal”– Fit technology-dependent child’s care and

treatment into their family routine to decrease family disruption

– Assists with adjustment of well sibling“I think you just adjust your life balance so then you don’t even think about things that you can’t do.”“He just, you know, ‘That’s my sister and that’s the way she is, and that’s normal for us’.”

Established “New Normal”

“So as long as we’ve included them and sort of made them a part of it, you know this is truly all they’ve ever known…they’re comfortable with her and still treat her as a, I think, normal sibling that they run around with and rough house with and play with.”“My response…was crucial…so I think that’s key and it helps to establish a new sense of normal for them. That’s what we have to strive for. When you have a kid with special needs, that normal is shattered. It’s never going to be back, so you develop a new sense of normal, what’s normal for our family.”

Mothers’ Tips for Helping Well Siblings Cope

• Interpret and reframe the situation positively for well-siblings

• Obtain respite care• Take separate outings with well siblings only• Find activities the family can do together (well

siblings and technology-dependent child)• Help well siblings be involved in outside activities• Ask for help with well siblings and household tasks

Clinical Implications

• Address need for comprehensive family support and education– Include well siblings in support, education– Capitalize on family strengths particularly

normalization• Education regarding practical application of care and

treatments in the home (organizational strategies, flexibility, how to transport child for outings)

Future Directions

• Interviews with well siblings of technology-dependent children

• Intervention study to address mothers’ high level of psychological distress

Acknowledgements

• This study was funded by Sigma Theta Tau International, Small Grant

• Supported by Grant UL 1RR024989 The Clinical and Translational Collaborative at Case Western Reserve University, Dahms Clinical Research Unit

• At the time this study was conducted the first author was supported by a postdoctoral fellowship from NIH/NINR T32-NR009761 Multiple Morbidities in Vulnerable Populations Nurse Scientist Training

A Special Thank You to Mothers Who Shared Their Stories and Gave a Window into their World!